The world is entering a new era of vaccines. Following the success of covid-19 mRNA shots, scientists have a far greater capacity to tailor shots to a virus’s structure, putting a host of new vaccines on the horizon.

The most recent arrivals — as anyone on the airwaves or social media knows — are several new immunizations against respiratory syncytial virus, or RSV.

These shots are welcome since RSV can be dangerous, even deadly, in the very old and very young. But the shots are also expensive — about $300 for those directed at adults, and up to $1,000 for one of the shots, a monoclonal antibody rather than a traditional vaccine, intended for babies. Many older vaccines cost pennies.

So their advent is forcing the United States to face anew questions it has long sidestepped: How much should an immunization that will possibly be given — maybe yearly — to millions of Americans cost to be truly valuable? Also, given the U.S. is one of two countries that permit direct advertising to consumers: How can we ensure the shots get into the arms of people who will truly benefit and not be given, at great expense, to those who will not?

Already, ads on televisions and social media show active retirees playing pickleball or going to art galleries whose lives are “cut short by RSV.” This explains the lines for the shot at my local pharmacy.

But indiscriminate use of expensive shots could strain both public and private insurers’ already tight budgets.

Other developed countries have deliberate strategies for deciding which vulnerable groups need a particular vaccine and how much to pay for it. The U.S. does not, and as specialized vaccines proliferate, public programs and private insurers will need to grapple with how to use and finance shots that can be hugely beneficial for some but will waste precious health dollars if taken by all.

A seasonal viral illness, RSV can cause hospitalization or, in rare cases, death in babies and in people age 75 or older, as well as those with serious underlying medical conditions such as heart disease or cancer. For most people who get RSV, it plays out as a cold; you’ve likely had RSV without knowing it.

But RSV puts about 2% of babies under age 1 in the hospital and kills between 100 and 300 of those under 6 months, because their immune systems are immature and their airways too narrow to tolerate the inflammation. Merely having a bad case of RSV in young childhood increases the risk of long-term asthma.

That’s why Barney Graham, the scientist who spent decades at the government’s National Institutes for Health perfecting the basic science that led to the current shots, said: “The most obvious use is in infants,” not adults.

That’s also why European countries trying to figure out how best to use these vaccines without breaking the bank focused first on babies and determining a sensible price. Though more of the very old may die of RSV, the years of life lost are much greater for the very young. (Babies can get the monoclonal antibody shot or gain protection through a traditional vaccine given to the mother near the end of pregnancy, conferring immunity through the womb.)

A consortium of European experts led by Philippe Beutels, a professor in health economics at the University of Antwerp in Belgium, calculated that the shots would only be “worth it” in terms of the lives saved and hospitalizations averted in infants if the price were under about $80, he said in a phone interview. That’s because almost all babies make it through RSV with supportive care.

The calculation will be used by countries such as Belgium, England, Denmark, Finland, and the Netherlands to negotiate a set price for the two infant shots, followed by decisions on which version should be offered, depending partly on which is more affordable.

They have not yet considered how to distribute the vaccines to adults — considered less pressing — because studies show that RSV rarely causes severe disease in adults who live outside of care settings, such as a nursing home.

Why did the United States and Europe approach the problem from opposite directions?

In the U.S., there was a financial incentive: Roughly 3.7 million babies are born each year, while there are about 75 million Americans age 60 and older — the group for whom the two adult vaccines were approved. And about half of children get their vaccines through the Vaccines for Children program, which negotiates discounted prices.

Also, babies can get vaccinated only by their clinicians. Adults can walk into pharmacies for vaccinations, and pharmacies are only too happy to have the business.

But which older adults truly benefit from the shot? The two manufacturers of the adult vaccines, GSK and Pfizer, conducted their studies presented to the FDA for approval in a population of generally healthy people 60 and older, so that’s the group to whom they may be marketed. And marketed they are, even though the studies didn’t show the shots staved off hospitalization or death in people ages 60 to 75.

That led to what some have called a “narrow” endorsement from the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices for people 60 to 75: Patients in that age range could get the shot after “shared clinical decision-making” with a health provider.

It is likely that because of this fuzzy recommendation, some Americans 60 and over with commercial insurance are finding that their insurers won’t cover it. Under Obamacare, insurers are generally required to cover at no cost vaccines that are recommended by the ACIP; however, if a provider recommends vaccination, then it must be covered by insurance.

(In late September, the ACIP recommended immunization of all babies with either the antibody or the maternal vaccine. Insurers have a year to commence coverage and many have been dragging their feet because of the high price.)

There are better and more equitable ways to steer the shots into the arms of those who need it, rather than simply administering it to those who have the “right” insurance or, swayed by advertising, can pay. For example, insurers, including Medicare, could be required to cover only those ages 60 to 75 who have a prescription from a doctor, indicating shared decision-making has occurred.

Finally, during the pandemic emergency, the federal government purchased all covid-19 vaccines in bulk at a negotiated price, initially below $20 a shot, and distributed them nationally. If, to protect public health, we want vaccines to get into the arms of all who benefit, that’s a more cohesive strategy than the patchwork one used now.

Vaccines are miraculous, and it’s great news that they now exist to prevent serious illness and death from RSV. But using such novel vaccines wisely — directing them to the people who need them at a price they can afford — will be key. Otherwise, the cost to the health system, and to patients, could undermine this big medical win.

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

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

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

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

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Rachel Cohrs
Stat News

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Alice Miranda Ollstein
Politico

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Among the takeaways from this week’s episode:

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

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

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

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

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

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

Also mentioned in this week’s episode:

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

click to open the transcript

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

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

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

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

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

Alice Miranda Ollstein: Good morning.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

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

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

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

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

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

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

Rovner: How rare for a Republican.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Michael Cannon: Great to be here.

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

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

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

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

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

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

Rovner: For many years.

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

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

Rovner: I do not remember.

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: Shoppable services, right?

Cannon: Yeah, what we call shoppable …

Rovner: They’re not emergencies, right?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: It is. Rachel.

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

Rovner: And crazy expensive.

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

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

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

Ollstein: It might.

Rovner: Yeah.

Ollstein: We don’t really know.

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

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

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

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

And here’s another, from Meg Murray:

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

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

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

Rovner: Rachel?

Cohrs: I’m @rachelcohrs on X.

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

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GSK’s recent launch of a new RSV vaccine for adults is emblematic of this move, adding to a portfolio that includes other vaccines, such as the very successful Shingrix for shingles, as well as drugs for HIV, other infectious diseases, and cancer, among others. But what does the growing sentiment against vaccination, not just in the United States but around the world, mean for such a bet on this market?

“It’s a very, very serious issue,” Walmsley said, noting that in 11 U.S. states, basic vaccination rates are now lower than they were before Covid. “The answer can’t be sort of flinging science over the airwaves and saying ‘trust us,’ because people don’t. There is a really serious challenge of misinformation and the ongoing issue of politicization, which I suspect is going to get more challenging in the next year for obvious reasons.”

Continue to STAT+ to read the full story…

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

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

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

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

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Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

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Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

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

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

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

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

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

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

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

Also mentioned in this week’s episode:

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

Click to open the transcript

Transcript: The Open Enrollment Mixing Bowl

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

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

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

Alice Miranda Ollstein: Good morning,

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

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

Joanne Kenen: Hi, everybody.

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

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

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

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

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

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

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

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

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

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

Kenen: You did a great piece on that one.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: There are no compromises in abortion.

Ollstein: Truly, truly.

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

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

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

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

Rovner: Of doing the abortion reversal method …

Ollstein: Exactly. Yes.

Rovner: … of trying to interrupt a medication abortion.

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

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

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

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

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

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

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

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

Rovner: It is absolutely true.

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

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

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

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

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

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

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

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

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

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

Rovner: Like with tobacco.

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

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

Weber: Thank you.

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

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

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

Kenen: Maybe next week.

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

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

Arielle Zionts: Thanks for having me.

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

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

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

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

Rovner: And she’s got kids at home.

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

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

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

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

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

Rovner: For the year?

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

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

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

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

Zionts: Yes.

Rovner: The cost of living is high in Alaska.

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

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

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

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

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

Rovner: Of which Alaska is both.

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

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

Zionts: Thank you for having me.

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

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

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

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

Rovner: Thanks. Lauren?

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

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

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

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

Rovner: Alice?

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

Rovner: Lauren?

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

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

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

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

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

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

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Sarah Karlin-Smith
Pink Sheet

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Victoria Knight
Axios

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Read Victoria's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

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

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

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

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

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

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

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

Also mentioned in this week’s episode:

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

click to open the transcript

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

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

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

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

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

Victoria Knight: Good morning.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

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

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

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

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

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

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

Rovner: Oops.

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

Rovner: Again.

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

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

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

Rovner: Excel spreadsheets.

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

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

Rovner: The APA is the Administrative Procedures Act —

Karlin-Smith: Procedures Act, thank you.

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

Karlin-Smith: Right, and I think —

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: And you have two little ones, right?

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

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

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

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

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

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

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

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

Rovner: California, yeah.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: Yes, please.

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

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

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

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

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

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

Shem: OK.

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

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

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

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

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

Rovner: Really good story.

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

Rovner: Sarah.

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

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

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

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

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

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

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

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

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

Rovner: Lauren.

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

Rovner: Victoria.

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

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

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Why is treating drug-resistant tuberculosis so expensive?

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

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

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

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

Dan Weissmann

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

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

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

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

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

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

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

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

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

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

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

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

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

We are definitely going to tell that story.

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

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

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

And that is part of where this story comes home.

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

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

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

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

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

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

You ready? Here we go…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s next.

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

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

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

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

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

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

Emily: When it’s 74 patents.

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

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

Dan: Uh-huh

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

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

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

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

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

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

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

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

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

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

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

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

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

Dan: So maybe we can update your riddle: 

When is a patent not a patent? 

When it’s 131 patents.

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

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

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

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

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

Dan: Salt formulation.

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

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

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

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

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

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

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

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

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

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

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

Dan: And he was getting kind of discouraged.

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

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

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

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

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

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

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

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

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

Daisy Rosario is our consulting managing producer. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Winer and Blue Dot Sessions.

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

Bea Bosco is our consulting director of operations. 

Sarah Ballema is our operations manager.

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

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

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

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

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This story can be republished for free (details).

The findings stemmed from a multi-state investigation of seven sepsis cases transmitted during blood transfusions. Samples collected between 2018 and 2022 led researchers to platelet collection products made by the company at a plant in Puerto Rico. Ultimately, the facility was the “most probable” source of the cases, according to the report in the CDC’s Emerging Infectious Diseases journal.

Bacterial contamination of platelet components commonly occurs during blood collection and typically involves a single identified species of bacteria. But “multiple episodes” of different bacteria contamination “with identical bacterial species in platelet components across different states is exceedingly rare, suggesting a possible common source of contamination,” the researchers wrote.

Continue to STAT+ to read the full story…

Extending patent protection doesn’t just stretch a drug’s profits — in some cases, doing so can lead to its most significant revenue period, according to a recent analysis published by the Initiative for Medicines, Access & Knowledge, or I-MAK, a nonprofit advocating for drug pricing reforms.

The organization looked at four blockbuster drugs — Humira, Avastin, Rituxan, and Lantus — that had biosimilars launched between 2019 and 2023. On average, each of the drugs in the analysis earned three times the revenue during the patent extension period as they did during the original patent protection period, which gave them an average 13.2 years of unchallenged market presence.

Overall, the drugs made 56% of their overall revenue in the years after the end of the initial patent. In the first 20 years, they made $126 billion of the total $284 billion they earned up until competitors entered the market.

Continue to STAT+ to read the full story…

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

Health and other federal programs are at risk of shutting down, at least temporarily, as Congress races toward the Oct. 1 start of the fiscal year without having passed any of its 12 annual appropriations bills. A small band of conservative House Republicans are refusing to approve spending bills unless domestic spending is cut beyond levels agreed to in May.

Meanwhile, former President Donald Trump roils the GOP presidential primary field by vowing to please both sides in the divisive abortion debate.

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

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Tami Luhby
CNN

@Luhby

Read Tami's stories

Among the takeaways from this week’s episode:

• The odds of a government shutdown over spending levels are rising. While entitlement programs like Medicare would be largely spared, past shutdowns have shown that closing the federal government hobbles things Americans rely on, like food safety inspections and air travel.
• In Congress, the discord isn’t limited to spending bills. A House bill to increase price transparency in health care melted down before a vote this week, demonstrating again how hard it is to take on the hospital industry. Legislation on how pharmacy benefit managers operate is also in disarray, though its projected government savings means it could resurface as part of a spending deal before the end of the year.
• On the Senate side, legislation intended to strengthen primary care is teetering under Bernie Sanders’ stewardship — in large part over questions about how to pay for it. Also, this week Democrats broke Alabama Republican Sen. Tommy Tuberville’s abortion-related blockade of military promotions (kind of), going around him procedurally to confirm the new chair of the Joint Chiefs of Staff.
• And some Republicans are breaking with abortion opponents and mobilizing in support of legislation to renew the United States President’s Emergency Plan for AIDS Relief — including the former president who spearheaded the program, George W. Bush. Meanwhile, polling shows President Joe Biden is struggling to claim credit for the new Medicare drug negotiation program.
• And speaking of past presidents, former President Donald Trump gave NBC an interview over the weekend in which he offered a muddled stance on abortion. Vowing to settle the long, inflamed debate over the procedure — among other things — Trump’s comments were strikingly general election-focused for someone who has yet to win his party’s nomination.

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

Julie Rovner: The Washington Post’s “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic,” by Daniel Gilbert.

Alice Miranda Ollstein: Politico’s “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It,” by Adam Cancryn.

Rachel Cohrs: KFF Health News’ “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice,” by Arthur Allen.

Tami Luhby: CNN’s “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some,” by Brenda Goodman.

Also mentioned in this week’s episode:

• The AP’s “Biden’s Medicare Price Negotiation Is Broadly Popular. But He’s Not Getting Much Credit,” by Seung Min Kim and Linley Sanders.
• Roll Call’s “Sanders, Marshall Reach Deal on Health Programs, but Challenges Remain,” by Jessie Hellmann and Lauren Clason.

CLICK TO EXPAND THE TRANSCRIPT

Transcript: Countdown to Shutdown

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

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Sept. 21, at 9 a.m. because, well, lots of news this week. And as always, news happens fast, and things might well have changed by the time you hear this. So here we go. We are joined today via video conference by Tami Luhby of CNN.

Tami Luhby: Good morning.

Rovner: Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: And Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Let’s get to some of that news. We will begin on Capitol Hill, where I might make a T-shirt from this tweet from Wednesday from longtime congressional reporter Jake Sherman: “I feel like this is not the orderly appropriations process that was promised after the debt ceiling deal passed.” For those of you who might’ve forgotten, many moons ago, actually it was May, Congress managed to avoid defaulting on the national debt, and as part of that debt ceiling deal agreed to a small reduction in annual domestic spending for the fiscal year that starts Oct. 1 (as in nine days from now). But some of the more conservative Republicans in the House want those cuts to go deeper, much deeper, in fact. And now they’re refusing to either vote for spending bills approved by the Republican-led appropriations committee or even for a short-term spending bill that would keep the government open after this year’s funding runs out. So how likely is a shutdown at this point? I would hazard a guess to say pretty likely. And anybody disagree with that?

Ollstein: It’s more likely than it was a week or two ago, for sure. The fact that we’re at the point where the House passing something that they know is dead on arrival in the Senate would be considered a victory for them. And so, if that’s the case, you really have to wonder what the end game is.

Rovner: Yeah, I mean it was notable, I think, that the House couldn’t even pass the rule for the Defense Appropriations Bill, which is the most Republican-backed spending bill, and the House couldn’t get that done. So I mean it does not bode well for the fate of some of these domestic programs that Republicans would, as I say, like to cut a lot deeper. Right?

Cohrs: Democrats are happy, I think, to watch Republicans flail for a while. I think we saw this during the speaker votes. Obviously, a CR [continuing resolution] could pass with wide bipartisan support, but I think there’s a political interest for Democrats going into an election year next year to lean into the idea of the House Republican chaos and blaming them for a shutdown. So I wouldn’t be too optimistic about Democrats billing them out anytime soon.

Rovner: But, bottom line, of course, is that a shutdown is not great for Democrats who support things that the government does. I mean, Tami, you’re watching, what does happen if there’s a shutdown? Not everything shuts down and not all the money stops flowing.

Luhby: No, and the important thing, unlike in the debt ceiling, potentially, was that Social Security will continue, Medicare will continue, but it’ll be very bothersome to a lot of people. There’ll be important things that … potentially chaos at airlines and food safety inspectors. I mean some of them are sometimes considered essential workers, but there’s still issues there. So people will be mad because they can’t go to their national parks potentially. I mean it’s different every time, so it’s a little hard to say exactly what the effects will be and we’ll see also whether this will be a full government shutdown, which will be much more serious than a partial government shutdown, although at this point it doesn’t look like they’re going to get any of the appropriation bills through.

Rovner: I was going to say, yeah, sometimes when they get some of the spending bills done, there’s a partial shutdown because they’ve gotten some of the spending bills done, but I’m pretty sure they’ve gotten zero done now. I think there’s one that managed to pass both the House and the Senate, but basically this would be a full shutdown of everything that’s funded through the appropriations process. Which as Tami points out, the big things are the Smithsonian and the National Zoo close, and national parks close, but also you can’t get an awful lot of government services. Meanwhile, the ill will among House Republicans is apparently rubbing off on other legislation. The House earlier this week was supposed to vote on a relatively noncontroversial package of bills aimed at making hospital insurance and drug prices more transparent, among other things. But even that couldn’t get through. Rachel, what happened to the transparency bill that everybody thought was going to be a slam-dunk?

Cohrs: Well, I don’t think everybody thought it was going to be a slam-dunk given the chaos that we saw, especially in the Democratic Caucus last week, where one out of three chairmen who work on health care in the House endorsed the package, but the other two would not. And they ran into a situation where, with the special rule that they were using to consider the House transparency package, they needed two-thirds vote to pass and they couldn’t get enough Democrats on board to pass it. And I think there were some process concerns from both sides that there was a compromise that came out right after August recess and it hadn’t been socialized properly and they didn’t have their ducks in a row in the Democratic side. But ultimately, I mean, the big picture for me I think was how hard it really is to take on the hospital industry. Because this was the first real effort I think from the House and it melted down before its first vote. That doesn’t mean it’s dead yet, but it was an embarrassment, I think, to everyone who worked on this that they couldn’t get this pretty noncontroversial package through. And when I tried to talk to people about what they actually oppose, it was these tiny little details about a privacy provision or one transparency provision and not with the big idea. It wasn’t ideological necessarily. So I think it was just a reflection on Congress has taken on pharma, they’re working on PBMs this year, but if they really do want to tackle hospital costs, which are a very big part of Medicare spending, it’s going to be a tough road ahead for them.

Rovner: As we like to point out, every single member of Congress has a hospital in their district, and they are quick to let their members of Congress know what they want and how they want them to vote on things. Before we move on, where are we on the PBM legislation? I know there was a whole raft of hearings this week on doing something about PBMs. And my inbox is full of people from both sides. “The PBMs are making drug prices higher.” “No, the PBMs are helping keep drug prices in check.” Where are we with the congressional effort to try and at least figure out what the PBMs do?

Cohrs: Yeah, I think there is still some disarray at this point. I would watch for action in December or whenever we actually have a conversation about government funding because some of these PBM bills do save money, which is the golden ticket in health care because there are a lot of programs that need to be paid for this year. So Congress will continue to debate those over the next couple of weeks, but I think everyone that I talk to is expecting potential passage in a larger package at the end of the year.

Rovner: So speaking of things that need to be paid for, the saga of Sen. Bernie Sanders and the reauthorization of some key primary care programs, including the popular community health center program, continues. When we left off last July, Sen. Sanders, who chairs the Senate Health, Education, Labor & Pensions Committee [HELP], tried to advance a bill to extend and greatly expand primary care programs without negotiating with his ranking Republican on the committee, Louisiana Sen. Bill Cassidy, who had his own bill to renew the programs. Cassidy protested and blocked the bill’s movement and the whole enterprise came to a screeching halt. Last week, Sanders announced he’d negotiated a bipartisan bill, but not with Cassidy, rather with Kansas Republican Roger Marshall, who chairs the relevant subcommittee. Cassidy, however, is still not pleased. Rachel, you’re following this. Sanders has scheduled a markup of the bill for later today. Is it really going to happen?

Cohrs: Well, I think things are on track and the thing to remember about a markup is it passes on a majority. So as long as Sen. Sanders can keep his Democratic members in line and gets Sen. Marshall, then it can pass committee. But I think there are some concerns that other Republicans will share with Sen. Cassidy about how the bill is paid for. There are a lot of ambitious programs to expand workforce training, have debt forgiveness, and address the primary care workforce crisis in a more meaningful way. But the list of pay-fors is a little undisciplined from what I’ve seen, I would say.

Rovner: That’s a good word.

Cohrs: Sen. Sanders is pulling some pay-fors from other committees, which he can’t necessarily do by himself, and they don’t actually have estimates from the Congressional Budget Office for some of the pay-fors that they’re planning to use. They’re just using internal committee math, which I don’t think is going to pass muster with Republicans in the full Senate, even if it gets through committee today. So I think we’ll see some of those concerns flare up. It could get ugly today compared with HELP markups of the past of community health center bills. And there are certainly some concerns about the application of the Hyde Amendment too, and how it would apply to some of this funding as it moves through the appropriations process.

Rovner: That’s the amendment that bans direct government funding of abortion, and there’s always a fight about the Hyde Amendment, which are reauthorizing these health programs. But I mean, we should point out, I mean this is one of the most bipartisanly popular programs, both the community health center program and these programs that basically give federal money to train more primary care doctors, which the country desperately needs. I mean, it’s something that pretty much everybody, or most of Congress, supports, but Cassidy has what, 60 amendments to this bill. I guess he’s really not happy. Cassidy who supports this in general just is unhappy with this process, right?

Cohrs: I think his concern is more that the legislation is half-baked, not that he’s against the idea of it. And Sen. Cassidy did sign on to a more limited House proposal as well, just saying, we need to fund the community health centers, we need to do something. This isn’t ready for prime time. We could see further negotiations, but the time is ticking for this funding to expire.

Rovner: Well, another program whose authorization expires at the end of the month is PEPFAR, the international AIDS/HIV program. It’s being blocked by anti-abortion activists among others, even though it doesn’t have anything to do with the abortion. And this is not just a bipartisan program, it’s a Republican-led program. Former President George W. Bush who signed it into law in 2003, had an op-ed this week pushing for the program in The Washington Post. Alice, you’ve been following this one. Is there any progress on PEPFAR?

Ollstein: Yes and no. There’s not a vote scheduled, there’s not a “Kumbaya” moment, but we are seeing some movement. I call it “Establishment Republican Strike Back.” You have some both on- and off-the-Hill Republicans really mobilizing to say, “Look, we need to reauthorize this program. This is ridiculous.” And they’re going against the anti-abortion groups and their allies on Capitol Hill who say, “No, let’s just extend this program just year by year through appropriations, not a reauthorization.” Which they say would rubber-stamp the Biden administration redirecting money towards abortion, which the Biden administration and everybody else denies is happening. And so we confirmed that Chairman Mike McCaul in the House and Lindsey Graham in the Senate are working with Democrats on some sort of reauthorization bill. It might not be the full five years, it might be three years, we don’t really know yet. But they think that at least a multiyear reauthorization will give the program some stability rather than the one-year funding patch that other House Republicans are mulling. So we’re going to see where this goes; obviously, it’s an interesting test for the influence of these anti-abortion groups on Capitol Hill. And my colleague and I also scooped that former President Bush, who oversaw the creation of this program, is quietly lobbying certain members, having meetings, and so we will see what kind of pull he still has in the party.

Rovner: Well, this was one of his signature achievements, literally. So it’s something that I know that … and we should point out, unlike the spending bills, the appropriation bills, if this doesn’t happen by Oct. 1, nothing stops, it’s just it becomes theoretically unauthorized, like many programs are, and it’s considered not a good sign for the program.

Luhby: One thing I also wanted to just bring up quickly, tangentially related to health care, but also showing how bipartisan programs are not getting the support that they did, is the WIC program, which is food assistance for women, infants and children, needs more money. Actually participation is up, but even before that, the House Republicans wanted to cut the funding for it, and that was going to be a big divide between them and the Senate. And now because participation is up, the Biden administration is actually asking for another $1.4 billion for the program. This is a program that, again, has always had support and has been fully funded, not had to turn people away. And now it’s looking that many women and small children may not be able to get the assistance if Congress isn’t able to actually fund the program fully.

Rovner: Yes, they’re definitely tied in knots. Well, Oct. 1 turns out to be a key date for a lot of health care issues. It’s also the day drugmakers are supposed to notify Medicare whether they will participate in negotiations for the 10 high-cost drugs Medicare has chosen for the first phase of the program that Congress approved last year. But that might all get blocked if a federal judge rules in favor of a suit brought by the U.S. Chamber of Commerce, among others. Rachel, there was a hearing on this last week, where does this lawsuit stand and when do we expect to hear something from the judge?

Cohrs: So the judge didn’t ask any questions of the attorneys, so they were essentially presenting arguments that we’ve already seen previewed in some of the briefing materials. We are expecting some action by Oct. 1, which is when the Chamber had requested a ruling on whether there’s going to be a preliminary injunction, just because drugmakers are supposed to sign paperwork and submit data to CMS by that Oct. 1 date. So I think we are just waiting to see what the ruling might be. Some of the key issues or whether the Chamber actually has standing to file this lawsuit, given it’s not an actual drug manufacturer. And there was some quibbling about what members they listed in the lawsuit. And then I think they only addressed the argument that the negotiation program violated drugmakers’ due process rights, which isn’t the full scope of the lawsuit. It’s not an indicator of success really anywhere else, but it is important because it is the very first test. And if a preliminary injunction is issued, then it brings everything to a halt. So I think it would be very impactful for other drugmakers as well.

Rovner: Nobody told me when I became a health reporter that I was going to have to learn every step of the civil judicial process, and yet here we are. Well, while we are still on the subject of drug prices, a new poll from the AP and the NORC finds that while the public, Republicans and Democrats, still strongly support Medicare being able to negotiate the price of prescription drugs, President [Joe] Biden is getting barely any credit for having accomplished something that Democrats have been pushing for for more than 20 years. Most respondents in the survey either don’t think the plan goes far enough, because, as we point out, it’s only the first 10 drugs, or they don’t realize that he’s the one that helped push it over the finish line. This should have been a huge win and it’s turning out to be a nothing. Is that going to change?

Ollstein: It’s kind of a “Groundhog Day” of the Obamacare experience in which they pass this big, huge reform that people had been fighting for so long, but they’re trying to campaign on it when people aren’t really feeling the effects of it yet. And so when people aren’t really feeling the benefit and they’re hearing, “Oh, we’re lowering your drug prices.” But they’re going to the pharmacy and they’re paying the same very high amount, it’s hard to get a political win from that. The long implementation timeline is against them there. So there are some provisions that kick in more quickly, so we’ll have to see if that makes any kind of difference. I think that’s why you hear them talk a lot about the insulin price cap because that is already in effect, but that hits fewer people than the bigger negotiation will theoretically hit eventually. So it’s tough, and I think it leaves a vacuum where the drug industry and conservatives can fearmonger or raise concerns and say, “This will make drugs inaccessible and they won’t submit new cures for approval.” And all this stuff. And because people aren’t feeling the benefits, but they’re hearing those downsides, yeah, that makes the landscape even tougher for Democrats.

Luhby: This is very much the pattern that the Biden administration has had with a lot of its achievements or successes because it’s also not getting any credit for anything in the economy. The job market is relatively strong still, the economy is relatively strong. Yes, we have high inflation and high prices, even though that’s moderated, prices are still high, and that’s what people are seeing. Gas prices are now up again, which is not good for the administration. But they’re touting their Bidenomics, which also includes lowering drug prices. But generally polling shows, including our CNN polling shows, that people do not think the economy is doing well and they’re not giving Biden any credit for anything.

Cohrs: I think part of the problem is that … it’s different from the Affordable Care Act where it was health care, health care, health care for a very long time. This is lumped into a bill called the Inflation Reduction Act. I think it got lumped in with climate, got looped in with tax. And the media, we did our best, but it was hard to explain everything that was in the bill. And Medicare negotiation is complicated, it’s wonky, and I don’t know that people fully understood everything that was in the Inflation Reduction Act when it passed and they capitulated to Sen. [Joe] Manchin for what he wanted to name it. And so I think some of that got muddled when it first passed and they’re kind of trying to do catch-up work to explain, again, like Alice said, something that hasn’t gone into effect, which is a really tough uphill climb.

Rovner: This has been a continuing frustration for Democrats, which is that actually getting legislation done in Washington always involves some kind of compromise, and it’s always going to be incremental. And the public doesn’t really respond to things that are incremental. It’s like, “Why isn’t it bigger? Why didn’t they do what they promised?” And so the Republicans get more credit for stopping things than the Democrats get for actually passing things. Right. Well, let us turn to abortion. The breaking news today is that the Senate is finally acting to bust the blockade Alabama Republican Sen. Tommy Tuberville has had on military promotion since February to protest a Defense Department policy allowing service people leave to travel to other states for abortions. And Tuberville himself is part of this breakage, right, Alice? And it’s not a full breakage.

Ollstein: Right. And there have also been some interesting interviews that maybe raise questions on how much Tuberville understands the mechanics of what he’s doing because he said in an interview, “Oh, well, the people who were in these jobs before, they’ll just stay in it and it’s fine.” And they had to explain, “Well, statutorily, they can’t after a certain date.” And he seemed surprised by that. And now you’re seeing these attempts to go around his own blockade, and Democrats to go around his blockade. In part, for a while, Democrats were really not wanting to do that, schedule these votes, until he fully relented because they thought that would increase the pressure.

Rovner: They didn’t want to do it nomination by nomination for the big-picture ones because they were afraid that would leave behind the smaller ones.

Ollstein: Exactly. But this is dragging on so long that I think you’re seeing some frustration and desire to do something, even if it’s not fully resolving the standoff.

Rovner: And I’m seeing frustration from other Republicans. Again, the idea of a Republican holding up military promotions for six months is something that was not on my Republican Bingo card five years ago or even two years ago. I’m sure he’s not making a lot of his colleagues very happy with this. So on the Republican presidential campaign trail, abortion continues to be a subject all the candidates are struggling with — all of them, it seems, except former President Donald Trump, who said in an interview with NBC on Sunday that he alone can solve this. Francis, you have the tape.

Donald Trump: We are going to agree to a number of weeks or months or however you want to define it, and both sides are going to come together, and both sides, and this is a big statement, both sides will come together and for the first time in 52 years, you’ll have an issue that we can put behind us.

Rovner: OK. Well, Trump — who actually seemed all over the place about where he is on the issue in a fairly bald attempt to both placate anti-abortion hardliners in the party’s base and those who support abortion rights, whose votes he might need if he wants to win another election — criticized his fellow Republicans, who he called, “inarticulate on the subject.” I imagine that’s not going over very well among all of the other Republican candidates, right?

Ollstein: We have a piece up on this this morning. One, Trump is clearly acting like he has already won the primary, so he is trying to speak to a general audience, as you noted, and go after those votes in the middle that he may need and so he’s pitching this compromise. And we have a piece that the anti-abortion groups are furious about this, but they don’t really know what to do about it because he probably is going to be the nominee and they’re probably going to spend tens of millions to help elect him if he is, even though they’re furious with these comments he’s making. And so it’s a really interesting moment for their influence. Of course, Trump is trying to have it both ways, he also is calling himself the most pro-life president of all time. He is continually taking credit for appointing the justices to the Supreme Court who overturned Roe v. Wade.

Rovner: Which he did.

Ollstein: Exactly.

Rovner: Which is true.

Ollstein: Which he definitely did. But he is not toeing the line anymore that these groups want. These groups want him to endorse some sort of federal ban on abortion and they want him to praise states like Florida that have passed even stricter bans. He is not doing that. And so there’s an interesting dynamic there. And now his primary opponents see this as an opening, they’re trailing him in the polls, and so they’re trying to capitalize on this. [Gov. Ron] DeSantis and a bunch of others came out blasting him for these abortion remarks. But again, he’s acting like he’s already won the primary, he’s brushing it off and ignoring them.

Rovner: I love how confident he is though, that there’s a way to settle this — really, that there is a compromise, it’s just nobody’s been smart enough to get to it.

Ollstein: Well, he also, in the same interview, he said he’ll solve the Ukraine-Russia war in a day. So I mean, I think we should consider it in that context. It was interesting when I talked to all these different anti-abortion groups, they all said the idea of cutting some sort of deal is ludicrous. There is no magic deal that everybody would be happy about. If anything …

Rovner: And those on the other side will say the same thing.

Ollstein: Exactly. How could you watch what’s happened over the past year or 30 years and think that’s remotely possible? However, they did acknowledge that him saying that does appeal to a certain kind of voter, who is like, “Yeah, let’s just compromise. Let’s just get past this. I’m sick of all the fighting.” So it’s another interesting tension.

Rovner: Yeah. And I love how Trump always says the quiet part out loud, which is that this is not a great issue for Republicans and they’re not talking about it right. It’s like Republicans know this is a not-great issue for Republicans, but they don’t usually say that in an interview on national television. That is Trump, and this will continue. Well, finally this week I wanted to talk about what I am calling the dark underbelly of the new weight loss drugs. This is my extra credit this week. It’s a Washington Post story by Daniel Gilbert called “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic.” It’s about the huge swell of sometimes not-so-legitimate websites and wellness spas selling unapproved formulations of semaglutide and tirzepatide — better known by their brand names Ozempic, Wegovy, and Mounjaro — to unsuspecting consumers because the demand for these diabetes drugs is so high for people who want to lose weight. The FDA has declared semaglutide at least to be in shortage for the people it was originally approved for, those with Type 2 diabetes. But that designation legally allows compounding pharmacies to manufacture their own versions, at least in some cases, except to quote the piece, “Since then, a parallel marketplace with no modern precedent has sprung up attracting both licensed medical professionals and entrepreneurs with histories ranging from regulatory violations to armed robbery.” Meanwhile, and this is coming from a separate story, both Eli Lilly and Novo Nordisk, the manufacturers of the approved versions of the drugs, are suing companies they say are selling unapproved versions of their drug, including, in some cases, drugs that actually pretend to be the brand name drug that aren’t. This is becoming really a big messy buyer-beware market, right? Rachel, you guys have written about this.

Cohrs: It has. Yeah, my colleagues have done great coverage, including I think the lawsuit by manufacturers of these drugs who are seeing their profits slipping through their fingers as patients are turning to these alternatives that aren’t necessarily approved by the FDA. And I think there are also risks because we have seen some side effects from these medications; they range from some very serious GI symptoms to strange dreams. There’s just a whole lot going on there. And I think it is concerning that some patients are getting ahold of these medications, which are expensive if you’re buying them the traditional way. And again, for weight loss, I think some of these medications are still off-label, they’re not FDA-approved. So if they’re getting these without any supervision from a medical provider or somebody who they can ask when they have questions that come up and are monitoring for some of these other side effects, then I think it is a very dangerous game for these patients. And I think it’s just a symptom of this outpouring of interest and the regulators’, I think, failure to keep up with it. And there’s also some supply concerns. So I think it’s just this perfect storm of desperation from patients and the bureaucracy struggling to keep up.

Rovner: Yeah. One of the reasons I chose the story is I really feel like this is unprecedented. I mean, I suppose it could have been predicted because these drugs do seem to be very good at what they do and they are very expensive and very hard to get, so not such a surprise that not-so-honest people might spring up to try and fill the void. But it’s still a little bit scary to see people selling heaven only knows what to people who are very anxious to take things.

Luhby: And in related news, there are more doctors who are interested in obesity medicine now, so everyone is trying to cash in.

Rovner: Yeah, I mean, eventually I imagine this will sort itself out. It’s just that at the beginning when it’s so popular, although I will still … I keep thinking this, is the solution to really throw this much money at it or to try to figure out how to make these drugs cheaper? If it’s going to be such a societal good, maybe we should do something about the price. Anyway, that is my extra credit in this week’s news. Now we will take a quick break and then we’ll come back with the rest of our extra credits.

Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.

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

Luhby: Sure. Well, this week I chose a good story by one of my colleagues, Brenda Goodman. It’s titled “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some.” And we’ve all been hearing this, I heard this from a friend of mine who’s a doctor, we know Cynthia Cox at KFF tweeted about this. And that even though the new vaccines are ready and the Biden administration has been pushing people to go get them, and many people are eager to get them, they’re not so easy to get. Either because drugstores are running out, that’s what happened to my friend. She went in and said there just wasn’t any supply available. Or for some other people, they’re supposed to be free for most Americans, but the insurance companies haven’t caught up with that yet. So they go in and either they’re denied or the pharmacy tells them that they have to pay potentially $200 for the vaccines. So the problem here is that there’s already an issue with getting vaccines and people getting vaccinated in this country and then putting up extra hurdles for them will only cause more problems and cause fewer people to get vaccinated because some people may not come back.

Rovner: Talk about something that should have been predictable. The distributors knew it was going to be available and pretty much when, and the insurance companies knew it was going to be available and pretty much when, and yet somehow they seem to have not gotten their act together when the predictable surge of people wanting to get the vaccine early came about. Alice, you wanted to add something?

Ollstein: Just anecdotally, the supply and the demand are completely out of whack. My partner is back home in Alabama right now and he was at a pharmacy where they were just wandering around asking random people, “Will you take the shot? Will you take the shot?” And a bunch of people were saying, “No.” And meanwhile, here in D.C., myself and everyone I know is just calling around wanting to get it and not able to. And so you think we’d have figured this out better after so many years of this.

Rovner: Well, I have an appointment for tomorrow. We’ll see if it happens. Rachel, why don’t you go next?

Cohrs: Sure. I chose a KFF Health News story by Arthur Allen, and the headline is “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice.” And I just love a story where it’s off the news cycle a little bit and we see this big splashy announcement. And I think Arthur did a great job of following up here and seeing what actually was happening with formulary placement for Humira and the new biosimilars that just came on the market.

Rovner: Yep. Remind us what Humira is?

Cohrs: Oh, yeah. So it’s one of the most profitable drugs ever. The company that makes it, AbbVie, had created this big patent thicket to try to prevent it from competition for a very long time, but this year saw competition that had been on the market in Europe finally come online in the U.S. So again, a big change for AbbVie, for the market. But I think there was concern about whether people would actually switch to these new medications that have lower prices. But again, as it gets caught up and spit out of our drug supply chain, there are a whole lot of incentives that don’t necessarily result in the cheaper medication being prescribed. And Arthur found that Express Scripts and Optum, which are two of the three biggest pharmacy benefit managers, have the biosimilar versions of Humira at the same price as Humira. So that doesn’t really create a lot of incentive for people to switch. So I think it was just great follow-up reporting and we don’t really have a lot of visibility into these formularies sometimes. So I think it was a illuminating piece.

Rovner: Yeah. And the mess that is drug pricing. Alice.

Ollstein: So I also chose a great piece by my colleague Adam Cancryn and it’s called “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It.” It’s part of a series we’re doing on anti-vax sentiment and its impacts. And this is just going into how the Biden administration really doesn’t have a plan for combating this, even as it’s posing a bigger and bigger public health threat. And some of their attempts to go after misinformation online were stymied in court and they also are struggling with not wanting to elevate it by debunking it — that that age-old tension of, is it better to just ignore it or is it better to combat it directly? A lot of this is also tying into RFK Jr.’s presidential bid and how much to acknowledge that or not. But the impact is that they’re not really taking this on, even as it’s getting worse and worse in the country.

Rovner: And I got a bunch of emails this week about the anti-vax movement spreading to pets — that people are now resisting getting their dogs and cats vaccinated. Seriously. I mean, it is a serious problem. Obviously, if people stop getting rabies vaccines, that could be a big deal. So something else to watch. All right. Well, I already did my extra credit. So that is it for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our indefatigable engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me; I’m still @jrovner on X and on Bluesky. Tami?

Luhby: You can tweet me at @Luhby. I sometimes check it still.

Rovner: Rachel.

Cohrs: I’m on X @rachelcohrs.

Rovner: Alice.

Ollstein: I’m @AliceOllstein.

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

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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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