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

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

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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.

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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.

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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Sarah Karlin-Smith
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Sandhya Raman
CQ Roll Call

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Rachel Roubein
The Washington Post

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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.

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Alice Miranda Ollstein
Politico

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Rachel Cohrs
Stat News

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Tami Luhby
CNN

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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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But it isn’t here yet. Makers of biosimilars must still work within a health care system in which basic economics rarely seems to hold sway.

For real competition to take hold, the big pharmacy benefit managers, or PBMs, the companies that negotiate prices and set the prescription drug menu for 80% of insured patients in the United States, would have to position the new drugs favorably in health plans.

They haven’t, though the logic for doing so seems plain.

Humira has enjoyed high-priced U.S. exclusivity for 20 years. Its challengers could save the health care system $9 billion and herald savings from the whole class of drugs called biosimilars — a windfall akin to the hundreds of billions saved each year through the purchase of generic drugs.

The biosimilars work the same way as Humira, an injectable treatment for rheumatoid arthritis and other autoimmune diseases. And countries such as the United Kingdom, Denmark, and Poland have moved more than 90% of their Humira patients to the rival drugs since they launched in Europe in 2018. Kaiser Permanente, which oversees medical care for 12 million people in eight U.S. states, switched most of its patients to a biosimilar in February and expects to save $300 million this year alone.

Biologics — both the brand-name drugs and their imitators, or biosimilars — are made with living cells, such as yeast or bacteria. With dozens of biologics nearing the end of their patent protection in the next two decades, biosimilars could generate much higher savings than generics, said Paul Holmes, a partner at Williams Barber Morel who works with self-insured health plans. That’s because biologics are much more expensive than pills and other formulations made through simpler chemical processes.

For example, after the first generics for the blockbuster anti-reflux drug Nexium hit the market in 2015, they cost around $10 a month, compared with Nexium’s $100 price tag. Coherus BioSciences launched its Humira biosimilar, Yusimry, in July at $995 per two-syringe carton, compared with Humira’s $6,600 list price for a nearly identical product.

“The percentage savings might be similar, but the total dollar savings are much bigger,” Holmes said, “as long as the plan sponsors, the employers, realize the opportunity.”

That’s a big if.

While a manufacturer may need to spend a few million dollars to get a generic pill ready to market, makers of biosimilars say their development can require up to eight years and $200 million. The business won’t work unless they gain significant market share, they say.

The biggest hitch seems to be the PBMs. Express Scripts and Optum Rx, two of the three giant PBMs, have put biosimilars on their formularies, but at the same price as Humira. That gives doctors and patients little incentive to switch. So Humira remains dominant for now.

“We’re not seeing a lot of takeup of the biosimilar,” said Keith Athow, pharmacy director for Tennessee’s group insurance program, which covers 292,000 state and local employees and their dependents.

The ongoing saga of Humira — its peculiar appeal to drug middlemen and insurers, the patients who’ve benefited, the patients who’ve suffered as its list price jumped sixfold since 2003 — exemplifies the convoluted U.S. health care system, whose prescription drug coverage can be spotty and expenditures far more unequal than in other advanced economies.

Biologics like Humira occupy a growing share of U.S. health care spending, with their costs increasing 12.5% annually over the past five years. The drugs are increasingly important in treating cancers and autoimmune diseases, such as rheumatoid arthritis and inflammatory bowel disease, that afflict about 1 in 10 Americans.

Humira’s $200 billion in global sales make it the best-selling drug in history. Its manufacturer, AbbVie, has aggressively defended the drug, filing more than 240 patents and deploying legal threats and tweaks to the product to keep patent protections and competitors at bay.

The company’s fight for Humira didn’t stop when the biosimilars finally appeared. The drugmaker has told investors it doesn’t expect to lose much market share through 2024. “We are competing very effectively with the various biosimilar offerings,” AbbVie CEO Richard Gonzalez said during an earnings call.

How AbbVie Maintains Market Share

One of AbbVie’s strategies was to warn health plans that if they recommended biosimilars over Humira they would lose rebates on purchases of Skyrizi and Rinvoq, two drugs with no generic imitators that are each listed at about $120,000 a year, according to PBM officials. In other words, dropping one AbbVie drug would lead to higher costs for others.

Industry sources also say the PBMs persuaded AbbVie to increase its Humira rebates — the end-of-the-year payments, based on total use of the drug, which are mostly passed along by the PBMs to the health plan sponsors. Although rebate numbers are kept secret and vary widely, some reportedly jumped this year by 40% to 60% of the drug’s list price.

The leading PBMs — Express Scripts, Optum, and CVS Caremark — are powerful players, each part of a giant health conglomerate that includes a leading insurer, specialty pharmacies, doctors’ offices, and other businesses, some of them based overseas for tax advantages.

Yet challenges to PBM practices are mounting. The Federal Trade Commission began a major probe of the companies last year. Kroger canceled its pharmacy contract with Express Scripts last fall, saying it had no bargaining power in the arrangement, and, on Aug. 17, the insurer Blue Shield of California announced it was severing most of its business with CVS Caremark for similar reasons.

Critics of the top PBMs see the Humira biosimilars as a potential turning point for the secretive business processes that have contributed to stunningly high drug prices.

Although list prices for Humira are many times higher than those of the new biosimilars, discounts and rebates offered by AbbVie make its drug more competitive. But even if health plans were paying only, say, half of the net amount they pay for Humira now — and if several biosimilar makers charged as little as a sixth of the gross price — the costs could fall by around $30,000 a year per patient, said Greg Baker, CEO of AffirmedRx, a smaller PBM that is challenging the big companies.

Multiplied by the 313,000 patients currently prescribed Humira, that comes to about $9 billion in annual savings — a not inconsequential 1.4% of total national spending on pharmaceuticals in 2022.

The launch of the biosimilar Yusimry, which is being sold through Mark Cuban’s Cost Plus Drugs pharmacy and elsewhere, “should send off alarms to the employers,” said Juliana Reed, executive director of the Biosimilars Forum, an industry group. “They are going to ask, ‘Time out, why are you charging me 85% more, Mr. PBM, than what Mark Cuban is offering? What is going on in this system?’”

Cheaper drugs could make it easier for patients to pay for their drugs and presumably make them healthier. A KFF survey in 2022 found that nearly a fifth of adults reported not filling a prescription because of the cost. Reports of Humira patients quitting the drug for its cost are rife.

Convenience, Inertia, and Fear

When Sue Lee of suburban Louisville, Kentucky, retired as an insurance claims reviewer and went on Medicare in 2017, she learned that her monthly copay for Humira, which she took to treat painful plaque psoriasis, was rising from $60 to $8,000 a year.

It was a particularly bitter experience for Lee, now 81, because AbbVie had paid her for the previous three years to proselytize for the drug by chatting up dermatology nurses at fancy AbbVie-sponsored dinners. Casting about for a way to stay on the drug, Lee asked the company for help, but her income at the time was too high to qualify her for its assistance program.

“They were done with me,” she said. Lee went off the drug, and within a few weeks the psoriasis came back with a vengeance. Sores covered her calves, torso, and even the tips of her ears. Months later she got relief by entering a clinical trial for another drug.

Health plans are motivated to keep Humira as a preferred choice out of convenience, inertia, and fear. While such data is secret, one Midwestern firm with 2,500 employees told KFF Health News that AbbVie had effectively lowered Humira’s net cost to the company by 40% after July 1, the day most of the biosimilars launched.

One of the top three PBMs, CVS Caremark, announced in August that it was creating a partnership with drugmaker Sandoz to market its own cut-rate version of Humira, called Hyrimoz, in 2024. But Caremark didn’t appear to be fully embracing even its own biosimilar. Officials from the PBM notified customers that Hyrimoz will be on the same tier as Humira to “maximize rebates” from AbbVie, Tennessee’s Athow said.

Most of the rebates are passed along to health plans, the PBMs say. But if the state of Tennessee received a check for, say, $20 million at the end of last year, it was merely getting back some of the $48 million it already spent.

“It’s a devil’s bargain,” said Michael Thompson, president and CEO of the National Alliance of Healthcare Purchaser Coalitions. “The happiest day of a benefit executive’s year is walking into the CFO’s office with a several-million-dollar check and saying, ‘Look what I got you!’”

Executives from the leading PBMs have said their clients prefer high-priced, high-rebate drugs, but that’s not the whole story. Some of the fees and other payments that PBMs, distributors, consultants, and wholesalers earn are calculated based on a drug’s price, which gives them equally misplaced incentives, said Antonio Ciaccia, CEO of 46Brooklyn, a nonprofit that researches the drug supply chain.

“The large intermediaries are wedded to inflated sticker prices,” said Ciaccia.

AbbVie has warned some PBMs that if Humira isn’t offered on the same tier as biosimilars it will stop paying rebates for the drug, according to Alex Jung, a forensic accountant who consults with the Midwest Business Group on Health.

AbbVie did not respond to requests for comment.

One of the low-cost Humira biosimilars, Organon’s Hadlima, has made it onto several formularies, the ranked lists of drugs that health plans offer patients, since launching in February, but “access alone does not guarantee success” and doesn’t mean patients will get the product, Kevin Ali, Organon’s CEO, said in an earnings call in August.

If the biosimilars are priced no lower than Humira on health plan formularies, rheumatologists will lack an incentive to prescribe them. When PBMs put drugs on the same “tier” on a formulary, the patient’s copay is generally the same.

In an emailed statement, Optum Rx said that by adding several biosimilars to its formularies at the same price as Humira, “we are fostering competition while ensuring the broadest possible choice and access for those we serve.”

Switching a patient involves administrative costs for the patient, health plan, pharmacy, and doctor, said Marcus Snow, chair of the American College of Rheumatology’s Committee on Rheumatologic Care.

Doctors’ Inertia Is Powerful

Doctors seem reluctant to move patients off Humira. After years of struggling with insurance, the biggest concern of the patient and the rheumatologist, Snow said, is “forced switching by the insurer. If the patient is doing well, any change is concerning to them.” Still, the American College of Rheumatology recently distributed a video informing patients of the availability of biosimilars, and “the data is there that there’s virtually no difference,” Snow said. “We know the cost of health care is exploding. But at the same time, my job is to make my patient better. That trumps everything.”

“All things being equal, I like to keep the patient on the same drug,” said Madelaine Feldman, a New Orleans rheumatologist.

Gastrointestinal specialists, who often prescribe Humira for inflammatory bowel disease, seem similarly conflicted. American Gastroenterological Association spokesperson Rachel Shubert said the group’s policy guidance “opposes nonmedical switching” by an insurer, unless the decision is shared by provider and patient. But Siddharth Singh, chair of the group’s clinical guidelines committee, said he would not hesitate to switch a new patient to a biosimilar, although “these decisions are largely insurance-driven.”

HealthTrust, a company that procures drugs for about 2 million people, has had only five patients switch from Humira this year, said Cora Opsahl, director of the Service Employees International Union’s 32BJ Health Fund, a New York state plan that procures drugs through HealthTrust.

But the biosimilar companies hope to slowly gain market footholds. Companies like Coherus will have a niche and “they might be on the front end of a wave,” said Ciaccia, given employers’ growing demands for change in the system.

The $2,000 out-of-pocket cap on Medicare drug spending that goes into effect in 2025 under the Inflation Reduction Act could spur more interest in biosimilars. With insurers on the hook for more of a drug’s cost, they should be looking for cheaper options.

For Kaiser Permanente, the move to biosimilars was obvious once the company determined they were safe and effective, said Mary Beth Lang, KP’s chief pharmacy officer. The first Humira biosimilar, Amjevita, was 55% cheaper than the original drug, and she indicated that KP was paying even less since more drastically discounted biosimilars launched. Switched patients pay less for their medication than before, she said, and very few have tried to get back on Humira.

Prescryptive, a small PBM that promises transparent policies, switched 100% of its patients after most of the other biosimilars entered the market July 1 “with absolutely no interruption of therapy, no complaints, and no changes,” said Rich Lieblich, the company’s vice president for clinical services and industry relations.

AbbVie declined to respond to him with a competitive price, he said.

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

Emmarie Huetteman
KFF Health News

Emmarie Huetteman, associate Washington editor, previously spent more than a decade reporting on the federal government, most recently covering surprise medical bills, drug pricing reform, and other health policy debates in Washington and on the campaign trail.

The annual U.S. Census Bureau report this week revealed a drop in the uninsured rate last year as more working-age people obtained employer coverage. However, this year’s end of pandemic-era protections — which allowed many people to stay on Medicaid — is likely to have changed that picture quite a bit since. Meanwhile, reports show even many of those with insurance continue to struggle to afford their health care costs, and some providers are encouraging patients to take out loans that tack interest onto their medical debt.

Also, a mystery is unfolding in the federal budget: Why has recent Medicare spending per beneficiary leveled off? And the CDC recommends anyone who isat least 6 months old get the new covid booster.

This week’s panelists are Emmarie Huetteman of KFF Health News, Margot Sanger-Katz of The New York Times, Sarah Karlin-Smith of the Pink Sheet, and Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

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Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Margot Sanger-Katz
The New York Times

@sangerkatz

Read Margot's stories

Among the takeaways from this week’s episode:

• The Census Bureau reported this week that the uninsured rate dropped to 10.8% in 2022, down from 11.6% in 2021, driven largely by a rise in employer-sponsored coverage. Since then, pandemic-era coverage protections have lapsed, though it remains to be seen exactly how many people could lose Medicaid coverage and stay uninsured.
• A concerning number of people who have insurance nonetheless struggle to afford their out-of-pocket costs. Medical debt is a common, escalating problem, exacerbated now as hospitals and other providers direct patients toward bank loans, credit cards, and other options that also saddle them with interest.
• Some state officials are worried that people who lose their Medicaid coverage could choose short-term health insurance plans with limited benefits — so-called junk plans — and find themselves owing more than they’d expect for future care.
• Meanwhile, a mystery is unfolding in the federal budget: After decades of warnings about runaway government spending, why has spending per Medicare beneficiary defied predictions and leveled off? At the same time, private insurance costs are increasing, with employer-sponsored plans expecting their largest increase in more than a decade.
• And the push for people to get the new covid booster is seeking to enshrine it in Americans’ annual preventive care regimen.

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

Emmarie Huetteman: KFF Health News’ “The Shrinking Number of Primary Care Physicians Is Reaching a Tipping Point,” by Elisabeth Rosenthal.

Sarah Karlin-Smith: MedPage Today’s “Rural Hospital Turns to GoFundMe to Stay Afloat,” by Kristina Fiore.

Joanne Kenen: ProPublica’s “How Columbia Ignored Women, Undermined Prosecutors and Protected a Predator for More Than 20 Years,” by Bianca Fortis and Laura Beil.

Margot Sanger-Katz: Congressional Budget Office’s “Raising the Excise Tax on Cigarettes: Effects on Health and the Federal Budget.”

Also mentioned in this week’s episode:

• U.S. Census Bureau’s “Health Insurance Coverage of U.S. Workers Increased in 2022,” by Rachel Lindstrom, Katherine Keisler-Starkey, and Lisa Bunch.
• The Commonwealth Fund’s “Can Older Adults with Employer Coverage Afford Their Health Care?” by Lauren A. Haynes and Sara R. Collins.
• KFF Health News’ “What One Lending Company’s Hospital Contracts Reveal About Financing Patient Debt,” by Noam N. Levey.
• The New York Times’ “A Huge Threat to the U.S. Budget Has Receded. And No One Is Sure Why,” by Margot Sanger-Katz, Alicia Parlapiano, and Josh Katz.
• The Wall Street Journal’s “Health-Insurance Costs Are Taking Biggest Jumps in Years,” by Anna Wilde Mathews.
• The New York Times’ “The N.Y.C. Neighborhood That’s Getting Even Thinner on Ozempic,” by Joseph Goldstein.

click to open the transcript

Transcript: Underinsured Is the New Uninsured

KFF Health News’ ‘What the Health?’

Episode Title: Underinsured Is the New Uninsured

Episode Number: 314

Published: Sept. 14, 2023

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

Emmarie Huetteman: Hello and welcome back to “What the Health?” I’m Emmarie Huetteman, a Washington editor for KFF Health News. I’m filling in for Julie [Rovner] this week, who’s on vacation. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Sept. 14, at 11 a.m. As always, news happens fast, and things might have changed by the time you hear this. So, here we go. We’re joined today by video conference by Margot Sanger-Katz of The New York Times.

Margot Sanger-Katz: Good morning, everybody.

Huetteman: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi there.

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

Joanne Kenen: Hi, everybody.

Huetteman: No interview this week, so let’s get right to the news. The percentage of working-age adults with health insurance went up last year, according to the annual Census report out this week. As a result, the uninsured rate dropped to 10.8% in 2022. But lower uninsured rates may be obscuring another problem: the number of people who are underinsured and facing high out-of-pocket costs. The Commonwealth Fund released a report last month on how difficult it is for many older adults with employer coverage to afford care. And recent reporting here at KFF Health News has probed how medical providers are steering patients toward bank loans and credit cards that saddled them with interest on top of their medical debt. So, the number of people without insurance is dropping. But that doesn’t mean that health care is becoming more affordable. So what does it mean to be underinsured? Are the policy conversations that focus on the uninsured rate missing the mark?

Sanger-Katz: So, two things I would say. One is that I even think that the Census report on what’s happening with the uninsured is obscuring a different issue, which is that there’s been this artificial increase in the number of people who are enrolled in Medicaid as a result of this pandemic policy. So the Congress said to the states, if you want to get extra money for your Medicaid program through the public health emergency, then you can’t kick anyone out of Medicaid regardless of whether they are no longer eligible for the program. And that provision expired this spring. And so this is one of the big stories in health policy that’s happening this year. States are trying to figure out how to reevaluate all of these people who have been in their Medicaid program for all these years and determine who’s eligible and who’s not eligible. And there’s been quite a lot of very good reporting on what’s going on. And I think there’s a combination of people who are losing their Medicaid coverage because they really genuinely are no longer eligible for Medicaid. And there also appears to be quite a large number of people who are losing their Medicaid coverage for administrative hiccup reasons — because there’s some paperwork error, or because they moved and they didn’t get a letter, or some other glitch in the system. And so when I looked at these numbers on the uninsured rate, in some ways what it told us is we gave a whole bunch of people insurance through these public programs during the pandemic and that depressed the uninsured rate. But we know right now that millions of people have lost insurance, even in the last few months, with more to come later this year. And so I’m very interested in the next installment of the Census report when we get back to more or less a normal Medicaid system, how many people will be without insurance. So that’s just one thing. And then just to get to your question, I think having insurance does not always mean that you can actually afford to pay for the health care that you need. We’ve seen over the last few decades a shift towards higher-deductible health care plans where people have to pay more money out-of-pocket before their insurance kicks in. We’ve also seen other kinds of cost sharing increase, where people have to pay higher copayments or a percentage of the cost of their care. And we’ve also seen, particularly in the Obamacare exchanges, but also in the employer market, that there’s a lot of insurance that doesn’t include any kind of out-of-network benefit. So it means, you know, if you can go to a provider who is covered by your insurance, your insurance will pay for it. But if you can’t find someone who’s covered by your insurance, you could still get hit with a big bill. The sort of surprise bills of old are banned. But, you know, the doctor can tell you in advance, and you can go and get all these medical services and then end up with some big bills. So whether or not just having an insurance card is really enough to ensure that people have access to health care remains an open question. And I think we have seen a lot of evidence over recent years that even people with insurance encounter a lot of financial difficulties when they get sick and often incur quite a lot of debt despite having insurance that protects them from the unlimited costs that they might face if they were uninsured.

Huetteman: Joanne.

Kenen: I would say two big things. The uninsurance rate, which we all think is going to go up because of this Medicaid unwinding, it’s worth stopping and thinking about. It’s what? 7.9[%]? Was that the number?

Huetteman: It was 10.8, was the uninsured rate last year.

Sanger-Katz: It depends if you look at any time of the year or all of the year.

Kenen: Back when the ACA [Affordable Care Act] was passed, it was closer to something like 18. So in terms of really changing the magnitude of the uninsurance problem in America, the work isn’t done. But this is a really significant change. Secondly, some aspects of care are better — or within reach because the ACA made so many preventive and primary care services free. That, too, is a gain. Obviously, through the medical debt, which KFF [Health News] now has done a great job — oh, and believe me, and other reporters, you’ve done an amazing job, story after story. You know, the “Bill of the Month” series that you edited, it’s … but they’re not isolated cases. It’s not like, oh, this person ran into this, you know, cost buzz saw. There’s insane pricing issues! And out-of-pocket and, you know, deductibles and extras, and incredibly hard to sort out even if you are a sophisticated, insured consumer of health care. Pricing is a mess. There have been changes to the health care market, in terms of consolidation of ownership, more private equity, bigger entities that just have created … added a new dimension to this problem. So have we made gains? We’ve made really important gains. Under the original ACA passed under the Obama administration and the changes, the access and generosity of subsidy changes that the Biden administration has made, even though they’re time-limited, they have to be renewed. But, you know, are people still being completely hit over the head and every other body part by really expensive costs? Yes. That is still a heartbreaking and really serious problem. I mean, I can just give one tiny incident where somebody … I needed a routine imaging thing in network. The doctor in that hospital wasn’t reachable. I had my primary care person send in the order because she’s not part of that health care system. She’s in network. The imaging center is in network. The doctor who told me I needed this test is in network. But because the actual order came from somebody not in their hospital and in … on the Maryland side of the line, instead of the D.C. side of the line, the hospital imaging center decided it was going to be out of network. And because she’s not ours and wanted to charge me an insane amount of money. I sorted it out. But it took me an insane amount of time and I shouldn’t have needed to do that.

Huetteman: Yeah, that’s absolutely true.

Kenen: I could have paid it, if I had to.

Huetteman: Absolutely. And as you noted, I do edit the “Bill of the Month” series. And we see that with all kinds of patients, even the most enterprising patients can’t get an answer to simple questions like, is this in network or out of network? Why did I get this bill? And it’s asking way too much of most people to try and fit that into the rest of the things that they do every day. You know, Margot brought up the Medicaid unwinding. Well, let’s speaking of insurance, let’s catch up there for a moment because there was a little news this week. We’re keeping an eye on those efforts to strip ineligible beneficiaries from state Medicaid rolls since the covid-19 public health emergency ended. Now, some state officials are worried that people who lose coverage could opt to replace it with short-term insurance plans. You might know them as “junk plans.” They often come with lower price tags, but these short-term plans do not have to follow the Affordable Care Act’s rules about what to cover. And people in the plans have found themselves owing for care they thought would be covered. The Trump administration expanded these plans, but this summer the Biden administration proposed limiting them once more. Remind us: What changes has Biden proposed for so-called junk plans and for people who lose their coverage during the Medicaid unwinding? What other options are available to them?

Sanger-Katz: So the Biden administration’s proposal was to basically return these short-term plans to actual short-term coverage, which is what they were designed to do. Part of what the Trump administration did is they kept this category of short-term plans. But then they said basically, well, you can just keep them for several years. And so they really became a more affordable but less comprehensive substitute for ACA-compliant insurance. So the Biden administration just wants to kind of squish ’em back down and say, OK, you can have them for like a couple of months, but you can’t keep them forever. I will say that a lot of people who are losing their Medicaid coverage as a result of the unwinding are probably pretty low on the income scale, just as a result of them having qualified for Medicaid in the first place. And so a very large share of them are eligible for free or close-to-free health plans on the Obamacare exchanges. Those enhanced subsidies that Joanne mentioned, they’re temporary, but they’re there for a few years. They really make a big difference for exactly this population that’s losing Medicaid coverage. If you’re just over the poverty line, you can often get a free plan that’s a — this is very technical, but — it’s a silver plan with these cost-sharing wraparound benefits. And so you end up with a plan where you really don’t have to pay very much at the point of care. You don’t have to pay anything in a premium. So I think, in general, that is the most obvious answer for most of these people who are losing their Medicaid. But I think it is a challenge to navigate that system, for states to help steer people towards these other options, and for them to get enrolled in a timely way. Because, of course, Obamacare markets are not open all the time. They’re open during an open enrollment period or for a short period after you lose another type of coverage.

Huetteman: Absolutely. And a lot of these states actually have efforts that are normally focused on open enrollment right now. And some officials say that they are redirecting those efforts toward helping these folks who are losing their Medicaid coverage to find the options, like those exchange plans that are available for zero-dollar premiums or low premiums under the subsidies available.

Kenen: I have seen some online ads from HHS [the Department of Health and Human Services], saying, you know, “Did you lose your Medicaid?” and it’s state-specific — “Did you lose your Medicaid in Virginia?” I don’t live in Virginia, so I’m not sure why I’m getting it. My phone is telling me the Virginia one. But there is an HHS [ad], and it is saying if you lost your Medicaid, go to healthcare.gov, we can help. You know, we may be able to help you. So they are outreaching, although I’m afraid that somebody who actually lost it in Virginia might be getting an ad about Nebraska or whatever. I live close to Virginia. It’s close enough. But there is some effort to reach people in a plain English, accessible pop-up on your phone, or your web browser, kind of way. So I have seen that over the last few weeks because the special enrollment period, I mean, most people who are no longer eligible for Medicaid are eligible for something, and something other than a junk plan. Some of them have insurance at work now because the job market is better than it was in 2020, obviously. Many people will be eligible for these highly subsidized plans that Margot just talked about. Very few people should be left out in the cold, but there’s a lot of work to be done to make those connections.

Huetteman: Absolutely. Absolutely. And going back to the Census report for a second, it had noted that a big part of the increase in coverage came from employer-sponsored coverage among working-age adults, although we have, of course, seen those reports that say … and then they try to afford their health care costs. And it’s really difficult for a lot of them, even when they have that insurance, as we talked about. All right. So let’s move on. The New York Times is reporting a mystery unfolding in the federal budget. And I’d like to call it “The Case of Flat Medicare Spending.” After decades of warnings about runaway government spending, a recent Times analysis shows that spending per Medicare beneficiary has actually leveled off over more than a decade. Meanwhile, The Wall Street Journal reports that private health insurance costs are climbing. Next year, employer-sponsored plans could see their biggest cost increase in more than a decade, and that trend could continue. So what’s going on with insurance costs? Let’s start with Medicare. Margot, you were the lead reporter on the Times analysis. What explains this Medicare spending slowdown?

Sanger-Katz: So part of the reason why I have found it to be a somewhat enjoyable story is that I think there is a bit of a mystery. I talked to lots of people who have studied and written about this phenomenon over the years, and I think there was no one I talked to who said “I 100% understand what is going on here. And I can tell you, here’s the thing.” But there are a bunch of factors that I think a lot of people think are contributing, and I’ll just run through them quickly. One of them is Medicare is getting a little younger. The baby boomers are retiring generally, like, 65-year-olds are a little cheaper to take care of than 85-year-olds. So as the age mix gets younger, we’ve seen the average cost of taking care of someone in Medicare get a little smaller. That’s like the easiest one. I think another one is that Obamacare and other legislative changes that Congress has passed during this period have just mechanically reduced the amount of money that Medicare is spending. So the two most obvious ways are, in the Affordable Care Act, Congress took money away from Medicare Advantage plans, paid them a smaller premium for taking care of patients, and they also reduced the amount that hospitals get every year, as what’s called a productivity adjustment. So hospitals get a little raise on their pay rates every year. And the legislation tamped that down. There was also, some listeners may remember, the budget sequester that happened in 2011, 2012, where there was kind of a haircut that Medicare had to take across the board. So there have been these kind of legislative changes. They explain like a little bit of what is going on. And now I think the rest of it really has to do with the health care system itself. And part of that seems to be that this has been a period of relatively limited technological improvement. So, you know, for years medicine just kept getting better and better. We had these miracle cures, we had these amazing surgeries. We, you know, especially like in the area of cardiovascular disease, just enormous advances in recent decades where, you know, first bypass surgery and then stents and then, you know, drugs that could prevent heart attacks. And so I think, you know, health care spending kept climbing and climbing in part because there was better stuff to spend it on. It was expensive, but it really improved people’s health. And in recent years, there’s just been a little less of that. There have clearly been medical advances, particularly in the pharmaceutical space. You know, we have better treatments for cancer, for certain types of cancers, than we had before and for other important diseases. But these expensive innovations tend to affect smaller percentages of people. We haven’t had a lot of really big blockbusters that everyone in Medicare is taking. And so that seems to explain some of the slowdown. And then I think the last piece is, like, kind of the piece that’s the hardest to really explain or pin down, but it seems like there’s just something different that doctors and hospitals are doing. They’re getting more efficient. They’re not always buying the latest and greatest thing, if there’s not evidence to support it. They’re reducing their medical errors. And, you know, I think Obamacare probably gets a share of the credit here. It really created a lot of changes in the way we pay for medical care and in the Medicare program itself. And it created this innovation center that’s supposed to test out all of these different things. But I think also over the same period, we’ve seen the private sector make many of the same moves. You know, private insurers have gotten a little bit more stingy about covering new technologies without evidence. They’ve tended to pay physicians and hospitals in bundles, or paying them incentives for quality, not paying them for certain types of care that involve errors. And so a lot of people I talked to said that they think the medical system is reacting to all of the payers crunching down on them. And so they’re just not being quite as aggressive and they’re trying to think more about value, which I feel like is like kind of a lame buzzword that often doesn’t mean anything. But I think, you know, it’s a way of thinking about this change. And, you know, that’s the kind of thing, if culturally that endures, you know, could continue into the future. Whereas some of these other factors, like the demographics, the lack of technological development, those — the Obamacare, which was kind of a one-time legislative change, you know — those things may not continue into the future, which is why the fact that we’ve had 15 years of flat Medicare spending is no guarantee that Medicare spending won’t spike again in the future. And I think you were right to point to what’s happening in the private sector, because private sector insurance premiums also have been like a little bit on the flat side through this period. And I think there is potential for them to take off again.

Huetteman: Absolutely. And that’s what The Wall Street Journal’s reporting had just said, that the health care costs for coming into next year are climbing. Let’s talk about that for a minute. Why are private insurance costs rising as Medicare spending levels off? One of the things that I noticed is we talked about technological innovation. Pharmaceutical innovation seems to be one of the things that’s contributing to rising private health insurance costs and elsewhere, in particular, those weight-loss drugs I know.

Kenen: And the Alzheimer’s drugs.

Huetteman: And the Alzheimer’s drugs.

Kenen: Eventually they’ll become more widely available. Sarah knows way more than the rest of us.

Karlin-Smith: The Alzheimer’s drugs will probably be less of an issue for the private health insurance population. But certainly weight-loss drugs are something that private insurers are worried about what percentage of the population they will cover with these drugs. And I think insurance companies, they have to balance that … difficult balance between what percentage of the drug cost rate you put on patients and what do you build into premiums. And sometimes there’s only so much flexibility they can have there. So I think that’s a big reason for what you’re seeing here.

Huetteman: Yeah, absolutely.

Sanger-Katz: I think the weight-loss drugs are interesting because they kind of are, potentially, an example of the kind of technology that is both expensive and good for public health, right? So, you know, when we have all these improvements in cardiac disease, like, that was great. People didn’t have heart attacks. They didn’t have disability in old age. They lived longer lives. That was great. But it cost a ton of money. And I think because we have been going through this period in which costs have been kind of level, and there hasn’t been a lot of expensive breakthrough technology, we haven’t had to weigh those things against each other in the way that we might now, where we might have to say, OK, well, like, this is really expensive, but also, like, it has a lot of benefits. and how do we decide what the right cost benefit is as a society, as an employer, as a public insurance program? And I think we’re going to see a lot of payers and economists and other analysts really thinking hard about these trade-offs in a way that they, I think, haven’t really been forced to do very much in the last few years with … I mean, maybe with the possible exception of those breakthrough therapies for hepatitis C —also expensive, huge public health benefit. And it was a struggle for our system to figure out what to do with them.

Kenen: But, like the statins, which, you know, revolutionized heart health, these drugs that are useful for both diabetes and … weight loss, the demand of people who just want them because they want to lose those 20 pounds, insurers are not — Medicare at least is not — covering it. Insurers have some rules about “Are you pre-diabetic?” and etc., etc., but they cost a lot of money and a lot of people want to take them. So I think they’re clearly great for diabetes. They clearly are a whole new class of drugs that are going to do good things. We still don’t. … There’s still questions about who should be using them for the rest of their lives, for weight control, etc., etc. Yes, there are going to be benefits, but this era of … what is the typical cost per month, Sarah?

Karlin-Smith: The list price of these drugs are thousands of dollars per month. But I think to your point, Joanne, though, the trouble for insurance companies who are figuring out how to cover this is they’re starting to get more research that there are these actual health benefits outside of just weight loss. And once you start to say, you know, that these drugs help prevent heart attacks and have hard evidence of that, it becomes harder for them to deny coverage. I think to Margot’s point of the long-term benefits, you might see to health because of it, we get back to another issue in the U.S. health system is, which is these private health insurance companies might essentially basically be footing the bill for benefits that Medicare is going to reap, not necessarily the insurance companies, right? So if somebody, you know, doesn’t have a heart attack at 50 because they’re on these drugs, that’s great. But if the savings is actually going to Medicare down the line, you know, the private health insurer doesn’t see the benefit of that. And that’s where some of the tensions you get into it in terms of, like, how we cover these products and who we give them to.

Kenen: Because that trade-off: quality of life and longevity of life. That’s what health is about, right? I mean, is having people live healthy, good lives, and it costs money. But there’s this issue of the drug prices have gotten very high, and hepatitis C is a perfect example. I mean, now it’s like we were freaked out about $84,000 in, you know, 2013, 2015, whenever that came out. You know, now that looks quaint. But that price was still so high that we didn’t get it to people. We could have wiped out hepatitis C or come damn close to wiping out hepatitis C, but the price the drug was an obstacle. So we’re still, I mean, there’s a big White House initiative now, you know, there’s creative … the Louisiana model of, you know, what they call the Netflix model where, you know, you have a contract to buy a whole ton of it for less per unit. I mean, these are still questions. Yes. I mean, we all know that certain drugs make a big difference. But if they’re priced at a point where people who need them the most can’t get them, then you’re not seeing what they’re really invented for.

Sanger-Katz: Oh, I was just going to say, I think that part of what interests me about this particular class of drugs and the debates that we are likely to have about them, and there are, you know, the way that they’re going to be adopted into our health care system is that setting aside the diabetes indication for a moment, the idea of drugs that effectively treat obesity, I think obesity is a very stigmatized disease in our country. And in fact, Medicare has statutory language that says that Medicare cannot cover drugs for weight loss. So it would actually require an act of Congress for these drugs to be approved for that purpose in Medicare. And in Medicaid, in general, states are required to cover FDA-approved drugs. You know, they can put some limitations, but they’re supposed to cover them. Again, there is a special statutory exclusion for weight-loss drugs where the states really have discretion they don’t have for a cancer drug, for a drug for diabetes, a drug for other common diseases. And so I do think that, you know, a lot of this debate is colored by people’s prejudices against people who have obesity, and the way that our medical care system has thought about them and the treatment for their disease over time. And I’m curious about that aspect of it as well. I mean, of course, I think that Joanne is absolutely right that we do not know long term how these drugs are going to help people with obesity, whether it’s really going to reduce the burden of disease down the road for them, whether it’s going to have other health consequences in an enduring way. You know, I think there are unknowns, but I think if you take the most optimistic possible look at these drugs, that there’s quite a lot of evidence that they really do improve people’s health. And if we treat these drugs differently than we would an expensive drug for an infectious disease like hepatitis C or different from an expensive drug for cancer diseases that are less stigmatized, I think that would maybe be a little bit sad.

Karlin-Smith: I mean certainly the reason why the initial restrictions in Medicare and other programs are baked in goes back to stigma to some degree. But also, I mean … because they were thinking of these as weight-loss drugs and sort of vanity treatments people would only be using for vanity. And at that time, the drugs that were available did not work quite as well and had a lot of dangers and certainly did not show any of these other health benefits that we’re starting to see with this new class of medicine. So I think that would be the hope that, you know, as the science and the products shift, as well as our medical understanding around what causes obesity, what doesn’t cause obesity, how much of it is … right, again, just as medical as any other condition and not all about a person’s behavior. And I think we will see that the benefits of some of these drugs for certain people, in particular, are probably a lot bigger than maybe the benefits of certain cancer treatments that we pay a lot more money for. The challenge is going to be the amount of people and the amount of time they are going to be on these drugs, right? You know, if you’re talking about these hepatitis C drugs, I think one reason they didn’t shock the budgets in the way people were expecting, besides the fact that, unfortunately, we didn’t get them to everybody, is they’re actually really short-term cures, right? I think it’s like 10 weeks or something.

Kenen: Some are like eight.

Karlin-Smith: Right. Ballpark. And with the obesity drugs, what we know … these new drugs so far is that you seem like you have to consistently take them. Once you get off them, the weight comes back. And then the assumption would be you lose all those health benefits. So we’re talking about a high-cost drug on a chronic basis that our system can’t afford.

Kenen: Margot, do you know? I mean, my guess is that the ban on covering weight-loss drugs was written into MMA [the Medicare Modernization Act] in 2003. That’s my guess. I don’t know if anyone …

Sanger-Katz: That’s right. Yeah. It was part of the creation of the drug benefit program.

Kenen: So I think that you’re totally right that it’s what both of you said. You know, we tended to say it was someone’s fault, like they didn’t have enough willpower. Or they, you know, didn’t do what they were supposed to do. And there was stigma and we thought about it diffrently. I also think the science, you know, Sarah alluded to this, I think the science of obesity has really changed, that we didn’t talk about it — even though obesity experts — really didn’t talk about it as a disease a generation ago. We thought of it as maybe as a risk factor, but we didn’t think of it as a disease in and of itself. And we now do know that. So I think that the coverage issues are going to change. But what are the criteria? How fast do they change, for who do they change? Do you really want to put somebody on a drug because they want to lose 10 or 15 punds, which is … versus someone who really has struggled with weight and has physical risk factors because of it, including, you know, heart disease, diabetes, all these other things we know about. I mean, I just think we don’t know. I mean, there was a piece in the Times about the Upper East Side of Manhattan is like this beehive of people taking these weight loss drugs because they can afford it, but they’re also thinner than the rest of the population. So it becomes, you know, a luxury good or another disparity.

Sanger-Katz: If insurance won’t cover these drugs ,of course, rich people are going to take them more than people of limited means. Right? Like, I think you can only really test the hypothesis of, like, who are these drugs meant to reach once … if you have coverage for them, right? I thought that story was very good, and it did reveal something that’s happening. But I also thought … it felt like it was focusing on the idea that that rich people were taking these drugs just for vanity. And I think …

Kenen: Some of them, not all clearly some of them.

Sanger-Katz: Some of them are, of course. But I thought the thing that was less explored in that story is all of the people in poor neighborhoods of New York who were not accessing those drugs. Was it because they couldn’t find any way to get them?

Kenen: Right, and some of them were pre-diabetic. Some of them. I mean, the other thing is people who are overweight are often pre-diabetic. And that is an indication. I mean, you can … it’s in flux. It’s going to change over the coming months, you know, but what a cost and how those benefits paid off and who’s going to end up paying and where the cost shifting is going to come, because there is always cost shifting. We just don’t know yet. But these drugs are here to stay. And there are questions. There are a lot of questions. The mounting evidence is that they are going to be a benefit. It’s just, you know, what do we pay for them? Who gets them? How long do the people stay on them, etc., etc., etc.

Sanger-Katz: And just to come back to Emmarie’s first question, like, what is this going to mean for our insurance premiums, right? With something like 40% of adults in the United States have obesity. If we start to see more and more people taking these drugs to treat this disease, all of us are going to have to pay for that in some way. And, you know, that affects overall health care.

Huetteman: Absolutely. Well, let’s move to the week’s big covid news now. This week, the FDA approved a new booster, which comes amid an uptick in cases and concerns about a surge this fall and winter. Before the CDC made its recommendations, though, there was debate over whether the booster should be recommended only for a couple of higher-risk groups. So who does the CDC say should get the shot? And what’s the response been like from the health care community so far?

Karlin-Smith: So the CDC decided their advisers and the CDC themselves to recommend the shot for everybody. That really didn’t surprise me because I think that was the direction FDA wanted to go as well. I think the majority came down to the fact that a broad recommendation would be the best for health equity and actually ensuring the people we really want to get the shots get them. If you start siphoning off the population and so forth, it actually might prevent people that really should get the shots from getting it. I think the booster debate has actually been really similar since we started approving covid boosters, which is that the companies that provided for the boosters is not the same as the original data they presented to get the vaccines approved. So we don’t have as much understanding with the type of rigorous research some people would like to know: OK, what is the added benefit you’re getting from these boosters? We know they provide some added benefit of protection for infection, but that’s very short-lived. And then I think there’s … people have differences of opinions of how much added protection it’s giving you from severe disease and death. And so there are factions who argue, and I think Paul Offit has become one of the most known and vocal cheerleaders of this mindset, which is that, well, actually, if you’ve already had, you know, two, three, four shots, you’ve already had covid, you’re probably really well protected against the worst outcomes. And these shots are not really going to do that much to protect you from an infection. “So why take them anymore?” — essentially, is sort of his mindset. And there are people that disagree. I think the thing that probably might help change mindsets is, at least in this country, probably not going to happen, which is, you know, more rigorous outcomes research here. But I think the sentiment of the CDC and its advice has been, well, these shots are extremely low risk and there’s at least some added benefit. So for most people, the risk-benefit balance is: Get it. And if you make it kind of simple, if you say, OK, you know, everybody, it’s time to get your next covid booster, the feeling is that will get the most people in the U.S. to go out and do it. Unfortunately, most covid booster recommendations have been fairly broad — the last, at least, and that hasn’t translated. But we’ll see. This is actually the first time that everyone, except for babies under 6 months — because you can’t start your covid vaccination until then —everybody is really included in the booster recommendation at the same time. In previous rounds, particularly for younger kids, it was more staggered. So this will be the simplest recommendation we have yet.

Kenen: And that’s part of the public health strategy, is to not talk about it so much as boosters, just as an annual shot. The way you get an annual flu shot. I mean, most people don’t get them. But the idea is that to normalize this, you know, you get an annual flu shot, you get an annual covid shot, for certain age groups you get annual RSV now that’ll be available. But that’s not for everybody. I mean, I think they really want to make this simple. OK, it’s fall, get your covid shot. We don’t think uptake is going to be real high. It hasn’t been for boosters. But in terms of trying to change, this is just, you know, this is one of those things to add to your to-do list this year and to, sort of, less “pandemicize” it. I don’t think that’s a word. But, you know, everyone will forgive me. And more just, you know, OK, you know, this is one of the things you got to do in the fall. Maybe “pandemicize” is a word or maybe it should be.

Sanger-Katz: I like it. Maybe we should use it.

Huetteman: Pandemicize your care.

Kenen: Right. You know, it’s part of your preventive care and just … I mean, good luck trying to de-politicize it. But that’s part of it. I mean, the CDC director, Mandy Cohen, she wrote an op-ed this week and it was all about, you know, I’m a doctor, I’m the CDC director, and I’m a mom. And, you know, my family is going to get it. You know, Ashish Jha was tweeting about how he’s going to get it, his elderly parents are going to get theirs as soon as possible, etc., etc. So it’s not going to be … the hard-core people who really don’t want these shots and haven’t taken the shots and believe the shots cause more harm than good, etc. It won’t change a lot of their minds. But there are a lot of people who are uncertain in the middle and their minds can be changed. And they have … they were changed in the initial round of shots. So that’s who the messaging is … it’s sort of a reminder to people who take the shots and an invitation to those who … haven’t been getting boosted that just start doing this every year.

Karlin-Smith: And it is important to emphasize when the boosters have been tweaked and, you know, updated to try to match as close as they possibly can the current version of the virus. The virus has evolved and shifted a lot over time to the point where even these boosters, you know, they can’t quite keep up with the virus. But the idea is that we’re helping broaden everybody’s protection by keeping it as up to date with the science. So I think that’s an important element of that, that people don’t appreciate. They’re not just giving you the exact same shot over and over again. They’re trying to, like we do with the flu vaccine every year, be as close to what is circulating as possible.

Kenen: And there’s a new, new, new, new variant that looked very — do I have enough “news” in there? — that looked, and I don’t remember the initials; I can’t keep track — that is really quite different than the other ones. And there was a lot of initial concern that this vaccine would not work or that we wouldn’t … that our protection would not work against that. The follow-up research is much more reassuring that the fall shot will work against that. But that one really is different, and it’s got a lot of mutations. And, you know, we don’t know yet how … some of these things come and go pretty quickly. I mean, who remembers Mu? That one people were very worried about and it seemed quite dangerous and luckily it didn’t take root. You know, people don’t even know there was a Greek letter called Mu. M-u, not m-o-o, in case anyone’s wondering. If relatives ask me if they should take it, the two things that struck me in reading about it are, yes, it works against this new variant, and we’re not really sure what are the new, new, new, new, new, new, new, new ones. And also, I mean, there’s some research that it does protect against long covid. And I think that’s a big selling point for people. I think there are people who still, with reason, worry about long covid, and that vaccination does provide some protection against that as well.

Huetteman: That’s a great point. I mean, anecdotally, you talk to your friends who’ve had covid, there’s going to be at least a few of them who say they haven’t quite felt like themselves ever since they had covid. And I think that is one of the things that really motivates people who aren’t in those higher-risk categories, to think about whether they need the booster or not.

Kenen: Yeah, and also the myocarditis … Sarah, correct …  you follow this more closely than I do, so correct me if I’m wrong here, but I believe that they’re finding that the myocarditis risk in the newer formulations of the vaccine has dropped, that it is not as much of a concern for young men. And covid itself can cause myocarditis in some individuals. Did I get that right?

Karlin-Smith: Yeah, I think that that’s right. The general sense has been that the risk was more with the initial shots, and it seems to have gone down. I think that there are people that still worry about particular age groups of, like, young men in certain age groups, that maybe for them the benefit-risk balance with the myocarditis risk is, you know, might be a little bit different. And that’s where a lot of the pushback comes through. But right, like you said, there is a fairly high … there’s myocarditis risk from covid itself that needs to be balanced.

Huetteman: Well, OK. That’s this week’s news. Now we’ll take a quick break and then we’ll come back with extra credits.

Julie 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.

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

Karlin-Smith: Sure. So I looked at a MedPage Today page by Kristina Fiore that talks about a GoFundMe campaign that was started by a small rural hospital in Pennsylvania. They’re trying to raise $1.5 million to basically keep the hospital open. It’s the only hospital in the county. It’s a small critical-access hospital. And I think people who follow health care and health policy in the U.S. are probably used to seeing GoFundMe campaigns for individual health care, as we talked about earlier in the episode, right? The unaffordability that can happen even for people with good insurance if you … depending on your medical situation. But this situation, I thought, was really unique, a whole hospital, which is, I guess, community-owned, and they’re essentially turning to the internet to try and stay open. And it touches on some of the payment differences in how rural hospitals make their money, or the payment rates they get reimbursed versus more urban hospitals. Other issues it brings up is just, you know, how do you keep an institution open that’s serving a relatively small population of people? So, you don’t necessarily want to have people going to the hospital, but they’re basically arguing that if we don’t get this amount of people in our ER per day, we can’t stay open. But then that means you don’t have an ER for anybody. And I think it’s just worth looking at, looking at the facts they put on their GoFundMe page, just thinking about, you know, what this says about various policies in the U.S. health system. And, unfortunately for them right now, they’re well short of their $1.5 billion goal.

Huetteman: Yeah, it’s amazing to see this get translated into an institution-saving effort as opposed to an individual-saving effort. Joanne, you want to go next?

Kenen: Sure. This is a story that it was by Bianca Fortis from ProPublica, Laura Biel, who wrote this for ProPublica and New York Magazine, and also Laura, who’s a friend of mine, also has a fabulous podcast called “Exposed.” And in this case, I want to mention the photographer, too, because if you click on this, it’s quite extraordinary visuals. Hannah Whitaker from New York Magazine. And the title is “How Columbia …” — and this is the university, not the country — “How Columbia Ignored Women, Undermined Prosecutors and Protected a Predator for More Than 20 Years.” This is an OB-GYN who was abusing his patients, and it’s hundreds, hundreds that have been identified and known. We knew about him because some of the patients had come forward, including Evelyn Wang, who was Andrew Wang — is Andrew Wang’s wife, the presidential candidate last cycle. But we didn’t know this. You know, first of all, it’s even bigger than we knew three years ago, and he has been prosecuted — finally. But it took 20 years. And this is really more of a story about how the medical system, the health care system, had warning after warning after warning after warning, and they didn’t do anything. And also, many of the people who tried to give the warnings, some of the employees, including the medical assistants, and the nurses, and the receptionists, knew what was going on. And they thought that they, as lower-level women going up against a white male doctor, wouldn’t be believed. And they didn’t even try. They just felt like he’s the guy, he’s the doctor. I’m the, you know, I’m the nurse. They won’t listen to me. So that was another subtheme that came out to me. I had known vaguely about this. It’s really long, and I read every word. It’s a really horrifying saga of an abdication of responsibility to women who were really harmed. Vulnerable women who were really harmed.

Huetteman: Yeah, it’s a really troubling story, but it’s an important piece of journalism. And I advise that people give it a little time. Margot, would you like to go next?

Sanger-Katz: Yeah. So this is a very nerdy, deep cut. I wanted to talk about a CBO [Congressional Budget Office] report from 2012 called “Raising the Excise Tax on Cigarettes: Effects on Health and the Federal Budget.” So when I published this article about how Medicare spending has sort of flattened out, we got so many reader comments and emails and tweets and several people asked, “Could it be that the decline in smoking has led to lower costs for Medicare?” And that caused me to do some reporting and to read this paper. And I think the finding, the sort of counterintuitive finding that I will tell you about in a minute, from the CBO really speaks to some of the discussion that we were having earlier about these obesity drugs, which is that there are many beneficial preventive therapies in health care that are great for people’s health. They make them healthier, they have happier lives, they live longer, they have less burden of disease, but they are not cost-effective in the sense that they reduce our total spending on health care. And the simplest way to think about this is that if everyone in America just died at age 65, Medicare’s budget would look amazing. You know, it would be great. We would save so much money if we could just kill everyone at age 65. But that’s not what the goal of Medicare is. It’s not to save the maximum amount of money. It’s to get a good value, to improve people’s life and health as much as possible for a good value. And so this report was looking at what would happen if we had a really effective policy to reduce smoking in the United States. They looked at a tax that they estimated would reduce the smoking rate by a further 5 percentage points. And what they found is that it would cost the government more money, that people would be healthier, they would live longer lives, more of them would spend more years in Medicare, and they would end up having some other health problem that was expensive that they weren’t going to have before. And also they would collect a lot of Social Security payments because they would live a lot longer. And so I found it so stunning because the economics of it, I think, make a lot of sense. And when you think about it, it’s true. But it does go to show how, I think, that sometimes when we, and when politicians, talk about preventive health care, they always talk about it like it’s a win-win. You know, this is going to be great for people and it’s going to save money. And I think that in health care, many times things that are good and beneficial improve health and they cost money and we have to decide if it’s worth it.

Huetteman: Absolutely. That’s great. Thank you. My extra credit this week comes from KFF Health News. Dr. Elisabeth Rosenthal, our senior contributing editor, writes: “The Shrinking Number of Primary Care Physicians Is Reaching a Tipping Point.” And we’ve seen some great coverage lately on the disappearance of the primary care doctor in this country. And Dr. Rosenthal also offers some solutions to this yawning gap in our health care system. She reports that the percent of U.S. doctors that have moved into primary care is now at about 25%, which is much lower than in previous decades. And one point she makes, in particular, about a problem that’s leading to this is the payment structure that we have in our country favors surgeries and procedures, of course, not diagnostic tests, preventative care, when it comes to reimbursing doctors. And of course, this lack of primary care doctors has implications for our overall health, both individually and as a country. So I recommend that you give that article a little bit of your time this week.

All right. 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, to our amazing engineer, Francis Ying. And as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @emmarieDC. Sarah?

Karlin-Smith: I’m @SarahKarlin.

Huetteman: Joanne?

Kenen: @JoanneKenen on Twitter, @joannekenen1 on Threads.

Huetteman: And Margot.

Sanger-Katz: @sangerkatz in all the places.

Huetteman: We’ll be back in your feed next week. Until then, be healthy.

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Casi lo fue. Atencio y sus hijos durmieron durante años en los sofás de amigos o en casa de familiares, sin poder alquilar un apartamento debido a su mal historial de crédito. Una de las principales razones, dijo, fue la deuda médica.

Atencio sufrió un ataque al corazón a los 19 años, desencadenado por una afección congénita no diagnosticada. Las deudas por su atención devastaron su crédito. “Siempre sentí que no podía salir adelante”, dijo, recordando una vida de trabajos sin futuro y préstamos con intereses altos mientras trataba de mantenerse al día con los cobradores de deudas.

A los 25 años, tuvo que declararse en quiebra.

En todo el país, la deuda médica obliga a legiones de estadounidenses a hacer sacrificios dolorosos. Muchos recortan gastos en alimentos, asumen trabajos adicionales o agotan sus ahorros para la jubilación. Para millones como Atencio, el sistema de atención médica amenaza sus propios hogares.

Esto ha resultado ser especialmente devastador en comunidades como Denver, donde los precios de las viviendas se han disparado, volviéndose inaccesibles para muchos residentes, alimentando una crisis que ha dejado a miles de personas sin hogar y durmiendo en las calles.

En Community Economic Defense Project, o CEDP, una organización sin fines de lucro de Denver que ayuda a las personas que enfrentan el desalojo o la ejecución hipotecaria de sus hogares, aproximadamente dos tercios de los clientes tienen deuda médica, según una encuesta informal realizada por KFF Health News y la organización.

Cerca de la mitad de las casi 70 personas encuestadas dijeron que la deuda médica desempeñó un papel en su problema de vivienda, y aproximadamente una de cada 6 dijo que fue un factor importante.

“Todo el día escucho sobre la deuda médica”, dijo Kaylee Mazza, defensora de inquilinos que trabaja en una clínica legal de CEDP en el tribunal de Denver que ofrece ayuda a los inquilinos que enfrentan procesos de desalojo. “Está en todas partes”.

A nivel nacional, alrededor de 100 millones de personas tienen alguna forma de deuda de atención médica. De ellos, aproximadamente una de cada 5 dijo que las deudas los obligaron a cambiar su situación de vida, incluyendo mudarse con amigos o familiares, según una encuesta de KFF de 2022.

Un creciente cuerpo de investigaciones muestra que la vivienda estable es fundamental para el bienestar físico y mental. Algunos sistemas médicos importantes, incluyendo varios en Colorado, incluso han comenzado a invertir en viviendas asequibles en sus comunidades, citando la necesidad de abordar los llamados determinantes sociales de salud.

Pero a medida que los hospitales y otros proveedores médicos dejan a millones en deuda, socavan inadvertidamente la salud de la comunidad, dijo Brian Klausner, médico en una clínica que atiende a pacientes sin hogar en Raleigh, Carolina del Norte.

“Muchos de los hospitales en todo el país que ahora públicamente se comprometen a abordar las inequidades en salud y eliminar las barreras para la salud están contribuyendo simultáneamente a crear estos mismos problemas”, dijo Klausner. “A nadie le gusta el elefante en la habitación, pero la realidad es que hay miles de estadounidenses enfermos que probablemente están sin hogar, y enfermos, debido a la deuda médica”.

Efecto dominó

La deuda médica puede socavar la seguridad de la vivienda de varias maneras. Para algunos, debilita su crédito, lo que dificulta alquilar o solicitar una hipoteca. El año pasado, aproximadamente uno de cada 8 consumidores estadounidenses con un informe de crédito tenía una deuda médica en él, según el Urban Institute, una organización sin fines de lucro.

Los pacientes con condiciones médicas crónicas pueden atrasarse en el pago del alquiler o de las cuotas de su hogar mientras luchan por mantener bajo control las deudas médicas para preservar el acceso a la atención médica. KFF Health News encontró que muchos hospitales y otros proveedores rechazan a pacientes con cuentas pendientes.

Denise Beasley, quien también ayuda a clientes en CEDP en Denver, dijo que muchas personas mayores, que normalmente dependen más de los médicos y los medicamentos, creen que deben pagar sus cuentas médicas y de farmacia antes que cualquier otra cosa. “Están aterrados”, dijo.

Para otros, esta deuda puede aumentar las dificultades financieras provocadas por un accidente o una enfermedad inesperada que los obliga a dejar de trabajar, poniendo en peligro su cobertura de salud o su capacidad para pagar la vivienda.

En Seattle, los investigadores encontraron una deuda médica generalizada entre los residentes de campamentos de personas sin hogar. Y aquellos con este tipo de deudas tendían a experimentar la falta de vivienda durante dos años más que los residentes de campamentos sin deuda.

En términos más generales, las personas con deuda médica tienen más probabilidades de decir que la deuda les ha impedido rentar o avanzar con una hipoteca, en comparación con las personas que tienen préstamos estudiantiles o de tarjetas de crédito, según una encuesta nacional de 2019 realizada por la empresa de bienes raíces Zillow entre inquilinos, compradores de viviendas y dueños de propiedades.

Para Atencio, quien dejó su hogar a los 16 años, sus problemas con la deuda médica comenzaron con el ataque al corazón. Estaba trabajando en una gasolinera y viviendo en Trinidad, una pequeña ciudad en el sur de Colorado cerca de la frontera con Nuevo México.

Fue llevado de urgencia a un hospital local, donde fue sometido a una cirugía. Las facturas, que superaban los $50,000, no estaban cubiertas por su plan de salud porque había acudido a un proveedor fuera de la red sin saberlo, contó. “Luché lo más que pude, pero no podía pagar un abogado. Estaba atrapado”.

Atencio, quien es transgénero, tiene el pelo oscuro corto y un gran tatuaje en su antebrazo derecho en memoria de dos amigos que murieron en un accidente automovilístico. Sentado en un sofá viejo en un apartamento con rejas en las ventanas, es filosófico acerca de su largo periplo desde esa crisis médica a través de años de deuda e inseguridad de vivienda. “Hemos salido adelante”, dijo. “Pero tuvo un costo”.

Cuando su crédito bajó a cerca de 300, la calificación más baja, había pocos lugares a los que recurrir en busca de ayuda. La relación de Atencio con sus padres, quienes se divorciaron cuando él tenía 2 años, había sido tensa durante años. Atencio se casó a los 18, pero él y su esposo rara vez tenían suficiente para llegar a fin de mes. “Recuerdo pensar, ‘¿Qué tipo de comienzo de mi vida adulta es este?'”.

Finalmente, fueron acogidos por la madre de su esposo. “Si no fuera por ella, habríamos estado sin hogar”, dijo. Pero salir de la deuda fue agonizante.

“Terminas en este ciclo”, dijo. “Te endeudas. Luego tomas préstamos para tratar de pagar parte de la deuda. Pero luego está todo ese interés”. Con un mal historial de crédito, Atencio en ocasiones dependía de prestamistas a los que hay que devolver el dinero pronto, cuyas altas tasas de interés pueden aumentar drásticamente lo que deben los prestatarios.

Además, muchos empleadores también verifican los puntajes de crédito, lo que dificultaba que Atencio encontrara algo más que trabajos mal remunerados.

El trabajo en el refugio fue un paso adelante, y este año Atencio obtuvo el apartamento, que está reservado para familias monoparentales en riesgo de quedarse sin hogar. (Atencio se separó de su esposo el año pasado).

Desafíos de vivienda en Colorado

Las luchas de vivienda de Atencio están lejos de ser únicas. Jim y Cindy Powers, quienes viven en Greeley, una pequeña ciudad al norte de Denver, vieron colapsar sus propios sueños de vivienda después de que a Cindy se le diagnosticara una afección potencialmente mortal que requirió múltiples cirugías y dejó a la pareja con más de $250,000 en deuda médica.

Cuando los Powers se declararon en quiebra, el acuerdo protegió su hogar. Pero su hipoteca fue vendida y el nuevo prestamista rechazó el plan de pago. Perdieron la casa.

Lindsey Vance, de 40 años, quien se mudó a Denver hace cinco años en busca de viviendas más asequibles que en el área de Washington, DC, de donde es originaria, aún no puede comprar una casa debido a deudas médicas. Ella y su esposo tienen un ingreso de seis cifras, pero las facturas médicas por incluso atención de rutina que ha luchado por pagar desde sus 20 años han afectado su crédito, dificultando la obtención de un préstamo. “Estamos atrapados en un punto muerto”, dijo.

En Denver y sus alrededores, funcionarios electos, líderes empresariales y otros se han mostrado cada vez más preocupados por la deuda médica mientras buscan formas de abordar lo que muchos ven como una crisis de vivienda.

“Son cosas profundamente conectadas”, dijo Sarah Parady, miembro del Concejo Municipal de Denver. “A medida que los precios de la vivienda han subido y subido, he visto a más y más personas, especialmente personas con problemas médicos y deudas, perder la seguridad en la vivienda”.

Parady, quien se postuló para el cargo el año pasado para abordar la asequibilidad de la vivienda, está liderando un esfuerzo para que la ciudad compre y cancele la deuda médica de los residentes de la ciudad.

Impulsado por los precios disparados y las tasas de interés en aumento, el costo de comprar una vivienda en Denver se más que duplicó desde 2015 hasta 2022, según un análisis reciente. Y con los alquileres también aumentando, los desalojos están en alza luego del paréntesis de los dos primeros años de la pandemia.

Tal vez en ningún lugar la crisis de Denver es más visible que en las calles. El centro de la ciudad está lleno de tiendas de campaña y campamentos, incluido uno que se extiende por varias cuadras cerca del refugio y la clínica donde Atencio solía trabajar. Según un conteo, la población sin hogar del área metropolitana de Denver aumentó casi un 50% desde 2020 hasta 2023.

CEDP, que fue fundado para ayudar a los residentes con desafíos de vivienda desencadenados por la pandemia, se unió este año a otros defensores de consumidores y pacientes de Colorado para presionar a la legislatura en busca de protecciones más sólidas para los pacientes con deuda médica.

Y en junio, Colorado promulgó una ley pionera que prohíbe que la deuda médica se incluya en los informes de crédito de los residentes o se tenga en cuenta en sus puntajes crediticios, una medida que colocó al estado a la vanguardia de los esfuerzos a nivel nacional para ampliar las protecciones contra las deuda para los pacientes.

Algunos otros estados están considerando medidas similares. Y en Washington, DC, defensores de consumidores y pacientes están presionando para que se tomen medidas federales para limitar las facturas médicas en los informes de crédito. En la mayoría de los estados, incluyendo muchos con las tasas más altas de deuda médica, los pacientes aún no tienen tales protecciones.

Por su parte, Atencio espera que el nuevo apartamento marque un punto de inflexión.

El hogar es modesto, una pequeña unidad en una vieja torre de concreto. Hay un guardia de seguridad en la puerta principal y pasillos largos pintados de azul y marrón institucional.

La familia de Atencio se está instalando, junto con cuatro ratas mascotas: Stitch, Cheese, Peach y Bubbles, que viven en una jaula grande en la sala de estar. “Esto se siente como libertad”, dijo Atencio.

Ha tratado de darles a sus hijos, de 5 y 11 años, una sensación de seguridad: comidas caseras y espacio para jugar o pasar el rato en sus propios dormitorios. Como todos los padres, se preocupa por el tiempo que pasan frente a las pantallas y frunce el ceño cuando critican lo que hay para cenar. (No les gustaron las papas que puso en un asado al horno).

Todos son estudiantes a tiempo completo: Atencio, que dejó su trabajo en el refugio, está cursando una maestría en trabajo social. Su hijo acaba de empezar el jardín de infantes y su hija está en la escuela media. “Tengo grandes planes y grandes objetivos”, dijo.

Y con varios miles de dólares de deuda médica aún por pagar, agregó que tiene cuidado de no llevar a sus hijos a un hospital o médico fuera de la red. “No cometeré ese error de nuevo”, dijo.

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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It nearly was. Atencio and his children for years slept on friends’ couches or stayed with family, unable to rent an apartment because of poor credit. A big reason, he said, was medical debt.

Atencio had a heart attack at 19, triggered by an undiagnosed congenital condition. The debts from his care devastated his credit score. “It always felt like I just couldn’t get a leg up,” he said, recalling a life of dead-end jobs and high-interest loans as he tried to stay ahead of debt collectors. By 25, he’d declared bankruptcy.

Across the country, medical debt forces legions of Americans to make painful sacrifices. Many cut back on food, take on extra work, or drain retirement savings. For millions like Atencio, the health care system is threatening their very homes.

That’s proven particularly devastating in communities like Denver, where skyrocketing prices have put housing out of reach for many residents and fueled a crisis that’s left thousands homeless and sleeping on the streets.

At the Community Economic Defense Project, or CEDP, a Denver nonprofit that helps people facing eviction or home foreclosure, about two-thirds of clients have medical debt, an informal survey by KFF Health News and the organization suggests. Close to half of the nearly 70 people surveyed said medical debt played a role in their housing issue, with about 1 in 6 saying it was a major factor.

“All day long I hear about medical debt,” said Kaylee Mazza, a tenant advocate who staffs a CEDP legal clinic at the Denver courthouse that offers aid to tenants going through eviction proceedings. “It’s everywhere.”

Nationwide, about 100 million people have some form of health care debt. Of those, about 1 in 5 said the debts have forced them to change their living situation, including moving in with friends or family, according to a 2022 KFF poll.

A growing body of evidence shows that stable housing is critical to physical and mental well-being. Some major medical systems — including several in Colorado — have even begun investing in affordable housing in their communities, citing the need to address what are sometimes called social determinants of health.

But as hospitals and other medical providers leave millions in debt, they inadvertently undermine community health, said Brian Klausner, a physician at a clinic serving homeless patients in Raleigh, North Carolina.

“Many of the hospitals across the country that are now publicly vowing to address health inequities and break down barriers to health are simultaneously helping to create these very problems,” Klausner said. “Nobody likes the elephant in the room, but the reality is that there are thousands of sick Americans who are likely homeless — and sick — because of medical debt.”

A Downward Spiral

Medical debt can undermine housing security in several ways. For some, it depresses credit scores, making it difficult to get a lease or a mortgage. Last year, about 1 in 8 U.S. consumers with a credit report had a medical debt listed on it, according to the nonprofit Urban Institute.

Patients with chronic medical conditions may fall behind on rent or home payments as they scramble to keep medical debts in check to preserve access to health care. Many hospitals and other providers will turn away patients with outstanding bills, KFF Health News found.

Denise Beasley, who also assists clients at CEDP in Denver, said many older people, who typically depend most on physicians and medications, believe they must pay their medical and pharmacy bills before anything else. “The elderly are terrified,” she said.

For others, such debt can compound financial struggles brought on by an accident or unexpected illness that forces them to stop working, jeopardizing their health coverage or ability to pay for housing.

In Seattle, researchers found widespread medical debt among residents in homeless encampments. And those with such debt tended to experience homelessness two years longer than encampment residents without it.

More broadly, people with medical debt are more likely to say the debt has caused them to be turned down for a rental or a mortgage than people with student loans or credit card debt, according to a 2019 nationwide survey of renters, homebuyers, and property owners by real estate company Zillow.

For Atencio, who left home at 16, his struggles with medical debt began with the heart attack. He was working at a gas station and living in Trinidad, a small city in southern Colorado near the New Mexico border.

Rushed to a local hospital, he underwent surgery. The bills, which topped $50,000, weren’t covered by his health plan because he’d unknowingly gone to an out-of-network provider, he said. “I fought it as hard as I could, but I couldn’t afford a lawyer. I was stuck.”

Atencio, who is transgender, has close-cropped dark hair and a large tattoo on his right forearm memorializing two friends who died in a car accident. Sitting on an aging couch in an apartment with bars on the windows, he’s philosophical about his long journey from that medical crisis through years of debt and housing insecurity. “We’ve pulled ourselves out of this,” he said. “But it took a toll.”

When Atencio’s credit score dipped close to 300, the lowest rating, there were few places to turn for help. Atencio’s relationship with his parents, who divorced when he was 2, had been strained for years. Atencio got married at 18, but he and his husband rarely had enough to make ends meet. “I remember thinking, ‘What kind of a start to my adult life is this?’”

They were ultimately taken in by Atencio’s mother-in-law. “If it wasn’t for her, we would have been homeless,” he said. But getting out from the debt was agonizing.

“You end up in this cycle,” he said. “You get into debt. Then you take out loans to try to pay off some of the debt. But then there’s all this interest.” With poor credit, Atencio relied at times on payday lenders, whose high interest rates can dramatically increase what borrowers owe. Many employers also check credit scores, which made it difficult for Atencio to land anything but low-wage jobs.

The job at the shelter was a step up, and Atencio this year got the apartment, which is reserved for single-parent families at risk of being homeless. (Atencio separated from his husband last year.)

Colorado’s Housing Challenges

Atencio’s housing struggles are hardly unique. Jim and Cindy Powers, who live in Greeley, a small city north of Denver, saw their own housing dreams collapse after Cindy was diagnosed with a life-threatening condition that required multiple surgeries and left the couple with more than $250,000 in medical debt.

When the Powers declared bankruptcy, the settlement protected their home. But their mortgage was sold, and the new lender rejected the payment plan. They lost the house.

Lindsey Vance, 40, who moved to Denver five years ago seeking more affordable housing than the Washington, D.C., area where she was from, still can’t buy a house because of medical debts. She and her husband have a six-figure income, but medical bills for even routine care that she’s struggled to pay since her 20s have depressed her credit score, making it difficult to get a loan. “We’re stuck in a holding pattern,” she said.

In and around Denver, elected officials, business leaders, and others have become increasingly concerned about medical debt as they look for ways to tackle what many see as a housing crisis.

“These things are deeply connected,” Denver City Council member Sarah Parady said. “As housing prices have gone up and up, I’ve seen more and more people, especially people with a medical issues and debts, lose housing security.” Parady, who ran for office last year to address housing affordability, is helping lead an effort to get the city to buy and retire medical debt for city residents.

Fueled by skyrocketing prices and rising interest rates, the cost of buying a home more than doubled in Denver from 2015 to 2022, according to one recent analysis. And with rents also surging, evictions are rocketing upward after slowing during the first two years of the pandemic.

Perhaps nowhere is Denver’s crisis more visible than on the streets. The city’s downtown is dotted with tents and encampments, including one that stretches over several blocks near the shelter and clinic where Atencio used to work. By one count, metro Denver’s homeless population increased nearly 50% from 2020 to 2023.

CEDP, which was founded to help residents with housing challenges sparked by the pandemic, this year joined other Colorado consumer and patient advocates to push the legislature for stronger protections for patients with medical debt.

And in June, Colorado enacted a trailblazing bill that prohibits medical debt from being included on residents’ credit reports or factored into their credit scores, a move that put the state at the forefront of efforts nationally to expand debt protections for patients.

A few other states are considering similar steps. And in Washington, D.C., consumer and patient advocates are pushing for federal action to limit medical bills on credit reports. In most states — including many with the highest rates of medical debt — patients still have no such protections.

For his part, Atencio is hoping the new apartment marks a turning point.

The home is modest — a small unit in an aging concrete tower. There’s a security guard by the front door and long, linoleum corridors painted institutional blue and brown.

Atencio’s family is settling in, along with four pet rats — Stitch, Cheese, Peach, and Bubbles — who live in a large cage in the living room. “This feels like freedom,” said Atencio.

He’s tried to give his children, who are 5 and 11, a sense of security: home-cooked meals and the space to play or hang out in their own bedrooms. Like parents everywhere, he frets over their screen time and rolls his eyes when they critique what’s for dinner. (They didn’t like the potatoes he put in a pot roast.)

They are all full-time students: Atencio, who left his job at the shelter, is working on a master’s in social work. His son just started kindergarten, and his daughter is in middle school. “I have big plans and big goals,” he said.

And with several thousand dollars of medical debt still to pay off, Atencio said he’s careful not to take his kids to an out-of-network hospital or physician. “I won’t make that mistake again,” he said.

About This Project

“Diagnosis: Debt” is a reporting partnership between KFF Health News and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on original polling by KFF, court records, federal data on hospital finances, contracts obtained through public records requests, data on international health systems, and a yearlong investigation into the financial assistance and collection policies of more than 500 hospitals across the country. 

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status for KFF Health News to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses. And the CED Project, a Denver nonprofit, worked with KFF Health News on a survey of its clients to explore links between medical debt and housing instability. 

KFF Health News journalists worked with KFF public opinion researchers to design and analyze the “KFF Health Care Debt Survey.” The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Reporters from KFF Health News and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

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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America’s pharmaceutical giants are suing this summer to block the federal government’s first effort at drug price regulation.

Last year’s Inflation Reduction Act included what on its face seems a modest proposal: The federal government would for the first time be empowered to negotiate prices Medicare pays for drugs — but only for 10 very expensive medicines beginning in 2026 (an additional 15 in 2027 and 2028, with more added in later years). Another provision would require manufacturers to pay rebates to Medicare for drug prices that increased faster than inflation.

Those provisions alone could reduce the federal deficit by $237 billion over 10 years, the Congressional Budget Office has calculated. That enormous savings would come from tamping down drug prices, which are costing an average of 3.44 times — sometimes 10 times — what the same brand-name drugs cost in other developed countries, where governments already negotiate prices.

These small steps were an attempt to rein in the only significant type of Medicare health spending — the cost of prescription drugs — that has not been controlled or limited by the government. But they were a call to arms for the pharmaceutical industry in a battle it assumed it had won: When Congress passed the Medicare prescription drug coverage benefit (Part D) in 2003, intense industry lobbying resulted in a last-minute insertion prohibiting Medicare from negotiating those prices.

Without any guardrails, prices for some existing drugs have soared, even as they have fallen sharply in other countries. New drugs — some with minimal benefit — have enormous price tags, buttressed by lobbying and marketing.

AZT, the first drug to successfully treat HIV/AIDS, was labeled “the most expensive drug in history” in the late 1980s. Its $8,000-a-year cost was derided as “inhuman” in a New York Times op-ed. Now, scores of drugs, many with much less benefit, cost more than $50,000 a year. Ten drugs, mostly used to treat rare diseases, cost over $700,000 annually.

Pharmaceutical manufacturers say high U.S. prices support research and development and point out that Americans tend to get new treatments first. But recent research has shown that the price of a drug is related neither to the amount of research and development required to bring it to market nor its therapeutic value.

And selling drugs first in the U.S. is a good business strategy. By introducing a drug in a developed country with limited scrutiny on price, manufacturers can set the bar high for negotiating with other nations.

Here are just a few of the many examples of drug pricing practices that have driven consumers to demand change.

Exhibit A is Humira, the best-selling drug in history, earning AbbVie $200 billion over two decades. Effective in the treatment of various autoimmune diseases, its core patent — the one on the biologic itself — expired in 2016. But for business purposes, the “controlling patent,” the last to expire, is far more important since it allows an ongoing monopoly.

AbbVie blanketed Humira with 165 peripheral patents, covering things like a manufacturing step or slightly new formulation, creating a so-called patent thicket, making it challenging for generics makers to make lower-cost copycats. (When they threatened to do so, AbbVie often offered them valuable deals not to enter the market.) Meanwhile, it continued to raise the price of the drug, most recently to $88,000 a year. This year, Humira-like generics (called biosimilars for its type of molecule) are entering the U.S. market; they have been available for a fraction of the price in Europe for five years.

Or take Revlimid, a drug by Celgene (now part of Bristol Myers Squibb), which treats multiple myeloma. It won FDA approval to treat that previously deadly disease in 2006 at about $4,500 a month; today it retails at triple that. Why? The company’s CEO explained price hikes were simply a “legitimate opportunity” to improve financial “performance.”

Since it must be taken for life to keep that cancer in check, patients who want to live (or their insurers) have had no choice but to pay. Though Revlimid’s patent protection ran out in 2022, Celgene avoided meaningful price-cutting competition by offering generic competitors “volume-limited licenses” to its patents so long as they agreed to initially produce a small share of the drug’s $12 billion monopoly market.

Par Pharmaceutical, another drugmaker, maneuvered to create a blockbuster market out of a centuries-old drug, isoproterenol, through a well-meaning FDA program that gave companies a three-year monopoly in exchange for performing formal testing on drugs in use before the agency was formed.

During those three years, Par wrapped its branded product, Vasostrict, used to maintain blood pressure in critically ill patients, with patents — including one on the compound’s pH level — extending its monopoly eight additional years. Par raised the price by 5,400% between 2010 and 2020. When the covid-19 pandemic filled intensive care units with severely ill patients, that hike cost Americans $600 million to $900 million in the first year.

And then there is AZT and its successors, which offer a full life to HIV-positive people. Pills today contain a combination of two or three medicines, the vast majority including one similar to AZT, tenofovir, made by Gilead Sciences. The individual medicines are old, off-patent. Why then do these combination pills, taken for life, sometimes cost $4,000 monthly?

It’s partly because many manufacturers of the combination pills have agreements with Gilead that they will use its expensive branded version of tenofovir in exchange for various business favors. Peter Staley, an activist with HIV, has been spearheading a class-action suit against Gilead, alleging “collusion.” The negotiated price for these pills is hundreds of dollars a month in the United Kingdom, not the thousands charged in the U.S.

Faced with such tactics, 8 in 10 Americans now support drug price negotiation, giving Congress and the Biden administration the impetus to act and to resist Big Pharma’s legal challenges, which many legal experts view as a desperate attempt to stave off the inevitable.

“I don’t think they have a good legal case,” said Aaron Kesselheim, who studies drug pricing at Harvard Medical School. “But it can delay things if they can find a judge to issue an injunction.” And even a year’s delay could translate into big money.

Yes, American patients are lucky to have first access to innovative drugs. And, sadly, patients in countries that refuse to pay up once in a while go without the latest treatment. But more sadly, polling shows, large numbers of Americans are forgoing prescribed medicines because they can’t afford them.

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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But when his knee started aching in late 2020, he discovered that Ballad Health was the only game in town: He went to his longtime primary care doctor, now employed by Ballad, who sent him to an orthopedist’s office owned by Ballad. That doctor sent him to get an X-ray at a Ballad-owned facility and then he was referred to a physical therapy center called Mountain States Rehab, which was now owned by Ballad as well.

When the price of his physical therapy doubled overnight — to nearly $200 for approximately 30 minutes — there was nowhere else to go, because Ballad Health effectively had a monopoly on care in 29 counties of the Appalachian Highlands in northeastern Tennessee, southwestern Virginia, northwestern North Carolina, and southeastern Kentucky.

“I was stuck,” said Finney, a college professor. “My wife now drives 50 miles to see a doctor that’s not part of Ballad, and I don’t have a doctor anymore.”

Biden administration regulators have unleashed a blizzard of antitrust activity and have broadened the definition of the types of unfair competition they can target. Regulators blocked a merger between publishing giants Penguin Random House and Simon & Schuster, saying it could have decreased author compensation and diminished the “diversity of our stories and ideas.” Regulators have filed suit to block JetBlue’s acquisition of Spirit Airlines on the grounds that the existence of the lower-cost Spirit kept fare increases by other carriers in check.

But while hospital mergers and creeping consolidation have arguably proved more traumatic and costly for countless Americans like Finney, they may prove harder to curtail.

After decades of unchecked mergers, health care is the land of giants, with one or two huge medical systems monopolizing care top to bottom in many cities, states, and even whole regions of the country. Reams of economic research show that the level of hospital consolidation today — 75% of markets are now considered highly consolidated — decreases patient choice, impedes innovation, erodes quality, and raises prices.

Ballad has generously contributed to performing arts and athletic centers as well as school bands. But, critics say, it has skimped on health care — closing intensive care units and reducing the number of nurses per ward — and demanded higher prices from insurers and patients. It has a habit of suing patients for unpaid bills. Its chief executive was paid about $4 million last year.

For many years in the past century the Federal Trade Commission made little effort to go to court to block hospital mergers because judges tended to rule that as nonprofit entities, hospitals were unlikely to use monopoly power to pursue abusive business practices. How wrong they were.

In 2021 President Joe Biden ordered the FTC to be more aggressive about hospital mergers and even to review those that had already occurred. But it is unclear if the agency has the tools to do much. “Regulators are 10 to 15 years behind and don’t have the resources — so that’s where we are,” said James Capretta, a senior fellow at the American Enterprise Institute.

The normal procedure for blocking proposed hospital mergers is cumbersome: often lengthy analysis to prove the effects on a particular market, warning letters, negotiations, and finally challenges in court.

With its staff of about 40 focused on hospitals, the FTC has prevented seven mergers in the past two years, said Rahul Rao, deputy director of the agency’s Bureau of Competition, who called the problem a “top priority.” But there were 53 hospital mergers and acquisitions in 2022 and have been more than 90 per year in recent years.

“It’s really hard to show that a prospective transaction is anti-competitive,” said Leemore Dafny, a Harvard economist who worked at the FTC about a decade ago. “I saw how hard it was for government to prove its case, even when it seemed obvious.”

In one market, two hospitals might be enough to ensure competition; in another, four. Even if the price goes up, that may not be considered anti-competitive if quality improves.

The FTC has an even harder time evaluating the vertical merger, which is far more common: when a big hospital system buys up a much smaller hospital or some doctors’ practices and independent surgery or radiology centers — or when it merges with a local insurer.

Many such mergers are never vetted at all, since transactions under $111 million do not have to be reported to the agency. “It’s a visibility problem,” Rao said. “We hear about it from news reports or from a state attorney general” who is more in touch with activity on the ground. Many of today’s behemoth systems — such as Northwell Health in New York, Sutter in California, and the University of Pittsburgh Medical Center in Pennsylvania — grew often by buying one small hospital, physician practice, or surgery center at a time, below the threshold where they would attract federal regulators’ scrutiny or merit use of their limited resources.

When hospitals buy doctors’ practices, research shows, rates for visits tend to go up as they did for Finney. Some purchases are essentially catch-and-kill operations: Buy a nearby independent outpatient cardiac center, for example, to eliminate cheaper competition.

As hospital systems have grown — and become major employers — their sway with state legislatures has created obstacles to curbing consolidation. Sympathetic state lawmakers have passed so-called Certificate of Public Advantage laws to shield hospitals from both federal and state antitrust action. Such certificates in Tennessee and Virginia allowed the formation of Ballad from two competing systems in 2018, over the FTC’s objections. The North Carolina Senate recently gave the UNC Health system the green light to expand, regardless of regulators’ thoughts.

The newest challenge is how to handle the growing number of cross-market mergers, where huge health systems in different parts of a state or of the country join forces. While the hospitals are not competing for the same patients, emerging research shows that these moves result in higher prices, in part because the increased negotiating clout of the enormous health system forces companies that cover employees in both markets to pay more in what previously was the cheaper region.

There are attempts and proposals to reinject a modicum of competition or restraint into the health system: The FTC has sought to ban noncompete clauses in job contracts that prevent doctors and nurses from moving from one hospital to another within a certain time, for example.

But many economists on both the left and the right have concluded that, at this point, meaningful competition may be difficult to restore in many markets. Barak Richman, a professor of law and business administration at Duke University, said, “It’s depressing for economists who live and breathe by competition to say maybe we just need price regulation.”

Indeed, a number of states — red and blue — are now gingerly floating moves to directly rein in prices. This year the Indiana Legislature, for example, banned hospitals from charging facility fees for visits outside of the hospital. The lawmakers even considered fining hospitals whose prices were more than 260% of the Medicare rate — though they deferred that move for two years in the hope that the threat would encourage better behavior.

With the FTC becoming more aggressive and legislatures considering such measures, perhaps hospital systems will heed the warnings and behave more like the care providers they’re meant to be and less like monopoly businesses.

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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Medicare and Medicaid patients will make up 92% of the market for lecanemab, according to Eisai Co., which sells the drug under the brand name Leqembi. In addition to the company’s $26,500 annual price tag for the drug, treatment could cost U.S. taxpayers $82,500 per patient per year, on average, for genetic tests and frequent brain scans, safety monitoring, and other care, according to estimates from the Institute for Clinical and Economic Review, or ICER. The FDA gave the drug full approval July 6. About 1 million Alzheimer’s patients in the U.S. could qualify to use it.

Patients with early Alzheimer’s disease who took lecanemab in a major clinical trial declined an average of five months slower than other subjects over an 18-month period, but many suffered brain swelling and bleeding. Although those side effects usually resolved without obvious harm, they apparently caused three deaths. The great expense of the drug and its treatment raises questions about how it will be paid for, and who will benefit.

“In the history of science, it’s a significant achievement to slightly slow down progression of dementia,” said John Mafi, a researcher and associate professor of medicine at the David Geffen School of Medicine at UCLA. “But the actual practical benefits to patients are very marginal, and there is a real risk and a real cost.”

To qualify for Leqembi, patients must undergo a PET scan that looks for amyloid plaques, the protein clumps that clog the brains of many Alzheimer’s patients. About 1 in 5 patients who took Leqembi in the major clinical test of the drug developed brain hemorrhaging or swelling, a risk that requires those taking the drug to undergo frequent medical checkups and brain scans called MRIs.

In anticipation of additional costs from the Leqembi drug class, the Centers for Medicare & Medicaid Services in 2021 increased monthly premiums for Medicare patients by 15%, and premiums may rise again in 2024 after a slight decline this year.

Such increases can be a significant burden for many of the 62 million Medicare subscribers who live on fixed incomes. “Real people will be affected,” Mafi said. He contributed to a study that estimated lecanemab and related care would cost Medicare $2 billion to $5 billion a year, making it one of the most expensive taxpayer-funded treatments.

In its analysis, ICER suggested that Leqembi could be cost-effective at an annual price of $8,900 to $21,500. In an interview, David Rind, ICER’s chief medical officer, said $10,000 to $15,000 a year would be reasonable. “Above that range doesn’t seem like a good place,” he said.

Whatever its price, patients may be delayed getting access to Leqembi because of the relative shortage of specialists capable of managing the drug, which will require genetic and neuropsychological testing as well as the PET scan to confirm a patient’s eligibility. A similar drug, Eli Lilly’s donanemab, is likely to win FDA approval this year.

Already there are long waits for the testing needed to assess dementia, Mafi said, noting that one of his patients with mild cognitive impairment had to wait eight months for an evaluation.

Such testing is not readily at hand because of the paucity of effective treatment for Alzheimer’s, which has helped to make geriatrics a relatively unappealing specialty. The United States has about a third as many dementia specialists per capita as Germany, and about half as many as Italy.

“Time is of the essence” for the neuropsychological testing, Mafi said, because once a patient’s cognitive ability declines below a certain threshold, they become ineligible for treatment with the drug, which was tested only in patients in the earliest stages of the disease.

Mafi’s study estimates that patients without supplemental Medicare coverage will have to pay about $6,600 out-of-pocket for each year of treatment. That could put it out of reach for many of the 1 in 7 “dual eligible” Medicare beneficiaries whose income is low enough to simultaneously qualify them for state Medicaid programs. Those programs are responsible for about 20% of physician bills for drug infusions, but they don’t always cover the full amount.

Some practitioners, such as cancer centers, cover their Medicaid losses by receiving higher rates for privately insured patients. But since almost all lecanemab patients are likely to be on government insurance, that “cross-subsidization” is less of an option, said Soeren Mattke, director of the Center for Improving Chronic Illness Care at the University of Southern California.

This poses a serious health equity issue because “dual eligibles are low-income patients with limited opportunities and education, and at higher risk of chronic illnesses including dementia,” Mattke said in an interview. Yet many doctors may not be willing to treat them, he said. “The idea of denying access to this group is just appalling.”

Eisai spokesperson Libby Holman said the company was reaching out to specialists and primary care physicians to make them aware of the drug, and that reimbursement options were improving. Eisai will provide the drug at no cost to patients in financial need, she said, and its “patient navigators” can help lock down insurance coverage.

“A lot of clinicians are excited about the drug, and patients are hearing about it,” said David Moss, chief financial officer of INmune Bio, a company that has another Alzheimer’s drug in development. “It’s a money center for infusion centers and MRI operators. It provides reasons for patients to come into the office, which is a billing thing.”

Outstanding doubts about Leqembi and related drugs have given urgency to efforts to monitor patient experiences. CMS is requiring Leqembi patients to be entered into a registry that tracks their outcomes. The agency has established a registry, but the Alzheimer’s Association, the leading advocacy group for dementia patients, is funding its own database to track those being treated, offering physician practices $2,500 to join it and up to $300 per patient visit.

In a letter to CMS on July 27, a group of policy experts said CMS should ensure that any and all Leqembi registries create and share data detailed enough for researchers and FDA safety teams to obtain a clear picture of the drug’s real-world profile.

The anti-amyloid drugs like lecanemab have created a polarized environment in medicine between those who think the drugs are a dangerous waste of money and those who believe they are a brilliant first step to a cure, said ICER’s Rind, who thinks lecanemab has modest benefits.

“People are as dug in on this as almost anything I’ve ever seen in medicine,” he said. “I don’t think it’s healthy.”

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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