In 2019, emergency medicine physician and historian Luke Messac was working as a medical resident. He had heard about hospitals suing their own patients over unpaid medical bills, so he decided to investigate whether the hospitals where he worked were doing the same.

It turns out they were.

“The care I was delivering to patients was resulting in them showing up in court, or having their wages garnished, or signing up for a payment plan that they would be paying for the better part of a decade,” said Messac.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with Messac about his book, “Your Money or Your Life: Debt Collection in American Medicine,” and how people working in health care can try to reform these practices.

Dan Weissmann

@danweissmann

Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.

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Emily Pisacreta
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Adam Raymonda
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Ellen Weiss
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Transcript: ‘Your Money or Your Life’: This Doctor Wrote the Book on Medical Debt

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there. A couple years ago, I got in touch with a guy who’d been posting about this show on Twitter.

Luke Messac: Hi, yeah, my name is Luke Messac.

Dan: Luke is a doctor. He’s an instructor of emergency medicine at Harvard. And he’s a Ph.D. historian.

He told me he was writing a history of something we cover a lot on this show. Medical debt.

Luke Messac: It’s a problem I couldn’t avoid and therefore couldn’t avoid writing about.

Dan: And now that book is out. It’s called Your Money or Your Life. It tells the story of how the collection of medical debt in the US became so aggressive, the real impact it has on patients and – especially important for us – a different way to do things.

This is An Arm and a Leg, a show about why healthcare costs so freaking much and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So, our job on this show, it’s to take one of the most enraging, terrifying, depressing parts of American life and bring you something entertaining, empowering, and useful.

Dan: Luke Messac says his journey begins with this guy.

Paul Farmer: It’s not intellectually shallow to have hope. That’s a profound thing, you know…

Dan: That’s Paul Farmer – and YES, you may have heard me mention him recently, like when we talked about the writer John Green. Paul Farmer was a doctor who founded an amazing global health organization called Partners in Health.

He’s the subject of a book called Mountains Beyond Mountains, which focuses a lot on his work in Haiti, and which, I’m gonna say again here: When we start a book club on this show, that’s my vote for our first read.

Anyway, Luke started watching Paul Farmer’s videos as a kid. And ended up as

his student.

Luke Messac: I knew I wanted to be in medicine. I knew I wanted to be a doctor. When I first got into Harvard as a 17 year old kid, I, I think YouTube was just starting at that point. I’m going to date myself. And I saw some of his lectures and this was right around the time when Mountains Beyond Mountains came out. And I started to learn more about his work. My father was born in Haiti and I’ve always had a special affinity for the country. And, and so I, I heard about him. I really lucked out. In that one year, he was teaching a freshman seminar, uh, for 12 kids and I, ended up taking this class with him as freshmen and then kind of clung for dear life to, to work with the organization, uh, after that, because we were hooked.

Dan: Yeah, I mean, what an incredible opportunity. And, you know, I’ve only, I only know him right through his kind of public persona and mostly through reading that book, which is now like 20 years old, I think, um but you know, he seems like such an incredibly inspiring person who doesn’t accept half measures.

Luke Messac: Yeah, he, he insisted on a few things, and one of them was that the poor patient shouldn’t get care any less, uh, decent than the care that anyone else would expect, that the care that we deliver at Brigham and Women’s Hospital, where he also worked, should be the standard of care that should be delivered everywhere, including rural Haiti, including rural Rwanda. And he would call that an aspirational goal sometimes, but it’s one that he was extremely serious about and devoted. This guy did not stop working. Uh, you couldn’t keep up with him, but he also made space for students, especially younger students, people who weren’t even in their medical training yet. He made so much time for me. So much time for us. He’d always respond to our emails and text messages.

Dan: So did you, like, apply to MD PhD programs, like, at the same time, like you’re, like, finishing undergrad and you’re like, okay, uh, all right, here’s the, here’s the plan for the next 15 years. Or did, things evolve? Like, how did that work?

Luke Messac: Yeah, essentially. I mean, I’m somewhat loathe to give up a little secret, which is that the MD PhD programs in the United States are paid for by the federal government. At least that still remains the case. And so if you want to get a medical degree in the United States, most of the time you’re going to come out unless you’re independently wealthy with six figures in debt. And I’m not talking low six figures. If you want to get an MD-PhD in the United States, that is still funded by the federal government. So you’re going to graduate with 0 in debt from medical school or graduate school, and you’ll get a stipend on top of that. So it is a long road, but it is one that comes with some benefits and doesn’t leave you tremendously in the hole when you come out feeling like you can’t do anything but try to pay back that debt.

Dan: That is really, really wild. It’s really interesting that it’s, I mean, There’s something very poetic about you entering this program that allows you to, uh, emerge from it without debt, and then using that resource to build an understanding of and campaign against debt.

So, it’s fall 2019 and this is your story. This is how you arrived here. You are yourself basically debt free, and you’ve been following a path. And you note that you had been reading about, medical debt lawsuits.

Luke Messac: Yeah, I’d seen it in ProPublica, Kaiser Family Foundation, um, and in various newspapers across the country. And I had friends in training at Johns Hopkins hospitals, in Baltimore, and I saw them post pictures of their protests against their own hospitals, practice of suing patients, oftentimes their own low paid employees for medical debts they couldn’t afford to pay. Their work was really an inspiration to me to find out if this kind of thing was going on elsewhere. I thought it didn’t. I thought it was very anomalous practice. I didn’t think I’d find too much, uh, in the way of it happening in my neck of the woods, but I was, I was wrong about that.

Dan: So in the book, you tell the story that you went to the courthouse in Providence, Rhode Island, where you were working as a medical resident to look up medical debt lawsuits, And you’re still imagining this as like, well, this is some kind of outlier thing. I’m not going to find it. But you’re like, you’re just a little curious?

Luke Messac: Being a historian is a very solitary and quiet existence. And that is something that you cannot say of the emergency department, neither solitary nor quiet ever. And so I was I had a day off. I wanted to relive my days in the archive. And I wanted to answer this question, and I went to the courthouse. And I asked to be led into the court records. And so basically they let you into this back room, uh, looks like, uh, an office from office space, like the movie, uh, a lot of UV light and white walls. And a very old computer that looks like it came out of the late 1990s, early 2000s, and you pull up the database, also a very clunky looking old database, and you can type in your hospital or type in your business or type in an individual and see if they’ve ever been involved in the court system. And so I did that, I looked up, uh, my hospital system, other hospital systems in the state, and some of the lawsuits were what you’d expect.

Dan: Like medical malpractice suits. And run of the mill employment disputes. But he also saw lawsuits against the hospital’s patients. A lot of lawsuits.

Luke: And when they were filed, oftentimes they would get a response from the defendant, and these responses would show me that some of the defendants were single mothers. Some of the defendants were living on social security disability. Some of the defendants were recent immigrants who had trouble responding in English and so wrote back in their native languages, pleading for leniency. And when they asked for such, they would get some in the form of usually a payment plan. Maybe they would be asked to pay some amount every month for the next five years, six years, seven years to cover the cost of a single visit. And if they signed up for those payment plans, then they would be told that if they missed any payments, that they would be charged double digit interest rates. And if they didn’t respond, as many didn’t, then they would lose the case by default. And oftentimes have their wages garnished, have 25% of their wages taken from them every month. And so these were really punitive measures being taken against really vulnerable patients. The vast majority of lawsuits in the state were filed by the hospitals in which I worked,. And this was really disturbing to me. I always comforted my patients who worried about the cost of their care when they came in and said, oh boy, am I going to be able to afford this? Um, you know, should I have come in at all? And I always tried to comfort them and say, oh, don’t worry about it. Even if you’re uninsured, we have financial assistance. You’ll, you know, we don’t, we don’t go after people. And I was wrong. I was dead wrong about that. And that made me feel, uh, pretty awful.

Dan: In the book, you say you felt shame.

Luke Messac: Yeah, it was a mixture of anger and surprise and shame, because I always knew that our healthcare system was full of injustice, that so many people can’t afford insurance, even those who do, aren’t always able to afford their care, that the distribution of resources runs along steep gradients of inequality. But I didn’t realize that I was such a direct participant in that injustice, that the care I was delivering to patients was resulting in them showing up in court or having their wages garnished or signing up for a payment plan that they would be paying for the better part of a decade. So that was really the source of my shame.

Dan: And what did you do? Like, I know eventually you took lots of actions, but like, what did you do immediately?

Luke Messac: Yeah, I talked to my friends. I talked to some mentors. I talked to my wife, who is also in medicine, but was working elsewhere. And all of us shared the same sense of shock and anger and shame, because none of us wanted to be doing that to our patients. We all kind of shared the same sense of shock but. I didn’t know what to do at first. I didn’t know where to turn.

Dan: At first you tried Twitter, right? Or Facebook or…

Luke Messac: uh, yeah, I did. I just started using Twitter the year before I put out a couple of, you know, impotently angry tweets about it and said, someone’s got to do something about this. This shouldn’t exist. And, uh, didn’t get much of a response. You know, a few friends of mine said, right on. But, you know, it, it wasn’t, it wasn’t making much of a dent.

Dan: So he wrote an op ed. Submitted everywhere he could think of – New York Times, Wall Street Journal, Washington Post, even his hometown paper, the Providence Journal.

Luke Messac: No one was interested. No bites. And then there was a small, uh, lefty blog run by this guy, Steve Alquist, a real muckraking crusader here in Providence. And I sent it to him and he said, this is really interesting. Absolutely., I’ll run it. I didn’t know if it would make any difference whether this blog post on Uprise Rhode Island, uh, uh, you know, would, would cause any waves, but sure enough, the morning it went up, I got a call from my superiors of the hospital saying they definitely wanted to meet. So it had, it had something of its desired effect. Although, uh, I won’t recommend the approach to everybody because it, it, it did imperil my job.

Dan: Because that first meeting was not set up as a friendly chat. The message also said he could face public correction or worse, dot dot dot.

Luke Messac: So I wondered what that or worse could be.

Dan: You met with a top administrator who was like, you’re just wrong buddy, we don’t do that, that never happens, I would know.

Luke Messac: Yeah, they did tell me that they didn’t sue patients, that I was wrong. And to be honest, it raised a couple other questions in my mind, saying… Is this guy just lying to me or does he literally not know? And so when I was able to prove to the folks who I was meeting with that were indeed suing patients, in fact, some of these lawsuits were filed in the last few weeks, they quickly changed course, they severed their relationship with the debt collector who was filing the lawsuits on their behalf and dismissed the remainder of the cases. So that was a, that was a sanguine outcome from that one thing, but it did make me realize a few things. One was that, you know, I’d really only started to understand what on earth was going on and how so many patients were being sued and how it was being done in a way that, uh, most of us who were involved in delivering care and even a lot of the people who were involved in running the hospital didn’t seem to know that this was happening.

Dan: So Luke Messac, the doctor, now knew that hospitals, including his, were suing patients to collect debt. Luke Messac, the historian, wanted to figure out when this practice started and why. That’s after this…

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their work is terrific. Wins all kinds of awards every year. So proud to work with them.

Luke writes: “Medical debts have long spurred people to desperate acts: theft, suicide, plane hijacking,” And yes, the story of the hijacking is in the book. But, he also writes quote: “the modern era of pay-up-or-else health financing and aggressive debt collection began in earnest during the last two decades of the twentieth century, as threats to their own survival made hospitals less financially forgiving toward their patients.” Unquote. He writes about the eighties, how changes to Medicare and Medicaid left hospitals strapped for cash. And how they tried to make up the difference by charging higher prices to private insurers– which meant higher prices for the

uninsured too. And how in the nineties, private insurers started pushing back hard on how much they’d pay, and what they’d pay for. And that hit hospitals in the pocketbook hard.

Luke Messac: And really the question is when those cost pressures start, who’s going to make up the difference? And for a lot of places, it was patients. It was patients paying in the form of higher deductibles, higher copays, or for the uninsured, more aggressive debt collection measures. And so a lot of hospitals would leave debts on the books for years, even decades, until this time when they started saying, we’re done waiting for our money. Literally, we’re done waiting for our money was the line. And so they turned to third party debt collectors to whom they would either assign debts or sell debts, and those debt collectors really introduced a whole new series of tactics that involved the court system that involved, uh, wage garnishment and reporting debt to credit bureaus and placing liens on property and foreclosing on homes and sometimes even seeking the arrest of patients who didn’t show up to hearings. So this was a really brave new world of medical debt collection that we continue to live with today.

Dan: So here’s what I don’t really get, um, this comes up whenever you see stories about hospitals sue patients over debts. It’s like how little money this actually generates for hospitals. And this is evident from like your very, your accounts of the very first sales of debts that hospitals are selling you know, these very large collections of debts for tiny, tiny amounts and like, so, what’s the point?

Luke Messac: That is the persisting mystery of all of this. I think I have a few reasons why this might’ve happened. One is that it is a revenue garnering tactic, even as small as it is, it puts you a little more in the black or a little less in the red. And if you are a hospital financial administrator who’s charged with making sure that you remain as much in the black as possible or less in the red, then you’re going to take every tool in your toolkit until someone tells you not to. And without doctors and nurses and healthcare professionals really being involved in the process or aware that the process is going on, there’s really nothing to stop them. And the only people who you’re hearing from are debt collectors themselves. They are selling their wares at your door. They are at all your conferences. They are promising you that they will help your situation so

why not? I mean, your billing and collections office doesn’t want to deal with these bills. Folks who work in hospital billing offices, they’re used to dealing with insurers. They don’t mind that at all, right? This trench warfare trying to get insurers to pay up and dealing with all of their rigmarole in the reimbursement process is something in which they are well trained. But very few people want to deal with what are called self pay patients. They don’t want to be on the phone with poor folks trying to get them to pay up. And so you’re taking a headache off their hands by handing it to a third party debt collector who’s telling you that they’ll bet they’re better at it anyway. So I think a lot of

that has to do with kind of just the, the headache saved and the promised resources, however small they are from turning to this tactic. It just is too easy to do at this point.

Dan: Luke’s book profiles some of the early trailblazers in this headache saving business.

A guy named Michael Barrist founded NCO Financial Systems. A company that bought so much medical debt that they became known as the Walmart of debt collection.

A salesman for the company named Charles Piola was so good at selling the company’s services to doctors offices and hospitals that Inc magazine dubbed him the king of cold calls.

Luke writes that the company’s tactics included contacting patients up to 50 times in four or five months, and finding them at their workplaces. And these were not folks whose training started with a hippocratic oath: Do no harm. That was not their context.

Luke Messac: Their reference points are really other forms of consumer debt. When people don’t pay for their cars, their cars get impounded. When people don’t pay their credit card bills, they get double digit interest rates too. When people don’t pay for their homes, those homes get foreclosed. So when people don’t pay their medical bills, then use the tools at your disposal, including the legal system. 

There was also some concern that if hospitals were too lenient on patients, that they might be running afoul of some Medicare rules about kickbacks. Um, and this is an interesting concern, one that I saw raised in some legal papers, but it’s one that, at least for the last 20 years, the Department of Health and Human Services has tried to allay. And some hospitals have forsworn the practice. There are hundreds of hospitals out there who just do not sue patients, will not sue patients, and will tell you straight out, we don’t do it, we won’t do it. And they’re not getting sued by the federal government for kickbacks, right? So it’s not necessary. You don’t have to do it. And yet hospitals still do.

Dan: Towards the end of the book, you talk about like, how do we reform this system and that this issue of these kind of aggressive debt collection practices kind of rouse the conscience of most everyone. When individual institutions get the spotlight shown on, they generally stop doing it. But it’s not enough. Like it still leaves people with so, so many people with so much debt, with so many bills they can’t pay.

Luke Messac: Yeah. I have a lot of sympathy for people who feel like this problem is just too big. Or that they have other things that they need to do. For patients, often the patients who face this problems, you know, they’re often dealing with their own illnesses and their own debts and their own problems and to ask them to solve the problem themselves doesn’t seem a reasonable solution. But then I also have sympathy for the people who work in hospitals, the doctors, the nurses, the respiratory technicians, the janitors, the administrators, even who feel like their work is harder than ever and that they have enough trouble trying to make sure their patients get decent care and that they’re able to keep their own heads above water while doing it and not burn out and ask them to really look upon a really ugly feature of the healthcare system. And not only imbibe it and make sense of it, but do something about it. That’s asking a lot. And I’m really cognizant of the fact that we’re already asking so much of healthcare workers around the country. But I do think it’s something we need to take on. The best efforts are really the collective ones. And so I would say any possibility of joining up with other like minded folks who are already doing this work is going to be so much more fun, so much more effective.

Dan: Find your people,

Luke Messac: Amen. And then look around and see what your own place is doing your own hospital system because I regret to inform you that some of them won’t be what you hoped, but they are susceptible to pressure. They are capable of shame. And so there is a lot you can do close to home to make sure that your own institution is doing right by patients. Find out if your institution is suing patients. Look up your own hospital’s financial assistance policy and see what sort of extraordinary collection actions they will take against patients. See how patients qualify for free and discounted care and ask yourself is that as much as the hospital system could be doing given their resources. So there’s a lot you could do. Some of it involves grand systemic change, and some of it involves just making sure that where you go to work every day, where you’re training, where you’re studying is a place that you can believe in.

Dan: Luke Messac’s book is “Your Money or Your Life: Debt Collection in American Medicine.” It is out NOW from Oxford University Press. And speaking of right now: NEWSMATCH– is in effect. This is where we raise the biggest piece of our budget for next year, with your help. And the NewsMatch program matches every dollar you give us. The place to go is arm and a leg show dot com, slash, support. 

Next time on “An Arm and a Leg:” For a lot of us, November is open enrollment for next year’s health insurance.

Last year around this time, Ellen Hahn was absolutely scrambling — super creatively.

Ellen Hahn: When I was a kid, I dreamed about being an actor. I didn’t dream about having health insurance. I just kind of thought I would have it.

Dan: She decided to make a short film and cast herself in it. And she raised the money by crowdsourcing online. The title: Ellen Needs Insurance.

Now, the movie’s out, We’ll hear all about it.

And: of course this year, she needs insurance all over again. Plus her union has

been on strike since May. Whoa. We’ll find out what she’s got planned.

That’s in two weeks. Meanwhile, I am saying please do take a minute to pitch in to help us make this show. Every dollar gets matched.

The place to do that is arm and a leg show, dot com, slash support.

That’s arm and a leg show dot com, slash: support

Thank you so much. Catch you in a couple weeks, with  “Ellen Needs Insurance.” Till then, take care of yourself.

This episode of “An Arm and a Leg” was produced by Emily Pisacreta and me, Dan Weissman and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. 

Sarah Ballema is our operations manager.

“An Arm and a Leg” is produced in partnership with KFF Health News — formerly known as Kaiser Health News. That’s a national newsroom producing in-depth journalism about health care in America, and a core program at KFF — an independent source of health policy research, polling, and journalism.

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about INN at INN.org

And, finally, thanks to everybody who supports this show financially.

If you haven’t yet, we’d love for you to join us. The place for that is armandalegshow.com/support. That’s armandalegshow.com/support. 

Thanks for pitching in if you can, and thanks for listening!

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

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Mary Agnes Carey
KFF Health News

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Partnerships Editor and Senior Correspondent, oversees placement of KFF Health News content in publications nationwide and covers health reform and federal health policy. Before joining KFF Health News, Mary Agnes was associate editor of CQ HealthBeat, Capitol Hill Bureau Chief for Congressional Quarterly, and a reporter with Dow Jones Newswires. A frequent radio and television commentator, she has appeared on CNN, C-SPAN, the PBS NewsHour, and on NPR affiliates nationwide. Her stories have appeared in The Washington Post, USA Today, TheAtlantic.com, Time.com, Money.com, and The Daily Beast, among other publications. She worked for newspapers in Connecticut and Pennsylvania, and has a master’s degree in journalism from Columbia University.

In most states, open enrollment for plans on the Affordable Care Act exchange — also known as Obamacare — began Nov. 1 and lasts until Dec. 15, though some states go longer. With premiums expected to increase by a median of 6%, consumers who get their health coverage through the federal or state ACA marketplaces are encouraged to shop around. Because of enhanced subsidies and cost-sharing assistance, they might save money by switching plans.

Meanwhile, Ohio is yet again an election-year battleground state. A ballot issue that would provide constitutional protection to reproductive health decisions has become a flashpoint for misinformation and message testing.

This week’s panelists are Mary Agnes Carey of KFF Health News, Jessie Hellmann of CQ Roll Call, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachana Pradhan of KFF Health News.

Panelists

Jessie Hellmann
CQ Roll Call

@jessiehellmann

Read Jessie's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories

Among the takeaways from this week’s episode:

• Open enrollment for most plans on the Affordable Care Act exchange — also known as Obamacare — began Nov. 1 and lasts until Dec. 15, though enrollment lasts longer in some states. With premiums expected to increase by a median of 6%, consumers are advised to shop around. Enhanced subsidies are still in place post-pandemic, and enhanced cost-sharing assistance is available to those who qualify. Many people who have lost health coverage may be eligible for subsidies.
• In Ohio, voters will consider a ballot issue that would protect abortion rights under the state constitution. This closely watched contest is viewed by anti-abortion advocates as a testing ground for messaging on the issue. Abortion is also key in other races, such as for Pennsylvania’s Supreme Court and Virginia’s state assembly, where the entire legislature is up for election.
• Earlier this week, President Joe Biden issued an executive order that calls on federal agencies, including the Department of Health and Human Services, to step into the artificial intelligence arena. AI is a buzzword at every health care conference or panel these days, and the technologies are already in use in health care, with insurers using AI to help make coverage decisions. There is also the recurring question, after many hearings and much discussion: Why hasn’t Congress acted to regulate AI yet?
• Our health care system — in particular the doctors, nurses, and other medical personnel — hasn’t recovered from the pandemic. Workers are still burned out, and some have participated in work stoppages to make the point that they can’t take much more. Will this be the next area for organized labor, fresh from successful strikes against automakers, to grow union membership? Take pharmacy workers, for instance, who are beginning to stage walkouts to push for improvements.
• And, of course, for the next installment of the new podcast feature, “This Week in Medical Misinformation:” The official government website of the Republican-controlled Ohio Senate is attacking the proposed abortion amendment in what some experts have said is a highly unusual and misleading manner. Headlines on its “On The Record” blog include “Abortion Is Killing the Black Community” and say the ballot measure would cause “unimaginable atrocities.” The Associated Press termed the blog’s language “inflammatory.”

Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:

Mary Agnes Carey: Stat News’ “The Health Care Issue Democrats Can’t Solve: Hospital Reform,” by Rachel Cohrs.

Jessie Hellmann: The Washington Post’s “Drugstore Closures Are Leaving Millions Without Easy Access to a Pharmacy,” by Aaron Gregg and Jaclyn Peiser.

Joanne Kenen: The Washington Post’s “Older Americans Are Dominating Like Never Before, but What Comes Next?” by Marc Fisher.

Rachana Pradhan: The New York Times’ “How a Lucrative Surgery Took Off Online and Disfigured Patients,” by Sarah Kliff and Katie Thomas.

Click to open the Transcript

Transcript: For ACA Plans, It’s Time to Shop Around

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Mary Agnes Carey: Hello, and welcome back to “What the Health?” I’m Mary Agnes Carey, partnerships editor for KFF Health News, filling in this week for Julie Rovner. I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Nov. 2, at 10 a.m. ET. As always, news happens fast, and things might’ve changed by the time you hear this.

We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Carey: Jessie Hellmann, of CQ Roll Call.

Jessie Hellmann: Hey there.

Carey: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Thanks for having me.

Carey: It’s great to have you here. It’s great to have all of you here. Let’s start today with the Affordable Care Act. If you’re interested in enrolling in an ACA plan for coverage that begins Jan. 1, it’s time for you to sign up. The ACA’s open enrollment period began Nov. 1 and lasts through Dec. 15 for plans offered on the federal exchange, but some state-based ACA exchanges have longer enrollment periods. Consumers can go online, call an 800 number, get help from an insurance broker or from other ACA navigators and others who are trained to help you research your coverage options, help you find out if you qualify for a subsidy, or if you should consider changing your ACA plan.

What can consumers expect this year during open enrollment? Are there more or fewer choices? Are premiums increasing?

Hellmann: So, I saw the average premium will increase about 6%. So people are definitely going to want to shop around and might not necessarily just want to stick with the same plan that they had last year. And we’re also going to continue seeing the enhanced premiums, subsidies, that Congress passed last year that they kind of stuck with after the pandemic. So subsidies might be more affordable for people — I’m sorry, premiums might be more affordable for people. There’s also some enhanced cost-sharing assistance.

Carey: So it kind of underscores the idea that if you’re on the ACA exchange, you really should go back and take a look, right? Because there might be a different deal out there waiting.

Kenen: I think the wrinkle — this may be what you were just about to ask — but the wrinkle this year is the Medicaid disenroll, the unwinding. There are approximately 10 million, 10 million people, who’ve been disenrolled from Medicaid. Many of them are eligible for Medicaid, and at some point hopefully they’ll figure out how to get them back on. But some of those who are no longer eligible for Medicaid will probably be eligible for heavily subsidized ACA plans if they understand that and go look for it.

This population has been hard to reach and hard to communicate with for a number of reasons, some caused by the health system, not the people, or the Medicaid system, the states. They do have a fallback; they have some extra options. But a lot of those people should click and see what they’re eligible for.

Pradhan: One thing, kind of piggybacking on what Joanne said, that I’m really interested in: Of course, right now is a time when people can actively sign up for ACA plans. But the people who lost Medicaid, or are losing Medicaid — technically, the state Medicaid agency, if they think that a person might qualify for an ACA plan, they’re supposed to automatically transfer those people’s applications to their marketplace, whether it’s healthcare.gov or a state-based exchange. But the data we have so far shows really low enrollment rates into ACA plans from those batches of people that are being automatically transferred. So I’m really curious about whether that’s going to improve and what does enrollment look like in a few months to see if those rates actually increase.

Carey: I’m also wondering what you’re all picking up on the issue of the provider networks. How many doctors and hospitals and other providers are included in these plans? Are they likely to be smaller for 2024? Are they getting bigger? Is there a particular trend you can point to?

I know that sometimes insurers might reduce the number of providers, narrow that network, for example to lower costs. So I guess that remains to be seen here.

Kenen: I haven’t seen data on the ACA plans, and maybe one of the other podcasters has. I haven’t seen that. But we do know that in certain cities, including the one we all live in [Washington, D.C.], many doctors are stopping, are no longer taking insurance. I mean, it’s not most, but the number of people who are dropping being in-network in some of the major networks that we are used to, I think we have all encountered that in our own lives and our friends’ and families’ lives. There are doctors opting out, or they’re in but their practices are closed; they’re not taking more patients, they’re full.

I don’t want to pretend I know how much worse it is or isn’t in ACA plans, but we do know that this is a trend for multiple years. In some parts of the country, it’s getting worse.

Hellmann: Yeah, the Biden administration has been doing some stuff to try to address some of these problems. Last year there were some rules requiring health plans have enough in-network providers that meet specific driving time and distance requirements. So, they are trying to address this, but I wouldn’t be surprised if some of these plans’ networks are still pretty narrow.

Pradhan: Yeah. I mean, I think the concern for a while now with ACA plans is because insurance companies can’t do the things that they did a decade ago to limit premium increases, etc., one of the ways they can keep their costs down is to curtail the number of available providers for someone who signs up for one of these plans. So, like Jessie, I’m curious about how those new rules from last year will affect whether people see meaningful differences in the availability of in-network providers under specific plans.

Carey: That and many other trends are worth watching as we head into the open enrollment season. But right now, I’d like to turn to another topic in the news, and that’s abortion. “What the Health?” listeners know that last week your host, Julie Rovner, created a new segment that she’s calling “This Week in Health Care Misinformation.” Here’s this week’s entry.

A measure before Ohio voters next Tuesday, that’s Nov. 7, would amend Ohio’s constitution to guarantee the right to reproductive health care decisions, including abortion. Abortion rights opponents say the measure is crafted too broadly and should not be approved. The official government website of the Republican-controlled Ohio Senate is attacking the proposed abortion amendment in what some experts have said is a highly unusual and misleading manner. Headlines on the “On The Record” blog — and that’s what it’s called, “On The Record”; this is on the Ohio state website — it makes several claims about the measure that legal and medical experts have told The Associated Press were false or misleading. Headlines on this site include, and I’m quoting here, “Abortion Is Killing the Black Community” and that the proposal would cause, again, another quote, “unimaginable atrocities.” Isn’t it unusual for an official government website to operate in this manner?

Pradhan: I think yes, as far as we know, and that’s really scary. It’s hard enough these days to sort out what is legitimate and what isn’t. We’ve seen AI [artificial intelligence] used in other political campaign materials in the forms of altered videos, photographs, etc. But now this is a really terrifying prospect, I think, that you could provide misinformation to voters — particularly in close races, I would say, that you could really swing an outcome based on what people are being told.

Kenen: The other thing that’s being said in Ohio by the Republicans is that the measure would allow, quote, “partial-birth abortions,” which is a particular — it’s a phrase used to describe a particular type of late-term abortion that’s illegal. Congress passed legislation, I think it’s 15 to 20 years ago now, and it went through the courts and it’s been upheld by the courts. This measure in Ohio does not undo federal law in the state of Ohio or anywhere else. So that’s not true. And that’s another thing circulating.

Carey: This discussion is very important. And to Rachana’s point, how voters perceive this is very important because Ohio is serving as a testing ground for political messaging headed into the presidential race next year. And abortion groups are trying to qualify initiatives in more states in 2024, potentially including Arizona. So even if you haven’t followed this story closely, I mean, how do you think this tactic may influence voters? Again, you’re talking about something — when you hit a news tab on an official state website, you come to this blog. Do you think voters will reject it? Could it possibly influence them — as you were talking about earlier, tip the results?

Kenen: Well, I don’t think we know how it’s going to tip, because I don’t know how many people actually read the state legislature blog.

Carey: Yeah, that could be an issue.

Kenen: Although, and the coverage of it, one would hope, in the state media would point out that some of these claims are untrue. But I mean, it’s taking — you know, the Republicans have lost every single state ballot initiative on abortion, and it’s been a winning issue for the Democrats and they’re trying to reframe it a little bit, because while polls have shown — not just polls, but voting behavior has shown — many Americans want abortion to remain legal, they aren’t as comfortable with late-term abortions, with abortions in the final weeks or months of pregnancy. So this is trying to shift it from a general debate over banning abortion, which is not popular in the U.S., to an area where there’s softer support for abortions later during pregnancy.

And polls have shown really strong support for abortion rights. But this is an area that is not as strong, or a little bit more open to maybe moving people. And if the Republicans succeed in portraying this as falsely allowing a procedure that the country has decided to ban, I think that’s part of what’s going on, is to shift the definition, shift the terms of debate.

Carey: As we know, Ohio is not the only state where abortion is taking center stage. For example, in Pennsylvania, abortion is a key issue in the state Supreme Court justice election, and it’s a test case of political fallout from the Supreme Court, the United States Supreme Court’s decision last summer to overrule Roe v. Wade. In Texas, the state is accusing Planned Parenthood of defrauding the Republican-led state’s Medicaid health insurance program. And in Kansas, in a victory for abortion rights advocates, a judge put a new state law on medication abortions on hold and blocked other restrictions governing the use and distribution of these medications and imposed waiting periods.

And of course, abortion remains a huge issue on Capitol Hill, with House Republicans inserting language into many spending bills to restrict abortion access, to block funding for HIV prevention, contraception, global health programs, and so on. So, which of these cases, or others maybe that you are watching, do you think will be the strongest indicators of how the abortion battle will shake out for the rest of this year and into 2024?

Pradhan: I’m actually going to make a plug for another one that we didn’t mention, which is for our local, D.C.-area listeners, Virginia next week has a state legislative election. So, Gov. [Glenn] Youngkin of course is still — he’s not up for reelection; he’ll sit one single four-year term, but the entire Virginia General Assembly is up for election. So currently Gov. Youngkin says that he wants to institute a 15-week abortion ban, but Republicans would need to control every branch of government, which they do not currently, but it is possible that they will after next week. So that would be a big change as you see abortion restrictions that have proliferated, especially throughout the South and the Midwest. But now Virginia so far has not, in the wake of last year’s Dobbs [v. Jackson Women’s Health Organization] decision, has not imposed greater restrictions on access to abortion.

But I think the 15-week limit also provides kind of a test case, I think, for whether Republicans might be able to coalesce around that standard as opposed to something more aggressive like, say, a total ban or a six-week ban that’s obviously been instituted in certain states but I think at a national level right now is a nonstarter. I’m pretty interested in seeing what happens even in a lot of our own backyard.

Kenen: Because Virginia’s really tightly divided. I mean, the last few elections. This was a traditional Republican state that has become a purple state. And the last few state legislature elections, didn’t they once decide by drawing lots? It was so close. I mean it’s flipped back. It’s really, really, really tiny margins in both houses. I think Rachana lives there and knows the details better than I do. But it’s razor-thin, and it was Republican-controlled for a long time and Democrats, what, have one-seat-in-the-Senate control? Something like that, a very narrow margin. And they may or may not keep it.

Pradhan: Joanne, your memory’s so good, because they had —

Kenen: Because I edited your stories.

Pradhan: You did. I know. And they had to draw names out of a bowl that was— it was in a museum. It was something that a Virginia potter had made and they had to take it out of a museum exhibit. I mean, it was the most — it’s really fascinating what democracy can look like in this country when it comes down to it. It was such a bizarre situation to decide control of the state House. So you’re very right, so it’s very close.

Kenen: It’s also worth pointing out, as we have in prior weeks, that 15 weeks is now being offered as this sort of moderate position, when 15 weeks — a year ago, that’s what the Supreme Court case was really about, the case we know as Dobbs. It was about a law in Mississippi that was a 15-week ban. And what happened is once the courts gave the states the go-ahead, they went way further than 15 weeks. I don’t know how many states have a 15-week ban, not many. The anti-abortion states now have sort of six weeks-ish or less. North Carolina has 12, with some conditions. So 15 weeks is now Youngkin saying, “Here’s the middle ground.” I mean, even when Congress was trying to do a ban, it was 20, so — when they had those symbolic votes, I think it was always 20. He’s changed the parameters of what we’re talking about politically.

Carey: Jessie, how do you see the abortion riders on these appropriations bills, particularly in the House. House Republicans have put a lot of this abortion language into the approps bills. How do you see that shaking out, resolving itself, as we look forward?

Hellmann: It is hard to see how some of these riders could become law, like the one in the FDA-Ag approps bill that would basically ban mailing of mifepristone, which can be used for abortions. Even some moderate Republicans who are really against that rider — I mean just a handful, but it’s enough where it should just be a nonstarter. So I’m just not sure how I can see a compromise on that right now. And I definitely don’t see how that could pass the Senate. So it’s just everything has become so much more contentious since the Roe decision. And things that weren’t contentious before, like the PEPFAR [The United States President’s Emergency Plan for AIDS Relief] reauthorization, are now being bogged down in abortion politics. It’s hard to see how the two sides can come to an agreement at this point.

Carey: Yes, contentious issues are everywhere. So, let’s switch from abortion to AI. Earlier this week, President Biden issued an executive order that calls on several federal agencies, including the Department of Health and Human Services, to create regulations governing the use of AI, including in health care. What uses of AI now in health care, or even future uses, are causing the greatest concern and might be the greatest focus of this executive order? And I’m thinking of things that work well in AI or are accepted, and things that maybe aren’t accepted at this point or people are concerned about.

Kenen: I think that none of us on the panel are super AI experts.

Carey: Nor am I, nor am I.

Kenen: But we are all following it and learning about it the way everybody else is. I think this is something that Vice President Harris pointed out in a summit in London on AI yesterday. There’s a lot of focus on the existential, cosmic scary stuff, like: Is it going to kill us all? But there’s also practical things right now, particularly in health care, like using algorithms to deny people care. And there’s been some exposés of insurance doing batch denials based on an AI formula. There’s concerns about — since AI is based on the data we have and the data, that’s the foundation, that’s the edifice. So the data we have is flawed, there’s racial bias in the data we have. So how do you make sure the algorithms in the future don’t bake in the inequities we already have? And there’s questions too about AI is already being used clinically, and how well does it really work? How reliable are the studies and the data? What do we know or not know before we start?

I mean, it has huge potential. There are risks, but it also has huge potential. So how do we make sure that we don’t have exaggerated happy-go-lucky mistrust in technology before we actually understand what it can and cannot do and what kind of safeguards the government —and the European governments as well; it’s not just us, and they may do a better job — are going to be in place so that we have the good without … The goal is sort of, to be really simplistic about it, is let’s have the good without the bad, but doing it is challenging.

Carey: Oh, Rachana, please.

Pradhan: Well, all I was going to say was nowadays you cannot go to a health care conference or a panel discussion without there being some session about AI. I guess it demonstrates the level of interest. It kind of reminds me of every few years there’s a new health care unicorn. So there was ACOs [accountable care organizations] for a long time; that’s all people would talk about. Or value-based care, like every conference you went to. And then with covid, and for other reasons, everyone is really big on equity, equity, equity for a long time. And now it’s like AI is everywhere.

So like Joanne said, I mean, we have everything from a chatbot that pops up on your screen to answer even benign questions about insurance. That’s AI. It’s a form of AI. It’s not generative AI, but it is. And yeah, I mean, insurance companies use all sorts of algorithms and data to make decisions about what claims they’re going to pay and not pay. So yeah, I think we all just have to exercise some skepticism when we’re trying to examine how this might be used for good or bad.

Kenen: I just want a robot to clean my kitchen. Why doesn’t anyone just handle the … Silicon Valley does the really important stuff.

Carey: That would be a use for good in your house, in my house, in all our houses.

Kenen: Yeah.

Carey: So, while we’re understandably and admittedly not AI experts, we are experts on Congress here. And the president did say in his announcement earlier this week that Congress still needs to act on this issue. Why haven’t they done it yet? They’ve had all these hearings and all this conversation about crafting rules around privacy, online safety, and emerging technologies. Why no action so far? And any bets on whether it may or may not happen in the near future?

Hellmann: I think they don’t know what to do. We’ve only, as a country, started really talking about AI at kitchen tables, to use a cliche, this year. And so Congress is always behind the eight ball on these issues. And even if they are having these member meetings and talking about it, I think it could take a long time for them to actually pass any meaningful legislation that isn’t just directing an agency to do a study or directing an agency to issue regulations or something that could have a really big impact.

Carey: Excellent. Thank you. So let’s touch briefly — before we wrap, I really do want to get to this point and some of the stuff we continue to see in the news about health care workers under fire. It’s certainly not easy to be a health care worker these days. New findings published by the Centers for Disease Control and Prevention show that, in 2022, 13.4% of health workers said they had been harassed at work. That’s up from 6.4% in 2018. That’s more than double the rate of workplace harassment compared to pre-pandemic times, the CDC found.

We’ve talked about this before. It’s worth revisiting again. What is going on with our health care workforce? And what do these kind of findings mean for keeping talented people in the workforce, attracting new people to join?

Hellmann: Has anyone actually caught a break after the pandemic?

Carey: That’s a good point.

Hellmann: I mean, covid is still out there, but I don’t think that our health care system has really recovered from that. People have left the workforce because they’re burned out. People still feel burned out who stuck around, and I don’t know if they really got any breaks or the support that they needed. There’s just kind of this recognition of people being burned out. But I don’t know how much action there is to address the issue.

I feel like sometimes that leads to more burnout, when you see executives and leaders acknowledging the problem but then not really doing much to address it.

Carey: Well, that’s certainly been the complaint by pharmacy staff and others and pharmacists at some of the large drugstore chains, retail chains, that have gone out on strike. They’ve had these two- and three-day strikes recently. So, I’m assuming that will continue, unfortunately, for all the reasons that Jessie just laid out.

Pradhan: Actually, kind of going back to the strikes from pharmacists, I was thinking about this earlier because we’ve seen recently, I think separately in the news when it comes to labor unions, and maybe this will have some bearing, maybe not, but the United Auto Workers strike — I mean, they extracted some of the largest concessions from automakers as far as pay increases. And people are seeing, they really got a victory after striking for weeks. And I think people, at least the coverage that I’ve seen has talked about how that union win might not just catalyze greater labor union involvement, not just in the auto industry but in other parts of the country and other sectors.

And so, I’m not sure what percentage of pharmacists are part of labor unions, but I think people have sort of said more recently that organized labor is having a moment, or has been, that it has not in a while. And so, I’ll be fascinated to see whether there’s a greater appetite among pharmacists to actually be part of a labor union and sort of whether that results in greater demands of some of these corporate chains. As we know — we can talk about this I think in a little bit — but the corporate chains have really taken over pharmacies in America, and rural pharmacies are really dying off. And so that has a lot of important implications for the country.

Kenen: I think the problems with the health care workforce are not all things that labor unions can address, because some of it is how many hours you work and what kind of shifts you have and how often they change and things that — yeah, I mean, labor is having a moment, Rachana’s right. But they’re also tied to larger demographic trends, with an aging society. It’s tied to, our whole system is geared toward the, like dean of nursing at [Johns] Hopkins Sarah Szanton is always talking about, it’s not so much not having enough nurses; we’ve got them in the wrong places. If we did more preventive care and community care and chronic disease management in the community, you wouldn’t have so many people in the hospital in the first place where the workforce crisis is.

So some of these larger issues of how do we have a better health care system; labor negotiations can address aspects of it. Nursing ratios are controversial, but that’s a labor issue. It’s a regulatory issue as well. But our whole system’s so screwed up now that Jessie’s right, nobody recovered from the strains of the pandemic in many sectors, probably all sectors of society, but obviously particularly brutal on the health care workforce. We didn’t get to hit pause and say, OK, nobody get sick for six months while we all recover. The unmet psychiatric needs. I mean, it’s just tons of stuff is wrong, and it’s manifesting itself in a workforce crisis. So maybe if you don’t have anyone to take care of you, maybe people will pay attention to the larger underlying reasons for that.

Carey: That’s an issue I’m sure we will talk more about in the future because it’s just not going anywhere. But for now, we’re going to turn to our extra credit segment. That’s when we each recommend a story we read this week and think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device.

Joanne, why don’t you go first this week?

Kenen: Well, speaking of which, after we just talked about, there’s a piece in The Washington Post by Marc Fisher. It has a long headline: “Older Americans Are Dominating Like Never Before, but What Comes Next?” And basically it’s talking about not so much the nursing and physician workforce, although that’s part of it, just the workforce in general. We have more people working longer, and in areas where there’s shortages, there’s nothing wrong with having old people. A lot of communities have shortages of school bus drivers. So if you have a lot of older school bus drivers and they’re safe and like kids and like driving the bus, more power to them. If you’re 55 and you can drive a school bus full of nine-year-olds, middle schoolers, so much more.

Carey: Good luck with that one.

Kenen: But some of the physician specialties — one of the people in the story is a palliative care physician who retired and isn’t happy retired and wants to go back to work. And that’s another area where we need more people. But it’s a cultural shift, like, who’s doing what when, and how does it affect the younger generation? Although there was a reference to Angelina Jolie being on the old side at 48. I guess for an actress that might be old. But that wasn’t the gist of it. But we have this shift toward older people in many places, not just Trump and Biden. It’s sort of the whole workforce.

Carey: Got it. Jessie.

Hellmann: My extra credit is also a story from The Washington Post. It’s called “Drugstore Closures Are Leaving Millions Without Easy Access to a Pharmacy.” Focused specifically on some of the big national chains like CVS and Walgreens and Rite Aid, which have really kind of dominated the drugstore space over the past few decades. But now they are dealing with the repercussions from all these lawsuits that are being filed alleging they had a role in the opioid epidemic. And the story just kind of looks at the consequences of that.

These aren’t just places people get prescriptions. They rely on them for food, for medical advice, especially in rural and underserved areas. So yeah, I just thought it was a really interesting look at that issue.

Carey: Rachana?

Pradhan: So my extra credit is a story in The New York Times called “How a Lucrative Surgery Took Off Online and Disfigured Patients.” It’s horrifying. It’s a story about surgeons who are performing a complex type of hernia surgery and evidently are learning their techniques, or at least a large share of them are learning their techniques, by watching videos on social media. And the techniques that are demonstrated there are not exactly high quality. So the story digs into resulting harm to patients.

Kenen: And it’s unnecessary surgery in the first place — for many, not all. But it’s a more complicated procedure than they even need in a large portion of these patients.

Carey: My extra credit is written by Rachel Cohrs of Stat, and she’s a frequent guest on this program. Her story is called “The Health Care Issue Democrats Can’t Solve: Hospital Reform.” While Democrats have seized on lowering health care costs as a politically winning issue — they’ve taken on insurers and the drug industry, for example — Rachel writes that hospitals may be a health care giant they’re unable to confront alone, and they being the Democrats. As we know, hospitals are major employers in many congressional districts. There’s been a lot of consolidation in the industry in recent years. And hospital industry lobbyists have worked hard to preserve the image that they are the good guys in the health care industry, Rachel writes, while others, like pharma, are not.

Well, that’s our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps others find us too. Special thanks, as always, to our engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you could still find me on X. I am @maryagnescarey. Rachana?

Pradhan: I am @rachanadpradhan on X.

Carey: Jessie.

Hellmann: @jessiehellmann.

Carey: And Joanne.

Kenen: I’m occasionally on X, @JoanneKenen, and I’m trying to get more on Threads, @joannekenen1.

Carey: We’ll be back in your feed next week, and until then, be healthy.

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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

After nearly a month of bickering, House Republicans finally elected a new speaker: Louisiana Republican Rep. Mike Johnson, a relative unknown to many. And while Johnson has a long history of opposition to abortion and LGBTQ+ rights, his positions on other health issues are still a bit of a question mark.

Meanwhile, a new study found that in the year following the overturn of Roe v. Wade, the number of abortions actually rose, particularly in states adjacent to those that now have bans or severe restrictions.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, and Alice Miranda Ollstein of Politico.

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Rachel Cohrs
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Alice Miranda Ollstein
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Among the takeaways from this week’s episode:

• New House Speaker Mike Johnson (R-La.) doesn’t have much of a legislative record, but in a previous life he worked for the Christian conservative law firm Alliance Defending Freedom. ADF has been on the winning side of several major Supreme Court cases on social issues in the past decade, including the case that overturned Roe v. Wade.
• In Colorado this week, a federal judge ruled that the state cannot enforce a new law banning medication abortion “reversals,” an unproven treatment that most medical associations don’t recognize, because it could violate the religious rights of those who do advocate it.
• A new demonstration Medicaid program in Georgia to require low-income adults who want Medicaid coverage to prove they work a certain number of hours per week is off to a slow start, enrolling in its first three months only about 1,300 of the estimated 100,000 people who could be eligible.
• The National Institutes of Health may soon get a Senate-confirmed director for the first time in more than a year and a half. The Senate Health, Education, Labor and Pensions Committee, after a several-months delay, voted on a bipartisan basis to elevate National Cancer Institute chief Monica Bertagnolli to the top post at NIH. Notably, among the votes against her on the panel came from the committee chair, Sen. Bernie Sanders (I-Vt.), who has been trying to leverage the nomination to win more drug pricing concessions from the Biden administration. Bertagnolli is still expected to win full Senate approval.
• Finally, in the first installment of a new podcast feature, “This Week in Medical Misinformation,” KFF Health News’ Liz Szabo writes about how Suzanne Somers, a popular TV actress from the late 1970s through the 1990s, used her fame to push questionable medical treatments, becoming an “influencer” long before there was such a thing.

Also this week, Rovner interviews Michael Cannon, director of health policy studies for the Cato Institute, a libertarian think tank, about his new book, “Recovery: A Guide to Reforming the U.S. Health Sector.”

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The Washington Post’s “The Pandemic Has Faded in This Michigan County. The Mistrust Never Ended,” by Greg Jaffe and Patrick Marley.

Alice Miranda Ollstein: Politico’s “Dozens of States Sue Meta Over Addictive Features Harming Kids,” by Rebecca Kern, Josh Sisco, and Alfred Ng.

Rachel Cohrs: The New York Times’ “Ozempic and Wegovy Don’t Cost What You Think They Do,” by Gina Kolata.

Also mentioned in this week’s episode:

KFF Health News’ “Suzanne Somers’ Legacy Tainted by Celebrity Medical Misinformation,” by Liz Szabo.

click to open the transcript

Transcript: The New Speaker’s (Limited) Record on Health

KFF Health News’ ‘What the Health?’Episode Title: The New Speaker’s (Limited) Record on HealthEpisode Number: 320Published: Oct. 26, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Oct. 26, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this, so here we go.

We are joined today via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: Later in this episode, we’ll have my interview with Michael Cannon, noted libertarian health expert, about his new book called “Recovery: A Guide to Reforming the U.S. Health Sector.” But first, before we get onto this week’s news, a small correction from last week’s podcast. In talking about just how confusing open enrollment for Medicare is, I misstated the open enrollment dates. It runs this year from Oct. 15 to Dec. 7, not to Dec. 15. See, I said it was confusing.

All right, now to the news. Hey, we got a speaker of the House again! Mike Johnson is in his fourth term from the 4th District of Louisiana. He’s not strictly a backbencher; he was in the lower levels of House leadership. But I think it’s fair to say that a lot of people, including me, had no idea who he was until this week, other than that he was involved kind of heavily in trying to overturn the 2020 presidential election. And also, as far as I can tell, he’s not been active in health policy in Congress other than opposing abortion. What have you found out about Mike Johnson? Alice, you wrote about him, right?

Ollstein: Yeah, so I wrote about his anti-abortion record, and that’s just one facet. There has been a lot of good pieces this week on his opposition to gay rights and, on a lot of levels, trans rights, etc. But I focused on his anti-abortion record because that’s my beat. And so, yes, I think it’s worth noting that he used to work for the Alliance Defending Freedom, which is the conservative legal powerhouse that was behind the case that overturned Roe v. Wade, and is now spearheading the case trying to restrict abortion pills nationwide. They’re a part of a lot of other anti-abortion legal battles, as well. And, since coming to Congress, he has co-sponsored a lot of anti-abortion legislation, including bans at 15 weeks and six weeks, and none of those have gone anywhere, but that record has anti-abortion groups stating high hopes for his speakership.

But as we know, with such a narrow majority, House Republicans have been hesitant to really take big votes in anti-abortion space this year. And so, it will be interesting to watch how he navigates that.

Rovner: So, Rachel, we know he’s not on any of the major health committees. Has he done or said anything about any other parts of health care other than his Christian conservative lane?

Cohrs: Well, I think he actually has, and he has a more clear, I think, stance on health care reform more generally than a lot of the other candidates we saw because he did lead the Republican Study Committee. I think his term started in 2019, so he actually did sign on to a health care plan.

Rovner: How rare for a Republican.

Cohrs: Yeah, really. We don’t see many of those that are really spelled out. And there’s a whole white paper, it’s still on the internet, but I think it includes some policies that aren’t terribly surprising. It includes scaling back subsidies for ACA [Affordable Care Act] plans, empowering HSAs [health savings accounts], converting Medicaid funding into block grants for states, and also removing some of the ACA’s preexisting condition protections, and creating high-risk pools in states. So, it is substantive ideas about coverage and costs.

Rovner: It’s also Republican health care orthodoxy that goes back like 25 years, at this point.

Cohrs: Exactly, so nothing crazy, but we do have at least sort of a marker of where he’s at a couple of years ago. But again, I think there’s no reason to believe that he would pursue any of that anytime soon. He has a very full plate with a lot of other things.

Rovner: That’s what I was going to say, which is that Nancy Pelosi came to the speakership as one of the most liberal members of the House. That is certainly not the way she ran the speakership because, basically, her job was to find the votes for things and she had to please both the left wing of her party and the right wing of her party, and that’s hard enough for Democrats. It seems to be even harder these days for Republicans. So, no matter what his personal goals are, I guess we’re about to find out if he can actually bring together this unbelievably fractious Republican caucus.

Ollstein: And I just want to note, too, that it’s not just about the struggle to find the votes, which we saw in the very speakership debacle itself, but also, he has spoken about the need to protect their most vulnerable swing district members who are up for reelection next year. These are Republicans who are elected in districts that voted for Biden. And so those people do not want to vote on red-meat, controversial bills. We’re already hearing some issues coming up in appropriations, which is the first major hurdle he has to confront as speaker to avoid a government shutdown in just a few weeks, potentially.

And so not only is it about just getting enough votes to get bills through, but not putting these people in a position where Democrats will run a bunch of ads saying, oh, so-and-so voted for this anti-abortion thing, to try to knock them out.

Rovner: Well, while we are on the subject of abortion, there’s a lot of news there. I want to start with an update to something we talked about last week: the lawsuit in Colorado challenging the state’s new law banning medication abortion “reversals.” I put reversals in quotes. Over the weekend, a federal district court judge ruled that the law is likely unconstitutional and blocked the state from enforcing it. I imagine this is not the last we will hear about this case, right, Alice?

Ollstein: Oh, certainly. So as we discussed before, this is an issue that’s in multiple courts, potentially designed to create some sort of split that could go up to the Supreme Court and require them to weigh in. But this, in addition to the current case pending before the Supreme Court about abortion pill access, it really presents new territory, in terms of how courts could intervene in the practice of medicine.

Rovner: And as we mentioned in California, we have the opposite case going forward with the state suing a string of crisis pregnancy centers for false advertising for suggesting that they could reverse medication abortions, which, of course, is trying to give large doses of progesterone between the taking of the two medications that create a medication abortion. And it’s turned out to be that there is not a lot of scientific evidence suggesting that this is a thing. And when they tried to do a clinical trial, they had to stop it because women were having serious problems.

We also have an update from Ohio, whose November ballot measure we also talked about, and it’s right around the corner. It seems that the governor, who’s also a former senator, Mike DeWine, is going around saying that the constitutional amendment protecting abortion would allow for “partial birth abortions,” a controversial procedure that Congress actually banned in 2003 and that the Supreme Court upheld in 2007, and it’s a law that DeWine worked on when he was in the Senate. Are these scare tactics? Do we think he really believes that this is what this Ohio ballot measure would do?

Ollstein: This is among the greater arguments that are being made in Ohio around this amendment and saying it’s very similar to the arguments that anti-abortion groups and officials made in all of the states that held their own referendums last year. Basically that, should this pass, it’ll just be a complete abortion-palooza, no regulations, no nothing. And that has not panned out in those other states, and it’s especially unlikely to pan out in Ohio, given the makeup of the state legislature and Republicans controlling the state Supreme Court, all these levers of power, the governorship, etc.

And so this is not Michigan, where Democrats won control of the governorship and the Statehouse and are moving, although it remains to be seen how far they move to unwind some abortion restrictions. But that is not likely to happen in Ohio. I think these groups are parsing language in the amendment, itself, and extrapolating from that and saying, oh, this is a code word for this, and this is a code word for that, but it’s not in the text of the amendment, and because of the balance of powers in the state, it’s not likely to pan out that way,

Rovner: Although they do seem worried. Alice and I, we were both on this call the other night about all of the anti-abortion groups together trying to light a fire under their forces over this Ohio ballot measure, noting, of course, that there have been six votes since Roe was overturned in various states and that they have lost all of them. So Ohio will be a big deal in how this goes into next year.

Ollstein: Yeah, absolutely. It’ll be a big deal for Ohio. Of course, we have a six-week ban in that state that has been on hold. It has been blocked in court, but it very well could be unblocked and put back into effect if this amendment doesn’t pass. That’s the most immediate thing. So it’s a big deal for Ohio, but both sides have also made the case that it’s a big deal beyond Ohio. It really shows what kind of strategies and messaging are effective in these redder-purple states. If we can even call Ohio purple, at this point, it’s quite red.

Rovner: It is very red with one Democratic senator, basically.

Ollstein: Exactly, who is up for reelection next year. So that is going to be interesting, as well. He and other of the remaining endangered Democrats in the state are vocally supporting this, and so that should have an influence, as well, on their races.

Rovner: So we got an interesting study this week that found that abortions have actually increased in the year since Roe was overturned, although, not surprisingly, in the states where abortion was banned, where they dropped dramatically. Do we know, obviously, women are going to other states, but one would not have assumed that it would’ve gone up because we’ve talked about all the places where there were not enough slots, basically, for women wanting to terminate pregnancies and for women who were not able to travel. I was a little bit surprised by this. What did you make of it?

Ollstein: So first I want to give some big caveats. A lot of this data is guesswork. They acknowledge that a lot of the providers they reached out to for data just refused to respond, so they had to model it out based on what they were able to get. Also, this does not count any abortions that are happening outside the formal medical system. So people ordering pills from groups like Aid Access or whatnot, delivered to their home. We know that’s happening. We know that’s a very common thing, and so this doesn’t count any of that. But I think even given all these caveats, there’s some interesting things in there.

I think that what really caught my attention is not just that states like California that really moved to expand access massively, the people taking advantage of that are not just people traveling from red states. It is also reaching people who were in those blue states who struggled to access abortion even in those blue states before. And so they mentioned parts of rural California on the call announcing the data, specifically. So I found that interesting, too.

Rovner: So, well acknowledging, obviously, that more women are traveling to get abortions, abortion opponents are stepping up their efforts to make that illegal, too. This week, Lubbock County in Texas became the fourth Texas county to make it illegal to use its local highways to assist someone in traveling out of state for an abortion. On the one hand, even some anti-abortion lawyers doubt that this is constitutional. But on the other hand, a lot of these laws are more intended to chill behavior than to punish it, right, particularly in Texas?

Ollstein: Yes, like a lot of state laws and now municipal laws that are being passed in the post-Roe era, enforcement and the practicality of enforcement is not, necessarily, something that folks are very focused on because the chilling effect is the main goal. And I think this is true for bans on receiving abortion pills by mail. Unless you’re going through everyone’s mail, you wouldn’t really know. And so these travel bans, travel restrictions, as well, there has been a lot of heated rhetoric about, oh, are they going to set up checkpoints and give pregnancy tests to people? No, they’re not. If they were, please message us and tell us so we can report on it, but we haven’t seen that.

And I think the idea is that people are already scared. People are already confused about what’s legal and what’s not. We know that from polling. And so this just adds to that confusion, and if somebody is already unsure of what they’re allowed to do, this could be a further deterrent from them even pursuing the possibility of an abortion.

Rovner: Well, this will obviously continue. Let’s move on to Medicaid for a minute. Six months into the “unwinding,” an estimated 9 million Medicaid recipients have been removed from the rolls, some of whom are no longer eligible, but most of whom might still qualify, but either fell through the cracks or states were unable to locate them. Meanwhile, a new report from the Robert Wood Johnson Foundation finds that if the 10 states that are still holding out from expanding Medicaid under the Affordable Care Act were to go ahead and expand, nearly 2.5 million more low-income adults would be added to the rolls and the uninsurance rate would drop by 25%.

One of those holdout states, Georgia, is trying to expand using a pilot program with work requirements for those who want to enroll. But so far, three months in, only about 1,300 people have enrolled out of an estimated 100,000 that are potentially eligible. Why is this off to such a slow start?

Cohrs: I think the story that you highlighted from The AP gave some reasons about just the paperwork having to be filed. And honestly, having looked at some safety-net programs, it is a lot to pull together if you’re pulling financial records and all of that. So I think there’s also just the bureaucratic issues that we see with these kinds of programs that are designed to keep people out almost. And I think it’ll be an interesting test case as it continues to move forward, whether uptick increases, whether outreach catches up, and whether nonprofit groups, grassroots organizations in the state can help people navigate the process. But certainly, the paperwork burden isn’t to be underestimated here.

Rovner: Alice, you covered when Arkansas tried to implement this for everybody and it did not go well because even the people who were working, the people who were technically able to fulfill the work requirements, had trouble reporting the fact that they were fulfilling the requirements. Do you think that’s going on at the beginning of the process here, in Georgia, whereas in Arkansas, everybody was suddenly required to do it?

Ollstein: Yeah. I think it’s definitely something to watch because, well, first of all, we know from years of data that the people within Medicaid who can work, are already working. The breakdown of those who are not employed, it’s children, it’s the elderly, it’s people with disabilities, it’s people caring for people with disabilities or an elderly relative, and so this is a massive effort that could, maybe, increase the workforce by a very small number of people. And so some of this is ideological about these kinds of benefits and who is deserving and undeserving and different opinions about that. But in terms of economics and cost-saving, we do not expect this to have a big benefit. And so it’s definitely worth watching if people are falling through the cracks, because in Arkansas people didn’t even know about the requirement or they didn’t have the internet access to be able to report their hours. Lots of different ways.

Rovner: And, of course, in Arkansas, people lost their coverage. Here in Georgia, it’s a matter of people not getting the coverage who are potentially eligible. So yeah, I think we will watch to see how this goes.

Well, back here in Washington, the National Institutes of Health appears on the road to having a Senate-confirmed director for the first time in a year and a half, as the Senate Health, Education, Labor and Pensions Committee voted 15 to 6 on Wednesday to elevate National Cancer Institute chief Monica Bertagnolli to the top spot. Interestingly, one of those no votes came from committee chairman Bernie Sanders, which is pretty much unheard of for a committee chair of the same party as the nominating president. Rachel, what is he trying to prove here, and might it threaten her nomination on the Senate floor, or do we think this is a relatively done deal?

Cohrs: With your first question, I think he, for months, delayed even having this hearing, having this confirmation vote because he wanted to use the only lever he has, which is holding up nominations to pressure the Biden administration to take a more hard-line stance at the NIH and include language in contracts with drugmakers to require some sort of fair pricing or ensuring the U.S. gets the best price when the NIH is investing money in various stages of drug development. So I think that has been his goal. And I think the Biden administration, specifically HHS [Department of Health and Human Services], threw him a bone with a covid therapeutic that’s in the works from Regeneron, but it’s not what he was hoping for. And I think he put out a letter criticizing the NIH granting an exclusive license to a company where a former employee of the NIH works who worked on the medication.

And so I think he is just trying to continue to use what leverage he has, but I think the vote — that this week was a very good vote for her because we saw several Republicans join Democrats in passing her through. Again, nominations only have a 50-vote threshold in the Senate, so they don’t need a whole lot of Republicans, and Sanders, I think, was the only Democrat to oppose her in committee. So it looks like smooth sailing for her whenever they can find floor time for her.

Rovner: Yeah, and I should point out that it is a time-honored tradition in the Senate to hold up a nomination for something that’s unrelated to the person who’s being nominated, for a senator to try and get something out of the administration. What’s odd is when it’s a senator of the same party. Usually it’s somebody from the opposite party of the president trying to stall a nomination in order to get something else that they want. So this was very unusual, I must say.

Cohrs: It was, and I will say, too, that given how politicized the NIH has become with unifunction[al] research or there’s a million things that Republicans could have chosen to take an ideological stance on. We saw this with FDA Commissioner Robert Califf’s confirmation, with CMS chief Chiquita Brooks-LaSure; John Cornyn came out of nowhere and was trying to make demands of her. So we just haven’t seen the full extent that we could have seen from the GOP and trying to hold up her nomination or extract something from the Biden administration.

Rovner: Well, it does still have to get through the floor, so there is time, yet, although I agree with you, it doesn’t look like it’s going to be a huge problem.

Well, finally, this week we are launching a new segment that I’m calling “This Week in Health Misinformation.” Our first featured story is from my KFF Health news colleague Liz Szabo, and it’s called “Suzanne Somers’ Legacy Tainted by Celebrity Medical Misinformation.” It turns out that Somers, who died earlier this month, spun her sitcom fame into an entire career pushing questionable medical treatments and forgoing chemotherapy when she was diagnosed with breast cancer. Basically, in the words of one doctor quoted in this story, “She became an influencer on menopause before being an influencer was even a thing.” And lots of people who believed her were probably worse off because of it.

This is obviously something that continues to this day. We see lots of celebrities pushing dubious things. It used to just be those who were rich enough or who worked for a company that was wealthy enough to advertise on TV, even if it was in the middle of the night, but now we have social media, and this kind of misinformation is pretty rampant, right?

Cohrs: It is. I thought Axios actually had an interesting piece this week, as well, about anecdotal reports of doctors where patients are interested in getting off of birth control pills, even with everything that we’re seeing with the overturning of Roe v. Wade. And I think, again, that story you mentioned, the influencer space where people are trying to sell apps, trying to sell alternatives, spreading information about how it affects your hormone levels. And I think patients don’t have a primary care doctor where they can ask some of these questions in an evidence-based place. I think, certainly, people of all ages are getting information from these influencers on social media, and I think that it is a very interesting trend to see how that’s going to play out from doctors’ side.

Like you said, we’ve seen drug companies advertise on TV for a long time trying to influence the care that patients are getting in the office. But I think we’re seeing these other sources start to influence the choices that patients are making. It’s a really interesting trend.

Ollstein: And I think these influencers and purveyors of misinformation, they’re really taking advantage of real frustrations with the formal medical system and how it has cared for women and our needs over time and ignored people’s complaints and dismissed them, and the fact that technology has not advanced on a lot of these fronts for a long time. So I think that leaves an opening for folks to come in and take advantage of that frustration and confusion and offer a solution that may possibly be even worse.

Rovner: All right, well that is this week’s news. Now we will play my interview with my favorite libertarian health policy expert, Michael Cannon, and then we will come back with our extra credits.

I am thrilled to welcome to the podcast Michael Cannon, who’s director of health policy studies at the Cato Institute, the libertarian think tank here, in Washington. He’s the author of a new book about how to fix our broken health care system and one of my favorite people to argue with about health policy. Michael, welcome to “What the Health?’” It’s great to have you here.

Michael Cannon: Great to be here.

Rovner: So we’ll get to the book in a minute, but first, tell us the difference between the libertarian view of health care and the traditional Democratic or Republican view. I think a lot of people don’t understand that.

Cannon: Well, that actually is a good intro to the book, because the book provides a broad overview of health care, but it starts from the very simple principle that you have rights when it comes to your health care, and the most important right you have is the right to make your own health decisions. That’s where libertarians start, and that means that libertarians end up agreeing with Republicans on some things, and Democrats on other things, because neither party really takes that principle and carries it throughout all aspects of the health care debate. So we might end up agreeing with Republicans that states should not expand the Medicaid program, but we end up agreeing with Democrats.

I would say that people end up agreeing with us that women should get to make their own decisions when it comes to contraceptives, and the government should not be requiring women — if you’ve got a willing seller of oral contraceptives and a willing buyer, the government has no business stepping in between them and requiring women to get a permission slip from a government-appointed gatekeeper, what we call a prescription from a doctor, in order to buy oral contraceptives. In 100 other countries around the world, women can purchase oral contraceptives without a permission slip from a government-appointed gatekeeper without a prescription. But in the United States, the government takes away women’s right to do that. And so Democrats uphold that principle that people should give to make their own health decisions in that realm, but not in others.

Rovner: And should there be an FDA? Should there be a government referee to decide what’s safe?

Cannon: So there should be referees and there should be better referees than the one we have, and that’s actually something that I cover in the book. When you give the government the power to decide whether drugs can come onto the market or not and use the criteria of whether they are safe and effective before they can come onto the market, what ends up happening is the government imposes its values on people, its values about what is safe enough and what is effective enough. And while it does keep some unsafe drugs off the market, and that’s good, it saves lives that way. It also keeps a lot of safe and beneficial drugs off of the market in ways that harm people.

Another example of this is, again, contraceptives. Not just how the government is requiring women to get a prescription in order to buy oral contraceptives, but for a long time, the government was prohibiting emergency contraception, then prohibiting it without a prescription, and then prohibiting it unless you were of a certain age, and there was this huge fight. You covered this story.

Rovner: For many years.

Cannon: To get the government out of the way here, but it’s even worse than that. If you look at the original introduction of the oral contraceptive pill in 1960, there were other countries that had approved the pill earlier. And so when the FDA delayed the introduction of that product onto the market, that had a huge impact. Not only did it violate people’s rights, which is really important — it violates the principle of equality when the government does that — but keeping that beneficial product off the market had tremendous costs. The most recent winner of the Nobel Prize in economics, Claudia Goldin, did a lot of research showing that when the pill finally came onto the market, women were able to delay marriage. They were able to delay conception and marriage and invest in education, and we saw huge gains in women’s equality as a result of that. But when the FDA kept that drug off the market, it delayed the cause of women’s equality.

So do we want someone to provide safety and efficacy assurance? Absolutely. And if we left this to people outside of the government, not only would that system be consistent with your right to make your own health decisions, but we would get better safety and efficacy certification. And I talk about one of the ways that would happen in the book using the example of Vioxx. This is a non-steroidal anti-inflammatory drug that the FDA pulled off the market years ago. Most people, when I ask this question, don’t know the answer, but I bet you do, Julie. Do you remember where they got the evidence showing that Vioxx led to adverse cardiac events, that it was killing people?

Rovner: I do not remember.

Cannon: It was Kaiser Permanente. Kaiser Permanente, which has been investing in electronic health records since the 1960s. Once there were questions about whether Vioxx was causing heart attacks, they said, “Well, you know what? We’ve got all these records. We’ve got lots of people who’ve been taking Vioxx. Let’s do a retrospective observational study, trying to control for everything that we can, and we’ll see if there’s an impact.” And they found there was one, and that convinced the FDA that this drug that the FDA had led on the market, was, in fact, killing people. And so here you have a market-generated way of testing drugs and certifying safety and efficacy that beat the FDA, that did a better job than the FDA did at keeping unsafe drugs off of the market.

Rovner: The FDA will argue that the whole point of the way they approve drugs is that you’re supposed to test them after they get on the market, when they’re in a bigger population, in case there were things that were not seen in the original studies.

Cannon: But there’s definitely a flaw in the FDA’s model is they do randomized controlled trials, or they require randomized controlled trials, that have a few thousand patients in them that will not, cannot detect effects like those of Vioxx because the effects are so small and you will not be able to detect it until hundreds of thousands or millions of people are taking that drug. And so that is a flaw in the FDA’s model.

It’s a flaw in the whole idea of giving government the power to make these decisions and relying on government for safety and efficacy certification because if the government had never gotten involved, if we had left this completely to market forces, then I argue in the book that institutions like Kaiser Permanente, that have the motive and the means and the opportunity to test drugs … all along the way, they would not stop, like the FDA does, at testing it a few thousand people, they would keep monitoring drugs throughout, as the population taking those drugs increases, and they would catch the harmful side effects of drugs a lot faster than the FDA did. But we only have one Kaiser Permanente right now. And the reason we do is because a raft of things that the government has done to violate people’s rights to choose that sort of health plan.

Rovner: And also, we have a vast market in electronic medical records. They were all supposed to be able to talk to each other and they can’t, but let’s not go there. I don’t want to get too far off track.

Cannon: But the electronic records we have right now are there because government spent so many years suppressing them, by suppressing plans like Kaiser, that naturally invested in them, and then woke up one morning and said, well, gosh, we spent decades suppressing electronic health records, and I do talk about this in the book. Why don’t we subsidize them, now? And so now Medicare is subsidizing meaningful use of electronic medical records and they’re still not doing what the Kaiser records do because they’re not interoperable and they don’t focus on a defined patient population so that you can monitor them over time and detect these sorts of effects. That’s another wonderful illustration, electronic health records are, of the things that go wrong when you let government make these decisions for people.

Rovner: So, and I think you’ve already gotten to this. One of the biggest complaints about our health care system now is how ridiculously complicated it is for the average patient to navigate. How would what you’re supporting make that easier?

Cannon: So every economic system, whether we’re talking about socialism and communism on one of the end, and totally free markets on the other end, and things like mixed welfare states or crony capital, it doesn’t matter what economic system you’re talking about, it’s going to serve whoever controls the money. And so if you want a system that is simpler for consumers to understand, then you have to set up a system where nobody gets any money unless consumers understand, unless they’re providing consumers what the consumer wants.

The U.S. health sector consumes about $4.6 trillion, at this point. It’s about one-sixth of GDP on its way to six-sixths of GDP. And most of that money, the consumers don’t control it. One of the things that I write about in the book is I include some OECD [Organization for Economic Cooperation and Development] data that shows that in the United States, government controls, directly or indirectly, about 85% of health spending. That’s the eighth-highest of all OECD countries. Is just two or three percentage points behind the No. 1 country, which I think is Norway or Germany. It keeps changing from year to year. But that’s a larger share that, in countries like the U.K. and Canada that have explicitly socialized systems. So here we have the government compelling people to spend 85% of what we spend on health care the way the government wants, or the way that employers want, and that the industry ends up capturing those decisions about how people have to spend those resources, and we wonder why the system isn’t serving consumers very well.

So what I propose in the book is a number of things, a number of changes that would return that $4.6 trillion that we spend every year on health care to the consumers so that the system would serve them. You have to change the tax code to do that, you have to change the Medicare program and other things to do that, but I think that’s the only way to make things simpler for consumers. And there’s evidence in the book that when consumers are in control of the money, the system does become simpler for them. It provides them the price information they want and becomes easier for them to navigate.

Rovner: So transparency, which I know is a linchpin to a lot of this, and that you’ve been talking about for many more years than, I think, before it even got trendy. It’s one of the few things that Republicans and Democrats have agreed on for years, but it’s been much harder to make happen than I think anybody expected. Even with the power of government, we’re seeing, for example, hospitals pretty flagrantly ignoring the rule that they’re supposed to post prices in a consumer-accessible way. If the government can’t make it happen, how can consumers make it happen?

Cannon: I’m so glad you asked, Julie, because there’s evidence in the book on that. There’s this, what I call the most important chart you’ve never seen in health policy. It collects the results from a series of studies that employers like Safeway and the CalPERS system, for health benefits for California state employees, they did a series of experiments that put the patient in control of the money that they were going to be spending on — things like lab tests and colonoscopies, a knee and shoulder or arthroscopy, MRIs, CT scans, hip and knee replacements.

Rovner: Shoppable services, right?

Cannon: Yeah, what we call shoppable …

Rovner: They’re not emergencies, right?

Cannon: What we call shoppable services. Because the insurance companies and these employers could not get the prices down for these services, try as they might. They had hospitals charging them $60,000 for a hip and knee replacement when others were charging 12, and there was no difference in quality. The hospitals were just exploiting their market, or monopoly, power.

So what CalPERS did in the case of hip and knee replacements was they said, “Look, the hip and knee replacement candidates can go to any hospital they want, but we’re going to pay $30,000 no matter where they go. And if they go to a hospital that charges more than that, then they have to pay the balance.” As soon as the consumer had an incentive to care about price, an amazing thing happened. Not just with hip and knee replacements, but with everything else. They started demanding price information from hospitals. The hospitals began giving them the price information, making prices transparent, and then the consumer started changing their behavior by switching from the high-priced hospitals to the low-priced hospitals. And then the most amazing and glorious thing, and it’s why this is, that chart is the most important chart in health care, hospitals began dropping their prices.

The high-priced hospitals dropped the price for hip and knee replacements by $16,000 per procedure. On average, that was a 37% reduction in just two years. When do you ever see prices falling like that in health care? And if you care about universal health care, then that chart is the most important chart you have ever seen because if you care about your universal health care, nothing is more important than falling prices. But that series of experiments also illustrates that if you care about price transparency, then you want to change who controls the money so that it’s the consumer, so that health care providers have to provide transparent prices and other information that consumers want, or else they’re not going to make any money.

Rovner: So, we’ve both been around Washington for a very long time, and we know that, with very few exceptions, things only happen extremely incrementally. That’s the only way anything gets through either the Congress or the administration or, God forbid, both. So what would be one thing that you think we could do to put the system on a path to where you think it would work better?

Cannon: So in the book, you will not find Michael’s perfectly ideal conception of what a health care sector would look like. I do try to — and I should mention, the book takes that principle that you should be able to make your health decisions, and it applies them throughout the health sector. It looks at clinician licensing at the state level, state health insurance, licensing and regulation laws, health facilities regulation, medical malpractice, the tax code, Medicare, Medicaid, veterans’ benefits. And I would love to have a conversation about that sometime because that’s particularly topical, nowadays. But in each case, I don’t try to present what is the perfect libertarian idea. I try to put out there what I think is the biggest step that people would be willing to talk about, and then some incremental steps that we could take along the way. And in some cases, those incremental steps are actually pretty small, but in other cases, the incremental steps are a little bigger because it wouldn’t make sense to make them any smaller.

And well, let me give you an example. The tax code imposes a payroll tax and an income tax on every dollar of cash that you earn from your employer, up to a point, to be technically accurate, Social Security tax ends at a point. But it does not tax that dollar if your employer provides it to you in the form of health insurance. And what this arguably does is it creates what is, functionally, a mandate. Either you take some portion of your money of your compensation as health insurance, or if you want to take that money as cash and buy your own health insurance, you have to pay higher taxes, and that’s effectively a penalty if you don’t enroll in the kind of health plan the government wants you to enroll in. And I call this the original sin of U.S. health policy because that one mistake, which is an accident that Congress and the Treasury Department stumbled into, has caused just about every form of dysfunction that you will find in the U.S. health sector, and what it doesn’t cause, it made worse. And so the worst part might be that it separates workers from a trillion dollars of their earnings and lets employers control that trillion dollars year after year.

So what I propose is to change the tax code in a way that lets workers control that trillion dollars, lets them choose their health plan, and that levels the playing field between employer-sponsored insurance and other forms of insurance so they’re able to purchase health insurance that doesn’t disappear when their job does. And that might sound like a pretty big step, and I think that, kind of, it is, but it’s not as big as most people would think, I imagine, because the way I propose doing this would, I think, cap the exclusion for the first time, which is something that appeals to Democrats. They tried to do that in the Affordable Care Act. It didn’t work because it was just pure austerity, if all you do is tax health benefits. But what this proposal would do is return that trillion dollars to workers, which is, in effect, a tax cut and a progressive tax cut because it would mean more to low-income workers than high-income workers.

The average amount that employers spend on family coverage for their workers is $17,000 per year. The most recent [KFF] report just came out said, now, up to $17,000 per year, and that’s $17,000 of the worker’s earnings. So returning that money to the worker so they can control it, that’ll mean a lot to someone making six figures, but it’s going to mean a hell of a lot more to someone making $50,000 a year. They get to control a much larger share of their income. So it’s a progressive tax, but it also benefits people with expensive medical conditions more because they would get a bigger cash out than the average. Women, people with obesity, and so forth, that the economic research shows us they are actually losing control over a larger share of their earnings.

So the approach that I propose to reform the tax code might seem like a big step. I don’t think it’s going to happen in this Congress, but I think once people get their heads around how it actually serves both Democratic priorities and Republican priorities that may not only happen, but happen on a bipartisan basis.

Rovner: I can’t resist asking this question because economists love the idea of doing something about the employer tax exclusion for — I think it’s the largest single tax expenditure in the federal budget. But in the past, they’d always said, but what will consumers do if you give them back this money? There’s no market for them. Well, thanks to the Affordable Care Act, now there is a market for them, but you hated the Affordable Care Act. Would you not acknowledge, at some point, that now at least it’s more doable because if you give them back that money, there’s someplace for them to go and spend it on?

Cannon: So if people know me for anything, the role I played in trying to roll back or eliminate the Affordable Care Act. And so if folks who love Obamacare want some reason to dismiss what I have to say, there’s that. That’s there. I still think there’s a lot in the book for fans of Obamacare, but I gladly concede your point, Julie. One of the hardest parts about reforming the tax exclusion for employer-sponsored insurance is that if you do that, if you level the playing field between the employer market and the individual market for health insurance, there is a risk that some employers might drop their health plans and leave people with expensive medical conditions high and dry. That was the fear that Barack Obama exploited to great effect against John McCain in the 2008 presidential campaign, when John McCain proposed a universal tax credit. I think that was a bad proposal, and I’m not sorry that it failed, but listeners who don’t recall should look up “Barack Obama yarn commercial” and they’ll be able to see that 30-second television spot.

But as much as I do not like the Affordable Care Act, or Obamacare, as much as I think it has increased the cost and reduced the quality of health insurance, for everybody, I must concede that, now that it exists, it makes reforming the tax exclusion for employer-sponsored health insurance a lot easier. Because if someone says to me, Cannon, why should we go along with this plan of yours? What if employers drop coverage? I would say, well, first of all, employers are not likely to drop coverage. The Affordable Care Act has taught us that. Everyone thought that after Obamacare passed, employers would drop coverage. They really haven’t in the numbers we expected. But even if they do, there is that heavily regulated, heavily subsidized market that we call the exchanges that will be there for people whose employers do drop their coverage. So that becomes one less reason not to reform the tax exclusion.

Rovner: Such a good example of how it’s going to take everybody’s ideas to actually make all of this work. Michael Cannon, thank you so much. This has been fun. I could go on, I know you could go on, but we should stop now. We’ll have you back soon.

Cannon: That’d be great. Thank you so much, Julie.

Rovner: OK, we are back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org, and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?

Ollstein: Sure. So I chose a piece by my colleagues on our technology team about a massive set of lawsuits filed against Meta, which owns Facebook and Instagram. So this is challenging them for lying about their practices regarding children on their platforms, and not doing enough to prevent mental health problems for those children. And the massive array of lawsuits here, from state attorneys general, is being compared to the tobacco lawsuits that resulted in massive settlements and policy changes. And so it remains to be seen if this will result in the same, but I think there’s just been a lot of focus, especially recently, on how these platforms are designed to be addictive, are designed to push content that is outrageous, upsetting, etc., just to keep people scrolling and scrolling and scrolling, and especially how that’s impacting children. We’ve had a lot of concerns about mental health during the pandemic where kids were out of school, and thus, getting sucked into these sort of apps even more. So definitely something to follow.

Rovner: It is. Rachel.

Cohrs: So my story this week, the headline is “Ozempic and Wegovy Don’t Cost What You Think They Do,” from The New York Times and Gina Kolata. I thought this story was interesting. It essentially is a writeup of a study by the American Enterprise Institute just pointing out that net prices for these popular weight loss drugs are lower than their list prices, which may be true. And I think that she points out this interesting historical precedent with hepatitis C medications where they were really transformative, and initially …

Rovner: And crazy expensive.

Cohrs: Yes, very expensive. Also curative, which these drugs are not. But once more competition came on the market, prices did eventually go down, was the example of competition working, how, in theory, it should in this space. And certainly, we could see a similar dynamic play out with these medications. But one thing I think that just personally frustrates me as a reporter is the pharmaceutical industry likes to talk about how net prices are so much lower than list prices, and they’re so frustrated with the focus on list prices, but they never want to tell us what the net prices are. And I think that just puts reporters in a really difficult position where we don’t really know what truth is. And obviously, insurance companies are trying to spin things their own way, and pharma companies are trying to spin stuff their own way and nobody wants to show us the numbers. So I think that puts us in a difficult position.

Also, just would like to point out that a lot of employers’ insurance plans don’t necessarily cover these medications. It has been an uphill battle. Certainly there’s been progress, some state benefits plans, but there are cost concerns with these medications and I think there’s just some counter-programming here, with a new argument about the cost effectiveness long term. I thought it was an interesting point, not one that necessarily is new. And if insurance companies are covering these drugs, then patients are still stuck paying the out-of-pocket price. So interesting thought and would be good to include in cost-benefit analyses going forward. But again, if insurance companies, if pharmaceutical companies aren’t going to give us the numbers, then it just makes it really difficult to crunch those.

Rovner: I was actually interested in this story because one of the big things that I feel like people keep missing with these drugs is that they’re making these long-term assumptions that these drugs are always going to cost what they cost now. And there’s no — which is a lot of money, and would be prohibitively expensive if everybody who’s eligible for them were to take them. Obviously, we can’t afford that, but at some point, there is some competition and if they keep developing drugs, the cost will come down, and then it will be a whole lot easier for people to afford things. And then the cost-benefit analysis changes. So …

Ollstein: It might.

Rovner: Yeah.

Ollstein: We don’t really know.

Rovner: I get frustrated at people who assume that the price is what it is and that’s what it’s going to be going forward, because I suspect that is not the case. But I think you’re right. It will be high as long as they can keep it a secret.

All right, my extra-credit story is from The Washington Post this week by Greg Jaffe and Patrick Marley, and it’s called “The Pandemic Has Faded in This Michigan County. The Mistrust Never Ended.” It’s a long and beautifully written chronicle of just how enough people in Ottawa County in Michigan were convinced that public health is the enemy to result in, basically, a taking apart of the county’s health department. It is well worth reading the whole thing. It’s really heartbreaking.

All right, before we go this week, I have a sneak peek at some of the finalists for our KFF Health News Halloween Haiku Contest. The winners will be unveiled on Halloween, Oct. 31, but here’s one finalist from Michael Lisowski:

A trick or treatment,prior authorization,a fright to patients.

And here’s another, from Meg Murray:

Open enrollment,watch out for ghosts, goblins, andjunk insurance … [boo!]

OK. That is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our tireless engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner or @julierovner at Bluesky and Threads. Alice, where are you these days?

Ollstein: I am @AliceOllstein on X and @alicemiranda on Bluesky.

Rovner: Rachel?

Cohrs: I’m @rachelcohrs on X.

Rovner: We will be back in your feed next week. Until then, be healthy.

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In Episode 7 of “Eradicating Smallpox,” Shohrab, a man who was displaced by the 1970 Bhola cyclone, shares his story. After fleeing the storm, he and his family settled in a makeshift community in Dhaka known as the Bhola basti. Smallpox was circulating there, but the deadly virus was not top of mind for Shohrab. “I wasn’t thinking about that. I was more focused on issues like where would I work, what would I eat,” he said in Bengali. 

When people’s basic needs — like food and housing — aren’t met, it’s harder to reach public health goals, said Bangladeshi smallpox eradication worker Shahidul Haq Khan. 

He encountered that obstacle frequently as he traveled from community to community in southern Bangladesh. 

He said people asked him: “There’s no rice in people’s stomachs, so what is a vaccine going to do?” 

To conclude this episode, host Céline Gounder speaks with Sam Tsemberis, president and CEO of Pathways Housing First Institute. 

He said when public health meets people’s basic needs first, it gives them the best shot at health. 

The Host:

Céline Gounder
Senior Fellow & Editor-at-Large for Public Health, KFF Health News

@celinegounder

Read Céline's stories

Céline is senior fellow and editor-at-large for public health with KFF Health News. She is an infectious diseases physician and epidemiologist. She was an assistant commissioner of health in New York City. Between 1998 and 2012, she studied tuberculosis and HIV in South Africa, Lesotho, Malawi, Ethiopia, and Brazil. Gounder also served on the Biden-Harris Transition COVID-19 Advisory Board. 

In Conversation With Céline Gounder:

Sam Tsemberis
Founder, president, and CEO of Pathways Housing First Institute

@SamTsemberis

Voices From the Episode:

Shohrab
Resident of the Bhola basti in Dhaka

Iftekhar Iqbal
Associate professor of history at the Universiti Brunei Darussalam

Shahidul Haq Khan
Former World Health Organization smallpox eradication program worker in Bangladesh

Click to open the transcript

Transcript: What Good Is a Vaccine When There Is No Rice?

Podcast Transcript 

Epidemic: “Eradicating Smallpox” 

Season 2, Episode 7: What Good Is a Vaccine When There Is No Rice? 

Air date: Oct 24, 2023 

Editor’s note: If you are able, we encourage you to listen to the audio of “Epidemic,” which includes emotion and emphasis not found in the transcript. This transcript, generated using transcription software, has been edited for style and clarity. Please use the transcript as a tool but check the corresponding audio before quoting the podcast. 

[Ambient sounds from a ferry play softly.] 

Céline Gounder: I’m on a boat in southern Bangladesh, headed toward Bhola, the country’s largest island. 

We’re traveling by ferry on calm waters. But my head spins — and my stomach roils just a bit — as I imagine how these same waters nearly destroyed Bhola Island. 

[Tense instrumental music begins playing.] 

It was 1970. 

In November, under an almost-full moon and unusually high tides. 

The island was hit by one of the most destructive tropical storms in modern history: the Bhola cyclone. 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: There were floods. Back then there weren’t any embankments to stop the water from rising. 

Céline Gounder: Counterclockwise winds, torrential rains, and treacherous waves swept entire villages into the sea. People held onto whatever they could to keep their heads above water. 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: I remember at that time the water level rose so high that people ended up on top of trees. The water had so much force. Many people died. 

Céline Gounder: The Bhola cyclone killed some 300,000 people. And for those who survived, there wasn’t much left to return to. Hundreds of thousands of people lost their homes, their farms, and their access to food. 

The man whose voice you’ve been hearing was one of the survivors. 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: My name is Shohrab. I am 70 years old. 

Céline Gounder: Shohrab was a teenager when the cyclone hit. And in the days and weeks after the storm, he and his family joined a mass migration of people who fled southern Bangladesh. 

They traveled about a hundred miles north from Bhola Island to the streets of Dhaka, the busy capital of Bangladesh. 

There, they settled in a makeshift community, a kind of unsanctioned encampment dubbed the Bhola basti. 

In Bengali that word,“basti,” means settlement — or “slum,” in some translations. 

The residents forged a community, but soon, the poor people there — and what they built — would be seen as a threat to the effort to keep smallpox in check. 

Not just in South Asia — but around the world. 

I’m Dr. Céline Gounder. This is “Epidemic.” 

[“Epidemic” theme music plays.] 

[Ambient sounds from the Bhola basti, including voices of people speaking Bengali, play softly.] 

Céline Gounder: More than 50 years after the cyclone, Shohrab lives in the same area in Dhaka. 

I interviewed him at a tea stall near his home. It’s the kind of place where men gather to gossip and share stories over hot drinks. 

Inside there’s a colorful display of snacks and sweets hanging from the ceiling. Just outside we sat on well-worn wooden benches. 

And as we sip our tea, he tells me about life in the encampment in the 1970s … 

[Sparse music plays softly.] 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: I used to rent a place there. Five or six of us used to live in one room. Sometimes it was eight people in a room. 

Céline Gounder: To cover his portion of the rent he worked as a day laborer, doing odd jobs here and there. Over time the basti became home. 

But Shohrab’s new home was likely seen as an eyesore by outsiders — and by the Bangladeshi government. 

Such settlements often lack running water, or electricity, or access to proper sanitation. Those conditions spotlight suffering — and for local leaders that spotlight can be uncomfortable. 

But, public health experts had a different concern: that the settlement of Bhola migrants in Dhaka would become a deadly stronghold for smallopox. Cramped and unsanitary living conditions put the residents at high risk. 

I ask Shohrab if he remembers seeing or hearing about people with smallpox when he first arrived. 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: I wasn’t thinking about that. I was more focused on issues like where would I work, what would I eat, etc. 

Céline Gounder: As he tried to rebuild his life, other things — like food and shelter — were more urgent. 

[Music fades to silence.] 

Widening beyond that one migrant encampment in Dhaka, researchers say the picture was similar in cities and villages all across the country. 

Bangladesh was hit with a series of crises. Environmental historian Iftekhar Iqbal says each brought human suffering — and that each was a blow to the smallpox eradication effort. 

Iftekhar Iqbal: Seventies was really a time when, the coming of the smallpox couldn’t come at a, at a more unfortunate time. 

Céline Gounder: In 1970 the Bhola cyclone hit. In 1971, just four months later, the country fought a bloody liberation war. Then, in 1974, heavy rain and flooding triggered a famine. And in 1975 there was a military coup. 

Iftekhar Iqbal: The 1970s was the deadliest decade in the history of Bangladesh. 

Céline Gounder: This period is when the country became Bangladesh — winning its independence from Pakistan in the liberation war. But residents of the young nation faced cascading upheaval and turmoil. And too much death. 

[Instrumental music plays softly.] 

On the global stage stopping smallpox was important, but many in Bangladesh were just trying to make it to the next day. 

Daniel Tarantola: No. 1 priority is food and food and food. And the second priority is food and food and food. 

This was an area where survival was always in question. 

Céline Gounder: That’s Daniel Tarantola. 

He’s from France and arrived in the region with the mission of helping to eradicate smallpox, but he says the people in front of him needed help with many other things. 

Besides hunger, some of the villages he visited were dealing with two epidemics: smallpox and cholera. 

Daniel Tarantola: And we were not equipped to do anything but smallpox containment and smallpox eradication. By design or by necessity, we didn’t have the means to do anything much more than that. 

Céline Gounder: Over the course of this season we’ve talked about big, complicated issues — like stigma and bias, distrust, or First World arrogance — that threatened to derail the smallpox eradication campaign. We’ve documented the public health workers who found a way around those roadblocks. 

But sometimes the need is so big, so entrenched, that your inability to meet it can be demoralizing. I sometimes felt that during my own fieldwork: battling HIV and tuberculosis in Brazil and southern Africa, and during an Ebola outbreak in Guinea, West Africa. 

Daniel Tarantola says in South Asia the best he could do was focus on the task at hand. 

Daniel Tarantola: Meaning that you had to set up a program to eradicate smallpox or at least eliminate it from Bangladesh and at the same time not get … if I can use the word distracted, um, by other issues that prevailed in Bangladesh. 

[Music fades out.] 

Céline Gounder: Those were tough emotional realities for health workers and the people they wanted to care for. 

But … 

Daniel Tarantola: The level of resilience of this population is absolutely incredible given the number of challenges that they have had to survive. 

Céline Gounder: One of the main ways people survived the upheaval in Bangladesh was by picking up and moving away from the things trying to kill them. 

Remember how Shohrab fled to Dhaka after the cyclone? 

Well, mass migration is a survival strategy — but one that can worsen disease. 

When the cyclone refugees from Bhola landed in that under-resourced basti in Dhaka, all smallpox needed was an opportunity to spread. 

[Solemn music begins playing.] 

That opportunity came in 1975 when the Bangladeshi government decided to bulldoze the Bhola basti. 

Daniel Tarantola says it was a bad idea. 

Daniel Tarantola: We knew there was smallpox transmission in this particular area and therefore they should wait until the outbreak subsides before dismantling the shanties. 

Céline Gounder: Government officials did not wait for the outbreak to subside. They bulldozed the basti anyway. 

Daniel Tarantola: That resulted in a wide spread of smallpox. 

Céline Gounder: Here’s environmental historian Iftekhar Iqbal again. 

Iftekhar Iqbal: This eviction is considered one of the policy errors that led to the second wave of postwar smallpox. 

Céline Gounder: In the wake of that eviction in 1975, thousands of people scattered. Some surely returned back home to Bhola. 

[Music fades out.] 

Céline Gounder: Public health’s failure — the government’s failure — to meet the basic need for safety, for food and housing, delayed the goal to stop the virus. 

Shahidul Haq Khan, the Bangladeshi public health worker and granddad we met in Episode 4, says he learned that lesson over and over as he urged people to accept the smallpox vaccination. 

Their frustration with him — and by extension public health — was clear. 

[Shahidul speaking in Bengali fades under English translation.] 

Shahidul Haq Khan: There was no rice in people’s stomachs, so what is a vaccine going to do? “You couldn’t bring rice? Why did you bring all this stuff?” That was the type of situation we had to deal with. 

[Atmospheric music begins playing.] 

Céline Gounder: What good is a vaccine when there is no rice? 

Next up, I speak with Sam Tsemberis, founder of Pathways Housing First Institute. It’s an organization that advocates for meeting people’s basic needs first, so they’ll have the best shot at health. 

But in the beginning, he found out convincing institutions was easier said than done: 

Sam Tsemberis: I try to explain this rationale that I’m telling you, like people need housing first and then services. The hospital is like, “No, no, we’re in the hospital business. We’re not in the housing business.” 

Céline Gounder: That’s after the break. 

[Music fades to silence.] 

Céline Gounder: One of my mentors was Dr. Paul Farmer, the legendary doctor and anthropologist whose work in Haiti was documented by Tracy Kidder in the book “Mountains Beyond Mountains.” Paul always pushed us to look beyond the symptoms to root causes. It’s a lesson we keep having to learn in public health again and again. 

Sam Tsemberis is one of the first to apply it to homelessness. He’s the CEO of a nonprofit called the Pathways Housing First Institute. The organization promotes a model of addressing homelessness that begins with putting people into housing. 

That idea seems pretty obvious. But back when Sam first started working on homelessness — in New York City in the 1980s — the prevailing model was more like a staircase. People had to work their way up to show they were ready for, or even worthy of, housing. 

Sam Tsemberis: If you showed up applying for housing, you had to acknowledge you had a mental illness, you had to demonstrate that you were taking medication, and that you understood why you were taking medication. And you also had to have — if you had any history of alcohol or substance use, you also had to demonstrate a period of sobriety. 

It was a very tough regimen to get into housing. 

Céline Gounder: Sam said he quickly realized that wasn’t working, even though it was the only approach at the time. 

Sam Tsemberis: I was working very hard to help people navigate that. I was doing street outreach. So, “Come come to the shelter, come to the hospital, come to a treatment program, a drop-in center,” hoping that they would engage and successfully make it up the stairs and get housing eventually. 

And what began to emerge was that even if people were willing to take the first step — let’s say go to detox or go to the hospital — far too many people ended up returning to the street, which was, which was a signal that, you know, something was wrong with this system. It’s like, why are people falling back? 

And the stories on the street were compelling. You know, people would say, “No, I don’t need to go to detox. What I need is a safe place to stay.” 

Or, “Yeah, I’ve been diagnosed with schizophrenia, but … you know, and I still hear voices, but I don’t pay attention to them. Right now, I’m just cold, I’m tired, I’m hungry, I need a place to be safe. I need to go inside. That’s what I need first.” 

And the repeated pleas for safety, security, a place to call home, from people that had tried and failed and tried and failed that staircase system is what compelled me to, you know, try something different, because what we were doing wasn’t working. And that’s when we started this housing-first approach. 

Céline Gounder: Can you explain: What is that, and what’s its impact? 

Sam Tsemberis: Housing-first is the answer to a question that we ask people. “OK, what is it that you want?” And people would inevitably say, “I want a place to live, isn’t it obvious?” 

So our job as providers, then, was to figure out a way to have a program that we can get money for rent, and money for case management services, and give people who had previously no opportunity to get into housing on their own terms, and also offer the kind of clinical or social or emotional support that’s needed after people get housed. 

Céline Gounder: So how did you pilot or how did you jump-start this effort? What did that look like? 

Sam Tsemberis: So we ended up having to start our own nonprofit agency, apply for a grant, and we, with fingers crossed, we started to take people that were actively using and in some cases actively symptomatic and put them into apartments of their own and visit them a lot, not knowing how it would turn out. 

What we found, much to our shock and surprise, very pleasant surprise, is that 85% of the people we housed, even in that first year, remained housed. And we thought, well, you know, we’re onto something here. 

Céline Gounder: So instead of insisting that people be treated for addiction and mental health issues before they got into housing, you gave them housing first. And that was really sort of the measure of success. 

Sam Tsemberis: Yes. 

Céline Gounder: How successful was the program in treating addiction and mental health? 

Sam Tsemberis: The addiction and mental health treatment outcomes were modestly better for the housing-first group that didn’t require to be in treatment. But you know, their treatment was no worse and a little better than the group that required treatment and sobriety. 

And there, a measure called the overall quality of life, you know, like, how happy are you with living in the community, with your contacts with relatives, and so on. The group that went into housing first had a significantly higher quality of life than the treatment-first group. 

Céline Gounder: So I know there are people out there who will say, Well, you didn’t solve their addiction issue or their mental health issue; how is that a success? How would you respond to that criticism? 

Sam Tsemberis: This was never advertised as a program that cures addiction or cures mental illness. Recovery, in some ways, is not abstinence. Recovery, at least in the mental health business, is having a life in spite of your diagnosis. 

The main thing is you’re no longer homeless. You know, you don’t have to be on the street until you’ve cured your illness. Because if that was the case, people would likely die on the street before they cured their illness because we don’t have cures for some of these illnesses. 

Céline Gounder: So, Sam, Dr. Paul Farmer was a mentor of mine, actually, over the course of my training. And in Tracy Kidder’s biography of Paul, there’s a quote of one of Paul’s colleagues, Haitian colleagues, who says that, “Giving people medicine for tuberculosis and not giving them food is like washing your hands and drying them in the dirt.” 

Sam Tsemberis: That is so on target for what all of these issues are about. I think of homelessness, actually, as a poorly named term for all of the systemic failures that people have faced in order to end up homeless. 

We need to get, you know, take care of the emergency, put everyone in housing, but that’s sort of the beginning of the job. Then the real work starts to address the root causes that contribute and continue to increase the problem as opposed to just dealing with the symptom all the time. 

[“Epidemic” theme music begins playing.] 

Céline Gounder: Next time, on the series finale of “Epidemic: Eradicating Smallpox” … 

Rahima Banu. 

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Taunya is senior editor for broadcast innovation with KFF Health News, where she leads enterprise audio projects.

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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Autumn is for pumpkins and raking leaves — and open enrollment for health plans. Medicare’s annual open enrollment began Oct. 1 and runs through Dec. 7. It will be followed shortly by the Affordable Care Act’s annual open enrollment, which starts Nov. 1 and runs until Jan. 15 in most states. But what used to be a fairly simple annual task — renewing an existing health plan or choosing a new one — has become a confusing, time-consuming mess for many, due to our convoluted health care system.

Meanwhile, Ohio will be the next state where voters will decide whether to protect abortion rights. Those on both sides of the debate are gearing up for the November vote, with anti-abortion forces hoping to break a losing streak of state ballot measures related to abortion since the 2022 overturn of Roe v. Wade.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.

Panelists

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

• The U.S. House of Representatives has been without an elected speaker since Oct. 4. That means lawmakers cannot conduct any legislative business, with several important health bills pending — including renewal of the popular international HIV/AIDS program, PEPFAR.
• Open enrollment is not just for people looking to change health insurance plans. Plans themselves change, and those who do nothing risk continuing in a plan that no longer meets their needs.
• A new round of lawsuits has sprung up related to “abortion reversals,” a controversial practice in which a patient, having taken the first dose of a two-dose abortion medication regimen, takes a high dose of the hormone progesterone rather than the second medication that completes the abortion. In Colorado, a Catholic-affiliated health clinic says a state law banning the practice violates its religious rights, while in California, the state attorney general is suing two faith-based chains that operate pregnancy “crisis centers,” alleging that by advertising the procedure they are making “fraudulent and misleading” claims.
• The latest survey of employer health insurance by KFF shows annual family premiums are again escalating rapidly — up an average of 7% from 2022 to 2023, with even larger increases expected for 2024. It’s not clear whether the already high cost of providing insurance to workers — an annual family policy now averages just under $24,000 — will dampen companies’ enthusiasm for providing the benefit.

Also this week, Rovner interviews KFF Health News’ Arielle Zionts, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature about the wide cost variation of chemotherapy from state to state. If you have an outrageous or inscrutable medical you’d like to send us, you can do that here.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:

Julie Rovner: NPR’s “How Gas Utilities Used Tobacco Tactics to Avoid Gas Stove Regulations,” by Jeff Brady.

Lauren Weber: KFF Health News’ “Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway,” by Markian Hawryluk and Renuka Rayasam.

Joanne Kenen: The Washington Post’s “How Lunchables Ended Up on School Lunch Trays,” by Lenny Bernstein, Lauren Weber, and Dan Keating.

Alice Miranda Ollstein: KFF Health News’ “Pregnant and Addicted: Homeless Women See Hope in Street Medicine,” by Angela Hart.

Also mentioned in this week’s episode:

• The Washington Post’s “The Post Spent the Past Year Examining U.S. Life Expectancy. Here’s What We Found,” by The Washington Post staff.
• The Washington Post’s “Primary Care Saves Lives. Here’s Why It’s Failing Americans,” by Frances Stead Sellers.
• Vox’s “Vox Launches New Guide to Open Enrollment,” by Vox Communications.
• Politico Magazine’s “How Dobbs Triggered a ‘Vasectomy Revolution,’” by Jesús A. Rodríguez.

Click to open the transcript

Transcript: The Open Enrollment Mixing Bowl

KFF Health News’ ‘What the Health?’Episode Title: The Open Enrollment Mixing BowlEpisode Number: 319Published: Oct. 19, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Oct. 19, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. Today, we are joined via video conference by Alice Ollstein of Politico.

Alice Miranda Ollstein: Good morning,

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: Later in this episode, we’ll have my interview with Arielle Zionts, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” about how chemotherapy can cost five times more in one state than in another. But first this week’s news. So, it’s Oct. 19, the House of Representatives is still without a speaker. That’s 2½ weeks now. That means legislation can’t move. Are there health care items that are starting to stack up? And what would it mean if the House ends up with an anti-federal government conservative like Rep. Jim Jordan, who, at least as of this moment, is not yet the speaker and does not yet look like he has the votes?

Ollstein: So in terms of unfinished health care business, the three big things we are tracking are things that actually lapsed at the end of September. Congress did manage to keep the government open, but they allowed three big health care things to fall by the wayside, and those are PEPFAR, the global HIV/AIDS program, the SUPPORT Act, the programs for opioids and addiction, and PAHPA, the public health, pandemics, biohazards big bill. And so those …

Rovner: I think one of those P’s stands for “preparedness,” right?

Ollstein: Exactly, yes. But it’s related to pandemics, and you would think after all we just went through that that would be more of a priority, but here we are. The reauthorization of all three of those is just dangling out there and it’s unclear if and when Congress can act on them. There is some level of bipartisan support for all of them, but that is what is stacking up, and nothing is really happening on those fronts, according to my conversations with sources on the Hill because everything has just ground to a halt because of the speaker mess.

Rovner: And, of course, we’re less than a month away from the current continuing resolution running out again, and we may go through — who knows? They may get a new speaker and then he may lose his job or her job once they try to keep the government open in November. It’s a mess. I’ve never seen anything like this …

Kenen: Also, in addition to those three very political … even public health and pandemics are now politics … that Alice correctly pointed out, these three huge ideological, how are we going to get them reauthorized in the next 30 days? But there’s also more routine things that are not controversial but are caught up in this such as community health center funding, which has bipartisan support, but they need their apropos and all that stuff. So in addition to these sort of red-blue fights, there’s just, how do we keep the doors open for people who need access to health care? That’s not the only program. There are many day-to-day programs that like everything else in the government are up in the air.

Rovner: I mean, we should point out this is unprecedented. The only other time the House has been without a speaker this long was one year when they didn’t come in at the beginning of the Congress until later in January. It’s literally the only time. There’s never been a mid-session speakerless House. So everything that happens from here is unprecedented. Well, meanwhile, if you have turned on a TV in the past week, you already know this, but Medicare open enrollment began last Sunday, Oct. 15. To be clear, when you first become eligible for Medicare, you can sign up anytime in the three months before or after your birthday. But if you enroll in a private Medicare Advantage plan or a private prescription drug plan, and most people are in one or the other or both, open enrollment is when you can add or change coverage. This used to be pretty straightforward, but it’s only gotten more confusing as private plans have proliferated. This year the Biden administration is trying to fight back against some of the misleading marketing efforts. Politico reports that the government has rejected some 300 different ads. Is that enough to quell the confusion? I’m already seeing ads and kind of look at it, like, “I don’t think that says what it means to say.”

Weber: Yeah, we see this every year. It’s a ton of ads. It’s a barrage of ads that all say, “Hey, this plan is going to get you X, Y, Z, and that’s better than traditional Medicare.” But you got to read the fine print, and I think that is the big thing for all the folks that are looking at this every time. Open enrollment is very confusing, and a lot of times people are trying to sell you things that are not what they appear. So it does appear that there has been more movement to crack down on those ads. But look, the family members I talked to are still confused, so I don’t know how much that’s proliferating down quite yet.

Kenen: And even if the ads were honest, our health system is so confusing. Even if you’re at an employer health system. All of us are employed, all of us get insurance at work, and none of us really know we have made the best choice. I mean, you need a crystal ball to know what illness you and your relatives are going to get that year, and what the copays and deductibles for that specific condition. I’ve never been sure. I have three choices. They’re all decent, whether it’s the best for me and my family, with all that I know about health care, I still don’t know I made the best choice ’cause I don’t have a crystal ball or not one that works.

Rovner: Right. I also have choices, and I did my mom’s Medicare for years, as Joanne remembers …

Kenen: You did a great piece on that one.

Rovner: … this is the way I remember it. I did do a piece on that. Long time ago, when they were first starting the prescription drug benefit and you had to sort of sign up via a computer, and in 2006, not that many seniors knew how to use computers. At least we’re sort of over that, but there’s still complaints about the official website Medicare.gov, which does a pretty good job. It’s just got an awful lot of steps. It’s one of those things, it’s like, “OK, set aside two hours,” and that’s if you know what you’re doing to do this. So meanwhile, if this isn’t all confusing enough, open enrollment for the Affordable Care Act opens in two weeks, and while Medicare open enrollment ends Dec. 7, ACA enrollment goes through Jan. 15 in most, but not every, state. In both cases, if you get your insurance through Medicare or through the ACA, you should look to see what changes your plan might be making. I should say also, if it’s open enrollment for your employer insurance, plans make changes pretty much every year. So you may end up, even if you’re in the same plan, with a plan that you don’t like or a plan that you don’t like as much as you like it now. This is insanely complicated, as you point out, for everybody with insurance. Is there any way to make it easier?

Kenen: There’s no politically palatable way to make it easier. And then things they’ve done to try to make it easier, like consistent claims forms, which most of us don’t have to fill out anymore. Most of that’s done online, but they’re not using consistent claim forms and there’s nothing simple and there’s nothing that’s getting simpler. And we’re all savvy …

Rovner: It’s what keeps our “Bill of the Month” project in business.

Kenen: Right. We’re all pretty savvy and none of us are smart enough to solve every health care problem of us and our family.

Rovner: It’s one of those things where compromise actually makes for complexity. When policymakers can’t do something they really want to do, they do something smaller and more incremental. And so what you end up with is this built on, in every which way, kind of health care system that nobody knows how it works.

Kenen: Like the year I hurt both a finger and a toe. And I had a deductible for the finger, but not for the toe. Explain that!

Rovner: I assume it was in and out of network or not even.

Kenen: No. They were both in network. All of my digits are in network.

Weber: I just got a covid test bill from 2020 that I had previously knocked down by calling, but they rebilled me again. And because I am a savvy health care reporter, I was like, “I’m not paying this. I know that I don’t have to pay this.” But it took probably 10 hours to resolve, I mean, and that’s not even picking insurance. So I’m just saying it’s an incredibly complex marketplace. Shout-out to Vox who had a really nice series that tried to make it easier for people to understand the differences between Medicare and Medicare Advantage, open enrollment, what that all means. If you haven’t seen that and you’re confused about your insurance options, I would highly recommend it.

Rovner: And I will link to the Vox series, which is really good, but it was kind of looking at it. I mean, they had to write six different stories. It’s like that’s how confusing things are, which is really kind of sad here, but we will move on because we’re not going to solve this one today. So speaking of things that are complicated and getting more so, let’s turn to reproductive health. Alice, the big event that people on both sides are waiting for — one of those events, at least — is a ballot measure in Ohio that would establish a state constitutional right to abortion. So far, every state ballot measure we’ve seen has gone in favor of the abortions rights side. How are abortion opponents trying to flip the script here?

Ollstein: So I was in Ohio a couple of weeks ago and was really focused on that very question, just what are they doing differently? How are they learning lessons from all of the losses last year? And why do they think Ohio will be any different? I will say, since my piece came out, there was the first poll I’ve seen of how people are approaching the November referendum, and it showed overwhelming support for the abortion rights side, just like in every other state. So have that color, what I’m about to say next, which is that the anti-abortion side thinks they can win because they have a lot of structural factors working in their favor. They have the governor of Ohio really actively campaigning against the amendment. So that’s in contrast to [Gov. Gretchen] Whitmer in Michigan last year, campaigning actively for it. When you have a fairly popular governor, that does have an impact, they’re a known trusted voice to many. Also …

Rovner: And the governor of Ohio is also a former senator and I mean a really well-known guy.

Ollstein: Yeah. Yeah, exactly. You just have the entire state structure working to defeat this amendment. They tried in a special election in August to change the rules. That didn’t work. Now, you just have all of these top officials using their bully pulpit and their platforms to try to steer the vote in the anti-abortion direction. Also, the actual campaign itself is trying to learn lessons from last year and doing a few things differently. They’re going really aggressively after the African American vote, particularly through Black churches. And so that’s not something I saw in the states I reported on last year, and they’re really aggressively going after the student vote. And I went to a student campus event at Ohio State that the anti-abortion side was holding, and it seemed pretty effective. There was a ton of confusion among the students. A lot of the students are like, “Wait, didn’t we just vote on this?” referring to the August special. They said, “Wait a minute, which side means yes, and which side means no?” There was just rampant confusion, and it wasn’t helped … I observed the anti-abortion side, telling people some misleading things about what the amendment would and wouldn’t do. And so all of that could definitely have an impact. But like I said, since my story came out, a poll came out showing really strong support for the abortion rights amendment, which would block the state’s six-week ban, which is now held up in court, but the court leans pretty far to the right. This would block that from going back into effect potentially.

Rovner: Ohio, the ultimate swing state, probably the reddest swing state in the country. But Ohio is not the only state having an off-year election next month. Virginia doesn’t have an abortion measure on the ballot, but its entire state House and Senate are up for reelection. And from almost every ad I’ve seen from Democrats, it mentions abortion, and there’s a lot of ads here in the Washington, D.C., area for some of the Virginia elections. Republican Gov. Glenn Youngkin, who’s not on the ballot this year, thinks he has a way of talking about abortion that might give his side the edge. What are we going to be able to tell from the ultimate makeup of the very narrowly divided Virginia Legislature when this is all said and done?

Kenen: It won’t be veto-proof. Unlike North Carolina now, even if it’s the Democrats hold the one chamber they have or win both of them, and it’s really close. These are very closely divided, so we really don’t know how it’s going to turn out. But I mean he …

Rovner: One year it was so close that they literally had to draw rocks out of a bowl.

Kenen: Yeah, right. There’s highly unlikely that there will be a scenario where there’s a really strongly Democratic legislature with a Republican governor. That’s not likely. What’s likely is a very narrowly divided, and we don’t know who has the edge in which chamber. So the governor can’t just do things unilaterally, but how it plays out. And Youngkin’s backing a 15-week ban with some exceptions after that for life and health. A year ago, that would’ve seemed like an extreme measure. And now it seems moderate, I mean compared to zero weeks and no exceptions. So Virginia’s a red state, it’s swung blue. It’s now reddish again, I mean, it’s not a swing state so much in presidential, but on the ground, it’s a swing state. And …

Rovner: But I guess that’s what I was getting at was Youngkin’s trying to sort of paint his support as something moderate …

Kenen: That’s how he’s been trying to thread this needle ’cause he comes across as moderate and then he comes across as more conservative. And on abortion, what’s moderate now? I mean, in the current landscape among Republican governors, you could say his is moderate, but Alice follows the politics more closely, but half the country doesn’t think that’s moderate.

Rovner: If the Democrats retain or win both houses of the legislature, I mean, will that send us a message about abortion or is that just going to send us a message about Virginia being a very narrowly divided state?

Ollstein: I think both. I think Joanne is right in that the polling and the voting record over the last year reflect that a lot of people are not buying the idea that 15 weeks is moderate. And a lot of polls show that when presented the choice between a total ban and total protections, even people who are uncomfortable with the idea of abortions later in pregnancy opt for total protections. And so you’ve seen that play out. At the same time, there’s a lot of people on the right who correctly argue that the vast majority of abortions happen before 15 weeks, and so 15 weeks is not going far enough. And they’re not in favor of that as so-called compromise or moderate policy. And so …

Rovner: There are no compromises in abortion.

Ollstein: Truly, truly.

Rovner: If we’ve learned anything, we’ve learned that.

Ollstein: And when you try to please everyone, sometimes you please no one, as we’ve seen with both candidates and policies that try to thread this needle. And so I think it will be a really interesting test because yes, right now the legislature is sort of the firewall between what the governor wants to do on abortion, and whether that will continue to be true is a really interesting question.

Rovner: Meanwhile, we have dueling abortion reversal lawsuits going on in both Colorado and California. Abortion reversal, for those who don’t follow all the jargon, is the concept of interrupting the two-medication regime for abortion by pill. And instead of taking the second medication, the pregnant person takes large doses of the hormone progesterone. The American College of Obstetricians and Gynecologists says there is no evidence that this works to reverse a medication abortion and that it’s unethical for doctors to prescribe it. But in Colorado, a Christian health clinic is charging that a state law that bans the practice offering abortion reversal violates their freedom of religion. In California, it’s actually the opposite. The state attorney general is suing a pregnancy crisis center for false advertising, promoting the practice. Alice, how big a deal could this fight over abortion reversal become? And that’s assuming that the pill remains widely available, which is going to be decided by yet another lawsuit.

Ollstein: Yeah, absolutely. Although it’ll be a long time before we know whether mifepristone is legally available on a federal basis. But I’ve been watching this bubble up for years, but it’s up till now been more of a rhetorical fight in terms of: “Abortion reversal is a thing.” “No, it’s not.” “Yes, it is.” “No, it’s not.” “Here’s my expert saying it is.” “Here’s my expert saying it’s not.” But this is really moving it into a more sort of concrete, legal realm, and not just rhetoric. And so it is an escalation, and it will be interesting to see. Mainstream health care organizations do not support this practice. There was a clinical trial of it going on that was actually called off because of the potential dangers involved and risks to participants …

Rovner: Of doing the abortion reversal method …

Ollstein: Exactly. Yes.

Rovner: … of trying to interrupt a medication abortion.

Ollstein: Yes. This is really on the cutting edge of where medicine and politics are clashing right now.

Rovner: Yeah, we’ll see how it, and, of course, if they end up in different places, this could be something else that ends up in front of the Supreme Court. And this is, I think, less of an argument about religious freedom than an argument about the ability of medical organizations to determine what is or isn’t standard of practice based on evidence. I mean, I guess in some ways it becomes the same thing as the broader mifepristone case, where it’s like, do you trust the FDA to determine what’s safe? And now, it’s like, do you trust ACOG and the AMA [American Medical Association] and other organizations of doctors to decide what should be allowed?

Kenen: I mean, progesterone has medical purposes, it’s used to prevent miscarriages, but it’s off-label. It goes into these other questions, which all of us have written about — ivermectin, and who gets legal substances, and how do you use them properly, and what’s the danger? And there’s a bunch of them.

Weber: I think the fight over standard of care has really become the next frontier in medical lawsuits. I mean, we’ve all written about this, but ivermectin, obviously, misinformation, prescribing hydroxychloroquine, all of these things are now getting into the legal field. Is that the standard of care? What is the standard of care and how does that play out? So I agree with you. I think this is going to end up by the Supreme Court and I think it has much broader implications than just for mifepristone and abortion drugs too.

Rovner: Yeah, I do too. Well, finally, in an update I did not have on my post-Roe Bingo card, it appears that vasectomies are up in some states, including Oregon, where abortion is still legal, and Oklahoma, where it’s not very widely available. Are men finally taking more responsibility for not getting the women they have sex with pregnant? That would be a big sea change.

Ollstein: Yeah, we’ve been hearing anecdotally that this has been the case definitely since Dobbs and even before that as abortion restrictions were mounting. Politico Magazine did a nice piece on this last year profiling vasectomy [in] a mobile van. And it’s also just fascinating and a lot of people have been highlighting just how few restrictions on vasectomies there are compared to more permanent sterilization for women: no waiting periods, no fighting about it. And so it does provide an interesting contrast there.

Rovner: I know there have been stories over the years about how the demand for vasectomies goes up right before the NCAA tournament in March and April because men figure that they can just recuperate while watching basketball.

Ollstein: I thought that was a myth then I looked it up and it’s absolutely true.

Rovner: It is absolutely true.

Kenen: I mean, it also seems to be more common among older men who’ve had a family and because it’s permanent, I mean usually permanent. It’s usually permanent and right, it’s one thing to decide after a certain point in your life when you’ve already had your kids. I mean, it’s not going to be an option for younger men who haven’t had children.

Rovner: It’s also reliable, it is one of those things that you don’t have to worry about.

Kenen: Even though I looked up the figures once, it’s a very, very low failure rate, but it’s not zero.

Rovner: True. We are moving on to what I call this week in declining life expectancy. I’m glad that Lauren is back with us because The Washington Post has published the next pieces of its deep dive into the U.S. population’s declining life expectancy. And we’re going to start with a story that was co-written by Lauren, but that is Joanne’s extra credit this week. So Joanne, you start, and then Lauren, you can chime in.

Kenen: OK. It’s “How Lunchables Ended Up on School Lunch Trays.” For those of you who have never been in a supermarket or who have closed your eyes in certain aisles, Lunchables are heavily processed, encased in plastic, small lunchboxes of a — it’s not even much of a meal or small — which you can buy in the supermarket. And now two of them have been modified so that they’re allowed in schools as healthy enough …

Rovner: They’re quote, unquote, “balanced” because it’s a little piece of meat and a little piece of cheese.

Kenen: They have so far just a turkey cheese option that qualifies for schools and a pizza that qualifies for schools. Not a whole pizza, a little … but the kid in the story, the second grader in the story, didn’t even know it was turkey. It has 14 ingredients. He thought it was ham. So I mean, that just sort of says it, but it’s beyond the lack of nutrition, it started out sort of like what is this child putting in his mouth and why is it called school lunch? But the story was deeper because it was a very long investigation by Lauren and Dan Keating on the relationship between the food industry, the trade group, and the government regulation. And just say, it leaves a lot to be desired. And you should all read the story only because you can click on the story of the oversized Cheez-It.

I mean, it’s a fake one, but the replica of this as big as the planet Mars. I mean, it’s just this huge Cheez-It. And it’s a really good story because it’s overprocessed food is really bad for us. And I mean, scientists have matched the rise of this overprocessed stuff that began as food and the rise of obesity in America. And it’s not just taking the salt out of it, which they’re doing, the sodium out of or adding a little calcium or something to these processed foods. They’re ultra-processed foods, and that’s not what our body needs.

Rovner: So, Lauren, I mean, how does this relate to the rest of this declining life expectancy project and what else is there to come?

Weber: This is our big tranche of stories. I mean, we should have some follows, but that’s it. And well, Joanne, thank you for the kind words on it. We really appreciate that. But I mean, I think the point that she made that I want to highlight for this in general is what was wild in investigating this story is pizza sauce is a vegetable in the U.S. when it comes to school lunch and french fries are also a vegetable. And that’s really all you need to sum up how the industry influence in Congress has resulted in what kids are having for their school lunch today. One of the things we got to do for the story is go to the national School Nutrition Association conference, which is where we saw the giant Cheez-It. And it’s this massive trade fair of all these companies where they throw parties for the school nutrition personnel to try all the different food. And it’s wild to see in real life. And what Joanne made a good point of about ultra-processed food and what the rules do right now is they don’t consider the integrity of the food. They set limits on calories and sodium, but they don’t consider what kids are actually eating. And so you end up with these ultra-processed foods that growing body of research suggests really have some negative health consequences for you. And so, as Joanne talked about, and as our series gets into, obesity is a real problem in this country, and obesity has huge, long-lasting, life-shortening impacts. One of the folks we talked to for the piece, Michael Moss, said, he worries that processed food is the new tobacco because he feels like smoking’s going down, but obesity’s going up. And something he said to me that didn’t make the piece, but I thought was really interesting is that at some point he thinks there’ll be some sort of class-action lawsuit against ultra-processed food, much like a cigarette lawsuit-

Rovner: Like with tobacco.

Weber: Like a tobacco lawsuit, like an opioid lawsuit. I think that’s kind of interesting to think about, but this was just one of the many life expectancy stories. I want to shout out my colleague Frances Stead Sellers’ story, which talked about how it compared is brilliant. It compared two sisters with rheumatoid arthritis, one who lives in the U.S. and one who lives in Portugal. They’re both from Portugal. The one in Portugal has all this fabulous primary health care. The doctors even call her on Christmas and they’re like, “We’re worried you’re going to have chocolate cherries with brandy that would interact with your medicine.” Whereas the one in the U.S. has to go to the ER all the time because she doesn’t have steady health care and she can’t seem to make it work, ends meet. She doesn’t have a primary health care system. She’s a disjointed doctor system. And the end of the story is the sister in the U.S. who has this severe health problem is moving to Portugal because it’s just so much better there for primary care. And I think that gets at a lot of what our stories on life expectancy have talked about, which is that primary care, preventative care in the U.S. is not a priority and it results in a lot of downstream consequences that are shortening America’s life expectancy.

Rovner: Well, I hope when this project is all published that you put all the stories together and send them to every school of public health in the United States. That would be fairly useful. I bet public health professors would appreciate it.

Weber: Thank you.

Rovner: So it is mid-October, that means it is time for the annual KFF survey of employer health insurance. And for the first time since the pandemic, most premiums are up markedly, an average of 7% from 2022 to 2023 with indications of even larger increases coming for 2024. Now, to people like me and Joanne, who’ve been doing this for a long time, lived through years of double-digit increases in the early 2000s, 7% doesn’t seem that big, but today, the average family health insurance premium is about the same as the cost of a small car. So is there a breaking point for the employer health system? I mean, one of the things — to go back to what we were talking about at the beginning — one of the compromised ways we’ve kept the system functional is by allowing these pieces to remain in pieces. Employers have wanted to offer health insurance. It’s an important fringe benefit to help attract workers. But you’re paying $25,000 a year for a family plan, unless you’re a really big company. And even if you are a really big company, that’s an awful lot of money.

Kenen: One of the things that struck me is, we’re at a point when we’ve had a lot of strikes and reactivated labor movement, but 20 years ago, the fights were about the cost of health care. The famous Verizon strike. They were big strikes that were about health care, the cost. And right now, I’m not really hearing that too much. I’m sure it’s part of the conversation, but it’s not the top. It’s not the headline of what these strikes are about. They’re about salaries mostly and working conditions with nurses and ratios and things like that. I’m not hearing health care costs, but I sort of think we will because, yes, we are being subsidized by our employers, most of us. But you said, “What’s the breaking point?” Well, apparently there isn’t one. We’ve asked ourselves that every single year. And when do we stop doing it? No one has a good answer for that. And related is to what Lauren was just talking about, life expectancy. The lack of primary care in this country, in addition to improving our health, it would probably bring down cost. We used to spend 6 cents on the dollar on primary care, 6 cents. Other countries spend a lot more. Now, we’re down to 4.5 cents. So the stuff that keeps you well and spots problems and has somebody who recognizes when something’s going wrong in you because you’re their patient as opposed to … there’s nothing. I don’t mean that urgent care doesn’t have a place. It does, but it’s not the same thing as somebody who gives you continuity of care. So these are all related. I’ll stop. It’s a mess. Someone else can say it’s a mess now.

Rovner: It’s definitely a mess and we are not going to fix it today, but we’ll keep trying.

Kenen: Maybe next week.

Rovner: All right. Yeah, maybe next week. That is this week’s news. Now, we will play my “Bill of the Month” interview with Arielle Zionts. And then we will come back and do our extra credits.

I am pleased to welcome to the podcast my KFF Health News colleague Arielle Zionts who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Arielle, welcome to the podcast.

Arielle Zionts: Thanks for having me.

Rovner: So this month’s patient is grappling with a grave cancer diagnosis, a toddler, and some inexplicable bills from hospitals in two different states. Tell us a little bit about her.

Zionts: Sure. So Emily Gebel is from Alaska and has a husband and two young kids. She home-schools them. She really likes the outdoors, reading, foraging, and she was diagnosed with breast cancer. Just something that makes me so sad is she found out when she was basically breastfeeding because she felt a lump. And then when she was diagnosed, her baby was asleep in her arms when she got that call. So it just really shows what it’s like to be a mom and to have cancer. She was living in Juneau at the time. Her friends who’ve had cancer suggested [they] wanted to go to a bigger city. Whether it’s true or not, the idea was, OK, bigger cities are going to have bigger care. Juneau is not a big city, and you cannot drive there. You have to take a ferry or you have to fly in, and this is the capital of Alaska. So that might …

Rovner: Yes, I’ve been there. It’s very picturesque and very small and very hard to get to.

Zionts: Yeah, so that might be surprising for some people. The closest major American city is Seattle. So she went there for her surgery and then she decided to have chemo, and she opted for this special type of chemo that uses lower dose, but more frequent doses. The idea is that it creates less of the side effects, and she went to this standalone clinic in Seattle, flying there every week. It’s not a quick flight. It can take up to two hours and 45 minutes. And that just got really tiring. I mean, physically …

Rovner: And she’s got kids at home.

Zionts: Yes, physically and mentally and just taking up time. So she decided to switch to the local hospital in Juneau. So they had bills from the first clinic in Seattle, and then they got some estimates from the one in Juneau and then finally got a bill from there as well.

Rovner: Yes, as we say, “Then the bill came.” And, boy, there was a big difference between the same chemotherapy in Seattle and in Juneau, Alaska, right?

Zionts: I compared two of Emily’s treatments that used a similar mix of drugs and also had overlapping non-drug charges, such as how much it costs for the first hour of treatment, subsequent hours. And in the Seattle clinic, one round cost about $1,600. And then in Juneau it cost more than $5,000, so more than three times higher. And we were able to look at specific charges. So that first hour of chemo was $1,000 in Juneau, which is more than twice the rate in the Seattle clinic. There was a drug that cost more than three times the price at the clinic. And then even the cheaper charges were more expensive. So the hospital charged $19.15 for Benadryl, which is about 22 times the price at the clinic, which was 87 cents.

Rovner: Now to be clear, the Gebel family seems to have pretty comprehensive insurance. So this case wasn’t as much about their out-of-pocket costs as some of the other Bills of the Month that we’ve covered, but they did want to know why there was such a big difference, and what did they, and we find out?

Zionts: Yeah. So we started the story for NPR, we basically started saying, “Hey, this is a little different than the other ones because the family has met their maximum out-of-pocket.”

Rovner: For the year?

Zionts: Yes. Once you pay a certain amount of money for the year, your insurance will cover everything, and that can be a high number. But if you have cancer, cancer’s expensive, so you will probably hit it at some point. By the time she switched her treatment to Juneau, she had met that, so she wouldn’t actually owe anything.

Rovner: But what did they find out nevertheless, about why it costs that much more in Juneau than it did in Seattle?

Zionts: Yes. So Jered, her husband, he is somewhat of a self-taught medical billing expert. He gained this knowledge by listening to “Bill of the Month” and then reading some books about this. I mean, at first, he thought maybe they would owe money, but then he learned they wouldn’t. But he still didn’t think it was fair. I mean, he didn’t think it was fair for the insurance companies. And he did catch two errors. One of them, an estimate, was wrong. The hospital said, “Oh, it looks like there was a computer error,” and that was lowered. And then when it came for the actual bill, there was a coding error. It made one of the drugs not covered when it should have been. So that would’ve actually left them out-of-pocket costs. So he was able to lower an estimate, lower the bill. But again, even with those changes, it was still so much more expensive. And that’s when I called some experts and someone’s gut reaction or initial hypothesis might be, “Well, of course, it’s more expensive in Alaska. Alaska is small, it’s remote. I mean, it’s just going to cost more to ship things there. You need to pay doctors more to entice them to live there.”

Rovner: And it costs more for doctors to live there anyway, right?

Zionts: Yes.

Rovner: The cost of living is high in Alaska.

Zionts: Yes. The expert I spoke with, an economist who has studied this issue. He said, “Yes, that is part of it.” Like you said, everything is more expensive in Alaska, but even when accounting for that, the prices are even higher. So the growth of cost in the health care sector in Alaska is higher than the growth of overall cost. And he listed some policies or trends that might explain that. There’s one that really stood out, which is something called the “80th percentile rule,” but it was meant to contain cost for when you’re seen by out-of-network providers. And it seems that it may have actually backfired, and the state is considering repealing that. But as Elisabeth Rosenthal, one of our editors at KFF Health News, and she’s written an entire book about this, as she said, “This is how our health system works. There’s no law saying, this is how much you can upcharge for some intrinsic value of a medicine or of a service. So hospitals can do what they want.” So …

Rovner: And we should point out, I mean, this is not a for-profit hospital, right? It’s owned by the city.

Zionts: Yes. This is a nonprofit hospital owned by the city, and they don’t get a ton of money from the city or state, which is interesting though. So they’re really getting their funding from the services they provide. And the hospital said they try to make it fair by comparing it to wholesale costs, what other hospitals in the region are charging. But they also said, “Yes, we do need to account for the higher costs.”

Rovner: So what’s the takeaway here? I mean, basically what it costs is going to depend on where you live?

Zionts: Basically, what we’ve learned from all these Bill of the Months is that it’s going to vary depending on what facility you go to. And that could be within one city, the prices could vary. And then you might see some more variation between states and especially in states where the cost of living is higher or it’s more remote.

Rovner: Of which Alaska is both.

Zionts: Yes. And actually, something to add is that the amount of money that this hospital has to spend to fly in doctors and nurses and also just staff, even nonmedical staff, they spent nearly $11 million last year to transport them and pay them because they don’t have enough local people. And the other takeaway, though, is that yes, this can be explained, but also, it’s unexplainable in the sense that our health care system doesn’t have some magic formula or some hard rules about what is, quote, “fair.”

Rovner: Yes, at least when it comes to Medicare, Congress has been trying to do that for, oh, I don’t know, about 50 years now. Still working on it. Arielle Zionts, thank you very much for joining us.

Zionts: Thank you for having me.

Rovner: OK. We are back, and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Joanne, you’ve already done yours. Alice, why don’t you go next?

Ollstein: I did a piece by my former colleague Angela Hart for KFF Health News, and it’s about street medicine. So teams of doctors working with unhoused people, and this is profiling mainly in Northern California, but it’s sort of discussing this across the country. And in addition to the really very moving personal stories that she found in her reporting, she also talked about some of the structural stuff that is supporting the expansion of this kind of health care. And so California was already putting a lot of money into health care services for the homeless, but in hospitals and in clinics, they were finding that people just aren’t able to come in. Whether it’s because they don’t want to leave all of their earthly possessions unguarded or because they can’t get the transportation or whatever. And so that money’s now being redirected into having the doctors go to them, which seems to be successful in some ways, but the depth of health care problems is just so deep. And …

Rovner: But also, really the importance of primary care.

Ollstein: Absolutely. And so what they’re finding is just a lot of pregnancies and problems with pregnancy in the homeless population. And so they’re doing more services around that and more offering contraception and prenatal care for the people who are already pregnant. It’s very sad, but somewhat hopeful. And the other more structural thing is changing rules so that doctors can get reimbursed at a decent rate for providing street medicine as opposed to in brick-and-mortar facilities.

Rovner: Thanks. Lauren?

Weber: So I also have a KFF special from my former colleagues, Markian [Hawryluk] and Renu [Rayasam]. It’s just a great piece. It’s called “Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway.” So what the piece does is it interviews the doctor who helped debunk what excited delirium is for his medical organization, but it reveals that that may not help in terms of court cases that have already been decided and in terms of science in general. And I think it’s so fascinating because what this piece does is it gets at what happens when flawed science then is used for lawsuits and consequential things for many, many years to come. I think we’ve seen a lot of stories this year about flawed science and what the actual ramifications are after, and this is clearly horrible ramifications here. And it’s just kind of a fascinating question of how does that ever get made right and how do things slowly or ever go back to what they should be after flawed science is revealed? So really, really great work from the team.

Rovner: Yeah, it’s really good piece. Well, keeping with the theme of choosing stories by our former colleagues. Mine is from a former colleague at NPR, Jeff Brady, and it’s “How Gas Utilities Used Tobacco Tactics to Avoid Gas Stove Regulations.” And if you don’t know what that refers to, I have a book or several for you about the huge sums of money that the tobacco industry paid over many decades to have captive, scientific, quote-unquote, “experts” counterclaims that smoking is bad for your health. It turns out that the gas stove industry likewise knew that gas stoves were worse for your health than electric ones, and that those vent hoods don’t really take care of all the problems of the things that gas stoves emit. And that it also paid for studies intended to muddy the waters and confuse both customers and regulators. It’s a pretty damning story, and I say that as someone who is very much attached to my gas stove but am now having second thoughts.

OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks as always to our amazing and patient engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me holding down the fort at X, I’m @jrovner or @julierovner at Bluesky and Threads. Joanne, where are you these days?

Kenen: I’m more on Threads, @joannekenen1. I still have a Twitter account, @JoanneKenen, where I’m not very active.

Rovner: Alice?

Ollstein: I am @AliceOllstein on X and @alicemiranda on Bluesky.

Rovner: Lauren?

Weber: I’m @LaurenWeberHP on X, the HP stands for health policy, as I like to tell people.

Rovner: We will be back in your feed next week. Until then, be healthy.

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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

As House Republicans struggle — again — to decide who will lead them, the clock is ticking on a short-term spending bill that keeps the federal government running only until mid-November. The turn of the fiscal year has also left key health programs in limbo, including the one that provides international aid to combat HIV and AIDS.

Meanwhile, a major investigation by The Washington Post into why U.S. life expectancy is declining found that the reasons, while many and varied, tend to point to a lesser emphasis on public health here than in many peer nations.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Victoria Knight of Axios, and Lauren Weber of The Washington Post.

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Victoria Knight
Axios

@victoriaregisk

Read Victoria's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

• House Republicans are choosing a new speaker with government funding still uncertain beyond Nov. 17. But some programs are already experiencing a lapse in their congressional authorizations, notably the global HIV/AIDS program known as PEPFAR — and the problems in renewing it are sending a troubling signal to the world about the United States’ commitment to a program credited with saving millions of lives.
• Drug companies have entered into agreements with federal health officials for new Medicare price negotiations even as many of them challenge the process in court. Early signals from one conservative federal judge indicate the courts may not be sympathetic to the notion that drug companies are being compelled to participate in the negotiations.
• Kaiser Permanente health system employees and pharmacists with major chains are among the American health care workers on strike. What do the labor strikes have in common? The outcry from workers over how staffing shortages are endangering patients, leaving overwhelmed medical personnel to manage seemingly impossible workloads.
• Elsewhere in the nation, new covid-19 vaccines are proving difficult to come by, particularly for young kids. Officials point to this being the first time the vaccines are being distributed and paid for by the private sector, rather than the federal government.
• Reporting shows those getting kicked off Medicaid are struggling to transition to coverage through the Affordable Care Act exchanges, even though many are eligible.

Also this week, Rovner interviews physician-author-novelist Samuel Shem, whose landmark satirical novel, “The House of God,” shook up medical training in the late 1970s. Shem’s new book, “Our Hospital,” paints a grim picture of the state of the American health care workforce in the age of covid.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: The Atlantic’s “Virginia Could Decide the Future of the GOP’s Abortion Policy,” by Ronald Brownstein.

Sarah Karlin-Smith: The Wall Street Journal’s “Children Are Dying in Ill-Prepared Emergency Rooms Across America,” by Liz Essley Whyte and Melanie Evans.

Lauren Weber: ProPublica’s “Philips Kept Complaints About Dangerous Breathing Machines Secret While Company Profits Soared,” by Debbie Cenziper, ProPublica; Michael D. Sallah, Michael Korsh, and Evan Robinson-Johnson, Pittsburgh Post-Gazette; and Monica Sager, Northwestern University.

Victoria Knight: KFF Health News’ “Feds Rein In Use of Predictive Software That Limits Care for Medicare Advantage Patients,” by Susan Jaffe.

Also mentioned in this week’s episode:

• The Washington Post’s “Medicaid Rolls Are Being Cut. Few Are Finding Refuge in ACA Plans,” by Amy Goldstein.
• The Washington Post’s “An Epidemic of Chronic Illness Is Killing Us Too Soon,” by Joel Achenbach, Dan Keating, Laurie McGinley, Akilah Johnson, and Jahi Chikwendiu.
• The Washington Post’s “How Red-State Politics Are Shaving Years Off American Lives,” by Lauren Weber, Dan Diamond, and Dan Keating.
• The Washington Post’s “England Considers Raising Smoking Age Until Cigarettes Are Banned Entirely,” by Andrew Jeong.

click to open the transcript

Transcript: Health Funding in Question in a Speaker-Less Congress

KFF Health News’ ‘What the Health?’Episode Title: Health Funding in Question in a Speaker-Less CongressEpisode Number: 318Published: Oct. 12, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Oct. 12, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this, so here we go.

We are joined today via video conference by Victoria Knight of Axios.

Victoria Knight: Good morning.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: Later in this episode, we’ll have my interview with doctor-author Samuel Shem, who wrote “House of God,” the seminal novel about medical training, back in the 1970s, and who has a new take on what ails our health care system. But first, the news. So, we’ve been off for a week so KFF could have an all-staff retreat in California, which was lovely, by the way. And against all odds, it’s Oct. 12 and the federal government is not shut down, although the continuing resolution that squeaked through Congress at the very last minute on Sept. 30 expires Nov. 17, so we could be going through all of this again next month.

Meanwhile, conservative Republicans, who were angry that House Speaker Kevin McCarthy agreed to keep the government open, ousted him from his job, the first time ever a speaker has been kicked out mid-Congress, and things are, to put it mildly, in disarray. But I want to go back to that six-week continuing resolution. It does just continue appropriations, but it also had some important, if temporary, authorizing provisions, like for community health centers, right, Victoria?

Knight: Yeah, that’s right. There were a few provisions that just kind of kept it going as it was, funded at the same level. That was community health centers, and there were a few for the Pandemic and All-Hazards Preparedness Act. Then there were also some things that were not renewed in PAHPA, and then also the PEPFAR program [the U.S. President’s Emergency Plan for AIDS Relief], which I figured we might talk about a little bit, which is the program that funds programs in other countries to help with HIV/AIDS treatment and research, and it’s been a long-standing bipartisan program, and it has come up against some obstacles this Congress.

Rovner: Just to remind people who don’t follow this as closely as we do, the appropriations are what actually keep the lights on. Those are the spending bills that Congress has to pass, either in permanent or temporary fashion, at the beginning of the fiscal year, Oct. 1, or things shut down. Things like PEPFAR and community health centers continue to get funded, but their official authorizations expired at the end of the fiscal year. While the community health centers were kept going, PEPFAR has not. Of course, the House, which is, as we speak, still leaderless, can’t really do anything. Are there, at least, negotiations going on? I know PEPFAR really is a bipartisan program, as you say, and there is some effort to keep it going, because some people frankly say it’s embarrassing for the United States to look like it is reneging on this, even though it’s technically not.

Knight: Well, I know it was originally started under a Republican president, George W. Bush, and has always been reauthorized for five-year intervals. That’s never not happened. I’ve talked to members of Congress about this. In the House, they only want to reauthorize it for one year, and they’ve been very open about that’s because they want a new Republican president to come in and further restrict where funding is going, to really, in their mind, ensure it’s not going to abortion funding, even though there’s really no evidence that funding from PEPFAR goes to NGOs [nongovernmental organizations] that fund abortions or anything like that.

Then, in the Senate, it’s a different story. Another little factor is that Sen. Bob Menendez was the lead on this, and then he had to step —

Rovner: Oops.

Knight: He had to step down from his chair of the Senate Foreign Relations Committee, and that’s just a matter of Senate rules, since he’s under indictment.

Rovner: Again.

Knight: Again, yes, and so Sen. Ben Cardin just took that chairmanship. I’m not sure how much PEPFAR is on his radar. I tried to ask him about it recently, and he was like, “I’ve got to go to a meeting.” I know for Menendez, it was a really big thing that he cared about and was like, “I want to reauthorize it for five years.” So, as far as I can tell, it’s kind of a standstill between the House and the Senate and, to be determined, but maybe at the end of the year, if we get a big bill, something will be put in there. Maybe they’ll negotiate it to three years. I’ve heard something about that, but again, this will be the first time it hasn’t been reauthorized for five years, and that would send a signal to other countries that maybe the U.S. is not as devoted to treating HIV/AIDS and helping programs in other countries.

Rovner: Yeah, obviously, with everything else going on in the world, it’s not the biggest deal, but there are still a lot of people who are very concerned about it. The other at least somewhat surprising thing that happened on Oct. 1, the beginning of the fiscal year, is that all of the drugmakers responsible for the 10 drugs that Medicare has selected for the first round of price negotiation have agreed to negotiate, at least for now. That’s likely because the first round of the first of several lawsuits in federal court seeking to block the program found in favor of the government. In other words, the program did not get blocked by the courts. But Sarah, this fight is a long way from over, right?

Karlin-Smith: Yeah, there’s a number of lawsuits. I think we might be up to eight now, but don’t hold me to that exact figure.

Rovner: Excel spreadsheets.

Karlin-Smith: Yeah. Even this lawsuit, the initial blow I think was pretty big for the drug industry here, because we have a Trump-appointed judge who made a pretty clear preliminary decision that he doesn’t think the drug industry can make its constitutionality challenges that this law is not constitutional, which I think is a pretty big deal, because most of the initial lawsuits revolved around constitutional challenges. Then, there are other issues, in the first particular case, around whether even the people who are suing have standing or it’s ripe for a lawsuit now, whether because anybody’s actually been harmed at this point. Yet, everybody, all the companies, have entered into agreements with Medicare to negotiate now. A lot of them have said, “Well, we’re doing this, but basically because we have no other choice. We have to. We’re doing it in protest. We’re still continuing our lawsuits.”

So, you can expect two parallel tracks to be going on right now, mostly behind the scenes. This is pretty much going to take a whole year for Medicare and the companies to get to the place where we’ll then see a public negotiated price next fall, next September. And these lawsuits to proceed, again, just I think the constitutionality issue got a really big blow. There are some other lawsuits that I think could be more interesting that are arguing more about decisions Medicare made, so more about APA, Procedures Act, cases, which are a little bit different and I think might have a little bit more chance of getting the drug industry some wins.

Rovner: The APA is the Administrative Procedures Act —

Karlin-Smith: Procedures Act, thank you.

Rovner: — and basically saying that Medicare didn’t follow all of the appropriate rules in how it devised and rolled out the program.

Karlin-Smith: Right, and I think —

Rovner: As opposed to the big lawsuits that said, “You can’t force us to do this,” which, not a lawyer, but every other health provider goes under the if you want to play in Medicare, you have to take our price, so it’s hard to see where the drug companies are going to have something completely different, but that’s just me. You never know.

Karlin-Smith: Right, and this Trump-appointed judge — I keep emphasizing that because they picked the 5th Circuit, they looked for a friendly judge, and they couldn’t get the win there. He said, “Medicare is a voluntary program. The government has stopped forcing you to participate in Medicare. If you don’t like this, you can leave.” I think this is a pretty symbolic loss for the industry and some of these arguments they’re going to make.

That said, these APA cases, you can maybe see them getting more tweaks around the edges to shift the program in ways that favor it, but we know the way litigation works in this country; it’s going to be this long slog to figure out how that shakes out as the program is potentially, again, on the other side, getting worked out and maybe implemented.

Rovner: We will see. All right. Well, elsewhere in disarray, if this was the summer of strikes in Hollywood, it’s shaping up as the autumn of strikes by health workers. Last week, 75,000 workers at Kaiser Permanente — no relation, just for my listeners — in several states walked out for three days. Workers at several other hospitals in and around Los Angeles walked out, and we’re seeing pharmacists taking work actions at both of the big chains, CVS and Walgreens. All of these walkouts have basically the same thing in common. Striking workers say that the shortage of personnel is endangering patients, as those who are left at work face impossible workloads.

These employers are not in a great situation to fix this. Covid accelerated the departure of a lot of healthcare workers, and there simply aren’t the bodies to fill all of these vacant positions. Is there any settlement in sight? Any way to fix any of this that anybody’s proposed?

Weber: I think if any of us sitting at this table have family, friends that work as nurses or pharmacists, they’ve been hearing about these problems for years. I mean, all it takes is talking to somebody that works in this industry to realize that they have been short-staffed and underfunded for a very long time. A lot of them really worry about the actual errors that can result from that. I mean, I think what’s really important to consider is to get to a strike, you have to have a lot of bad things going on. I mean, I think some of the reports say that some of these hospitals have filed countless complaints with the local county health in California that had not gotten listened to about their staffing shortages.

When you have short staffing for nurses, that means that you feel like patients are not getting seen. Something could be happening. They feel like they’re putting these people in jeopardy. I don’t really think there’s going to be a lot of end to this in sight. I think, once you kick off these strikes like this, it’s a bit of a chain effect. I mean, we saw CVS pharmacy employees had a strike, and then Walgreens employees have started doing that.

Frankly, the CVS one was pretty successful. The CVS CEO went out there and said, “Look, we hear your conditions. We’ll work on cutting down hours, and we’ll try and accommodate you.” I think we’re going to be in for a lot more of these in the months to come.

Rovner: Yeah, I mean, it’s one thing if workers — there aren’t enough checkers at the grocery store and you have to stand in line for longer, but it’s quite another thing when you have a nurse in an intensive care unit trying to keep track of six patients instead of three or a pharmacist trying to keep track of basically everything that’s going on with no help. That’s what we’re seeing around the country with these shortages of trained health care workers.

In California, there’s another complication, because they actually have laws about patient-nurse ratios in hospitals, and some of them are not being actually obeyed, so I imagine that this is going to go on. We hear a lot about health care worker shortages. I think this is the worst one that I’ve seen in my career, where there just really aren’t the bodies to meet the demand here.

Well, speaking of things that also aren’t going swimmingly — that seems to be our theme this week — there’s a lot of early demand for the new covid vaccine that was approved in September, and apparently not a lot of supply. Also, as we just discussed, a lot of the responsibility for the vaccine is being pushed to pharmacies, whose already overstretched staff simply don’t have the bandwidth to deliver vaccines in addition to all the drugs that they’re asked to be counting out and prescribing. Sarah, shouldn’t the system have been more ready for this? It’s not like we didn’t know pretty much exactly when this vaccine was going to become available. They’ve been saying mid-September for the last five months.

Karlin-Smith: Right, yeah. I mean, there’s definitely been a lot of criticism, particularly on the health insurance side with the codes and things not being set up to put it in. It’s less clear exactly what has gone wrong in the supply chain issue, where there are reports of wholesalers not being able to get supply to the pharmacies. Do you even have enough shots? Lots of people are reporting they have appointments. They get there. They show up. The pharmacist is out.

One thing I’ve been wondering is just there’s been low uptake of boosters in the U.S., and so if it’s been harder for them to predict how much supply they want to have, it’s a bit different when the government is no longer funding those shots. Pharmacies, doctor’s offices have been concerned. What if they buy more than they end up using? Are they out money? I know, in some cases, some of the companies have made some concessions and said, “We will take back unused product,” and so forth, because there’s just different financial considerations that I think are impacting how much supply is on hand at different times right now.

Rovner: And, of course, it’s even worse for kids, right? Because kids can’t go, generally, to the pharmacies to get their vaccines.

Karlin-Smith: Right. Most of the country, to get a vaccine by a pharmacist, you have to be at least 3. It varies a little bit by state and so forth. A lot of pediatricians’ offices don’t have these shots. One of the reasons it seems to be is that, again, these wholesalers who ship the supply around the country have prioritized adult vaccinations. I know, personally, my pediatrician’s office still does not have a shot, as well.

Rovner: And you have two little ones, right?

Karlin-Smith: Right. Again, I have one under 3, and I looked into vaccines.gov the other day to see what would they tell me if I put in for an under-3-year-old. There was one pharmacy in all of D.C. that claimed they would vaccinate someone under 3 for covid, which, I haven’t done the legwork yet to see if that’s actually correct, but, you know, you’re hearing these reports of people traveling really far to get pediatric shots. Again, just to emphasize that there are babies being born all the time who, when they turn 6 months, they are getting their first covid shot, right? They have not, hopefully they haven’t, had covid. You want them protected before they get exposed, so that’s a really crucial gap in the health system that I think people don’t appreciate, because a lot of people are just thinking now, well, oh everybody’s had covid or had two or three shots, and this is a particularly vulnerable population that’s having trouble finding vaccines right now.

Rovner: Yet, I mean, considering it’s very early in the respiratory disease season, there seems to be a lot of covid going around right now, which I suspect is why there’s such a demand, at least among the people who are most concerned about getting the vaccine, for getting the vaccine. It feels like it did at the beginning, when it’s like suddenly there’s this big rush of people at the beginning who want it. Eventually, there’ll probably be more vaccine than is needed, but for right now, I mean, I’m seeing lots and lots and lots of stories and anecdotes and everything about people, as you say, making appointments, showing up, and having the pharmacy saying, “Oops, we didn’t get our supply.”

Karlin-Smith: I mean, there’s been this sort of hope and narrative that covid, is it going to become seasonal in the way we think of flu, where there’s generally a more clear, defined season? You can kind of make a good guess that the best time to get your flu shot is in October and know you’ll be protected all flu season. As much as we hope that’s the case with covid and eventually becomes the case, that’s really not true now. We’ve still had — again, they’re relative maybe compared to some other surges, but we’ve had surges pretty much every summer, so it’s been really difficult. A lot of parents, I think, wanted to get their kids vaccinated before they went back into school and classrooms. If you have little kids, you just know, it becomes a big germ bath, and everybody gets sick.

Rovner: And parents wanted to get themselves vaccinated before their kids went back to school and brought home those germs.

Karlin-Smith: Right, so the timing of it, again, hasn’t been great, for that regard, but I think it is just this difficulty with covid, in that we haven’t had that same predictability of when you might get it during the year, so it is a lot harder to protect yourself.

Rovner: We’ll see how that sorts itself out. Well, keeping with our continuing theme of things that are not going great, let’s talk about the Medicaid unwinding. Our podcast colleague, Amy Goldstein, has a troubling story in The Washington Post about how people whose Medicaid coverage is being canceled but who are eligible for subsidized plans under the Affordable Care Act are in fact having trouble making that transition. Sometimes people are falling through the cracks because states don’t have enough information to know what they’re eligible for or they don’t have the staff to process the transitions.

Sometimes in states like California, people fail to follow up, even when they are given all the information they need. Is this just the inevitable fallout of trying to redetermine the complicated eligibility rules for more than 90 million Americans in a single year, or could something more have been done? I mean, how many times did I hear them say, “It’s OK if you get dropped from Medicaid. We’re going to get you onto your Affordable Care Act plan that’s fully subsidized.” That doesn’t seem to be happening in every state.

Karlin-Smith: I mean, it seemed like, from Amy’s reporting, that there are some states that have connected their Medicaid systems and their exchange sign-ups really closely, and those are going better, but —

Rovner: California, yeah.

Karlin-Smith: Right. Yeah, she mentioned the Medi-Cal system, but then even these states that she calls out as the success stories still have fairly low transition rates. It’s just one of the many examples of our country of having such separate systems and very different bureaucratic processes for sign-up that really hurt people. As we’ve seen with this Medicaid process, a lot of it is just about these paperwork, if you will, call them burdens, that really get people to lose their health insurance and not be covered, so that’s really —

Rovner: I taped a podcast earlier this week aimed at young adults, teaching them how to quote-unquote “adult,” talking about health insurance and open enrollment and how to get signed up. After the Affordable Care Act, there are so many more protections than there were before, and yet it is still unbelievably complicated to try to explain to somebody who’s facing this for the first time. There are just so many possibilities and so many ways. There’s lots of ways to get health insurance, and there’s even more ways to fall through the cracks and not get health insurance. It seems that the more we try to put band-aids on the system, the more confusing it gets to everybody. Maybe I’ve been doing this for too long.

All right, well, finally this week, also in not great news, The Washington Post has published a giant project on declining life expectancy in the United States. It turns out the problem is a lot more complicated than just covid and drug overdoses. Those are the things we’ve been hearing about for a while, although those are indeed a piece of it. Lauren, you were part of the team that put this project together. Tell us the real reasons why Americans aren’t living as long as they used to and aren’t living as long as people in other countries.

Weber: Our team found that income had a big, big part to do with that. The poorest counties in the U.S., compared to the richest counties of the U.S., are doing 6 times worse than they were 40-some years ago, when it comes to life expectancy. The income gap has increased, obviously, but not nearly as much as the life expectancy gap has increased. I think that says something about the U.S.

In general, I mean, as you mentioned, a lot of people consider opioids, deaths of despair, to be what’s killing Americans across the country, but they’re really overlooking chronic illness. Our reporting, my reporting with Dan Diamond and Dan Keating and I, we looked at how the politics also play into life expectancy. What we found is that public health initiatives and public health laws, like tobacco laws for tobacco taxes, seat belt laws, and investing in public health, does have a direct correlation to longevity of life.

State politics and state policies and lawmaker decisions can shave years off of Americans’ lives. What we found in our reporting and in our analysis is that that was happening in red states, particularly those in the South and the Midwest. What we did is we compared three counties that ring Lake Erie: Ashtabula, Ohio; Erie County, Pennsylvania; and Chautauqua, New York. These three counties, they’re all pretty down on their luck. Industrially, the jobs have gone. None of these counties is a success story in health, but they’re all across state lines. It’s just very vivid to see how the different tobacco taxes, seat belt laws have resulted in totally different outcomes when it comes to life expectancy. And you could see, even reflected in these counties, the covid death rates tracked the state investments in public health and the state infrastructure in public health.

So, you know, something that our series looks to do is explain why a state like Ohio has the same life expectancy as Slovakia. One in 5 Ohioans won’t make it to 65. That’s a pretty wild stat. I think a lot of people in this country don’t realize that life expectancy, some of these preventable diseases are preventable.

Rovner: Yeah, I mean, I was really taken by the comparison of tobacco taxes. Where the tobacco taxes were the lowest, which I guess was Ohio, the rate of smoking and, surprise, smoking-related diseases was much higher, and therefore life expectancy was much lower. I noticed The Washington Post had yet another story this week, not quite the same, but how Great Britain and some other countries in Europe are trying to effectively ban smoking, not by banning it outright, which will just make it a black market, but by doing it year by year so that the current cohort of people who smoke will be able to continue but as younger people get older, it will become illegal, until eventually, when everybody dies off, smoking will be basically banned in Great Britain. Somehow, I can’t see that ever happening here, but it’s certainly a public health initiative that’s pretty bold.

Weber: It’s pretty bold. It would not happen here. I mean, look, one of the legislators that we talked to in Ohio, who had stopped a lot of the tobacco taxes — Bill Seitz, House floor majority leader for Ohio — he smoked for 50 years before he quit this summer, actually, because he got kidney cancer and lost a kidney, so he stopped smoking. But what he said to us, when we asked him how he felt about having blocked all these tobacco taxes and if he planned to keep doing that, he said, “Well, just because I quit smoking doesn’t mean I’m going to become a smoke Nazi now. People have the liberty and the right to smoke.”

I mean, a lot of what our reporting came down to is this concept of personal freedom and liberty versus public health, looking at the community as a whole. It was really fascinating to dig into some of the interesting dynamics in Ohio, especially because Gov. DeWine, who is a Republican, has been more bold on public health and has tried to push the legislature to consider more of these initiatives, in part because he has a personal story. His daughter died over 30 years ago in a car accident, and so he’s been very aggressive in especially car safety, but really in a lot of public health initiatives because, as he told us, that kind of death clarifies things for you when it comes to tipping the scales for people’s loved ones. We’ll see that dynamic play out across the U.S., but it is fascinating to examine how tobacco is very much with us. I mean, 20% of Ohioans smoke. I mean, this is not — I think a lot of people consider opioids and these things to still be the new thing to focus on, but tobacco cessation is still very much a fight happening across the country.

Rovner: It’s interesting to me that it’s not just — I mean, the shorthand is red versus blue, but it’s not really just red versus blue because, as you point out, Gov. DeWine’s a Republican, fairly conservative Republican. Before him, Gov. Kasich, also fairly conservative, or used to be considered a fairly conservative Republican. I mean, it’s really about being pro-public health or anti-public health. It gets us back to PEPFAR, right? Victoria, in the early 2000s, Republicans were very pro-public health. Newt Gingrich led the charge to double the funding at the National Institutes of Health. And these days, what you have are very conservative Republicans who apparently don’t believe in public health or in science.

Knight: I was going to say, I think what this series does so well is it emphasizes that so much of our challenges in the U.S. with health is not about the medical system of health; it is the things that we sometimes don’t even think about as health care, not even just public health, but the economic practices, our labor practices, our housing, our food system, that actually these are some of the main things that end up impacting who is living longer and healthier, and so forth. I actually did an interview with an outgoing pharma lobbyist this week, and she was saying — she mentioned chronic diseases, which was a big part of Lauren’s story, and saying, “We actually have more problems with chronic disease now than we did when I started, even though now we have all these cheap, generic medicines for, you know, we have statins and blood thinners and a lot of diabetes medicines that are generic and all these things.” Yes, we have problems with people accessing this medical system and affording it in the U.S., and that’s a big thing, but a lot of this is starting way before you get to the hospital and the doctor’s office, and the U.S. has all these amazing technologies, but we’re failing on these much more basic solutions to keeping people healthy and alive.

Rovner: It’s also not just physical access to health care. I mean, Ohio’s the home of the Cleveland Clinic, for heaven’s sakes, one of the major health care providers in the country. Many parts of Ohio are pretty rural, but it’s not like people have to drive hundreds of miles to get health care. I mean, this whole public health issue is not simply a matter of people can’t get to the doctor, the way we have concerns about that in places like Texas and the Far West. I mean, it really is just these everyday things, whether you wear your seat belt, whether you start smoking. I think it kind of shined a light on actual public health and the importance of public health to life expectancy.

Knight: I think, also, just going back to the politics of it for one second, I mean, I think the result of some of this is just the increased polarization between the two parties, and Republicans also, I think, were really mad about some decisions made during covid, and so we’re also seeing that where they’re, at the state and local level, wanting to strip money from public health departments, as Lauren has reported on at KFF Health News and the Post, and then that’s also, you’re seeing that in Congress as well, now, where they’re not wanting — they’re angry at some of these decisions made, and they want to strip funding from the CDC. They want to strip it from the NIH. We don’t know how the appropriations bills are going to end up, but it’s definitely something that they’re talking about in the House, at least, which is in Republican control.

Karlin-Smith: Everybody I talk to about anti-vaccine sentiment, they say once these sort of sentiments become aligned with your political identity, it makes it so much harder to shift course, so again, this idea that there’s political alignment around how we think about public health is just seen as so problematic because of how people see their identities. It becomes much harder to change people’s opinions when it’s tied into your politics like that.

Weber: Yeah, and I just wanted to highlight, so one of the folks I met in Ashtabula, Ohio, was Mike Czup, who was a funeral home owner, who was 52 years old. What he told me is that a quarter of the people he buries are younger than him. I mean, that’s just a wild statistic; a quarter of the people he buries are younger than him. Honestly, he wasn’t even surprised. I mean, that was just the norm. That was the way of life. I think that’s what this series shines a light on is that people across the U.S. just assume that lung cancer, heart attack, stroke — that’s just what happens. But that’s not the case across the world. It doesn’t have to be the case, and in certain states it’s not the case. California has much better life expectancy than Ohio does, despite them both being on a very similar trajectory in the ’90s. It’s pretty stark findings.

Rovner: Yeah, it’s a really, really, really good series. We will link to it on the podcast page. All right, well, that is this week’s news. Now we will play my interview with Sam Shem, physician, author, and playwright, and then we will come back and do our extra credits for this week.

I am honored to welcome to the podcast Samuel Shem — not his real name, by the way. Dr. Shem shook up the world of medical training back in 1978, when he wrote a groundbreaking novel about his first year as a medical resident, called “House of God.” It was funny and sad and painted an altogether not very pretty picture of medical training in Boston at some of the nation’s most esteemed hospitals and medical schools.

He has spent most of the past five decades crusading, if I can use that verb, to “put the human back in health care.” Fun fact: My mom interviewed him for The Washington Post in 1985. Now Shem has a new novel called “Our Hospital.” It paints a funny and sad picture of the state of medical practice and the state of the American patient in the era of covid. It’s actually the fourth and final volume of his irreverent evaluation of the U.S. health care system. I spoke to Dr. Shem from his home office in upstate New York and started by asking him why he wanted to write a novel about covid.

Samuel Shem: I don’t know how much longer I’m going to be able to write. Nobody does, really. What I did is I said, “Someone has to write about what’s going on in a hospital, and we have to now talk about nurses.” I haven’t put them at the forefront until now, because they have done so incredibly much. I’m taking all the other books, the “House of God” books and others, and I’m bringing them all together like a family. I don’t have a big family, so I’m absolutely doing this with care and vehemence and also a lot of skill in shifting gears, so go read it.

Rovner: I sort of approached this with trepidation, because who wants to read a novel about covid? But, in the end, it’s a pretty optimistic book about what the future of medicine can be, which, forgive me, feels odd for a novel about covid and the possible end of democracy. Are you really that optimistic about America’s ability to cure what ails our health care system, or did you just get tired of writing depressing literature about the health care system?

Shem: Well, I am a crazy optimist, because I grew up in a time, like your mother, when things changed. They changed because we got out there and we were in the streets, and it changed. I was partly in the USA and partly on a Rhodes in Oxford. I think we just have to get together and try to stay together. What this book does: The doctors and the nurses come together, and that is an immense force. We can do this. That’s what I think. The best person in the book, that I have ever written, in some ways, were the women nurses.

Rovner: The heroes of this book are all women, doctors and nurses. You’ve obviously been roundly criticized for your portrayal of women in the original “House of God.” Is it just that you wanted to make it up, or do you really think that women are the future of fixing health care?

Shem: The future of anything. My wife, Janet Surrey, and I, we worked a lot a long time ago on male-female relationships. Women are a beacon of what men could do in medicine. You’ve got to have some kind of group that can get what we need.

Rovner: You’ve watched the evolution of medical practice in America for half a century now, the amazing advances and depressing depersonalization and corporatization. Which one is winning, at this point?

Shem: Well, both. The money — it’s hard to take money from people with so much money. It’s crazy. It’s insane. There are other models, in Australia and all that stuff. What’s happening, unfortunately, is that doctors are running. They’re saying, “I don’t want to do this anymore.” Sooner or later, with some giant people talking about it — doctors and nurses — it can’t go on. It really can’t go on.

Some of the things that I’m hearing: Doctors, they’re saying, “Well, in two years, I’m gone. I can’t do this anymore.” But we can’t do it alone. I can’t say it so more and more. I mean, I know a lot about this in various different jobs I’ve had. It’s got to be with doctors and nurses.

Rovner: What ties a lot of your writing together is the notion of burnout for medical professionals, which may be, as you mentioned, one of the biggest problems right now in U.S. health care. If you could wave a magic wand, what’s one thing that you could do that could help medical professionals, both doctors and nurses and everybody else who works in medicine, love their work again?

Shem: It’s terrible. Young doctors, they don’t know what to do, you know?

Rovner: I mean, do you worry that people won’t want to go into medicine because it’s now viewed as doctors particularly don’t have the community esteem that they used to? Health workers are in danger sometimes in their own workplaces. It’s not a great situation.

Shem: Yes, I think we became horrified when we went on our first medical school times that we were in the hospital. Right when the kids go into the hospital, it’s obvious. It’s really obvious. They’re seeing the house staff spending 80% in front of a computer to bill, so they can’t help but do it.

The problem is you’ve spent so much money and so much time. What the hell should I do? But there are people who are really paying attention to this. I don’t really do it in person too much, but in everything I say these kinds of things, so I think it might help.

Rovner: You’ve now influenced several generations of medical practitioners. Is there a single lesson that you hope you have imparted on all of them?

Shem: Yes. This is what I start my addresses with. I call it staying human in medicine, the danger of isolation and the healing power of good connection. It’s not I-you; it’s the connection that goes after each of them. What’s good connection? Mutual connection. If it’s not mutual, it’s not that good. If you let me, maybe I could read the very end. Is that all right?

Rovner: Yes, please.

Shem: “I’m with you totally. Almost everyone in medicine is hurting, doctors, nurses, and all the others, working in the money-driven hell realms of American care. We’re all suffering terribly. Covid has lit it all up for all to see. The resists to our bodies, minds, and spirits are profound, killing ourselves, acting normal, the poor and people of color dying in droves.”

He paused, scanning the trees for the fat man. Nothing. He went on, “We do miracles every day, we doctors, but we haven’t been able to get a place to work in body and spirit. One in 5 health care workers have quit. Many of us died. At the start of covid, we did the most important thing for us and our patients. We stuck together.” We did. It’s a model, right? But not lasting into the daytime. Hatred and money killed it. I have confidence. We’re no dopes, we docs.

I just think people like you, and people who pay attention, it’s inevitable. I do think it’s inevitable that we’re going to get better stuff. It really will.

Rovner: And get some of the greed out of medicine?

Shem: Yes, because it’s going to crash. You can’t go on like this. Nobody can go on like this. I think so. I really do. You know what? It doesn’t take much. How did we get rid of the presidents in the ’60s? Basically, people who are into power are scared about losing the power, you know, all of the people who protect them and all that stuff.

Rovner: Well, thank you very much, Dr. Samuel Shem. Thank you for joining us.

Shem: OK.

Rovner: We are back, and it’s time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Victoria, why don’t you go first this week?

Knight: Sure thing. My extra credit is from KFF Health News, and it is called “Feds Rein In Use of Predictive Software That Limits Care for Medicare Advantage Patients,” by Susan Jaffe. This basically was looking at how Medicare Advantage plans, which are plans that private health insurers run for people that are of Medicare age — they’re basically running their health insurance programs — it’s talking about how these MA plans are using predictive software systems to make coverage decisions for patients, and so they’re looking at other patients that may have similar illnesses and what their treatments were and how long it took to treat them and then, based on that, deciding when they should cut off coverage for patients.

Rovner: That doesn’t always work very well, does it?

Knight: No, it does not. This story chronicles how this has happened to several patients, who were not ready to finish having whatever their treatment, illness — the person profiled in the story still couldn’t walk well. She had a colostomy bag, and they were going to cut off her coverage, and so she had to keep paying for it, almost $10,000, just because this software said, “Oh, you should be done by now, based on other people’s cases.”

But there is some good news, in that there is a Biden administration regulation that will be put into effect in January, and that’s going to do a better job of making sure these plans take the individual patient’s circumstances into account when making these coverage decisions, but we’ll see how that actually plays out. It takes effect in January.

Rovner: Really good story.

Knight: Yes, it’s a very good story, yes.

Rovner: Sarah.

Karlin-Smith: I looked at a Wall Street Journal story, “Children Are Dying in Ill-Prepared Emergency Rooms Across America,” by Liz Essley Whyte and Melanie Evans. It’s a piece that talks about how so many hospitals are not properly equipped to treat pediatric patients when they go to the ER. It’s a failure of regulations, standards, and so forth. They really document how this has been a long-known problem, going back 20-plus years, and things have not changed. This may mean that you might not — even if you have a hospital near you — you might not have a hospital that really can successfully save your child’s life. That is because children are not little adults. There’s different — you really have to be trained to know how to deal with them in emergencies and also even just have the equipment, the specialized sized equipment and so forth, to deal with them in emergencies.

It’s a really sad story. It gets into some of the economic reasons why these hospitals are not prepared. But again, it gives you a sense of a connection to Lauren’s piece, and the Post’s big piece, which is that we have a lot of tools and technology we’ve developed in this country, but if it’s not available to the people when and where they need it, lives don’t get saved.

Rovner: This piece really shook me, because I assume that — I mean, kids are the ones who seem to end up in the emergency room most often. They’re the ones who have accidents and fall off their bikes and get sick in the middle of the night and all those other things, and yet so many emergency rooms are not prepared for them. Anyway, Lauren.

Weber: I picked a piece that is particularly alarming if you know anyone that has a CPAP [continuous positive airway pressure] machine, but it’s titled “Philips Kept Complaints About Dangerous Breathing Machines Secret While Company Profits Soared.” It’s a collaboration between ProPublica, the Pittsburgh Post-Gazette, and Northwestern, and I believe a Netherlands paper, as well. It’s a very disturbing investigation about how Philips knew, had been getting a ton of complaints, that when they rejiggered some of their breathing machines, the foam was disintegrating and chunks of the black material was then getting into people who were using the breathing machine’s lungs and, from the court cases, it appears, causing them potential cancers and adverse health effects.

The FDA, I guess, from reading the piece, requires that companies report complaints, but according to this, Philips did not tell the FDA about all these complaints. It’s a really alarming story, because you’re like, how many other companies are not telling anyone about the complaints they’re receiving? Just really well-done investigation. It appears to be based on court documents, so hats off to them, but very disturbing, again, if you have anyone that has a CPAP or breathing machine they need to sleep, which is vital for everyone. If you have an understanding about how those work, you are hooked up to it, so you are forced to breathe through it, so it really disturbed me that that could be causing you adverse health effects down the road.

Rovner: Yeah, I mean, this is obviously not the first story we’ve seen on this, but it’s certainly one of the most detailed stories that we have seen about this. Well, my story this week is from The Atlantic, by Ron Brownstein. It’s called “Virginia Could Determine the Future of the GOP’s Abortion Policy.” I think he’s right. Virginia votes in odd-numbered years, remember. While Republican Gov. Glenn Youngkin isn’t on the ballot next month, the entire state legislature, which has teetered between Republican and Democratic control over the past several elections, is facing the voters.

Democrats in Virginia, as elsewhere, are charging that if Republicans take back the majority in the State House and Senate, they will restrict abortion, which is likely true, but Republicans say they won’t, quote, “ban abortion,” per se, but would rather set a limit of 15 weeks, with exceptions for rape, incest, and the life of the pregnant person. If voters in a purple state like Virginia see that as a compromise position, rather than a ban, it could set the stage for Republicans elsewhere to fight the current Democratic advantage on the abortion issue. We will see, in about a month, how that all shakes out.

OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review. That helps other people find us, too. Special thanks, as always, to our amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X @jrovner or @julierovner at Bluesky and Threads. Sarah?

Karlin-Smith: I’m @SarahKarlin or @sarahkarlin-smith.

Rovner: Lauren.

Weber: I’m @LaurenWeberHP, for health policy.

Rovner: Victoria.

Knight: I’m @victoriaregisk [on X and Threads].

Rovner: We will be back in your feed next week. Until then, be healthy.

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Why is treating drug-resistant tuberculosis so expensive?

Pharmaceutical giant Johnson & Johnson’s patents on a drug called bedaquiline have a lot to do with it.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with writer and YouTube star John Green about how he mobilized his massive online community of “nerdfighters” to change the company’s policy and help make the drug more accessible.

But not every lifesaving drug has a champion with a platform as big as Green’s. Drug companies’ patents limit access to affordable treatments as well.

Weissmann also speaks with drug-patent expert Tahir Amin about how companies keep their drugs under patent for so long and the legal challenges that have been made to these policies around the world.

Dan Weissmann

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Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.

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Transcript: John Green vs. Johnson & Johnson (Part 1)

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there — A little while ago, I got to talk with this widely-beloved dude. 

John Green: My name is John Green, and I’m a writer and YouTuber.

Dan: John Green, writer, may be the most likely to ring a bell. His best-known book, “The Fault in Our Stars,” sold millions of copies and became a movie.

But before he was such a big deal as a writer, he and his brother Hank were a big deal on YouTube. And they still are. We’ll get into the details a little bit later.

But for now the thing to know is: Pretty recently, John Green got on the main YouTube channel he and his brother share, and started talking to hundreds of thousands of people about how the drug-maker Johnson & Johnson was using legalistic drug patent games to deny access to life saving tuberculosis medicine to millions of people in poor countries. And John Green wanted anybody listening to stand up and do something about it.

John Green: Tell your friends about this injustice, tell your family, tell the internet, because the only reason Johnson Johnson executives think they can get away with this is that they think we aren’t paying attention in the part of the world where they sell most of their products, their Band Aids, their Tylenol, their Listerine.

Dan: And a lot of the people who watch John Green’s videos– the community calls themselves “nerdfighters” — made a fair amount of noise.

And a few days later, Johnson & Johnson seemed to blink. The company issued a statement saying it would allow a cheaper generic version of that TB drug to be more widely distributed. Here’s John’s brother Hank from their next YouTube video.

Hank Green: And this happened in a week, John, you made a video on Tuesday, “it’s Friday right now! I’m really proud to be a part of this community I’m really proud to be your brother…”

Dan: I mean, that’s a super-fun story that we’re gonna get into: How a self-proclaimed nerd raised an internet posse to influence a global pharma giant to do something pretty decent-sounding.

We are definitely going to tell that story.

… But that story is just a first impression, because the whole thing is bigger and way more complicated.

As John Green would tell you –as he told me – he was adding his bit to a global movement — to advocates and lawyers in places like India, for instance, that have been doing the heavy, heavy lifting, for years.

And, of course, to understand any of this, we are going to have to get into how pharma companies use drug patents. And what it means.

And that is part of where this story comes home.

As John Green mentioned in his video, the story of this tuberculosis drug wouldn’t normally draw a lot of attention in the U.S. TB isn’t one of our top health issues.

But … the mechanisms at play with this tuberculosis drug – the patent games – are some of the same mechanisms that make so many drugs here so expensive: Drugs like Humira, and insulin, and pretty much everything else.

And here’s what’s actually the most interesting part:

Behind the first impression version of this story – nerds in the U.S. and their online posse for people in what’s called the Global South –

There’s a story about people and ideas from the Global South coming here to save the U.S. from our own messed-up drug patent system.

Because they’ve figured out that unless we save ourselves, they’re screwed too. That’s a LOT! And it’s gonna take us two episodes to connect all the dots. 

You ready? Here we go…

This is An Arm and a Leg. A show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life, and to bring you something entertaining, empowering, and useful.

And so, let’s start with John Green — YouTuber.

John and his brother Hank were among the people who invented the idea of being a professional quote-unquote “creator” on the internet – maybe kind of by accident, at first. But they were hugely successful at it.

In 2007, they started posting video messages to each other on this still-kinda-new website called YouTube. They thought a few hundred people might be interested, if they kept it up for a year.

Then Hank posted a song about waiting for the last Harry Potter book to come out.

Hank Green: [Singing] … I’m getting kind of petrified. What would Ron do if Hermione died or if Voldemort killed Hedwig, Just for yucks? …

Dan: It got a million views– which, early YouTube? That was huge. And they were off. Today, that original YouTube channel has more than three and a half million subscribers. Hank now manages more than a hundred full-time employees and a whole bunch of contractors.

And, you know, it’s impossible to sum up the thousands of videos they’ve shared.

Hank Green: Good morning, John. Today we’re gonna be making cinnamon toast two different ways.

John Green: Good morning, Hank, it’s Tuesday. So I need your help with the thing I’m working on. I need to learn some jokes, but not just any jokes.

Dan: But it’s fair to say digressive, ranty arguments are kind of a staple.

John Green: Good morning Hank, it’s Tuesday. I kind of hate Batman.

Hank Green: Good morning, John, you pretty much got Batman entirely wrong.

John Green: Batman is just a rich guy with an affinity for bats who’s playing out his insane fantasy of single-handedly ridding Gotham of crime. How is that heroic?

Hank Green: Of course, I know that Your video on Tuesday wasn’t really about Batman, it was just using Batman as a tool to say something.

Dan: The arguing may have something to do with why they call their community nerd-fighters.

But the idea is more that this is a community of nerds fighting for something. As they put it: fighting to ‘reduce the amount of suck in the world.’

Partly by producing things that can be amusing and sweet and thoughtful – but also by giving money to worthy causes and encouraging others to do the same.

Every year, since the beginning, they have hosted a kind of online telethon called the Project for Awesome.

John Green: Good morning, Hank. It’s Thursday, December 17th, 2009. Time for the Project for Awesome! Hooray! Oh! [crashing sound] Ow! Whoa! I got too excited about the awesome.

Dan: It is SUPER-interactive: People upload videos pitching their favorite charities, they vote, they give. They’ve raised more than 30 million dollars. And a lot of it has gone to an organization called Partners in Health, which provides incredibly effective health services in places like Haiti and Sierra Leone.

And just to indulge my own tendency to nerdy digression here: A book about Partners in Health and its founder, Paul Farmer, is one of my favorite books of all time.

It’s called Mountains Beyond Mountains, and when we finally do start a book club – and I haven’t forgotten making that suggestion here – I want to nominate it as one of our first picks.

Anyway, the Green brothers are huge supporters of Partners in Health. And then, three years ago, John started one of his weekly videos this way.

John Green: Good morning, Hank, it’s Tuesday. So over the next five years, our families are donating six and a half million dollars to Partners in Health Sierra Leone. Also we need your help…

Dan: And here’s where we get to tuberculosis. In the run up to that commitment, John Green visited Sierra Leone with his wife Sarah, and met some of the folks there from Partners in Health.

Here’s how he told the story to me. I’m not gonna interrupt:

John Green: On the last day, two of the physicians from Partners in Health, who we were visiting with said, “Hey, if it’s not a big deal to you, we’d really like to stop by this TB hospital on the way back to the capitol because we have a case we’re really concerned about.” And I said, “Yeah, of course, I’m not going to get in the way of actual doctoring.” So … But I, you know, I didn’t think much of it at the time.

So we get to this TB hospital. And immediately upon arriving, the doctors go off to do doctor stuff. And Sarah and I are just sort of sitting there in this little nine year old boy who tells me his name is Henry, which is my son’s name, at the time, my son was nine, kind of grabs me by the shirt and starts walking me around. And he takes me to the lab, shows me how to look into the microscope to see if a specimen has tuberculosis, introduces me to the lab technician, he takes me to the patient wards, he takes me to the kitchen where they make the food, he takes me all over the hospital, and then eventually I end up in the room with where the doctors are, and, uh, and the, and the kid has departed and I said, you know, “I just spent 30 minutes with an extraordinary child named Henry and he gave me a tour of the whole facility and I have no idea who he is. Is he somebody’s kid? Is he a doctor’s kid?” And one of the doctors said, “you know, that’s what I thought when I first got here, uh, about Henry because he does seem like that. And actually he’s the case that we’re so concerned about that we, um, needed to come here.” And he wasn’t nine. He was 16. He was just really stunted and emaciated by tuberculosis. 

And, um, even though he was feeling pretty good at the time, the doctors knew that his treatment for multidrug resistant TB was failing, and that he needed access to a new cocktail that included bedaquiline, this drug that’s been around in the U.S. since 2013, but was, was at the time totally unavailable in Sierra Leone. And so, that was my introduction to TB and we were on our way to the airport and I said, “what’s gonna, what’s gonna happen to that kid?” And they were like, “it’s going to be a difficult path for him um, if we can’t get, if we can’t get the new treatment cocktail to him, he has a very low chance of survival.”

So that’s the beginning of the story for me, is meeting Henry.

Dan: I’m going to skip to the end of this part of the story: Henry’s OK. He’s alive, because he did get the drug cocktail that included Bedaquiline.

But, after that visit, John Green did not know that, and he started obsessing a bit about tuberculosis. Reading about it, thinking about it. And over the last year or so, he started occasionally sharing, making videos about TB. Some of them were fun, short, nerdy explainers.

John Green: What if I told you that tuberculosis gave us the cowboy hat? 

John Green: How did TB reinvigorate women’s shoe fashions?

John Green: How did tuberculosis help New Mexico become a state? I’m so glad you asked.

Dan: But he also dug into the deeper reason he’d become obsessed with TB. Because it’s a surprisingly big deal, still.

John Green: It’s almost certain that in the last 2, 000 years, more people died just from tuberculosis than died from all wars combined.

And before you think like, oh, but that’s ancient history. No, more people died last year from tuberculosis than died in war, and every year going back to World War II

Dan: We fact checked that. He’s actually understating things. By a lot.

TB is a growing problem. In the middle of the 20th Century, new medicines took TB off the list of diseases that most people in the rich parts of the world had to worry about. But it never got wiped out.

And in less-rich parts of the world, where access to the best treatments was spottier, drug-resistant strains of TB developed and developed. But no new drugs came out– no drugs for drug-resistant TB.

Until bedaquiline, produced by Johnson & Johnson. The drug that did eventually help save Henry, the kid that John Green met in Sierra Leone.

But bedaquiline is expensive. So people in less-rich parts of the world often can’t get it. One study estimated that eight out of nine people who needed treatment with a drug like bedaquiline weren’t getting it.

And of course medicines stay expensive when they’re under patent protection: Once the patent on a drug expires, anybody can make and sell a generic version of the drug. Which, you know, competition, usually allows prices to fall.

And in one way, as John Green started making tuberculosis videos in 2022, it might have seemed like there was hope coming up:

Bedaquiline was patented in 2003. Patents last twenty years. By 2023, that patent would expire.

Except, not really. Because it turns out, patents on drugs have ways of living for way more than twenty years.

That’s next.

MIDROLL: This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom that covers health care in America. KFF Health News are amazing journalists – their work wins all kinds of awards every year – and I’m honored to work with them. We’ll have a little more information about KFF at the end of this episode.

Dan: So, let’s talk about drug patents and how they work– and why they don’t just last 20 years. And this is something my colleague Emily Pisacreta has been interested in for a long time.

Emily: It’s true. As I’ve said before on the show, I’m an insulin-dependent diabetic. If I can’t get insulin, I’m literally dead. And, insulin is super expensive. And insulins have became so expensive in part because of the kinds of patents on them – even though those patents are way more than twenty years old! ..

Dan: Right, so you’ve got a big interest in this question: How can a patent last more than twenty years?

Emily: And Dan, my answer to that question is a riddle: When is a patent not a patent?

Dan: OK, I give up. When is a patent not a patent. 

Emily: When it’s 74 patents.

Dan: Yeah, this riddle is going to need some explaining.

Emily: Right. So, for a while I used an insulin called Lantus.It’s a once-a-day, long acting insulin made by the French company Sanofi. Sanofi first patented Lantus in 1994. So, that should mean it’s out of patent protection by 2014, right?

Dan: Uh-huh

Emily: Except, according to a report from a few years back, Sanofi actually filed for 74 patents on Lantus. And a lot of those patents were filed WAY after 1994. So, ONE patent from 1994 would’ve lasted till 2014. 74 patents could’ve lasted until 2031.

Dan: Ah, hence the very-specific answer for your riddle. I mean, I knew the principle – these insulin products have multiple patents on them, but 74 is … more than I’d imagined. What are 74 things you even COULD patent?

Emily: I mean, for Lantus, there are patents on formulations to improve stability. Like, all right … But there are also patents on the pen cartridge that Lantus comes in. And inside of that, a whole bunch of patents on the drive mechanisms, like the little plastic piston that lets you pick the right dose. These kinds of things.

Dan: OK. Now, I notice you said, those 74 patents COULD’ve lasted until 2031?

Emily: That’s right. As it turns out, in the case of Lantus, another drug maker actually did fight some of Sanofi’s later patents and won. But more often – and I mean a lot more often — simply filing for a patent is enough to keep generic makers away.

Dan: Sure. Who wants to spend money fighting a patent lawsuit when you could just y’know, manufacture some other drug?

Emily: Right. And of course this is not just insulin.

Tahir Amin: Oh, this is the standard practice. This happens with every drug.

Emily: That’s Tahir Amin – one of the big global experts on drug patents. Tahir the CEO and cofounder of a non-profit called I-MAK, which stands for …

Tahir Amin: The Initiative for Medicines Access and Knowledge. We work on building a more just and equitable access to medicine system.

Emily: The report that documented 74 patents on Lantus, that one insulinI used to use? Tahir’s group wrote it. And Tahir says this is business as usual, because it means big money.

Tahir Amin: Particularly when you’re talking about some of the drugs that you see in the US market, like for rheumatoid arthritis, these are worth billions of dollars.

Emily: Tahir’s group did a study on the 12 best-selling drugs in the U.S. They had an average of 131 patents each. If all the patents stick, that’s an average of 38 years of patent protection.

Dan: So maybe we can update your riddle: 

When is a patent not a patent? 

When it’s 131 patents.

Emily: Yeah, activists and experts call this kind of thing “patent thicketing” or “evergreening.”

Dan: I’ve been reading up on this too. Drug companies have their own name for this practice. They call it  “life-cycle management.”

Emily: What a term of art. And actually bedaquiline, the TB drug,is a great example. In 2014, Tahir did what they call a “patent landscape” on bedaquiline, mapping all the different patents J&J filed around the world.

Tahir Amin: We all knew that with the advent of multiple drug resistance TB, we needed to know how we’re gonna get these drugs to the communities and the countries that need them most.

Emily: He identified a long list of patents J&J filed. And the most important being the original formula for the drug, set to expire in 2023, and the second most important patent was on something called the salt formulation for the drug.

Dan: Salt formulation.

Emily: Yep, and it’s kind of worth getting into the weeds here just for a second. Because this sort of thing is at the absolute heart of these drug patent games. When you develop a drug, the first step is finding a molecule that works in a test tube, that does the thing you want, like kills the germ. That gonna be the first patent, that molecule. But the molecule isn’t medicine.

Tahir Amin: You have to develop it, formulate it so that it’s actually more bioavailable, that it can get into the bloodstream and, and do whatever biological activity that it does. And this is classic organic chemistry stuff that is routine.

Emily: It’s routine. SO what he’s saying here, and other experts agree, by the way, identifying a salt formulation that can work as medicine isn’t where the innovation is. And most importantly, it doesn’t have to take a long time. But J&J didn’t apply for their secondary patent on it until a full four years after their initial patent.

Dan: I’ve started reading about “lifecycle management,” you know, what the pharma industry calls all this. And this is literally the playbook. One lawyer has advice about when to file this kind of secondary patent, here’s what he says, quote:

“You want to do this as late as possible, but before clinical trials. If Company X can hold off filing for two or three years during the drug discovery phase, it will buy more time on the back end of the patent’s term.”

Emily: Yep, and J & J waited four years. A little extra.

Dan: And we asked Johnson & Johnson: Hey, did you put off filing this secondary patent on the salt formulation to stretch out your patent rights? We haven’t heard back.

So: TB advocates kind of had their eye on July 2023. Because in July 2023 the original patent that Johnson & Johnson had on bedaquiline was set to expire. And the secondary patent, this sort of basic add on, was to become the next big obstacle.

So, back to John Green. He’s learning all this stuff about TB – including about how the secondary patent on bedaquiline is gonna keep clamping down access.

And he’s making all these TB videos, but it’s not like he has some kind of big plan:

John Green: But the, for me, You know, this is all I was thinking about. It was the first thing I thought about in the morning and the last thing I thought about before I went to sleep, is how did we end up in a world where the world’s deadliest infectious disease is largely ignored in the richest parts of the world?

Dan: And he was getting kind of discouraged.

John Green: I felt powerless before it. And this is one of the real lessons for me is that I felt like, well, what … what are we going to do? It’s not like Johnson & Johnson is going to abandon the idea of secondary patents, right?

Dan: He knew: secondary patents can be worth billions of dollars.

John Green: And so they’re not going to abandon these attempts to make their patents last longer than they should because they’re a for profit company. And I felt really … Yeah, I just felt powerless.

Dan: And then, earlier this year, something changed. It was not something that John Green, or an army of nerds could have done, or could’ve done anything about.

It was done by India’s patent office – responding to a legal challenge brought by two young women who had survived tuberculosis – one from India and one from South Africa.

It was based on legal work that our new pal Tahir Amin and others did in India almost twenty years ago.

And gave John Green an idea of how an army of nerdfighters could join this battle.

That’s next time, on An Arm and a Leg. Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, and Emily Pisacreta – with help from Bella Cjazkowski, and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. 

Sarah Ballema is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News–formerly known as Kaiser Health News. That’s a national newsroom producing in-depth journalism about health care in America, and a core program at KFF — an independent source of health policy research, polling, and journalism.

And yes, you did hear the name Kaiser in there, and no: KFF isn’t affiliated with the health care giant Kaiser Permanente. You can learn more about KFF Health News at armandalegshow.com/KFF.

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

Thanks to Public Narrative — that’s a Chicago-based group that helps journalists and nonprofits tell better stories — for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about Public Narrative at www.publicnarrative.org.

And thanks to everybody who supports this show financially.

If you haven’t yet, we’d love for you to join us. The place for that is armandalegshow.com/support. That’s armandalegshow.com/support. 

It helps us out a lot, so thanks for pitching in if you can! And thanks for listening!

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

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KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The Host

Julie Rovner
KFF Health News

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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

This week, while KFF Health News’ “What the Health?” takes a break, here’s an encore of a favorite episode this year: Host and chief Washington correspondent Julie Rovner leads a rare conversation with the current and two former secretaries of Health and Human Services. Taped in June before a live audience at Aspen Ideas: Health, part of the Aspen Ideas Festival, in Aspen, Colorado, Secretary Xavier Becerra and two of his predecessors, Kathleen Sebelius and Alex Azar, talk candidly about what it takes to run a department with more than 80,000 employees and a budget larger than those of many countries.

Among the takeaways from this week’s episode, originally aired in June:

• The Department of Health and Human Services is much more than a domestic agency. It also plays a key role in national security, the three HHS secretaries explained, describing the importance of the “soft diplomacy” of building and supporting health systems abroad.
• Each HHS secretary — Sebelius, who served under former President Barack Obama; Azar, who served under former President Donald Trump; and Becerra, the current secretary, under President Joe Biden — offered frank, sobering, and even funny stories about interacting with the White House. “Anything you thought you were going to do during the day often got blown up by the White House,” Sebelius said. Asked what he was unprepared for when he started the job, Azar quipped: “The Trump administration.”
• Identifying their proudest accomplishments as the nation’s top health official, Azar and Becerra both cited their work responding to the covid-19 pandemic, specifically Operation Warp Speed, the interagency effort to develop and disseminate vaccines, and H-CORE, which Becerra described as a quiet successor to Warp Speed. They also each touted their respective administrations’ efforts to regulate tobacco.
• Having weathered recent debates over the separation of public policy and politics at the top health agency, the panel discussed how they’ve approached balancing the two in decision-making. For Becerra, the answer was unequivocal: “We use the facts and the science. We don’t do politics.”

Click to open the transcript

Transcript: An Encore: 3 HHS Secretaries on What the Job Is Really Like

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

Julie Rovner: Hello “What the Health?” listeners. We’re taking this week off from the news while KFF holds an all-staff retreat. We’ll be back next week, but in the meantime, here’s an encore of one of our favorite episodes of the year — a chat with three Health and Human Services Secretaries. We’ll be back next week with our regular news roundup.

Hello and welcome back to “What the Health?” I’m Julie Rovner, coming to you this week from the Aspen Ideas: Health conference in Aspen, Colorado. We have a cool special for you this week. For the first time, the current secretary of Health and Human Services sat down for a joint interview with two of his predecessors. This was taped before a live audience on Wednesday evening, June 21, in Aspen. So, as we like to say, here we go.

Hello. Good evening. Welcome to Aspen Ideas: Health. I’m Julie Rovner. I’m the chief Washington correspondent for KFF Health News and also host of KFF Health News’ health policy podcast, “What the Health?,” which you are now all the audience for, so thank you very much. I’m sure these people with me need no introduction, but I’m going to introduce them anyway because I think that’s required.

Immediately to my left, we are honored to welcome the current U.S. secretary of Health and Human Services, Xavier Becerra. Secretary Becerra is the first Latino to serve in this post. He was previously attorney general of the state of California. And before that, he served in the U.S. House of Representatives for nearly 25 years, where, as a member of the powerful Ways and Means Committee, he helped draft and pass what’s now the Affordable Care Act. Thank you for joining us.

Next to him, we have Kathleen Sebelius, who served as secretary during the Obama administration from 2009 to 2014, where she also helped pass and implement the Affordable Care Act. I first met Secretary Sebelius when she was Kansas’ state insurance commissioner, a post she was elected to twice. She went on to be elected twice as governor of the state, which is no small feat in a very red state for a Democrat. Today, she also consults on health policy and serves on several boards, including — full disclosure — that of my organization, KFF. Thank you so much for being here.

And on the end we have Alex Azar, who served as HHS secretary from 2018 to 2021 and had the decidedly mixed privilege of leading the department through the first two years of the covid pandemic, which I’m sure was not on his to-do list when he took the job. At least Secretary Azar came to the job with plenty of relevant experience. He’d served in the department previously as HHS deputy secretary and as general counsel during the George W. Bush administration and later as a top executive at U.S. drugmaker Eli Lilly. Today, he advises a health investment firm, teaches at the University of Miami Herbert Business School, and sits on several boards, including the Aspen Institute’s. So, thank you.

Former Secretary of Health and Human Services Alex Azar: Thank you.

Rovner: So I know you’re not here to listen to me, so we’re going to jump in with our first question. As I’m sure we will talk about in more detail, HHS is a vast agency that includes, just on the health side, agencies including the Food and Drug Administration, the National Institutes of Health, the Centers for Disease Control and Prevention, and the Centers for Medicare & Medicaid Services. The department has more than 80,000 employees around the country and throughout the world and oversees more than one and a half trillion dollars of federal funding each year. I want to ask each of you — I guess we’ll start with you — what is the one thing you wish the public understood about the department that you think they don’t really now?

Secretary of Health and Human Services Xavier Becerra: Given everything you just said, I wish people would understand that the Constitution left health care to the states. And so, as big as we are and as much as we do — Medicare, Medicaid, CHIP [Children’s Health Insurance Program], Obamacare — we still don’t control or drive health care. The only way we get in the game is when we put money into it. And that’s why people do Medicare, because we put money into it. States do Medicaid because we put money into it. And it became very obvious with covid that the federal government doesn’t manage health care. We don’t have a national system of health or public health. We have a nationwide system of public health where 50 different states determine what happens, and so one state may do better than another, and we’re out there trying to make it work evenhandedly for everyone in America. But it’s very tough because we don’t have a national system of public health.

Rovner: Secretary, what’s the thing that you wish people understood about HHS?

Former Secretary of Health and Human Services Kathleen Sebelius: Well, I agree with what Secretary Becerra has said, but it always made me unhappy that people don’t understand fully, I don’t think, the international role that HHS plays, and it is so essential to the safety and security and resilience of the United States. So we have employees across the world. CDC has employees in about 40 other countries, and helping to build health systems in various parts of the world, sharing information about how you stand up a health system, what a great hospital looks like. NIH does experiments and clinical trials all over the globe and is regarded as the gold standard. And we actually, I think, at HHS were able to do what they call soft diplomacy. And a lot of countries aren’t eager to have the State Department involved. They’re certainly not eager to see soldiers. Our trade policies make some people uncomfortable. But they welcome health professionals. They welcome the opportunity to learn from the United States. So it’s really a way often to get into countries and make friendships. And we need to monitor across the globe, as covid showed so well. When an outbreak happens someplace else in the world, we can’t wait for it to arrive on the border of the United States. Safety and security of American citizens really depends on global information exchange, a global surveillance exchange. The CDC has also trained epidemiologists in regions around the world so that they can be faster and share information. And I think too often in Congress, those line items for foreign trips, for offices elsewhere, people say, “Well, we don’t really need that. We should focus all our attention on America.” But I’ve always thought, if folks really understood how integral it is not just to our health security, but really national security, that we have these partnerships — and it’s, as I say, I think the best soft diplomacy and the cheapest soft diplomacy underway is to send health professionals all over the globe and to make those friendships.

Rovner: Do you think people understand that better since covid?

Sebelius: Maybe. You know, but some people reacted, unfortunately, to covid, saying, “Well, we put up bigger walls, and we” — I mean, no disease needs a passport, no wall stops things from coming across our borders. And I’m not sure that still is something that people take to heart.

Rovner: Secretary Azar, you actually have the most — in terms of years — experience at the department. What is it that people don’t know that they should?

Azar: So I probably would have led with what Secretary Becerra said about just how highly decentralized the public health infrastructure and leadership and decision-making is in the United States. I mean, it really — all those calls are made, and it’s not even just the 50 states. It’s actually 62 public health jurisdictions, because we separately fund a whole series of cities. I’ll concur in that. I’d say the other thing that people probably don’t understand, and maybe this is too inside baseball, is the secretary of HHS is, on the one hand, probably the most powerful secretary in the Cabinet and, on the other hand, also quite weak. So literally every authority, almost every authority, in the thousands and thousands of pages of U.S. statute that empower programs at HHS, say, “The secretary shall …” So the FDA, the CDC, CMS, all of these programs really operate purely by delegation of the secretary, because Secretary Becerra allows them to make decisions or to run programs. They are his authorities. And so the media, then, when the secretary acts, will … [unintelligible] … “How dare you,” you know, “how dare you be involved in this issue or that issue?” Well, it is legally and constitutionally Secretary Becerra’s job. And, on the other hand, you are supervising — it’s like a university, because you’re also supervising operating divisions that are global household brands. It is really like being a university president, for all that’s good and evil of that. You have to lead by consensus. You have to lead by bringing people along. You are not a dictator, in spite of what the U.S. statutes say. It’s very, very similar to that — that you, the secretary, is both powerful, but also has to really lead a highly matrixed, consensus-based organization to get things done.

Rovner: You’re actually leading perfectly into my next question, which is, how do you juggle all the moving pieces of this department? Just putting the agency heads in one room could fill a room this size. So tell us what sort of an average day for each of you would look like as secretary, if there’s such a thing as an average day.

Azar: Well, first, not an average administration, so take with a grain of salt my average day. So, interspersed among the two to five phone calls with the president of the United States between 7 a.m. and midnight, you know, other than that, um — I started every day meeting with my — you know, as secretary, you’ve got to have a team around you that’s not just your operating divisions, but I would start every morning — we would have just a huddle with chief of staff, deputy chief of staff, my head of public affairs. Often my general counsel would join that, my legislative leader. Just what’s going to hit us in the face today? Like, what are we trying to do, and what’s going to hit us in the face today? Just a situational awareness, every morning at about 8 a.m., quick huddle on that, and then diving into really the rhythm of the day of — I tried to drive — I use a book that I helped actually do some of the work on called “The 4 Disciplines of Execution,” just a tool of how do you focus and drive change in very complex organizations? So I tried to focus on four key initiatives that I spent as much of my time as secretary on leading and pushing on, and so I tried to make sure as much of my time was doing that. But then it’s reactive. You’re having to go to White House meetings constantly. You have to sign off on every regulation at the department. And so you’re in meetings just getting briefed and deciding approve or disapprove, so that rhythm constantly, and then add travel in, add evening commitments, add speeches. I’d say the biggest challenge you have as a leader in HHS is that first point of, focus, because you could be like a bobber on the water, just going with whatever’s happening, if you don’t have a maniacally focused agenda of, “I’ve got a limited amount of time. I’m going to drive change here. And if I don’t spend time every day pushing the department on this issue, being basically a burr in the saddle to make it happen, it won’t.” And you’ve just got to constantly be on that.

Rovner: Secretary Sebelius, what did your average day look like?

Sebelius: Well, I’m not going to repeat what Alex has just said. A lot of that goes on in the daily routine. First of all, I think all of us would be sent home the night before with a binder of materials — briefings for what you’re going to do the next day. So you may have 10 meetings, but each of those has a 20-page brief behind it. And then what the issues are, what the questions might be. So that’s your homework often that you’re leaving with at 7 or 8 at night. I like to run in the morning, and I would get up, read my schedule, and then go out and run on the [National] Mall because it sort of cleared my head. I’m proud of having — some of the folks may still be here — none of the detail ran before I started running, and my deal with them was, “I’m much older than you are, you know. We’re all going to run.”

Azar: They still —

Sebelius: Oh, here we go.

Azar: They still talk about it.

Sebelius: Well, one of them got to be a great marathon runner, you know. Can’t hurt. One guy started riding a bike, and I was like, “What are you doing?” I mean, if I fall, what are you going to do with the bike? I mean, am I going to carry it, are you going to carry it? I mean, who — anyway, so I started that way. You’d go then into the office. And one of the things that was not mentioned is HHS has an amazing, camera-ready studio, TV studio, that lots of other Cabinet agencies used. It has a setting that looks like “The View.” It has a stool that you can look in cameras, but two or three days a week we would do what they call “Around the Country.” So you would sit in a stool, and I’d be doing updates on the ACA or a pitch to enrollment or something about a disease, and you would literally have a cue card up that would say “Minneapolis, Andrea.” And I would say, “Good morning, Andrea.” And we would do a two-second spot in Minneapolis and they’d have numbers for me and then the camera would switch and it would be Bob in St. Louis. “Hello, Bob. How are you?” So that was a morning start that’s a little bit different. Anything you thought you were going to do during the day often got blown up by the White House: somebody calling, saying, you know, “The president wants this meeting,” “the vice president’s calling this.” So then the day gets kind of rearranged. And I think the description of who the key staff are around, but 12 operating agencies — any one of them could be a much more than full-time job. So just getting to know the NIH or, you know, seeing what CDC in Atlanta does every day, but trying to keep the leadership in touch, in tune, and make sure that — one of the things that, having been a governor and working with Cabinet agencies, that I thought was really important, is everybody has some input on everything. These are the stars, the agency heads. They know much more about health and their agencies than I would ever know. But making sure that I have their input and their lens on every decision that was made. So we had regular meetings where the flatter the organization, the better, as far as I’m concerned. They were all there and they gave input into policy decisions. But it is not a boring job and it’s never done. You just had to say at the end of the day, with this giant book, “OK, that’s enough for today. I’ll start again tomorrow, and there’ll be another giant book and here we go.”

Rovner: And your day, since you’re doing it now?

Becerra: I don’t know if it’s the pleasure or the bane of starting off virtually. Almost everything we did was via Zoom. I didn’t meet many of my team until months into the term because we were in the midst of covid. So we would start the days usually pretty early in the morning with Zooms and it would go one Zoom after the other. Of course, once we started doing more in-person activities, schedulers still thought they could schedule you pretty much one right after the other, and so they pack in as much as they can. I think all of us would say we’re just blessed to have some of the most talented people. I see Commissioner Califf from the FDA over there in the room. I will tell you, it’s just a yes … [applause] … . It’s a blessing to get to serve with these folks. They are the best in their fields. And you’re talking about some pretty critical agencies, FDA, NIH, CDC, CMS. I mean, the breadth, the jurisdiction, of CMS is immense. They do fabulous work. They are so committed. And so it makes it a lot easier. And then, of course, we all — we each have had — I have my group of counselors who are essentially my captains of the different agencies, and they help manage, because without that it would be near-impossible. And these are people who are younger, but my God, they’re the folks that every CEO looks for to sort of help manage an agency, and they’re so committed to the task. And so I feel like a kid in a candy store because I’m doing some of the things that I worked on so long when I was a member of Congress and could never get over the finish line. Now I get to sort of nudge everything over the finish line, and it really is helpful, as Alex said, to remind people that the statute does say, “The secretary shall … ,” not someone else, “the secretary shall … .” And so, at the end of the day, you get to sort of weigh it. And so it’s a pleasure to work with very talented, committed people.

Sebelius: Julie, I want to throw in one more thing, because I think this is back to what people don’t know, but it’s also about our days. There’s an assumption, when administrations change, the whole agency changes, right? Washington all changes. In a department like HHS, 90,000 employees scattered in the country and around the world, there are about 900 total political appointees, and they are split among all the agencies and the secretary’s office there. So you’re really talking about this incredibly talented team of professionals who are running those agencies and have all the health expertise, with the few people across the top that may try to change directions and put — but I think there’s an assumption that sort of the whole group sweeps out and somebody else sweeps in, and that really is not the case.

Rovner: So, as I mentioned, all three of you had relevant government experience before you came to HHS. Secretary Sebelius, you were a governor, so you knew about running a large organization. I want to ask all three of you, did you really understand what you were getting into when you became secretary? And is there some way to grow up to become HHS secretary?

Azar: I mean, yeah, I — yeah, I have no excuse. My first day, right after getting sworn in — the secretary has a private elevator that goes directly up to the sixth floor where the suite is, the deputy secretary’s office to the right, secretary to the left — my first day, I’m up, headed up with my security detail, and I get off and I walk off to the right. “Mr. Secretary, no, no, no. It’s this way.” Literally, it was like — it had been 11 years, but it was like coming home to me. I was literally about to walk into my old office as deputy secretary, and they show me to the secretary’s office. And I think for the first three months, I kept thinking Tommy Thompson or Mike Leavitt was going to walk in and say, “Get the hell out of my office.” And no, so it, and it was the same people, as Secretary Sebelius said. I knew all the top career people. I’d worked with them over the course of — in and out of government — 20 years. So it was very much a “coming home” for me. And it was many of the same issues were still the same issues. Sustainable growth rate — I mean, whatever else, it was all the same things going on again, except the ACA was new. That was a new nice one you gave me to deal with also. So, yeah, thank you.

Sebelius: You’re welcome. We had to have something new.

Rovner: What were you unprepared for when you took on this job?

Azar: Well, for me, the Trump administration.

Rovner: Yeah, that’s fair.

Azar: I, you know, had come out of the Bush administration. You’re at Eli Lilly. I mean, you know, you’re used to certain processes and ways people interact. And, you know, it’s just — it was different.

Sebelius: I had a pretty different experience. The rhythm of being a governor and being a Cabinet secretary is pretty similar. Cabinet agencies, working with the legislative process, the budget. So I kind of had that sense. I had no [Capitol] Hill experience. I had not worked on the Hill or served on the Hill, so that was a whole new entity. You’re not by protocol even allowed in the department until you’re confirmed. So I had never even seen the inside of the office. I mean, Alex talked about being confused about which way to turn. I mean, I had no idea [about] anything on the sixth floor. I hadn’t ever been there. My way of entering the department — I was President [Barack] Obama’s second choice. [Former South Dakota Democratic Senator] Tom Daschle had been nominated to be HHS secretary. And that was fine with me. And I said, “I’m a governor. I’ve got two more years in my term. I’ll join you sometime.” And then when Sen. Daschle withdrew, the president came back to me and said, “OK, how about, would you take this job if you’re able to get it?” And I said, “Yes, that’s an agency that’s interesting and challenging.” So I still was a governor, so I was serving as governor, flying in and out of D.C. to get briefings so I could go through hearings on this department that I didn’t know a lot about and had never really worked with, and then would go back and do my day job in Kansas. And the day that the Senate confirmation hearing began, a call came to our office from the White House. And this staffer said, “This governor? “Yes.” “President Obama has a plane in the air. It’s going to land at Forbes Air Force Base at noon. We want you on the plane.” And I said, you know, “That’s really interesting, but I don’t have a job yet. And I actually have a job here in Kansas. And here’s my plan. You know, my plan is I’m going to wait until I get confirmed and then I’ll resign and then I’ll get on the plane and then I’ll come to D.C.” And they said, “The president has a plane in the air, and it will land. He wants you on the plane.” First boss I’d had in 20 years. And I thought, “Oh, oh, OK. That’s a new thing.” So I literally left. Secretary Azar has heard this story earlier, but I left an index card on my desk in Kansas that said, “In the event I am confirmed, I hereby resign as governor.” And it was notarized and left there because I thought, I’m not giving up this job, not knowing if I will have another job. But halfway across the country I was confirmed and they came back and said — so I land and I said, “Where am I going?” I, literally, where — I mean, I’m all by myself, you know, it’s like, where am I going? “You’re going to the White House. The president’s going to swear you in.” “Great.” Except he couldn’t swear me in. He didn’t have the statutory authority, it turns out, so he could hold the Bible and the Cabinet secretary could swear me in. And then I was taken to the Situation Room, with somebody leading the way because I’d never been to the Situation Room. And the head of the World Health Organization was on the phone, the health minister from Canada, the health minister from Mexico, luckily my friend Janet Napolitano, who was Department of Homeland Security secretary — because we were in the middle of the H1N1 outbreak, swine flu, nobody knew what was going on. It was, you know, an initial pandemic. And everybody met and talked for a couple of hours. And then they all got up and left the room and I thought, woo-hoo, I’m the Cabinet secretary, you know, and they left? And somebody said to me later, well, “Does the White House find you a place to live?” I said, “Absolutely not. Nobody even asked if I had a place to stay.” I mean, it was 11 o’clock at night. They were all like, “Good night,” “goodbye,” “see ya.” So I luckily had friends in D.C. who I called and said, “Are you up? Can I come over? I’d like somebody to say, ‘Yay,’ you know, ‘we’re here.’” So that’s how I began.

Rovner: So you are kind of between these two. You have at least a little more idea of what it entailed. But what were you unprepared for in taking on this job?

Becerra: Probably the magnitude. Having served in Congress, I knew most of the agencies within HHS. I had worked very closely with most of the bigger agencies at HHS. As AG — Alex, I apologize — I sued HHS quite a —

Azar: He sued me a lot.

Becerra: Quite a few times.

Azar: Becerra v. Azar, all over the place.

Becerra: But the magnitude. I thought running the largest department of justice in the land other than the U.S. Department of Justice was a pretty big deal. But then you land and you have this agency that just stretches everywhere. And I agree with everything that Kathleen said earlier about the role that we play internationally. We are some of the best ambassadors for this country in the world because everyone wants you to help them save lives. And so it really helps. So the magnitude — it just struck me. When President Biden came in, we lost the equivalent of about — what, 13 9/11 twin tower deaths one day. Every day we were losing 11 twin tower deaths. And it hits you: You’ve got to come up with the answer yesterday. And so the White House is not a patient place, and they want answers quickly. And so you’re just, you’re on task. And it really is — it’s on you. You really — it smothers you, because you can’t let it go. And whether it was covid at the beginning or monkeypox last year, all of a sudden we see monkeypox, mpox, starting to pop up across the country. And it was, could this become the next covid? And so right away you’ve got to smother it. And the intensity is immediate. Probably the thing that I wasn’t prepared for as well, along with the magnitude, was, as I said, the breadth. Came in doing all these Zooms virtually to try to deal with the pandemic. But probably the thing that I had to really zero in on even more, that the president was expecting us to zero in on more, was migrant kids at the border and how you deal with not having a child sleep on a cement floor with an aluminum blanket and just trying to deal with that. It won’t overwhelm you necessarily, but — and again, thank God you’ve got just people who are so committed to this, because at any hour of the day and night, you’re working on these things — but the immensity of the task, because it’s real. And other departments also have very important responsibilities — clearly, Department of Defense, Department of State. But really it truly is life-and-death at HHS. So the gravity, it hits you, and it’s nonstop.

Rovner: All three of you were secretary at a time when health was actually at the top of the national agenda — which is not true. I’ve been covering HHS since 1986, and there have been plenty of secretaries who sort of were in the back of the administration, if you will, but you all really were front and center in all of these things. I want to go to sort of down the line. What was the hardest decision you had to make as secretary?

Becerra: Um …

Rovner: You’re not finished yet. I should say so far.

Becerra: I mean, there have been a lot of tough decisions, but, you know, when your team essentially prepares them up and you have all this discussion, but by the time it gets to me, it really has been baked really, really well. And now it’s sort of, White House is looking at this, we are seeing some of this, we’ve got to make a call. And again, Dr. Califf could speak to this as well. At the end of the day, the decisions aren’t so much difficult. It’s that they’re just very consequential. Do you prepare for a large surge in omicron and therefore spend a lot of money right now getting ready? Or do you sort of wait and see a little bit longer, preserve some of your money so you can use some of that money to do the longer-term work that needs to be done to prepare for the next generation of the viruses that are coming? Because once you spend the dollar, you don’t have it anymore. So you got to make that call. Those are the things that you’re constantly dealing with. But again, it just really helps to have a great team.

Sebelius: So I would say I was totally fortunate that the pandemic we dealt with was relatively short-lived and luckily far, far milder than what consumed both the secretaries to my left and right, and that was fortunate. A lot of our big decision areas were under the rubric of the Affordable Care Act and both trying to get it passed and threading that needle but then implementation. And I — you know, thinking about that question, Julie, I would say one of the toughest decisions — just because it provided a real clash between me and some of the people in the White House; luckily, at the end of the day, not the president, but — was really about the contraception coverage. Reproductive health had been something I’d worked on as a legislator, as governor. I felt very strongly about it. We’d fought a lot of battles in Kansas around it, and part of the Affordable Care Act was a preventive services benefit around contraceptive care. And that was going to be life-changing for a lot of women. And how broad it should be, how many battles we were willing to take on, how that could be implemented became a clash. And I think there were people in the administration who were hopeful that you could avoid clashes. So just make a compromise, you know, eliminate this group or that group, who may get unhappy about it. And at the end of the day, I was helped not just by people in the department, but mobilized some of my women Cabinet friends and senior White House women friends. And we sort of had a little bit of a facedown. And as I say, the president ended up saying, “OK, we’ll go big. We’ll go as big as we possibly can.” But I look back on that as a — I mean, it was a consequential decision, and it was implementation — not passing the rag in the first place, but implementing it. And it had a big impact. A big impact. It’s not one I regret, but it got a little a little tense inside, but what would be friendly meetings.

Azar: I’d use the divide Secretary Becerra talked about, which is that consequential versus hard decisions, that a lot — I think one could have a Hamlet-like character. I don’t. And so making the call when it comes to you wasn’t a terribly difficult thing, even. These are life-and-death decisions, but still yourself, you know your thought processes, you think it through, it’s been baked very well, you’ve heard all sides. You just have to make that call. So I’d maybe pivot to probably it’s more of a process thing. The hardest aspect for me was just deciding when do you fight and when do you not fight with, say, the White House? What hills do you die on? And where do you say, “Yeah, not what I would do, but I just have to live to fight another day.” Those were probably the toughest ones to really wrestle with.

Rovner: Was there one where you really were ready to die on the hill?

Azar: There were a lot. There were a lot. I mean, I’ll give you one example. I mean, I left a lot of blood on the field of battle just to try to outlaw pharmaceutical rebates, to try to push those through to the point of sale. I probably stayed to the end just to get that dag — because I, the opponents had left the administration and I finally got that daggone rule across the finish line right at the end. And that was something that I felt incredibly strongly that you could never actually change. I’ve lived inside that world. You could never change the dynamic of pharmaceutical drug pricing without passing through rebates to the point of sale. And I had so many opponents to get that done. It was a three-year constant daily battle that felt vindicated then to get it done. But that was a fight.

Rovner: And of course, I can’t help but notice that all of the things that you all are talking about are things that are still being debated today. None of them are completely resolved. Let’s turn this around a little bit. I wanted to ask you what you’re most proud of actually getting accomplished. Was it the rebate rule? That was a big deal.

Azar: For me, it has to be Operation Warp Speed. …[applause] … Yeah. Thank you. That was just — I mean, and I don’t want to take the credit. I mean, it was public-private. Mark Esper, this could not have happened without the partnership of the Defense Department, and it could not have happened without Mark Esper as secretary, because — I guarantee you, I’ve dealt with a lot of SecDefs in my career — and when the secretary of defense says to you, “Alex, you have the complete power and support of the Department of Defense. You just tell me what you need.” I haven’t heard those words before. And he was a partner and his whole team a partner throughout. And when you have the muscle of the U.S. military behind you to get something done, it is miraculous what happens. I mean, we were making hundreds of millions of doses of commercial-scale vaccine in June of 2020, when we were still in phase 2 clinical trials. We were just making it at risk. So we’re pumping this stuff out. And in one of the factories, a pump goes down. The pump is on the other side of the country on a train. The U.S. military shoots out a fighter jet, it gets out there, stops the train, pulls the train over, puts it on a helicopter, gets it on the jet, zips it off to the factory. We have colonels at every single manufacturing facility, and they get this installed. We’re up and running within 24 hours. It would have taken six to nine months under normal process. But the U.S. military got that done. So that for me was like just — the other two quick, one was banning flavored e-cigarettes. We got 25% reduction in youth use of tobacco in 12 months as a result of that. And then one of the great public health victories that this country had and the world had got ignored because it got concluded in June of 2020: We had the 11th Ebola outbreak. It was in the war zone in the eastern Democratic Republic of the Congo. This was the pandemic I was really, really worried about. One-hundred seventy-four warring groups in the war zone in the eastern Congo. Got [WHO Director-General] Tedros [Adhanom Ghebreyesus] and [then-Director of the National Institute of Allergy and Infectious Diseases Anthony] Fauci and [then-CDC Director Robert] Redfield, and we went over and we went on the ground and we got that. And by June of 2020, that one got out, which was a miracle of global public health. I’m with Kathleen on that one; I think global public health is a key instrument of American power projection humanity around the world. Sorry to go so long.

Rovner: It’s OK. Your turn.

Sebelius: I think proudest is the ability to participate in the Affordable Care Act and push that over the finish line. And for me, it was a really personal journey. My father was in Congress and was one of the votes for Medicare and Medicaid to be passed, so that chunk of the puzzle. I was the insurance commissioner in Kansas when the Republican governor asked me to do the implementation of the Children’s Health Insurance Program. So I helped with that piece. I was on President [Bill] Clinton’s patient protection commission and ended up with a lot of that package in the Affordable Care Act. And then finally to work for and support and watch a president who basically said when he announced for president, “This is my priority in my first term: I want to pass a major health care bill.” And a lot of people had made that pledge. But 15 months later, there was a bill on his desk and he signed it, and we got to implement it. So that was thrilling. Yeah. And, I should tell you, then-Congressman Becerra was one of the wingmen in the House who I worked with carefully, who — there was no better vote counter than Nancy Pelosi, but by her side was this guy, part of her delegation, named Xavier Becerra, who was whipping the votes into place. So he played a key role in making sure that crossed the finish line.

Becerra: So I’m still here, so you’re going to have to —

Rovner: You can change your answer later.

Becerra: I need a bit of grace here, because I’m going to start with Warp Speed, because I bet no one here knows there’s no longer a Operation Warp Speed. It’s now called H-CORE. And the reason I’m very proud of that is because you don’t know that it’s now H-CORE. And what makes it such a good thing is that the Department of Defense no longer has any role in the protection of the American people from covid. It’s all done in-house at HHS. Everything used to be done essentially under the auspices of the Department of Defense, because they are just the folks that can get things done in 24 hours. We do that now, and it’s the operations that were begun a while back. Kathleen had them, Alex had them. Our ASPR, that’s our Preparedness and Response team, they’re doing phenomenal work, but you don’t know it, and you don’t know that H-CORE took to flight in the first year of the Biden administration. By December of 2021, Department of Defense had transferred over all those responsibilities to us, and we’ve been doing it since. But if you ask me what am I most proud of, it’s, I mean, there are more Americans today than ever in the history of this country who have the ability to pay for their own health care because they have health insurance, more than 300 million. Part of that is Obamacare; a record number, 16 and a half million Americans, get their insurance through the marketplaces, and we haven’t stopped yet. There are close to 700 million shots of covid vaccine that have gone into the arms of Americans. That’s never been done in the history of this country. Some of you are probably familiar with three digits, 988, at a time when Americans are … [applause] … 9 in 10 Americans would tell you that America is experiencing a mental health crisis, especially with our youth. And Congress got wise and said, instead of having in different parts of the country, based on region, you could call a phone number for a suicide lifeline, if you didn’t know the 10-digit number or what part of the country you were in, you were out of luck — today, all you have to do is dial 988. But as I said before, federal government doesn’t run mental health. It’s all done by the states. But President Biden is very committed to mental health. His budgets have surpassed any type of investments that have been called for by any president in history for mental health. And he was very committed to 988 to make sure it launched right. And so we have, by exponential numbers, put money into 988 to make sure every state was ready to have it launch. And so by July of 2022, we launched 988, and it is working so well that people are actually calling — actually, not just calling. We now have a text feature and a chat feature because surprise, surprise, young people prefer not to call; they actually prefer to text. And we have increased the number of Americans who are reaching out by over 2 million, which is great, but it’s also not great because it shows you how much Americans are hurting. So there’s so many things I can tell you that I feel very good about that we’re doing. We’re not done. We’re moving beyond on tobacco where Alex left. We’re now moving to ban menthol in cigarettes. Menthol cigarettes are the most popular brand of cigarettes in America. They hook you because of the menthol, and we’re moving to extract menthol. We’re moving to ban flavored cigars and cigarillos. And we may be on course to try to see if we can move to extract as much nicotine out of tobacco as possible before it becomes a product on the market for folks to smoke. So we’re doing a whole lot of things there. And obviously on vaping, e-cigarettes as well — and Dr. Califf could mention that. But I’ll say the thing I’m probably most proud of is that, out of all the government agencies in America, federal government agencies, HHS ranks No. 2 as the best place to work. And I will tell you we’re No. 2, because if we had the capacity to tell our workforce, we will fly you to the moon and back the way NASA does, we’d be No. 1. So that’s what I think I’m most proud of, is that people, as hard as we work them, still say, “Come work at HHS.”

Rovner: So all of you have mentioned these things that were really hard to do because of politics. And you’ve all talked about how some of these decisions, when they get to you, have been baked by your staff and, you know, they vetted it with every side. But I think the public feels like politics determine everything. And I think you all would like to think that policy is what helps determine most things. So, what’s the balance? How much does politics determine what gets done, and how much is it just the idea that this would be the right policy for the American public?

Azar: Mike Leavitt, who was the secretary when I was deputy secretary, he had a phrase, and I’ll probably mangle it, but it was essentially, “Facts for science, and politics for policy.” And it’s important to remember this distinction. So, facts are facts. You gather data. We are especially a data-generating agency. But on top of that are policy overlays. And there are choices that are made about how do you use those facts? What do those facts mean? What are the implications? The United States Constitution vests under Article 2 in the president of the United States to make those choices and, as his delegee, the secretary and the other appointed leaders of the department. So there’s often this notion of politicizing science, but it’s, are there facts? Facts are facts. You generate facts. But what are the implications for policymaking? And I don’t think there’s anything illegitimate — I think is completely appropriate, whether a Democratic or Republican president — that you look and you consider all kinds of factors. Because for instance, for me, I’m going to look at things very much from a public health lens as I assess things. The secretary of the treasury, the secretary of commerce, may bring a completely and important different perspective to the table that I don’t bring. And it’s completely legitimate that that gets factored on top of whatever I or other agencies bring in as fact. So I think it takes some nuance and that we often, frankly, in public discourse don’t catch nuance. Interesting. We don’t do nuance well.

Rovner: We don’t do nuance.

Sebelius: Well, I would agree with the description of the facts versus the policy. And policy does often have political flavors. I was fortunate to work for a president who said, meant, and said it over and over and over again that he would follow the science. And he did. And I had interesting political debates with people around him, on his team, about what should be done, “rewrite the guidance on this,” “do that,” “this is going to upset this group of people.” And he was very resilient and very consistent, saying, “What does the science say? What do the scientists say? That’s where we’re going,” on those areas which were really defined as giving advice to the American public on health issues, doing a variety of things. I mean, he was totally focused on listening to the science. The politics came in, as I think Secretary Azar said well, in some decisions that were brought to him, which really involved often battles between Cabinet agencies, and both were very legitimate. Again, we had pretty ferocious battles on food labeling and calorie counts and how much sodium would, should manufacturers be allowed to put in all of our manufactured goods. I’m sure many of you are aware, but, you know, American sodium levels are just skyrocketing. And it doesn’t matter what kind of salt you use at your table; it’s already baked into every loaf of bread, every pat of butter, every can of soup. And a lot of European countries have done a great job just lowering that. So the goods that are manufactured that you pick up in an EU country — Kellogg’s Corn Flakes has a third of the sodium that the Kellogg’s Corn Flakes that you get in Aspen does, just because that was a choice that those governments made. That’s a way to keep people healthy. But we would come at that through a public health perspective and argue strenuously for various kinds of limits. The Department of Agriculture, promoting farm products, supporting goods it exports, you know, not wanting to rile people up, would come in very strongly opposing a lot of those public health measures. And the president would make that call. Now, is that politics? Is it policy? Is it, you know, listening to a different lens? But he made the call and some of those battles we would win and some we would lose. But again, it’s a very legitimate role for the president to make. He’s getting input from leaders who see things through a different lens, and then he’s the ultimate decider and he would make the decision.

Becerra: So um, I’ve done politics and policy much longer than I’ve done the secretary role. And I will tell you that there is a big difference. We do do some policy, but for the most part we execute. The policy has been given to us by Congress, and to some degree the White House will help shape that policy. We have some role in policymaking because we put out guidances, and the guidance may look like it’s political or policy-driven, or we decide how much sodium might be allowed in a particular product and so forth. But for the most part, we’re executing on a policy that’s been dictated to the agencies by Congress. And I love that, because when I became AG in California, it really hit you how important it is to be able to marshal facts. And in HHS, it’s not just facts; it’s scientific facts. It is such a treat, as an attorney, to get to rely on scientific facts to push things like masking policy in the face of some hostility that went throughout the country to the point that our CDC director had to have security detail because she was getting death threats for having policies that would urge society to have masking policies for adults, for children. We do rely principally on science and the facts at HHS. Maybe folks don’t believe it, but I can put those on the table for you to take a look at. And perhaps the best example I can give you, and I don’t know if I’ll have time to connect the dots for you, because it’s a little esoteric: Title 42, which many of you got to hear about all the time in the news. Title 42 was a policy that was put in place under the Trump administration when we were in the height of the covid pandemic. We didn’t know what was causing covid, so we were trying to make sure that we protected ourselves and our borders. And so therefore, for public health reasons, we sort of closed our borders to the degree that we could, except for those who proved that they had gone through steps and so forth to be able to come in. Title 42 was used under the Trump administration, under the Biden administration to stop people from coming through our southern border. And there reached a point where, as things got better, our team said Title 42, which is health-based — it’s to stop the spread of contagion — was no longer the appropriate tool to use at the border, because we were letting people in the northern border, by plane, and all the rest. You just had to go through protocols. And so they were saying for health care reasons you go through protocols. But Title 42 is probably not the blanket way to deal with this issue, because it’s no longer simply a health care issue. We pushed really hard on that within the administration to the point where, finally, the administration said, “We’re pulling down Title 42.” Then the politics and the policy came in, from Congress saying, “Oh, how dare you take down Title 42? How dare you do that and let the flood of people come into this country?” Well, look, if you want to deal with people coming into the country, whatever way, then deal with our country’s borders through our immigration laws, not through our health care laws. Don’t try to make health care experts be the reason why you’re stopping someone from coming into this country. Stop hiding behind their skirt. And that’s where we went. And the administration took that policy as well. They took the policy. We then got sued and a court said, “No, you will not take down Title 42.” Ultimately, we think we were going to prevail in court, but ultimately, because we pulled down the public health emergency, things got better under covid, we no longer needed Title 42. But just again, to be clear, the women and men at HHS, we execute; we use the facts and the science. We don’t do politics.

Rovner: So we’ve been very serious.

Becerra: Not everybody believed me on that one.

Rovner: I know, I know. We’ve been very serious here for 50-some minutes. I want to go down the line. What’s the most fun thing you got to do as secretary or the coolest thing that you got to do as secretary?

Azar: Probably for me, it was the trip to the Congo, you know, being in the DRC, going to Uganda, going to Rwanda, flying on MONUSCO [United Nations Organization Stabilization Mission in the Democratic Republic of the Congo] U.N. peacekeeping forces; there was a Russian gunboat taking Tedros and Fauci and Redfield and me there into this war zone. I mean, it’s a once-in-a-lifetime — it’s sort of crazy — but once-in-a-lifetime thing that had impact.

Rovner: I don’t know that most people would call that fun.

Azar: I mean, it’ll be one of those great memories for life. Yeah. Yeah.

Sebelius: There were certainly some great trips and memorable experiences around health results in various parts of the world. Some martinis on the presidential balcony and looking at the Washington Monument — that’s pretty cool at night. But my, I think, personally kind of fun thing. I raised my children on “Sesame Street,” and they loved “Sesame Street” and the characters, and that was sort of part of the family routine. And so I got to go to “Sesame Street” and make a public service commercial with Elmo. I got to see Oscar’s garbage can. I met Snuffleupagus. But the Elmo commercial was to teach kids how to sneeze because, again, we were trying to spread good health habits. And so the script said — I mean, Elmo is right here and I’m here — and the script said, “OK, Elmo, we need to practice how to sneeze. So put your arm up and bend your elbow and sneeze into your arm.” And the puppet answered, “Elmo has no elbow.” That wasn’t part of the script. It was like, really? “And if Elmo does that, it will go like this: Achoo!” OK, so we flipped the script and Elmo taught me to sneeze. But that was a very memorable day to finally be on “Sesame Street.” It was very cool.

Rovner: OK, beat that.

Becerra: My team has not yet scheduled me to go on “Sesame Street,” so it’s going to be tough.

Sebelius: But just remember, Elmo has no elbows, if you get to go.

Becerra: I think probably what I will think of most is that I had had a chance to be in the White House and meet with the president in the Oval Office and the rest as a of member of Congress and so forth. When I went in, and it was because things were kind of dire with the kids at the border, and I knew I was going to get a whiplash after the meeting — it wasn’t fun at the time, but walking out, you know, it’s the kind of thing you think of, you know, “West Wing” kind of thing. You actually got the — president sat at the table, I was the guy that sat across from him. Everybody else was to the sides. You know, for a kid who was the first in his family to go to college, Dad didn’t get past the sixth grade, Mom didn’t come here till she was 18, when she came from Guadalajara, Jalisco, Mexico. It was pretty cool.

Rovner: So I could go on all night, but I think we’re not supposed to. So I want to ask you all one last question, which is, regardless of party affiliation, what is one piece of advice you would give to a successor as HHS secretary? Why don’t you start?

Becerra: Gosh, don’t start with me because I’m still there, so —

Rovner: All right.

Azar: I’m going to plagiarize and I’m going to give you the advice I wish Donna Shalala had given me before I took the job. But I would give it to any successor, which: She told me, “Do not take the job unless you have authority over personnel. Refuse to take the job unless you have control over who’s working, because people is policy and you have to be able to control the ethics, the tone, the culture of the organization. And people are that, and you need to have that authority.” And ever really since the Reagan administration, the Office of Presidential Personnel has just been this vortex of power that controls all political appointees at Cabinet departments. And I think if the president really wants you, you need to strike a deal that says, at a minimum, I’ve got veto or firing rights.

Sebelius: I think my advice would be the advice you give to a lot of employees who work in the private sector or public sector is, Make sure you’re aligned with the mission of the CEO, so in this case the president. I mean, don’t take the job because it’s cool and you’ll be a Cabinet member, because then it will be miserable. And with HHS, recognize the incredible assets across this agency. It is the most dazzling workforce I’ve ever had an opportunity to be with — the brightest people of all shapes, sizes, backgrounds, who taught me so much every day — and just cherish and relish your opportunity to be there, even for a short period of time. It’s miraculous.

Becerra: So I’d agree with Alex: Assemble your team. And it really is, because Kathleen mentioned it, it’s a very small group that actually you get to bring in, or even the administration gets to bring in, because most of the folks are civil service, so it’s only a fraction of the people that are going to be new. But your inner circle, the team that’s going to sort of be there and guide you and tell you what’s truth, they’ve got to be your team, because someone’s got to have your back. But I’d also say, know your reach, because as Kathleen said, this is not the Azar administration or the Sebelius administration, the Becerra administration. It’s the administration of the guy who got elected. And at the end of the day, the president gets to make the call. So as much as you may want to do something, you’ve got to know your reach.

Rovner: Well, I want to thank you all. I hope the audience had half as much fun as I did doing this. Let’s do it again next year. Thank you, all. OK, that’s our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review; that helps other people find us, too. Special thanks, as always, and particularly this week, to our producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @jrovner. We’ll be back in your feed from Washington next week. Until then, be healthy.

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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Federal officials have instructed at least 30 states to reinstate Medicaid and Children’s Health Insurance Program coverage for half a million people, including children, after an errant computer program wrongly determined they were no longer eligible. It’s just the latest hiccup in the yearlong effort to redetermine the eligibility of beneficiaries now that the program’s pandemic-era expansion has expired.

Meanwhile, the federal government is on the verge of a shutdown, as a small band of House Republicans resists even a short-term spending measure to keep the lights on starting Oct. 1. Most of the largest federal health programs, including Medicare, have other sources of funding and would not be dramatically impacted — at least at first. But nearly half of all employees at the Department of Health and Human Services would be furloughed, compromising how just about everything runs there.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Roubein of The Washington Post, Sandhya Raman of CQ Roll Call, and Sarah Karlin-Smith of Pink Sheet.

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Rachel Roubein
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Among the takeaways from this week’s episode:

• Officials in North Carolina announced the state will expand its Medicaid program starting on Dec. 1, granting thousands of low-income residents access to health coverage. With North Carolina’s change, just 10 states remain that have not expanded the program — yet, considering those states have resisted even as the federal government has offered pandemic-era and other incentives, it is unlikely more will follow for the foreseeable future.
• The federal government revealed that nearly half a million individuals — including children — in at least 30 states were wrongly stripped of their health coverage under the Medicaid unwinding. The announcement emphasizes the tight-lipped approach state and federal officials have taken to discussing the in-progress effort, though some Democrats in Congress have not been so hesitant to criticize.
• The White House is pointing to the possible effects of a government shutdown on health programs, including problems enrolling new patients in clinical trials at the National Institutes of Health and conducting food safety inspections at the FDA.
• Americans are grappling with an uptick in covid cases, as the Biden administration announced a new round of free test kits available by mail. But trouble accessing the updated vaccine and questions about masking are illuminating the challenges of responding in the absence of a more organized government effort.
• And the Biden administration is angling to address health costs at the executive level. The White House took its first step last week toward banning medical debt from credit scores, as the Federal Trade Commission filed a lawsuit to target private equity’s involvement in health care.
• Plus, the White House announced the creation of its first Office of Gun Violence Prevention, headed by Vice President Kamala Harris.

Also this week, Rovner interviews KFF Health News’ Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month,” about a hospital bill that followed a deceased patient’s family for more than a year. If you have an outrageous or infuriating medical bill you’d like to send us, you can do that here.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:

Julie Rovner: JAMA Internal Medicine’s “Comparison of Hospital Online Price and Telephone Price for Shoppable Services,” by Merina Thomas, James Flaherty, Jiefei Wang, et al.

Sarah Karlin-Smith: The Los Angeles Times’ “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo.

Rachel Roubein: KFF Health News’ “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney.

Sandhya Raman: NPR’s “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” by Meg Anderson.

Also mentioned in this week’s episode:

• KFF Health News’ “Diagnosis: Debt,” by Noam N. Levey and KFF Health News, NPR, and CBS staff.
• The New York Times’ “In Hospitals, Viruses Are Everywhere. Masks Are Not,” by Apoorva Mandavilli.

click to open the transcript

Transcript: More Medicaid Messiness

KFF Health News’ ‘What the Health?’Episode Title: More Medicaid MessinessEpisode Number: 316Published: Sept. 27, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping early this week, on Wednesday, Sept. 27, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this, so here we go.

We are joined today via video conference by Rachel Roubein of The Washington Post.

Rachel Roubein: Good morning. Thanks for having me.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: And Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: Later in this episode we’ll have my KFF Health News-NPR “Bill of the Month” interview with Samantha Liss. This month’s bill is literally one that followed a patient to his family after his death. But first, the news. I want to start with Medicaid this week. North Carolina, which approved but didn’t fund its Medicaid expansion earlier this year, approved a budget this week that will launch the expansion starting Dec. 1. That leaves just 10 states that have still not expanded the program to, mostly, low-income adults, since the Affordable Care Act made it possible in, checks notes, 2014. Any other holdout states on the horizon? Florida is a possibility, right, Rachel?

Roubein: Yes. There’s only technically three states that can do ballot measures. Now North Carolina, I believe, was the first state to actually pass through the legislature since Virginia in 2018. A lot of the most recent states, seven conservative-leaning states, instead pursued the ballot measure path. In Florida, advocates have been eyeing a 2026 ballot measure. But the one issue in Florida is that they need a 60% threshold to pass any constitutional amendment, so that is pretty, pretty high and would take a lot of voter support.

Rovner: And they would need a constitutional amendment to expand Medicaid?

Roubein: A lot of the states have been going the constitutional amendment route in terms of Medicaid in recent years. Because what they found was some legislatures would come back and try and change it, but if it’s a constitutional amendment, they weren’t able to do that. But a lot of the holdout states don’t have ballot measure processes, where they could do this — like Alabama, Georgia, etc.

Raman: Kind of just echoing Rachel that this one has been interesting just because it had come through the legislature. And even with North Carolina, it’s been something that we’ve been eyeing for a few years, and that they’d gone a little bit of the way, a little bit of the way a few times. And it was kind of the kind of gettable one within the ones that hadn’t expanded. And the ones we have left, there’s just really not been much progress at all.

Rovner: I would say North Carolina, like Virginia, had a Democratic governor that ran on this and a Republican legislature, or a largely Republican legislature, hence the continuing standoff. It took both states a long time to get to where they had been trying to go. And you’re saying the rest of the states are not split like that?

Raman: Yeah, I think it’ll be a much more difficult hill to climb, especially when, in the past, we had more incentives to expand with some of the previous covid relief laws, and they still didn’t bite. So it’s going to be more difficult to get those.

Rovner: No one’s holding their breath for Texas to expand. Anyway, while North Carolina will soon start adding people to its Medicaid rolls, the rest of the states are shedding enrollees who gained coverage during the pandemic but may no longer be eligible. And that unwinding has been bumpy to say the least. The latest bump came last week when the Department of Health and Human Services revealed that more than half a million people, mostly children, had their coverage wrongly terminated by as many as 30 states. It seems a computer program failed to note that even if a parent’s income was now too high to qualify, that same income could still leave their children eligible. Yet the entire family was being kicked off because of the way the structure of the program worked. I think the big question here is not that this happened, but that it wasn’t noticed sooner. It should have been obvious — children’s eligibility for Medicaid has been higher than adults since at least the 1980s. This unwinding has been going on since this spring. How is this only being discovered now? It’s September. It’s the end of September.

Roubein: Yeah. I mean, this was something advocates who have been closely watching this have been ringing the alarm bells for a while, and then it took time. CMS [the Centers for Medicare & Medicaid Services] had put something out, I believe it was roughly two weeks before they actually then had the roughly half a million children regain coverage — they had put out a, “OK, well, we’re exploring which states.” And lots of reporters were like, “OK, well which state is this an issue?” So yeah, the process seemed like it took some time here.

Rovner: I know CMS has been super careful. I mean, I think they’re trying not to politicize this, because they’ve been very careful not to name states, and in many cases who they know have been wrongly dropping people. I guess they’re trying to keep it as apolitical as possible, but I think there are now some advocates who worry that maybe CMS is being a little too cautious.

Karlin-Smith: Yeah, I think from the other side too, if you’ve talked to state officials, they’re also trying to be really cautious and not criticize CMS. So it seems like both sides are not wanting to go there. But I mean some Democrats in Congress have been critical of how the effort has gone.

Rovner: Yeah. And of course, if the government shuts down, as seems likely at the end of this week, that’s not going to make this whole process any easier, right? The states will still get to do what the states are doing. Their shutdown efforts, or their re-qualification efforts, are not federally funded, but the people at CMS are.

Karlin-Smith: Yeah, that’ll just throw another thorn in this as we’re getting very, very likely headed towards a shutdown at this point on the 27th. So I think that’ll be another barrier for them regardless. And I mean, most CMS money isn’t even affected by the yearly budget anyways because it’s mandatory funding, but that’ll be a barrier for sure.

Rovner: So, speaking of the government shutdown, it still seems more likely than not that Congress will fail to pass either any of the 12 regular spending bills or a temporary measure to keep the lights on when the fiscal year ends at midnight Sunday. That would lead to the biggest federal shutdown since 2013 when, fun fact, the shutdown was an attempt to delay the rollout of the Affordable Care Act. What happens to health programs if the government closes? It’s kind of a big confusing mess, isn’t it?

Roubein: Yeah, well, what we know that would definitely continue and in the short term is Medicare and Medicaid, Obamacare’s federal insurance marketplace. Medicaid has funding for at least the next three months, and there’s research developing vaccines and therapeutics that HHS, they put out their kind of contingency “What happens if there’s a shutdown?” plan. But there’s some things that the White House and others are kind of trying to point to that would be impacted, like the National Institutes of Health may not be able to enroll new patients in clinical trials, the FDA may need to delay some food safety inspections, etc.

Rovner: Sarah, I actually forgot because, also fun fact, the FDA is not funded through the rest of the spending bill that includes the Department of Health and Human Services. It’s funded through the agriculture bill. So even though HHS wasn’t part of the last shutdown in 2018 and 2019, because the HHS funding bill had already gone through, the FDA was sort of involved, right?

Karlin-Smith: Right. So FDA is lumped with the USDA, the Agriculture Department, for the purposes of congressional funding, which is always fun for a health reporter who has to follow both of those bills. But FDA is always kind of a unique one with shutdown, because so much of their funding now is user fees, particularly for specific sections. So the tobacco part of FDA is almost 100% funded by user fees, so they’re not really impacted by a shutdown. Similarly, a lot of drug, medical device applications, and so forth also are totally funded by user fees, so their reviews keep going. That said, the way user fees are, they’re really designated to specific activities.

So, where there isn’t user fees and it’s not considered a critical kind of public health threat, things do shut down, like Rachel mentioned: a lot of food work and inspections, and even on the drug and medical device side, some activities that are related that you might think would continue don’t get funded.

Rovner: Sandhya, is there any possibility that this won’t happen? And that if it does happen, that it will get resolved anytime soon?

Raman: At this point, I don’t think that we can navigate it. So last night, the Senate put out their bipartisan proposal for a continuing resolution that you would attach as an amendment to the FAA, the Federal Aviation [Administration] reauthorization. And so that would temporarily extend a lot of the health programs through Nov. 17. The issue is that it’s not something that if they are able to pass that this week, they’d still have to go to the House. And the House has been pretty adamant that they want their own plan and that the CR that they were interested in had a lot more immigration measures, and things there.

And the House right now has been busy attempting to pass this week four of the 12 appropriations bills. And even if they finished the four that they did, that they have on their plate, that would still mean going to the Senate. And Biden has said he would veto those, and it’s still not the 12. So at this point, it is almost impossible for us to not at least see something short-term. But whether or not that’s long-term is I think a question mark in all the folks that I have been talking to about this right now.

Rovner: Yeah, we will know soon enough what’s going to happen. Well, meanwhile, because there’s not enough already going on, covid is back. Well, that depends how you define back. But there’s a lot more covid going around than there was, enough so that the federal government has announced a new round of free tests by mail. And there’s an updated covid vaccine — I think we’re not supposed to call it a booster — but its rollout has been bumpy. And this time it’s not the government’s fault. That’s because this year the vaccine is being distributed and paid for by mostly private insurance. And while lots of people probably won’t bother to get vaccinated this fall, the people who do want the vaccine are having trouble getting it. What’s happening? And how were insurers and providers not ready for this? We’d been hearing the updated vaccines would be available in mid-September for months, Sarah. I mean they really literally weren’t ready.

Karlin-Smith: Yeah. I mean, it’s not really clear why they weren’t ready, other than perhaps they felt they didn’t need to be, to some degree. I mean, normally, I know I was reading actually because we’ve also recently gotten RSV [respiratory syncytial virus] vaccine approvals — normally they actually have almost like a year, I think, to kind of add vaccines to plans and schedules and so forth, and pandemic covid-related laws really shortened the time for covid. So they should have been prepared and ready. They knew this was coming. And people are going to pharmacies, or going to a doctor’s appointment, and they’re being told, “Well, we can give you the vaccine, but your insurance plan isn’t set up to cover it yet, even though technically you should be.” There seems like there’s also been lots of distribution issues where again, people are going to sites where they booked appointments, and they’re saying, “Oh, actually we ran out.” They’re trying another site. They’ve run out.

So, it’s sort of giving people a sense of the difference of what happens when sort of the government shepherds an effort and everybody — things are a bit simplified, because you don’t have to think about which site does your insurance cover. There is a program for people who don’t have insurance now who can get the vaccine for free, but again, you’re more limited in where you can go. There’s not these big free clinics; that’s really impacting childhood vaccinations, because, again, a lot of children can’t get vaccinated at the pharmacy. So I think people are being reminded of what normal looked like pre-covid, and they’re realizing maybe we didn’t like this so much after all.

Rovner: Yeah, it’s not so efficient either. All the people who said, “Oh, the private sector could do this so much more efficiently than the government.” And it’s like, we’re ending up with pretty much the same issues, which is the people who really want the vaccine are chasing around and not finding it. And I know HHS Secretary Becerra went and had this event at a D.C. pharmacy where he was going to get his vaccine. And I think the event was intended to encourage people to go get vaccinated, but it happened right at the time when the big front surge of people who wanted to get vaccinated couldn’t find the vaccine.

Karlin-Smith: I think that’s a big concern because we’ve had such low uptake of booster or additional covid shots over the past couple of years. So the people who are sort of the most go-getters, the ones who really want the shots, are having trouble and feeling a bit defeated. What does that mean for the people that are less motivated to get it, who may not make a second or third attempt if it’s not easy? We sort of know, and I think public health folks kind of beat the drum, that sort of just meeting people where they are, making it easy, easy, easy, is really how you get these things done. So it’s hard to see how we can improve uptake this year when it’s become more complicated, which I think is going to be a big problem moving forward.

Rovner: Yeah. Right. And clearly these are issues that will be ironed out probably in the next couple of weeks. But I think what people are going to remember, who are less motivated to go get their vaccines, is, “Oh my God, these people I know tried to get it and it took them weeks. And they showed up for their appointment and they couldn’t get it.” And it’s like, “It was just too much trouble and I can’t deal with it.” And there’s also, I think you mentioned that there’s an issue with kids who are too young to get the vaccine too, right?

Karlin-Smith: Right. Still, I think people forget that you have to be 6 months to get the vaccine. If you’re under 3, you basically cannot get it in a pharmacy, so you have to get it in a doctor’s office. But a lot of people are reporting online their doctor’s office sort of stopped providing covid vaccines. So they’re having trouble just finding where to go. It seems like the distribution of shots for younger children has also been a bit slower as well. And again, this is a population where just even primary series uptake has been a problem. And people are in this weird gap now where, if you can’t get access to the new covid vaccine but your kid is eligible, the old vaccine isn’t available.

So you’re sort of in this gap where your kid might not have had any opportunity yet to get a covid vaccine, and there’s nothing for them. I think we forget sometimes that there are lots of groups of people that are still very vulnerable to this virus — including newborn babies who haven’t been exposed at all, and haven’t gotten a chance to get vaccinated.

Rovner: Yeah. So this is obviously still something that we need to continue to look at. Well, meanwhile, mask mandates are making a comeback, albeit a very small one. And they are not going over well. I’ve personally been wearing a mask lately because I’m traveling later this week and next, and don’t want to get sick, at least not in advance. But masks are, if anything, even more controversial and political than they were during the height of the pandemic. Does public health have any ideas that could help reverse that trend? Or are there any other things we could do? I’ve seen some plaintiff complaints that we’ve not done enough about ventilation. That could be something where it could help, even if people won’t or don’t want to wear masks. I mean, I’m surprised that vaccination is still pretty much our only defense.

Karlin-Smith: I think with masks, one thing that’s made it hard for different parts of the health system and lower-level kind of state public health departments to deal with masks is that the CDC [Centers for Disease Control and Prevention] recommendations around masking are pretty loose at this point. So The New York Times had a good article about hospitals and masking, and the kind of guidance around triggers they’ve given them are so vague. They kind of are left to make their own decisions. The CDC actually still really hasn’t emphasized the value of KN95 and N95 respirators over surgical masks. So I think it becomes really hard for those lower-level institutions to sort of push for something that is kind of controversial politically. And a lot of people are just tired of it when they don’t have the support of those bigger institutions saying it. And some of just even figuring out levels of the virus and when that should trigger masking.

It’s much harder to track nowadays because so much of our systems and data reporting is off. So, we have this sense we’re in somewhat of a surge now. Hospitalizations are up and so forth. But again, it’s a lot easier for people to make these decisions and figure out when to pull triggers when you have clear data that says, “This is what’s going on now.” And to some extent we’re … again, there’s a lot of evidence that points to a lot of covid going around now, but we don’t have that sort of hard data that makes it a lot easier for people to justify policy choices.

Raman: You just brought up ventilation and it took time, one, for some scientists to realize that covid is also spread through ultra-tiny particles. But it also took, after that, a while for the White House to pivot its strategy to stress ventilation measures in addition to masks, and face covering. So a lot of places are still kind of behind on having better ventilation in an office, or kind of wherever you’re going.

Rovner: Yeah, I mean, one would think that improving ventilation in schools would improve, not only not spreading covid, but not spreading all of the respiratory viruses that keep kids out of school and that make everybody sick during the winter, during the school year.

Roubein: I was going to piggyback on something Sarah said, which was about how the CDC doesn’t have clear benchmarks on when there should be a guideline for what is high transmission in the hospital for them to reinstate a mask mandate or whatever. But there’s also nuance to consider there. Within that there’s, is there a partial masking rule? Which is like: Does the health care staff have to wear them versus the patients? And does that have enough benefit on its own if it’s only required to one versus the other? I mean, I know that a lot of folks have called for more strict rules with that, but then there’s also the folks that are worried about the backlashes. This has gotten so politicized, how many different medical providers have talked about angst at them, attacks at them, over the polarization of covid? So there’s so many things that are intertwined there that it’s tough to institute something.

Karlin-Smith: I think the other thing is we keep forgetting this is not all about covid. We’ve learned a lot of lessons about public health that could be applicable, like you mentioned in schools, beyond covid. So if you’re in the emergency room, because you have cancer and you need to see a doctor right away. And you’re sitting next to somebody with RSV or the flu, it would also be beneficial to have that patient wearing a mask because if you have cancer, you do not need to add one of these infectious diseases on top of it. So it’s just been interesting, I think, for me to watch because it seemed like at different points in this crisis, we were sort of learning things beyond covid for how it could improve our health care system and public health. But for the most part, it seems like we’ve just kind of gone back to the old ways without really thinking about what we could incorporate from this crisis that would be beneficial in the future.

Rovner: I feel like we’ve lost the “public” in public health. That everybody is sort of, it’s every individual for him or herself and the heck with everybody else. Which is exactly the opposite of how public health is supposed to work. But perhaps we will bounce back. Well, moving on. The Biden administration, via the Consumer Financial Protection Bureau, the CFPB, took the first steps last week to ban medical debt from credit scores, which would be a huge step for potentially tens of millions of Americans whose credit scores are currently affected by medical debt. Last year, the three major credit bureaus, Equifax, Experian, and TransUnion, agreed not to include medical debt that had been paid off, or was under $500 on their credit reports. But that still leaves lots and lots of people with depressed scores that make it more expensive for them to buy houses, or rent an apartment, or even in some cases to get a job. This is a really big deal if medical debt is going to be removed from people’s credit reports, isn’t it?

Roubein: Yeah. I think that was an interesting move when they announced that this week. Because the CFPB had mentioned that in a report they did last year, 20% of Americans have said that they had medical debt. And it doesn’t necessarily appear on all credit reports, but like you said, it can. And having that financial stress while going through a health crisis, or someone in your family going through a health crisis, is layers upon layers of difficulty. And they had also said in their report that medical billing data is not an accurate indicator of whether or not you’ll repay that debt compared to other types of credit. And it also has the layers of insurance disputes, and medical billing errors, and all that sort of thing. So this proposal that they have ends up being finalized as a rule, it could be a big deal. Because some states have been trying to do this on a state-by-state level, but still in pretty early stages in terms of a lot of states being on board. So this can be a big thing for a fifth of people.

Rovner: Yeah, many people. I’m going to give a shout-out here to my KFF Health News colleague Noam Levey, who’s done an amazing project on all of this, and I think helped sort of push this along. Well, while we are on the subject of the Biden administration and money in health care, the Federal Trade Commission is suing a private equity-backed doctors group, U.S. Anesthesia Partners, charging anti-competitive behavior, that it’s driving up the price of anesthesia services by consolidating all the big anesthesiology practices in Texas, among other things. FTC Chair Lina Khan said the agency “will continue to scrutinize and challenge serial acquisitions roll-ups and other stealth consolidation schemes that unlawfully undermine fair competition and harm the American public.” This case is also significant because the FTC is suing not just the anesthesia company, but the private equity firm that backs it, Welsh, Carson, Anderson & Stowe, which is one of the big private equity firms in health care. Is this the shot across the bow for private equity and health care that a lot of people have been waiting for? I mean, we’ve been talking about private equity and health care for three or four years now.

Karlin-Smith: I think that’s what the FTC is hoping for. They’re saying not just that we’re going after anti-competitive practices in health care, that, I think, they’re making a clear statement that they’re going after this particular type of funder, which we’ve seen has proliferated around the system. And I think this week there was a report from the government showing that CMS can’t even track all of the private equity ownership of nursing homes. So we know this isn’t the only place where doctors’ practices being bought up by private equity has been seen as potentially problematic. So this has been a very sort of activist, I think, aggressive FTC in health care in general, and in a number of different sectors. So I think they’re ready to deliberate, with their actions and warnings.

Rovner: Yeah, it’s interesting. I mean, we mostly think, those of us who have followed the FTC in healthcare, which gets pretty nerdy right there, usually think of big hospital groups trying to consolidate, or insurers trying to consolidate these huge mega-mergers. But what’s been happening a lot is these private equity companies have come in and bought up physician practices. And therefore they become the only providers of anesthesia, or the only providers of emergency care, or the only providers of kidney dialysis, or the only providers of nursing homes, and therefore they can set the prices. And those are not the level of deals that tend to come before the FTC. So I feel like this is the FTC saying, “See you little people that are doing big things, we’re coming for you too.” Do we think this might dampen private equity’s enthusiasm? Or is this just going to be a long-drawn-out struggle?

Roubein: I could see it being more of a long-drawn-out struggle because even if they’re showing it as an example, there’s just so many ways that this has been done in so many kind of sectors as you’ve seen. So I think it remains to be seen further down the line as this might happen in a few different ways to a few different folks, and how that kind of plays out there. But it might take some time to get to that stage.

Karlin-Smith: I was going to say it’s always worth also thinking about just the size and budget of the FTC in comparison to the amount of private actors like this throughout the health system. So I mean, I think that’s one reason sometimes why they do try and kind of use that grandstanding symbolic messaging, because they can’t go after every bad actor through that formal process. So they have to do the signaling in different ways.

Raman: I think probably as we’ve all learned as health reporters, it takes a really long time for there to be change in the health care system.

Rovner: And I was just going to say, one thing we know about people who are in health care to make money is that they are very creative in finding ways to do it. So whatever the rules are, they’re going to find ways around them and we will just sort of keep playing this cat and mouse for a while. All right, well finally this week, a story that probably should have gotten more attention. The White House last week announced creation of the first-ever Office of Gun Violence Prevention to be headed by Vice President Kamala Harris. Its role will be to help implement the very limited gun regulation passed by Congress in 2022, and to coordinate other administration efforts to curb gun violence. I know that this is mostly for show, but sometimes don’t you really have to elevate an issue like this to get people to pay attention, to point out that maybe you’re trying to do something? Talk about things that have been hard for the government to do over the last couple of decades.

Raman: It took Congress a long time to then pass a new gun package, which the shooting in Uvalde last year ended up catalyzing. And Congress actually got something done, which was more limited than some gun safety advocates wanted. But it does take a lot to get gun safety reform across the finish line.

Rovner: I know. I mean, it’s one of those issues that the public really, really seems to care about, and that the government really, really, really has trouble doing. I’ve been covering this so long, I remember when they first banned gun violence research at HHS back in the mid-1990s. That’s how far back I go, that they were actually doing it. And the gun lobby said, “No, no, no, no, no. We don’t really want these studies that say that if you have a gun in the house, it’s more likely to injure somebody, and not necessarily the bad guy.” They were very unhappy, and it took until three or four years ago for that to be allowed to be funded. So maybe the idea that they’re elevating this somewhat, to at least wave to the public and say, “We’re trying. We’re fighting hard. We’re not getting very far, but we’re definitely trying.” So I guess we will see how that comes out.

All right, well that is this week’s news. Now, we will play my “Bill of the Month” interview with Sam Liss, and then we’ll come back with our extra credits. I am pleased to welcome to the podcast my KFF Health News colleague Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Welcome.

Liss: Hi.

Rovner: This month’s bill involves a patient who died in the hospital, right? Tell them who he was, what he was sick with, and about his family.

Liss: Yeah. So Kent Reynolds died after a lengthy hospital stay in February of 2022. He was actually discharged after complications from colon cancer, and died in his home. And his widow, Eloise Reynolds, was left with a series of complicated hospital bills, and she reached out to us seeking help after she couldn’t figure them out. And her and Kent were married for just shy of 34 years. They lived outside of St. Louis and they have two adult kids.

Rovner: So Eloise Reynolds received what she assumed was the final hospital bill after her husband died, which she paid, right?

Liss: Yeah, she did. She paid what she thought was the final bill for $823, but a year later she received another bill for $1,100. And she was confused as to why she owed it. And no one could really give her a sufficient answer when she reached out to the hospital system, or the insurance company.

Rovner: Can a hospital even send you a bill a year after you’ve already paid them?

Liss: You know what, after looking into this, we learned that yeah, they actually can. There’s not much in the way that stops them from coming after you, demanding more money, months, or even years later.

Rovner: So this was obviously part of a dispute between the insurance company and the hospital. What became of the second bill, the year-later bill?

Liss: Yeah. After Eloise Reynolds took out a yardstick and went line by line through each charge and she couldn’t find a discrepancy or anything that had changed, she reached out to KFF Health News for help. And she was still skeptical about the bill and didn’t want to pay it. And so when we reached out to the health system, they said, “Actually, you know what? This is a clerical error. She does not owe this money.” And it sort of left her even more frustrated, because as she explained to us, she says, “I think a lot of people would’ve ended up paying this additional amount.”

Rovner: So what’s the takeaway here? What do you do if you suddenly get a bill that comes, what seems, out of nowhere?

Liss: The experts we talked to said Eloise did everything right. She was skeptical. She compared, most importantly, the bills that she was getting from the hospital system against the EOBs that she was getting from her insurance company.

Rovner: The explanation of benefits form.

Liss: That’s right. The explanation of benefits. And she was comparing those two against one another, to help guide her on what she should be doing. And because those were different between the two of them, she was left even more confused. I think folks that we spoke to said, “Yeah, she did the right thing by pushing back and demanding some explanations.”

Rovner: So I guess the ultimate lesson here is, if you can’t get satisfaction, you can always write to us.

Liss: Yeah, I hate to say that in a way, because that’s a hard solution to scale for most folks. But yeah, I mean, I think it points to just how confusing our health care system is. Eloise seemed to be a pretty savvy health care consumer, and she even couldn’t figure it out. And she was pretty tenacious in her pursuit of making phone calls to both the insurance company and the hospital system. And I think when she couldn’t figure that out, and she finally turned to us asking for help.

Rovner: So well, another lesson learned. Samantha Liss, thank you very much for joining us.

Liss: Thanks.

Rovner: Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.

OK, we’re back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org, and in our show notes on your phone or other mobile device. Sarah, you were the first to choose this week, so you get to go first.

Karlin-Smith: Sure. I looked at a story in the Los Angeles Times, “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo. Hopefully I didn’t mispronounce her name. They wrote a really fascinating but sad story about people working in an industry where they’re cutting engineered stone countertops for people’s kitchens and so forth. And because of the materials in this engineered product, they’re inhaling particles that is basically giving people at a very young age incurable and deadly lung disease. And it’s an interesting public health story about sort of the lack of protection in place for some of the most vulnerable workers. It seems like this industry is often comprised of immigrant workers. Some who kind of essentially go to … outside a Home Depot, the story suggests, or something like that and kind of get hired for day labor.

So they just don’t have the kind of power to sort of advocate for protections for themselves. And it’s just also an interesting story to think about, as consumers I think people are not always aware of the costs of the products they’re choosing. And how that then translates back into labor, and the health of the people producing it. So, really fascinating, sad piece.

Rovner: Another product that you have to sort of … I remember when they first were having the stories about the dust in microwave popcorn injuring people. Sandhya, why don’t you go next?

Raman: So my extra credit this week is from NPR and it’s by Meg Anderson. And it’s called “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” This is really interesting. It’s an investigation that looks at the deaths of individuals who died either while serving in federal prison or right after. And they looked at some of the Bureau of Prisons data, and it showed that 4,950 people had died in custody over the past decade. But more than a quarter of them were all in one correctional facility in Butner, North Carolina. And the investigation found out that the patients here and nationwide are dying at a higher rate, and the incarcerated folks are not getting care for serious illnesses — or very delayed care, until it’s too late. And the Butner facility has a medical center, but a lot of times the inmates are being transferred there when it was already too late. And then it’s really sad the number of deaths is just increasing. And just, what can be done to alleviate them?

Rovner: It was a really interesting story. Rachel.

Roubein: My extra credit, the headline is “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney from WPLN, in partnership with KFF Health News. And she writes about the national teen birth rate and how it’s declined dramatically over the past three decades. And that, essentially, it’s still dropping, but preliminary data released in June from the CDC shows that that descent may be slowing. And Catherine had talked to doctors and other service providers and advocates, who essentially expressed concern that the full CDC dataset release later this year can show a rise in teen births, particularly in Southern states. And she talked to experts who pointed to several factors here, including the Supreme Court’s decision to overturn Roe v. Wade, intensifying political pushback against sex education programs, and the impact of the pandemic on youth mental health.

Rovner: Yeah. There’ve been so many stories about the decline in teen birth, which seemed mostly attributable to them being able to get contraception. To get teens not to have sex was less successful than getting teens to have safer sex. So we’ll see if that tide is turning. Well, I’m still on the subject of health costs this week. My story is a study from JAMA Internal Medicine that was conducted in part by Shark Tank panelist Mark Cuban, for whom health price transparency has become something of a crusade. This study is of a representative sample of 60 hospitals of different types conducted by researchers from the University of Texas. And it assessed whether the online prices posted for two common procedures, vaginal childbirth and a brain MRI, were the same as the prices given when a consumer called to ask what the price would be. And surprise. Mostly they were not. And often the differences were very large. In fact, to quote from the study, “For vaginal childbirth, there were five hospitals with online prices that were greater than $20,000, but telephone prices of less than $10,000. The survey was done in the summer of 2022, which was a year and a half after hospitals were required to post their prices online.” At some point, you have to wonder if anything is going to work to help patients sort out the prices that they are being charged for their health care. Really eye-opening study.

All right, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner. Sarah.

Karlin-Smith: I’m @SarahKarlin, or @sarahkarlin-smith.

Rovner: Sandhya.

Raman: @SandhyaWrites

Rovner: Rachel.

Roubein: @rachel_roubein

Rovner: We will be back in your feed next week. Until then, be healthy.

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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Health and other federal programs are at risk of shutting down, at least temporarily, as Congress races toward the Oct. 1 start of the fiscal year without having passed any of its 12 annual appropriations bills. A small band of conservative House Republicans are refusing to approve spending bills unless domestic spending is cut beyond levels agreed to in May.

Meanwhile, former President Donald Trump roils the GOP presidential primary field by vowing to please both sides in the divisive abortion debate.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat News, and Tami Luhby of CNN.

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Tami Luhby
CNN

@Luhby

Read Tami's stories

Among the takeaways from this week’s episode:

• The odds of a government shutdown over spending levels are rising. While entitlement programs like Medicare would be largely spared, past shutdowns have shown that closing the federal government hobbles things Americans rely on, like food safety inspections and air travel.
• In Congress, the discord isn’t limited to spending bills. A House bill to increase price transparency in health care melted down before a vote this week, demonstrating again how hard it is to take on the hospital industry. Legislation on how pharmacy benefit managers operate is also in disarray, though its projected government savings means it could resurface as part of a spending deal before the end of the year.
• On the Senate side, legislation intended to strengthen primary care is teetering under Bernie Sanders’ stewardship — in large part over questions about how to pay for it. Also, this week Democrats broke Alabama Republican Sen. Tommy Tuberville’s abortion-related blockade of military promotions (kind of), going around him procedurally to confirm the new chair of the Joint Chiefs of Staff.
• And some Republicans are breaking with abortion opponents and mobilizing in support of legislation to renew the United States President’s Emergency Plan for AIDS Relief — including the former president who spearheaded the program, George W. Bush. Meanwhile, polling shows President Joe Biden is struggling to claim credit for the new Medicare drug negotiation program.
• And speaking of past presidents, former President Donald Trump gave NBC an interview over the weekend in which he offered a muddled stance on abortion. Vowing to settle the long, inflamed debate over the procedure — among other things — Trump’s comments were strikingly general election-focused for someone who has yet to win his party’s nomination.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The Washington Post’s “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic,” by Daniel Gilbert.

Alice Miranda Ollstein: Politico’s “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It,” by Adam Cancryn.

Rachel Cohrs: KFF Health News’ “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice,” by Arthur Allen.

Tami Luhby: CNN’s “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some,” by Brenda Goodman.

Also mentioned in this week’s episode:

• The AP’s “Biden’s Medicare Price Negotiation Is Broadly Popular. But He’s Not Getting Much Credit,” by Seung Min Kim and Linley Sanders.
• Roll Call’s “Sanders, Marshall Reach Deal on Health Programs, but Challenges Remain,” by Jessie Hellmann and Lauren Clason.

CLICK TO EXPAND THE TRANSCRIPT

Transcript: Countdown to Shutdown

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Sept. 21, at 9 a.m. because, well, lots of news this week. And as always, news happens fast, and things might well have changed by the time you hear this. So here we go. We are joined today via video conference by Tami Luhby of CNN.

Tami Luhby: Good morning.

Rovner: Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: And Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Let’s get to some of that news. We will begin on Capitol Hill, where I might make a T-shirt from this tweet from Wednesday from longtime congressional reporter Jake Sherman: “I feel like this is not the orderly appropriations process that was promised after the debt ceiling deal passed.” For those of you who might’ve forgotten, many moons ago, actually it was May, Congress managed to avoid defaulting on the national debt, and as part of that debt ceiling deal agreed to a small reduction in annual domestic spending for the fiscal year that starts Oct. 1 (as in nine days from now). But some of the more conservative Republicans in the House want those cuts to go deeper, much deeper, in fact. And now they’re refusing to either vote for spending bills approved by the Republican-led appropriations committee or even for a short-term spending bill that would keep the government open after this year’s funding runs out. So how likely is a shutdown at this point? I would hazard a guess to say pretty likely. And anybody disagree with that?

Ollstein: It’s more likely than it was a week or two ago, for sure. The fact that we’re at the point where the House passing something that they know is dead on arrival in the Senate would be considered a victory for them. And so, if that’s the case, you really have to wonder what the end game is.

Rovner: Yeah, I mean it was notable, I think, that the House couldn’t even pass the rule for the Defense Appropriations Bill, which is the most Republican-backed spending bill, and the House couldn’t get that done. So I mean it does not bode well for the fate of some of these domestic programs that Republicans would, as I say, like to cut a lot deeper. Right?

Cohrs: Democrats are happy, I think, to watch Republicans flail for a while. I think we saw this during the speaker votes. Obviously, a CR [continuing resolution] could pass with wide bipartisan support, but I think there’s a political interest for Democrats going into an election year next year to lean into the idea of the House Republican chaos and blaming them for a shutdown. So I wouldn’t be too optimistic about Democrats billing them out anytime soon.

Rovner: But, bottom line, of course, is that a shutdown is not great for Democrats who support things that the government does. I mean, Tami, you’re watching, what does happen if there’s a shutdown? Not everything shuts down and not all the money stops flowing.

Luhby: No, and the important thing, unlike in the debt ceiling, potentially, was that Social Security will continue, Medicare will continue, but it’ll be very bothersome to a lot of people. There’ll be important things that … potentially chaos at airlines and food safety inspectors. I mean some of them are sometimes considered essential workers, but there’s still issues there. So people will be mad because they can’t go to their national parks potentially. I mean it’s different every time, so it’s a little hard to say exactly what the effects will be and we’ll see also whether this will be a full government shutdown, which will be much more serious than a partial government shutdown, although at this point it doesn’t look like they’re going to get any of the appropriation bills through.

Rovner: I was going to say, yeah, sometimes when they get some of the spending bills done, there’s a partial shutdown because they’ve gotten some of the spending bills done, but I’m pretty sure they’ve gotten zero done now. I think there’s one that managed to pass both the House and the Senate, but basically this would be a full shutdown of everything that’s funded through the appropriations process. Which as Tami points out, the big things are the Smithsonian and the National Zoo close, and national parks close, but also you can’t get an awful lot of government services. Meanwhile, the ill will among House Republicans is apparently rubbing off on other legislation. The House earlier this week was supposed to vote on a relatively noncontroversial package of bills aimed at making hospital insurance and drug prices more transparent, among other things. But even that couldn’t get through. Rachel, what happened to the transparency bill that everybody thought was going to be a slam-dunk?

Cohrs: Well, I don’t think everybody thought it was going to be a slam-dunk given the chaos that we saw, especially in the Democratic Caucus last week, where one out of three chairmen who work on health care in the House endorsed the package, but the other two would not. And they ran into a situation where, with the special rule that they were using to consider the House transparency package, they needed two-thirds vote to pass and they couldn’t get enough Democrats on board to pass it. And I think there were some process concerns from both sides that there was a compromise that came out right after August recess and it hadn’t been socialized properly and they didn’t have their ducks in a row in the Democratic side. But ultimately, I mean, the big picture for me I think was how hard it really is to take on the hospital industry. Because this was the first real effort I think from the House and it melted down before its first vote. That doesn’t mean it’s dead yet, but it was an embarrassment, I think, to everyone who worked on this that they couldn’t get this pretty noncontroversial package through. And when I tried to talk to people about what they actually oppose, it was these tiny little details about a privacy provision or one transparency provision and not with the big idea. It wasn’t ideological necessarily. So I think it was just a reflection on Congress has taken on pharma, they’re working on PBMs this year, but if they really do want to tackle hospital costs, which are a very big part of Medicare spending, it’s going to be a tough road ahead for them.

Rovner: As we like to point out, every single member of Congress has a hospital in their district, and they are quick to let their members of Congress know what they want and how they want them to vote on things. Before we move on, where are we on the PBM legislation? I know there was a whole raft of hearings this week on doing something about PBMs. And my inbox is full of people from both sides. “The PBMs are making drug prices higher.” “No, the PBMs are helping keep drug prices in check.” Where are we with the congressional effort to try and at least figure out what the PBMs do?

Cohrs: Yeah, I think there is still some disarray at this point. I would watch for action in December or whenever we actually have a conversation about government funding because some of these PBM bills do save money, which is the golden ticket in health care because there are a lot of programs that need to be paid for this year. So Congress will continue to debate those over the next couple of weeks, but I think everyone that I talk to is expecting potential passage in a larger package at the end of the year.

Rovner: So speaking of things that need to be paid for, the saga of Sen. Bernie Sanders and the reauthorization of some key primary care programs, including the popular community health center program, continues. When we left off last July, Sen. Sanders, who chairs the Senate Health, Education, Labor & Pensions Committee [HELP], tried to advance a bill to extend and greatly expand primary care programs without negotiating with his ranking Republican on the committee, Louisiana Sen. Bill Cassidy, who had his own bill to renew the programs. Cassidy protested and blocked the bill’s movement and the whole enterprise came to a screeching halt. Last week, Sanders announced he’d negotiated a bipartisan bill, but not with Cassidy, rather with Kansas Republican Roger Marshall, who chairs the relevant subcommittee. Cassidy, however, is still not pleased. Rachel, you’re following this. Sanders has scheduled a markup of the bill for later today. Is it really going to happen?

Cohrs: Well, I think things are on track and the thing to remember about a markup is it passes on a majority. So as long as Sen. Sanders can keep his Democratic members in line and gets Sen. Marshall, then it can pass committee. But I think there are some concerns that other Republicans will share with Sen. Cassidy about how the bill is paid for. There are a lot of ambitious programs to expand workforce training, have debt forgiveness, and address the primary care workforce crisis in a more meaningful way. But the list of pay-fors is a little undisciplined from what I’ve seen, I would say.

Rovner: That’s a good word.

Cohrs: Sen. Sanders is pulling some pay-fors from other committees, which he can’t necessarily do by himself, and they don’t actually have estimates from the Congressional Budget Office for some of the pay-fors that they’re planning to use. They’re just using internal committee math, which I don’t think is going to pass muster with Republicans in the full Senate, even if it gets through committee today. So I think we’ll see some of those concerns flare up. It could get ugly today compared with HELP markups of the past of community health center bills. And there are certainly some concerns about the application of the Hyde Amendment too, and how it would apply to some of this funding as it moves through the appropriations process.

Rovner: That’s the amendment that bans direct government funding of abortion, and there’s always a fight about the Hyde Amendment, which are reauthorizing these health programs. But I mean, we should point out, I mean this is one of the most bipartisanly popular programs, both the community health center program and these programs that basically give federal money to train more primary care doctors, which the country desperately needs. I mean, it’s something that pretty much everybody, or most of Congress, supports, but Cassidy has what, 60 amendments to this bill. I guess he’s really not happy. Cassidy who supports this in general just is unhappy with this process, right?

Cohrs: I think his concern is more that the legislation is half-baked, not that he’s against the idea of it. And Sen. Cassidy did sign on to a more limited House proposal as well, just saying, we need to fund the community health centers, we need to do something. This isn’t ready for prime time. We could see further negotiations, but the time is ticking for this funding to expire.

Rovner: Well, another program whose authorization expires at the end of the month is PEPFAR, the international AIDS/HIV program. It’s being blocked by anti-abortion activists among others, even though it doesn’t have anything to do with the abortion. And this is not just a bipartisan program, it’s a Republican-led program. Former President George W. Bush who signed it into law in 2003, had an op-ed this week pushing for the program in The Washington Post. Alice, you’ve been following this one. Is there any progress on PEPFAR?

Ollstein: Yes and no. There’s not a vote scheduled, there’s not a “Kumbaya” moment, but we are seeing some movement. I call it “Establishment Republican Strike Back.” You have some both on- and off-the-Hill Republicans really mobilizing to say, “Look, we need to reauthorize this program. This is ridiculous.” And they’re going against the anti-abortion groups and their allies on Capitol Hill who say, “No, let’s just extend this program just year by year through appropriations, not a reauthorization.” Which they say would rubber-stamp the Biden administration redirecting money towards abortion, which the Biden administration and everybody else denies is happening. And so we confirmed that Chairman Mike McCaul in the House and Lindsey Graham in the Senate are working with Democrats on some sort of reauthorization bill. It might not be the full five years, it might be three years, we don’t really know yet. But they think that at least a multiyear reauthorization will give the program some stability rather than the one-year funding patch that other House Republicans are mulling. So we’re going to see where this goes; obviously, it’s an interesting test for the influence of these anti-abortion groups on Capitol Hill. And my colleague and I also scooped that former President Bush, who oversaw the creation of this program, is quietly lobbying certain members, having meetings, and so we will see what kind of pull he still has in the party.

Rovner: Well, this was one of his signature achievements, literally. So it’s something that I know that … and we should point out, unlike the spending bills, the appropriation bills, if this doesn’t happen by Oct. 1, nothing stops, it’s just it becomes theoretically unauthorized, like many programs are, and it’s considered not a good sign for the program.

Luhby: One thing I also wanted to just bring up quickly, tangentially related to health care, but also showing how bipartisan programs are not getting the support that they did, is the WIC program, which is food assistance for women, infants and children, needs more money. Actually participation is up, but even before that, the House Republicans wanted to cut the funding for it, and that was going to be a big divide between them and the Senate. And now because participation is up, the Biden administration is actually asking for another $1.4 billion for the program. This is a program that, again, has always had support and has been fully funded, not had to turn people away. And now it’s looking that many women and small children may not be able to get the assistance if Congress isn’t able to actually fund the program fully.

Rovner: Yes, they’re definitely tied in knots. Well, Oct. 1 turns out to be a key date for a lot of health care issues. It’s also the day drugmakers are supposed to notify Medicare whether they will participate in negotiations for the 10 high-cost drugs Medicare has chosen for the first phase of the program that Congress approved last year. But that might all get blocked if a federal judge rules in favor of a suit brought by the U.S. Chamber of Commerce, among others. Rachel, there was a hearing on this last week, where does this lawsuit stand and when do we expect to hear something from the judge?

Cohrs: So the judge didn’t ask any questions of the attorneys, so they were essentially presenting arguments that we’ve already seen previewed in some of the briefing materials. We are expecting some action by Oct. 1, which is when the Chamber had requested a ruling on whether there’s going to be a preliminary injunction, just because drugmakers are supposed to sign paperwork and submit data to CMS by that Oct. 1 date. So I think we are just waiting to see what the ruling might be. Some of the key issues or whether the Chamber actually has standing to file this lawsuit, given it’s not an actual drug manufacturer. And there was some quibbling about what members they listed in the lawsuit. And then I think they only addressed the argument that the negotiation program violated drugmakers’ due process rights, which isn’t the full scope of the lawsuit. It’s not an indicator of success really anywhere else, but it is important because it is the very first test. And if a preliminary injunction is issued, then it brings everything to a halt. So I think it would be very impactful for other drugmakers as well.

Rovner: Nobody told me when I became a health reporter that I was going to have to learn every step of the civil judicial process, and yet here we are. Well, while we are still on the subject of drug prices, a new poll from the AP and the NORC finds that while the public, Republicans and Democrats, still strongly support Medicare being able to negotiate the price of prescription drugs, President [Joe] Biden is getting barely any credit for having accomplished something that Democrats have been pushing for for more than 20 years. Most respondents in the survey either don’t think the plan goes far enough, because, as we point out, it’s only the first 10 drugs, or they don’t realize that he’s the one that helped push it over the finish line. This should have been a huge win and it’s turning out to be a nothing. Is that going to change?

Ollstein: It’s kind of a “Groundhog Day” of the Obamacare experience in which they pass this big, huge reform that people had been fighting for so long, but they’re trying to campaign on it when people aren’t really feeling the effects of it yet. And so when people aren’t really feeling the benefit and they’re hearing, “Oh, we’re lowering your drug prices.” But they’re going to the pharmacy and they’re paying the same very high amount, it’s hard to get a political win from that. The long implementation timeline is against them there. So there are some provisions that kick in more quickly, so we’ll have to see if that makes any kind of difference. I think that’s why you hear them talk a lot about the insulin price cap because that is already in effect, but that hits fewer people than the bigger negotiation will theoretically hit eventually. So it’s tough, and I think it leaves a vacuum where the drug industry and conservatives can fearmonger or raise concerns and say, “This will make drugs inaccessible and they won’t submit new cures for approval.” And all this stuff. And because people aren’t feeling the benefits, but they’re hearing those downsides, yeah, that makes the landscape even tougher for Democrats.

Luhby: This is very much the pattern that the Biden administration has had with a lot of its achievements or successes because it’s also not getting any credit for anything in the economy. The job market is relatively strong still, the economy is relatively strong. Yes, we have high inflation and high prices, even though that’s moderated, prices are still high, and that’s what people are seeing. Gas prices are now up again, which is not good for the administration. But they’re touting their Bidenomics, which also includes lowering drug prices. But generally polling shows, including our CNN polling shows, that people do not think the economy is doing well and they’re not giving Biden any credit for anything.

Cohrs: I think part of the problem is that … it’s different from the Affordable Care Act where it was health care, health care, health care for a very long time. This is lumped into a bill called the Inflation Reduction Act. I think it got lumped in with climate, got looped in with tax. And the media, we did our best, but it was hard to explain everything that was in the bill. And Medicare negotiation is complicated, it’s wonky, and I don’t know that people fully understood everything that was in the Inflation Reduction Act when it passed and they capitulated to Sen. [Joe] Manchin for what he wanted to name it. And so I think some of that got muddled when it first passed and they’re kind of trying to do catch-up work to explain, again, like Alice said, something that hasn’t gone into effect, which is a really tough uphill climb.

Rovner: This has been a continuing frustration for Democrats, which is that actually getting legislation done in Washington always involves some kind of compromise, and it’s always going to be incremental. And the public doesn’t really respond to things that are incremental. It’s like, “Why isn’t it bigger? Why didn’t they do what they promised?” And so the Republicans get more credit for stopping things than the Democrats get for actually passing things. Right. Well, let us turn to abortion. The breaking news today is that the Senate is finally acting to bust the blockade Alabama Republican Sen. Tommy Tuberville has had on military promotion since February to protest a Defense Department policy allowing service people leave to travel to other states for abortions. And Tuberville himself is part of this breakage, right, Alice? And it’s not a full breakage.

Ollstein: Right. And there have also been some interesting interviews that maybe raise questions on how much Tuberville understands the mechanics of what he’s doing because he said in an interview, “Oh, well, the people who were in these jobs before, they’ll just stay in it and it’s fine.” And they had to explain, “Well, statutorily, they can’t after a certain date.” And he seemed surprised by that. And now you’re seeing these attempts to go around his own blockade, and Democrats to go around his blockade. In part, for a while, Democrats were really not wanting to do that, schedule these votes, until he fully relented because they thought that would increase the pressure.

Rovner: They didn’t want to do it nomination by nomination for the big-picture ones because they were afraid that would leave behind the smaller ones.

Ollstein: Exactly. But this is dragging on so long that I think you’re seeing some frustration and desire to do something, even if it’s not fully resolving the standoff.

Rovner: And I’m seeing frustration from other Republicans. Again, the idea of a Republican holding up military promotions for six months is something that was not on my Republican Bingo card five years ago or even two years ago. I’m sure he’s not making a lot of his colleagues very happy with this. So on the Republican presidential campaign trail, abortion continues to be a subject all the candidates are struggling with — all of them, it seems, except former President Donald Trump, who said in an interview with NBC on Sunday that he alone can solve this. Francis, you have the tape.

Donald Trump: We are going to agree to a number of weeks or months or however you want to define it, and both sides are going to come together, and both sides, and this is a big statement, both sides will come together and for the first time in 52 years, you’ll have an issue that we can put behind us.

Rovner: OK. Well, Trump — who actually seemed all over the place about where he is on the issue in a fairly bald attempt to both placate anti-abortion hardliners in the party’s base and those who support abortion rights, whose votes he might need if he wants to win another election — criticized his fellow Republicans, who he called, “inarticulate on the subject.” I imagine that’s not going over very well among all of the other Republican candidates, right?

Ollstein: We have a piece up on this this morning. One, Trump is clearly acting like he has already won the primary, so he is trying to speak to a general audience, as you noted, and go after those votes in the middle that he may need and so he’s pitching this compromise. And we have a piece that the anti-abortion groups are furious about this, but they don’t really know what to do about it because he probably is going to be the nominee and they’re probably going to spend tens of millions to help elect him if he is, even though they’re furious with these comments he’s making. And so it’s a really interesting moment for their influence. Of course, Trump is trying to have it both ways, he also is calling himself the most pro-life president of all time. He is continually taking credit for appointing the justices to the Supreme Court who overturned Roe v. Wade.

Rovner: Which he did.

Ollstein: Exactly.

Rovner: Which is true.

Ollstein: Which he definitely did. But he is not toeing the line anymore that these groups want. These groups want him to endorse some sort of federal ban on abortion and they want him to praise states like Florida that have passed even stricter bans. He is not doing that. And so there’s an interesting dynamic there. And now his primary opponents see this as an opening, they’re trailing him in the polls, and so they’re trying to capitalize on this. [Gov. Ron] DeSantis and a bunch of others came out blasting him for these abortion remarks. But again, he’s acting like he’s already won the primary, he’s brushing it off and ignoring them.

Rovner: I love how confident he is though, that there’s a way to settle this — really, that there is a compromise, it’s just nobody’s been smart enough to get to it.

Ollstein: Well, he also, in the same interview, he said he’ll solve the Ukraine-Russia war in a day. So I mean, I think we should consider it in that context. It was interesting when I talked to all these different anti-abortion groups, they all said the idea of cutting some sort of deal is ludicrous. There is no magic deal that everybody would be happy about. If anything …

Rovner: And those on the other side will say the same thing.

Ollstein: Exactly. How could you watch what’s happened over the past year or 30 years and think that’s remotely possible? However, they did acknowledge that him saying that does appeal to a certain kind of voter, who is like, “Yeah, let’s just compromise. Let’s just get past this. I’m sick of all the fighting.” So it’s another interesting tension.

Rovner: Yeah. And I love how Trump always says the quiet part out loud, which is that this is not a great issue for Republicans and they’re not talking about it right. It’s like Republicans know this is a not-great issue for Republicans, but they don’t usually say that in an interview on national television. That is Trump, and this will continue. Well, finally this week I wanted to talk about what I am calling the dark underbelly of the new weight loss drugs. This is my extra credit this week. It’s a Washington Post story by Daniel Gilbert called “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic.” It’s about the huge swell of sometimes not-so-legitimate websites and wellness spas selling unapproved formulations of semaglutide and tirzepatide — better known by their brand names Ozempic, Wegovy, and Mounjaro — to unsuspecting consumers because the demand for these diabetes drugs is so high for people who want to lose weight. The FDA has declared semaglutide at least to be in shortage for the people it was originally approved for, those with Type 2 diabetes. But that designation legally allows compounding pharmacies to manufacture their own versions, at least in some cases, except to quote the piece, “Since then, a parallel marketplace with no modern precedent has sprung up attracting both licensed medical professionals and entrepreneurs with histories ranging from regulatory violations to armed robbery.” Meanwhile, and this is coming from a separate story, both Eli Lilly and Novo Nordisk, the manufacturers of the approved versions of the drugs, are suing companies they say are selling unapproved versions of their drug, including, in some cases, drugs that actually pretend to be the brand name drug that aren’t. This is becoming really a big messy buyer-beware market, right? Rachel, you guys have written about this.

Cohrs: It has. Yeah, my colleagues have done great coverage, including I think the lawsuit by manufacturers of these drugs who are seeing their profits slipping through their fingers as patients are turning to these alternatives that aren’t necessarily approved by the FDA. And I think there are also risks because we have seen some side effects from these medications; they range from some very serious GI symptoms to strange dreams. There’s just a whole lot going on there. And I think it is concerning that some patients are getting ahold of these medications, which are expensive if you’re buying them the traditional way. And again, for weight loss, I think some of these medications are still off-label, they’re not FDA-approved. So if they’re getting these without any supervision from a medical provider or somebody who they can ask when they have questions that come up and are monitoring for some of these other side effects, then I think it is a very dangerous game for these patients. And I think it’s just a symptom of this outpouring of interest and the regulators’, I think, failure to keep up with it. And there’s also some supply concerns. So I think it’s just this perfect storm of desperation from patients and the bureaucracy struggling to keep up.

Rovner: Yeah. One of the reasons I chose the story is I really feel like this is unprecedented. I mean, I suppose it could have been predicted because these drugs do seem to be very good at what they do and they are very expensive and very hard to get, so not such a surprise that not-so-honest people might spring up to try and fill the void. But it’s still a little bit scary to see people selling heaven only knows what to people who are very anxious to take things.

Luhby: And in related news, there are more doctors who are interested in obesity medicine now, so everyone is trying to cash in.

Rovner: Yeah, I mean, eventually I imagine this will sort itself out. It’s just that at the beginning when it’s so popular, although I will still … I keep thinking this, is the solution to really throw this much money at it or to try to figure out how to make these drugs cheaper? If it’s going to be such a societal good, maybe we should do something about the price. Anyway, that is my extra credit in this week’s news. Now we will take a quick break and then we’ll come back with the rest of our extra credits.

Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.

OK, we are back and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it; we will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Tami, why don’t you go first this week?

Luhby: Sure. Well, this week I chose a good story by one of my colleagues, Brenda Goodman. It’s titled “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some.” And we’ve all been hearing this, I heard this from a friend of mine who’s a doctor, we know Cynthia Cox at KFF tweeted about this. And that even though the new vaccines are ready and the Biden administration has been pushing people to go get them, and many people are eager to get them, they’re not so easy to get. Either because drugstores are running out, that’s what happened to my friend. She went in and said there just wasn’t any supply available. Or for some other people, they’re supposed to be free for most Americans, but the insurance companies haven’t caught up with that yet. So they go in and either they’re denied or the pharmacy tells them that they have to pay potentially $200 for the vaccines. So the problem here is that there’s already an issue with getting vaccines and people getting vaccinated in this country and then putting up extra hurdles for them will only cause more problems and cause fewer people to get vaccinated because some people may not come back.

Rovner: Talk about something that should have been predictable. The distributors knew it was going to be available and pretty much when, and the insurance companies knew it was going to be available and pretty much when, and yet somehow they seem to have not gotten their act together when the predictable surge of people wanting to get the vaccine early came about. Alice, you wanted to add something?

Ollstein: Just anecdotally, the supply and the demand are completely out of whack. My partner is back home in Alabama right now and he was at a pharmacy where they were just wandering around asking random people, “Will you take the shot? Will you take the shot?” And a bunch of people were saying, “No.” And meanwhile, here in D.C., myself and everyone I know is just calling around wanting to get it and not able to. And so you think we’d have figured this out better after so many years of this.

Rovner: Well, I have an appointment for tomorrow. We’ll see if it happens. Rachel, why don’t you go next?

Cohrs: Sure. I chose a KFF Health News story by Arthur Allen, and the headline is “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice.” And I just love a story where it’s off the news cycle a little bit and we see this big splashy announcement. And I think Arthur did a great job of following up here and seeing what actually was happening with formulary placement for Humira and the new biosimilars that just came on the market.

Rovner: Yep. Remind us what Humira is?

Cohrs: Oh, yeah. So it’s one of the most profitable drugs ever. The company that makes it, AbbVie, had created this big patent thicket to try to prevent it from competition for a very long time, but this year saw competition that had been on the market in Europe finally come online in the U.S. So again, a big change for AbbVie, for the market. But I think there was concern about whether people would actually switch to these new medications that have lower prices. But again, as it gets caught up and spit out of our drug supply chain, there are a whole lot of incentives that don’t necessarily result in the cheaper medication being prescribed. And Arthur found that Express Scripts and Optum, which are two of the three biggest pharmacy benefit managers, have the biosimilar versions of Humira at the same price as Humira. So that doesn’t really create a lot of incentive for people to switch. So I think it was just great follow-up reporting and we don’t really have a lot of visibility into these formularies sometimes. So I think it was a illuminating piece.

Rovner: Yeah. And the mess that is drug pricing. Alice.

Ollstein: So I also chose a great piece by my colleague Adam Cancryn and it’s called “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It.” It’s part of a series we’re doing on anti-vax sentiment and its impacts. And this is just going into how the Biden administration really doesn’t have a plan for combating this, even as it’s posing a bigger and bigger public health threat. And some of their attempts to go after misinformation online were stymied in court and they also are struggling with not wanting to elevate it by debunking it — that that age-old tension of, is it better to just ignore it or is it better to combat it directly? A lot of this is also tying into RFK Jr.’s presidential bid and how much to acknowledge that or not. But the impact is that they’re not really taking this on, even as it’s getting worse and worse in the country.

Rovner: And I got a bunch of emails this week about the anti-vax movement spreading to pets — that people are now resisting getting their dogs and cats vaccinated. Seriously. I mean, it is a serious problem. Obviously, if people stop getting rabies vaccines, that could be a big deal. So something else to watch. All right. Well, I already did my extra credit. So that is it for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our indefatigable engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me; I’m still @jrovner on X and on Bluesky. Tami?

Luhby: You can tweet me at @Luhby. I sometimes check it still.

Rovner: Rachel.

Cohrs: I’m on X @rachelcohrs.

Rovner: Alice.

Ollstein: I’m @AliceOllstein.

Rovner: We will be back in your feed next week. Until then, be healthy.

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