The Host

Julie Rovner
KFF Health News

@jrovner

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

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

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

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

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Victoria Knight
Axios

@victoriaregisk

Read Victoria's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

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

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

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

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

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

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

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

Also mentioned in this week’s episode:

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

click to open the transcript

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

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

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

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

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

Victoria Knight: Good morning.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

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

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

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

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

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

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

Rovner: Oops.

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

Rovner: Again.

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

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

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

Rovner: Excel spreadsheets.

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

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

Rovner: The APA is the Administrative Procedures Act —

Karlin-Smith: Procedures Act, thank you.

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

Karlin-Smith: Right, and I think —

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: And you have two little ones, right?

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

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

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

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

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

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

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

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

Rovner: California, yeah.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: Yes, please.

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

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

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

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

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

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

Shem: OK.

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

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

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

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

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

Rovner: Really good story.

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

Rovner: Sarah.

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

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

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

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

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

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

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

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

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

Rovner: Lauren.

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

Rovner: Victoria.

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

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

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Why is treating drug-resistant tuberculosis so expensive?

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

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

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

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

Dan Weissmann

@danweissmann

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

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

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.

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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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The Host

Julie Rovner
KFF Health News

@jrovner

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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.

Congress returns from its August recess with a long list of things to do and not a lot of time to do them. The fiscal year ends Sept. 30, and it’s possible that lawmakers will fail to finish work not only on the annual appropriations bills, but also on any short-term spending bill to keep the government open.

Meanwhile, Medicare has announced the first 10 drugs whose prices will be negotiated under the Inflation Reduction Act of 2022. Exactly how the program will work remains a question, however. Even how the process will begin is uncertain, as drugmakers and other groups have filed lawsuits to stop it.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Alice Miranda Ollstein of Politico.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Among the takeaways from this week’s episode:

• Hard-line Republicans are refusing to back even a temporary government spending bill, suggesting a government shutdown looms — with repercussions for health programs. While the Senate and House have come to intra-chamber agreements on subjects like community health center funding or even have passed spending bills, Congress as a whole has been unable to broker an overarching deal.
• A coalition of House Republicans is falsely claiming that global HIV/AIDS funding through PEPFAR promotes abortion and is battling efforts to extend the program’s funding. PEPFAR is a bipartisan effort spearheaded by then-President George W. Bush and credited with saving millions of lives.
• The PEPFAR fight underscores the dysfunction of the current Congress, which is struggling to fund even a highly regarded, lifesaving program. Another example is the months-long blockade of military promotions by a freshman Republican senator, Alabama’s Tommy Tuberville, a member of the Senate Armed Services Committee. His objections over an abortion-related Pentagon policy have placed him at odds with top military leaders, who recently warned that his heavy-handed approach is weakening military readiness.
• The Biden administration recently announced new staffing requirements for nursing homes, as a way to get more nurses into such facilities. But how long will compliance take, considering ongoing nursing shortages? And the drug industry is reacting to the news of which 10 drugs will be up first for Medicare negotiation, with much left to be sorted out.
• In abortion news, a Texas effort to block patients seeking abortions from using the state’s roads is spreading town to town — and, despite being dubiously enforceable, it could still have a chilling effect.

Also this week, Rovner interviews Meena Seshamani, who leads the federal Medicare program, about the plan to start negotiating drug prices.

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

Julie Rovner: JAMA Health Forum’s “Health Systems and Social Services — A Bridge Too Far?” by Sherry Glied and Thomas D’Aunno.

Alice Miranda Ollstein: The Washington Post’s “Heat’s Hidden Risk,” by Shannon Osaka, Erin Patrick O’Connor, and John Muyskens.

Rachel Cohrs: The Wall Street Journal’s “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins.

Joanne Kenen: Politico’s “How to Wage War on Conspiracy Theories,” by Joanne Kenen, and “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign,” by Kevin McGill.

Also mentioned in this week’s episode:

• The Washington Post’s “Highways Are the Next Antiabortion Target. One Texas Town Is Resisting,” by Caroline Kitchener.
• KFF Health News’ “Biden Administration Proposes New Standards to Boost Nursing Home Staffing,” by Jordan Rau.
• Stat’s “The Curious Case of J&J’s Stelara, The Unluckiest Drug on Medicare’s List,” by Rachel Cohrs.

Click to open the transcript

Transcript: Welcome Back, Congress. Now Get to Work.

[Editor’s note: This transcript, generated using transcription software, 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. 7, 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 Rachel Cohrs of Stat News.

Rachel Cohrs: Good morning.

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

Joanne Kenen: Hi, everybody.

Rovner: And Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Later in this episode, we’ll have an interview with Meena Seshamani, who runs the Medicare program for the federal government, with an update on the Medicare drug negotiation debate as, we’ll discuss, the first 10 drugs that will be subject to negotiation were announced last week. But first, this week’s news. So Labor Day is behind us, and Congress is back — sort of. The Senate is back. The House returns next week. And there are lots of questions to be answered this fall, starting with whether or not Congress can finish the annual spending bills before the start of fiscal 2024 on Oct. 1. Spoiler: They cannot. But there’s also a real question whether Congress can even pass a short-term bill to keep the government running while lawmakers continue to work on the rest of the appropriations. As of now, what do you guys think are the odds that we’re going to end up with some kind of government shutdown at the end of the month?

Ollstein: Well, it’s whether it happens at the end of the month or at the end of the year, really. Folks seem pretty convinced that it will happen at some point. It could be short-lived. But, yeah, like you said, you have some hard-line House Republicans who say they won’t support even a temporary stopgap bill without spending cuts, policy changes, without sort of extracting some of their demands from leadership. And you could work around that in the House by cobbling together a coalition of Republicans and Democrats. But that also puts [House Speaker Kevin] McCarthy’s leadership in jeopardy. And so, we’re having sort of the same dynamic play out that we saw earlier this year, trying to navigate between the hard-line House Republicans and, you know, the more vulnerable swing districts’ members. So it’s … tough.

Rovner: Yeah, it’s the Republicans from districts that [President Joe] Biden won … basically.

Ollstein: Yeah. And so you have this weird game of chicken right now where both the House and Senate are trying to pass whatever they can to give themselves more leverage in the ultimate House-Senate negotiations. They think, OK, if we pass five bills and they only pass one, you know, then we have the upper hand. So we’ll see where that goes.

Rovner: It’s funny, because the Senate has been a well-oiled machine this year on the spending bills, which is unusual. I was about to say I will point out that there are two women: the chairman and ranking member. But that’s actually also true in the House. We do have women running the appropriations process this year. But I was amused that Kevin McCarthy, sometime during August, a couple of weeks ago, said, you know, very confidently, well, we’ll pass a short-term spending bill. You know, we won’t let the government shut down. And by the next day, the hard-line Republicans, the right wing, were saying, yeah, no you won’t. You’re going to have to deal with us first. And, obviously, there’s lots of health stuff that’s going to get caught up in that. The end of the fiscal year also marks the end of funding authority for a number of prominent programs. This is not the same as the appropriations programs whose authorizations lapse can continue, although things can get complicated. PEPFAR, the two-decade-old bipartisan program that provides AIDS and HIV prevention and treatment around the world, is one of those programs that, at least as of now, looks pretty stuck. Alice, is there any movement on this? We’ve talked about it before.

Ollstein: Not yet. So the latest we know, and we got this last night, is that [Foreign Relations Committee] Chairman [Bob] Menendez in the Senate is floating a new compromise. Basically, supporters of PEPFAR have been pushing for the full five-year standard reauthorization. And a coalition of House Republicans who are claiming that PEPFAR money is going to abortion say they want no reauthorization at all. They just want the program to sort of limp along through appropriations. So between five years and zero, Menendez is now suggesting a three-year extension. There is a huge desire not to just have the one-year funding patch because that would kick all of this into the heat of the 2024 season. And if you think the debate is ugly now over abortion and federal spending, just wait until 2024.

Kenen: I mean, this … [unintelligible] money … it’s saved tens of millions of lives — and with bipartisan support in the past.

Rovner: It was a Republican initiative.

Kenen: Right. It was President Bush, George the second.

Rovner: George W. Bush. Yeah.

Kenen: And they’re not saying they’re actually going out and using the AIDS dollars to conduct, to actually do abortions. They’re saying that there’s, you know, they’re in the world of abortion and they’re promoting abortion, etc., etc. So the conversation gets really, really, really, really muddled. Under U.S. law, they cannot use U.S. dollars for abortion under the Hyde Amendment, you know, all sorts of other foreign policy rules. So it’s hard to overstate how important this program has been, particularly in Africa. It has saved millions and millions of lives. And I think Alice might have broken the story originally, but it got caught up in abortion politics, and it caught people by surprise. This is not something … everything in Washington gets caught up in politics, except this! So I think it’s been quite shocking to people. And it’s, I mean — life-and-death sounds like a, you know, it’s a Washington cliché — this is life-and-death.

Ollstein: Yeah, absolutely. And, you know, even though the program won’t shut down if they don’t manage to get a reauthorization through, you know, I talked to people who run PEPFAR services in other countries, and they said that, you know, having this year-to-year funding and instability and uncertainty — you know, they won’t be able to hire, they won’t be able to do long-term planning. They said this will really undermine the goal to eliminate HIV transmission by 2030.

Cohrs: Oh, I actually did just want to jump in about another Sept. 30 deadline, because there was a big development this week. I know we were just talking about long-term planning. There is funding for community health centers that’s expiring at the end of September as well. DSH cuts could go into effect for hospitals. We do this routine every so often, but the House is actually more in step than the Senate on this issue; they released — at least Republicans released — a draft legislation, where all three committees of jurisdiction are in agreement about how to proceed. There are some transparency measures in there.

Rovner: The three committees in the House.

Cohrs: In the House. Yes, yes, we’re talking about the House. Yeah. So, they have reconciled their differences here and are hoping to go to the floor this month. So, I think they are out of the gate first, certainly with some sort of longer-term solution here. Again, could get punted. But I think it is a pretty big development when we’re talking about these extenders that the industry cares about very much.

Kenen: Congress is so polarized that it can’t even do the things that it agrees on. And we have seen this before where CHIP [Children’s Health Insurance Program] got caught up a few years ago. Community health clinics have gotten caught right in that same bill, right? But, you know, we really have this situation where it’s so dysfunctional they can’t even move fully on things that everybody likes. And community health centers date back to the early ’60s. However, they got a really big expansion, again, under second President Bush. And they’re popular, and they serve a need, and everybody likes them.

Rovner: They got a bigger expansion under the Affordable Care Act.

Kenen: Right, but they, you know — but I think that the Bush years was like the biggest in many years. And then they got more. So again, I mean, are they going to shut their doors? No. Is it going to be a mess? It is already a mess. They can’t — they don’t know what’s coming next. That’s no way to run a railroad or a health clinic.

Rovner: All right, well, one more while we’re on the subject of abortion-related delays: Alabama Sen. Tommy Tuberville is still blocking Senate approval of routine military promotions to protest the Biden administration’s policy of allowing funding for servicewomen and military dependents to travel for abortions if they’re posted to states where it’s banned. Now, the secretaries of the Army, Navy, and Air Force are joining together to warn that Tuberville’s hold is threatening military readiness. Tuberville apparently went on Fox News last night and said he’s got more people who are coming to support him. Is there any end to this standoff in sight? I mean, people seem to be getting kind of upset about it. It’s been going on since, what, February?

Ollstein: Yeah, there is not yet an end in sight. So far, all of the attempts to pressure Tuberville to back down have only hardened his resolve, it seems, you know, and he’s gone beyond sort of his original statement of, you know, all of this is just to get rid of this policy that doesn’t pay for abortions; it just allows people to travel out of state if they’re stationed — they don’t get to choose where they’re stationed — if they’re stationed somewhere where abortion is not legal or accessible. And so now he’s making claims about other things in the military he considers too woke. He’s criticized some of these individual nominees themselves that he’s blocking, which was not sort of part of the original stand he took. And so, it’s tough, and there isn’t enough floor time to move all of these and go around him. And so this pressure campaign doesn’t seem to be really making any headway. So I don’t really see how this gets resolved at this point.

Kenen: Except that other Republicans are getting a little bit more public. I mean, they were sort of letting him run out for a while. And there’s more Republicans who are clearly getting enough of this. But I mean, unless McConnell can really get him to move — and we don’t know what’s gone on behind closed doors, but we’re certainly not seeing any sign of movement. In fact, as Alice said, he’s digging in more. I mean, like, Marines and woke are not the two words you usually hear in one sentence, but in his worldview, they are. So, I think it’s unprecedented. I mean, I don’t think anyone’s ever done this. It’s not like one or two people. It’s like the entire U.S. military command can’t move ahead.

Rovner: I’ve been doing this a very long time, and I don’t remember anything quite like this. Well, the one thing that we do expect to happen this fall is legislation on — and Rachel, you were referring to this already — sort of health care price transparency and PBMs, the pharmacy benefit managers. Where are we with that? They were supposed to work on it over the August break. Did they?

Cohrs: They were supposed to work on it. The House was clearly working on it and reconciling some of their differences. They’re planning to introduce legislative text on Friday. So, I think Democrats aren’t on board yet, so things could change from the draft they had been circulating early this week. But again, Republicans don’t really need Democrats to move forward, at least in the House. The Senate has been pretty quiet so far. Not to say that no work has gone on, but they certainly weren’t ready for the rollout in the same way that the House was. You know, I think there are still some big questions about, you know, what they’re planning to accomplish with insulin policy, how they’re planning to fit together this jigsaw puzzle of PBM transparency and reforms that have come out of different committees. And I think it’ll come down to [Senate Majority Leader] Sen. Schumer making some tough choices. And from my understanding, that hasn’t quite happened yet. But if the actual showdown happens November, December, they still have some time.

Rovner: Yeah. Now they’re not going out early. They’re clearly going to be fighting over the appropriation. So, the legislative committees have plenty of time to work on these other things. All right. Well, let’s turn to Medicaid for a moment. The quote-unquote “unwinding” continues as states move to redetermine who remains eligible for the program and who doesn’t following the pandemic pause. As predicted, it’s been a bit of a bumpy road. And now it seems a bunch of states have been incorrectly dropping children from Medicaid coverage because their parents are no longer eligible. That’s a problem because nationwide, income limits for children’s eligibility is higher than parents’. In some states, it is much higher. I remember after Hurricane Katrina, in Louisiana, parents were only eligible if they earned 15% of poverty. Somebody said 50, and the Medicaid director said, “No, 15, one-five.” Whereas kids are eligible to, I believe it’s 200% of poverty. And I think that’s a national level.

Kenen: Now, in some states it’s higher.

Rovner: Yes. But I say this is happening in a bunch of states because federal government won’t tell us how many or which ones. We do know it’s more than a dozen, but this is the second time the administration has admonished states for wrongly canceling Medicaid coverage. And they wouldn’t say which states were involved at that time either. Is this an effort to keep this as apolitical as possible, given that the states most likely to be doing this are red states who are trying to remove ineligible people from Medicaid as fast as they can, that they’re trying to sort of keep this from becoming a Republican versus Democrat thing.

Ollstein: It seems like, from what we’re hearing, that the administration is really wary of publicly picking a fight with these states. They want the states to work with them. And so, even if the states are going about this in a way they think is totally wrong, they don’t want to just put them publicly on blast, because they think that’ll make them, again, double down and refuse to work with the government at all. And so, they’re trying to maintain some veneer of cooperation. But at the same time, you’re having, you know, millions of people, including children, falling through the cracks. And so, you know, we have sort of this sternly-worded-letter approach and we’ll see if that accomplishes anything, and if not, you know, what measures can be taken. You know, the administration also created a way for states to hit pause on the process and take a little more time and do a little more verification of people’s eligibility. And some — a couple states — have taken advantage of that, and it’s been successful in, you know, having fewer people dropped for paperwork reasons, but it’s not really happening in the states where it sort of most needs to happen, according to experts.

Rovner: The administration has had fingers pointed at it, too, because apparently it approved some of these plans from the states that were going to look at total family income without realizing that, oh, that meant that kids who are still eligible could end up losing coverage because their parents are no longer eligible.

Kenen: Right. And I also read something yesterday that in some cases it’s sort of a technical issue rather than a “how much outreach and what your intentions are,” that it’s a programing issue, which is related to what Julie just said about the plan. So, it’s not that these states set about to drop these kids, and there may be some kind of goodwill to fix it, in which case you don’t want to get in — and I don’t know that it’s 100% red states either. So —

Rovner: No, that’s clear. We assume, because they’re the ones going fastest, but we do not know.

Kenen: Right, so that there seems to be some kind of — the way it was set up, technically, that can be remedied. And if it’s a technical fix as opposed to an ideological fight, you don’t really want to — you want to figure out how to reprogram the computer or whatever it is they have to do and then go back and catch the people that were lost. So, they’ve been pretty low-key about politicizing rewinding in general. But on the kids, I think they’re going to be even more — CHIP passed, another thing with bipartisan support that’s a mess. I mean, it seems to be the theme of the day. But, you know, CHIP was created on a bipartisan basis, and it’s always been sustained on a bipartisan basis. So, I think that the issue, I don’t know how technically easy it is to fix, but there’s a big difference in how the administration goes after someone that’s intentionally doing something versus someone who wrote their computer programmer set something up wrong.

Rovner: Well, we will definitely keep on this one.

Kenen: But it’s a big mess. It’s a lot of kids.

Rovner: It is a big mess. And let’s turn to the thing that is not bipartisan in Congress, and that is —

Kenen: That’ll be a bigger mess.

Rovner: — Medicare drug negotiations. Yes. While we were away, the federal government released its much-anticipated list of the 10 brand-name drugs that will be the first tranche up for potential price negotiation. I say potential, because the companies have the option of negotiating or not — sort of — and because there are now, I think, nine lawsuits challenging the entire program. My interview with Medicare administrator Meena Seshamani will get into the nuts and bolts of how the negotiation program is supposed to work. But Rachel, tell us a little bit about the drugs on the list and how their makers are trying to cancel this entire enterprise before it even begins.

Cohrs: Sure. So, a lot of these drugs that we’re seeing on the list are blood thinners. Some are diabetes medications. There are drugs for heart failure, rheumatoid arthritis, Crohn’s disease, and there’s also a cancer treatment, too. But I think overall, the drugs were chosen because they have high cost to Medicare. And it was —

Rovner: So that either could mean a lot of people use an inexpensive drug —

Cohrs: Yes.

Rovner: — or a few people use a very expensive drug.

Cohrs: Correct. And it was Wall Street’s favorite parlor game to try to guess what drugs were going to be on this list of 10 drugs that are going to be the guinea pigs to go through this program for the very first time. But it was interesting, because there were a few surprises. Medicare officials were using newer data than Wall Street analysts had access to. So, there were a couple drugs, especially further down on the list, that people used more in the period CMS [Centers for Medicare & Medicaid Services] was studying than had been used previously. So, we saw a couple very interesting instances of a drug being chosen for the list, even though it just kind of fell through the cracks. It was J&J’s [Johnson & Johnson’s] Stelara. It’s a Crohn’s disease treatment, and it does have competition coming in the market soon, but just because of a fluke of kind of when it was approved by the FDA, it just missed cutoffs for some of these exemptions and is now subject to some pretty significant discounts through the program.

Rovner: We’ll link to your very sad story about Stelara.

Cohrs: Sad for the company, but not sad for the patients who will hopefully be paying less for this medication. And there’s also the case of Astellas [Pharma Inc.], which makes a prostate cancer drug that’s very expensive. A lot of people expected that to be selected, but actually wasn’t. And Astellas had sued the Biden administration already before the list came out and then had to withdraw their lawsuit yesterday because their argument that they were going to be harmed by this legislation was made much weaker by the fact that they weren’t selected for this first year of the program. So, who knows? They could dust off their arguments a year from now or two years from now. But it was interesting to see kind of some of these surprises on the list. Again, there are still several, like you mentioned, outstanding lawsuits in several different jurisdictions. I think the main one that we’re watching is by the [U.S.] Chamber of Commerce, which requested a preliminary injunction by the end of this month. So, we’ll see if that comes through. But it is a very long road to 2026. There might be a new administration by then. So, I think there are still a lot of questions about whether this reaches the finish line. But I think it’s a very important step for CMS to get this list out there in the world.

Rovner: So, I spent some time digging in my notes from earlier years, and I dug up notes from an interview I did on Aug. 26 with a spokesperson from the drug industry about how the Medicare drug benefit, quote, “impact the ability of companies to research new medicines. And if that happens, the elderly would be the ones hurt the most.” That quote, by the way, was from Aug. 26 of 1987. Some things truly never change. But is this maybe, possibly, the beginning of the end of drugmakers being able to charge whatever they want in the United States? Because it’s the only country where they can.

Cohrs: Oh, they can still charge whatever they want. This law doesn’t change that. It just changes the fact that Medicare won’t be paying whatever drugmakers happen to charge for an unlimited amount of time. Like, they can still charge whatever they want to Medicare for as long as they can get on the market before they’re selected for this negotiation program. But certainly there could be significant cost — significant savings to Medicare, even if those prices are high. And it’s just kind of a measure that forces price reductions, even if the generic or biosimilar market isn’t functioning to lower those prices through competition.

Kenen: Right. And it’s only Medicare. So, people who are not on Medicare — insurance companies also negotiate prices, but they’re not the government. It’s different. But I mean, these drugs are not going to start being, you know, three bucks.

Rovner: But they may stop being 300,000.

Kenen: Well, we don’t know, because there are some people who think that if Medicare is paying less, they’re going to charge everybody else more. We just don’t know. We don’t know what their behavior is going to be. But no, this does not solve the question of affordability of medication in the United States.

Rovner: The drug companies certainly think it’s the camel’s nose under the tent.

Kenen: They have some medicine for camels’ noses that they can charge a lot of money for, I’m sure.

Rovner: I bet they do. While we are on the subject of things that I have covered since the 1980s, last week the Biden administration finally put out its regulation requiring that nursing homes be staffed 24/7/365 by, you know, an actual nurse. One of the first big reconciliation bills I covered was in 1987 — that was a big year for health policy — and it completely overhauled federal regulation of nursing homes, except for mandating staffing standards, because the nursing homes said they couldn’t afford it. Basically, that same fight has been going on ever since. Except now the industry also says there aren’t enough nurses to hire, even if they could afford it. Yet patient advocates say these admittedly low staffing ratios that the Biden administration has put out are still not enough. So, what happens now? Is this going to be like the prescription drug industry, where they’re going to try to sue their way out of it? Or is it going to be more like the hospital transparency, where they’re just not going to do it and say, “Come and get us”?

Kenen: My suspicion is litigation, but it’s too soon to know. I assume that either one of the nursing home chains — because there are some very big corporations that own a lot of nursing homes — there are several nursing home trade industry groups, for-profit, nonprofit. Does one owner — is in an area where there is a workforce shortage, because that does exist. I mean, I’d be surprised if we don’t see some litigation, because when don’t we see that? I mean, it’s rare. That’s the norm in health care, is somebody sues. Some of the workforce issues are real, but also this proposal doesn’t go into effect tomorrow. It’s not like — but I mean, there are issues of the nursing workforce. There are issues about not just the number of nurses, but do we have them in the right places doing the right jobs? It’s not just RNs [registered nurses]; there are also shortages of other direct care workers. I did a story a few months ago on this, and there are actually nursing homes that have closed entire wings because they don’t have enough staff, and those are some of the nonprofits. There are nursing issues.

Rovner: And a lot of nursing home staff got sick at the beginning of the covid pandemic, and many of them died before there were good treatments. I mean, it’s always been a very hard and not very well-paid job to care for people in nursing homes. And then it became a not very pleasant, not very well-paid, and very deadly job. So I don’t think that’s probably helping the recruitment of people to work in nursing.

Kenen: Right, but the issue — I think a lot of people, when you have your first family experience with a nursing home or, you know, or those of us reporters who hadn’t been familiar with them until we went and did some stories on them, I think people are surprised at how little nursing there actually is. It’s nurses’ aides; it’s, you know, what they used to call licensed practical nurses or nursing assistants; and CNAs, certified nursing assistants. They’re various; different states have different names. But these are not four-year RNs. The amount of actual nursing — forget doctors. I mean, there’s just not a lot of RNs in nursing homes. There’s not a lot of doctors who spend time in nursing homes. A lot of the care is done through people with less training. So, this is trying to get more nurses in nursing homes. And there’s been a lot of stories about inadequate care. KFF Health News — I think it was Jordan Rau who did them. There have been some good stories about particularly nights and weekends, just really nobody there. These are fragile people. And they wouldn’t be in a nursing home if they weren’t fragile people. There are a lot of horror stories. At the same time, there are some legitimate — How fast can you do this? And how well can you do it? And can you do it across the country? I mean, it’s going to take some working out, but I don’t think anybody thinks that nursing home care in this country is, you know, a paragon of what we want our elders to experience.

Rovner: And the nursing home industry points out, truthfully, that most nursing home payments now come from Medicaid, because even people who start out being able to afford it themselves often run out of money and then they end up — then they qualify for Medicaid. And Medicaid in many states doesn’t pay very much, doesn’t pay nursing homes very much. So it’s hard for these companies. We’re not even talking about the private equity companies. A lot of nursing homes operate on the financial edge. I mean, there are —our long-term care policy in this country is, you know, just: What happens, happens, and we’ll worry about it later. And this has been going on for 50 years. And now we have baby boomers retiring and getting older and needing nursing home care. And at some point, this is all going to come to a head. All right. Well, let us turn to abortion. This week marks the second anniversary of the Texas abortion ban, the so-called heartbeat bill, that bans most abortion and lets individuals sue other individuals for helping anyone getting an abortion, which the Supreme Court, if you’ll recall, allowed to take effect months before it formally overturned Roe v. Wade. And, I guess not surprisingly, Texas is still in the news about abortion. This time. The same people who brought us Texas SB 8, which is the heartbeat bill, are going town by town and trying to pass ordinances that make it illegal to use roads within that town’s borders to help anyone obtain an abortion. They’re calling it abortion “trafficking.” Now, it’s not only not clear to me whether a local ordinance can even impact a state or an interstate highway, which is what these laws are mostly aimed at; but how on earth would you enforce something like this, even if you want to?

Ollstein: So, my impression is that they do not want to. These are not meant to be practical. They are not meant to be enforced, because how would you do it other than implementing a very totalitarian checkpoint system? This is meant to —

Rovner: Yes, have you been drinking and are you on your way to get an abortion?

Ollstein: Right. Right, right, right. So, it seems like the main purpose is to have a chilling effect, which it very well could have, even if it doesn’t stand up in court. You know, you also have this situation that we’ve had play out in other ways, where people are challenging laws in courts for having a chilling effect, and courts are saying, look, you have to wait till you actually get prosecuted and challenge it, you know, do an as-applied challenge. If you can’t challenge unless there’s a prosecution but there’s no prosecutions, then you sort of just have it hanging over your head like a cloud.

Kenen: Like Alice said, there’s no way you could do this. Like, what do you do, stop every car and give every person a pregnancy test? Are you going to, like, have, you know, ultrasounds on the E-ZPass monitors? Like, you go through it, it checks your uterus. So, I mean, it’s just not — you can’t do this. But I think one of the things that was really interesting in one of the stories I read about it, I think it was in The Washington Post, was that when they interviewed people about it, they thought it was trafficking, like really trafficking, that there were pregnant woman being kidnapped and forced to have an abortion. So even if you’re pro-choice, you might say, “Oh, I’m against abortion trafficking. I mean, I don’t want anyone to be forced to have an abortion.” You know, so, it’s — the wording and the whole design of it is, they know what they’re doing. I mean, they want to create this confusion. They want to create a disincentive. There’s no way — you know, radar guns? I mean, it’s just, there’s no way of doing this. But it is part of the effort to clamp down even further on a state that has already really, really, really clamped down.

Rovner: Although, I mean, if one could sue and if one could then know about something that’s happening and then you could presumably take the person to court and say, I know you were pregnant and now you’re not, and somebody took you in a car to New Mexico or whatever …

Kenen: You can’t even prove — how do you prove that it wasn’t a miscarriage?

Rovner: That’s —

Kenen: Right? I mean …

Rovner: I’m not saying — I’m not talking about the burden of proof. I’m just saying in theory, somebody could try to have a case here. I mean, but we certainly know that Texas has done a very good job creating a chilling effect, because we still have this lawsuit from the women who were not seeking abortions, who had pregnancy complications and were unable to get health-saving and, in some cases, lifesaving care promptly. And that’s still being litigated. But meanwhile, we have, you know, just today a study out from the Guttmacher Institute that showed that despite how well these states that are banning abortion have done in banning abortion, there were presumably more abortions in the first half of 2023 than there were before these bans took effect, because women from ban states were going to states where it is not banned. And there has been, ironically, better access in those states where it is not banned. I can’t imagine that this is going to please the anti-abortion community. One would think it would make them double down, wouldn’t it?

Ollstein: We know that people are leaving their states to obtain an abortion. We also know that that’s not an option for a lot of people, and not just because a lot of people can’t afford it or they can’t take time off work, they can’t get child care — tons of reasons why somebody might not be able to travel out of state. They have a disability, they’re undocumented. We also have — it’s become easier and easier and easier to obtain abortion pills online through, you know, a variety of ways: individual doctors in more progressive states, big online pharmacies are engaged in this, overseas activist groups are engaged in this. And so, you know, that’s also become an option for a lot of people. And anti-abortion groups know that those are the two main methods. People are still continuing to have abortions. And so, they’re continuing to just throw out different ways to try to either, you know, deter people or actually block them from either of those paths.

Rovner: This fight will also continue on. So, that is this week’s news. Now we will play my interview with Meena Seshamani, and then we will come back and do 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.

I am pleased to welcome back to the podcast Dr. Meena Seshamani, deputy administrator and director of the Center for Medicare at the Centers for Medicare & Medicaid Services. Meena was with us to talk generally about Medicare’s new prescription drug negotiation program earlier this summer. But now that the first 10 drugs subject to negotiation have been announced, we’re pleased to have her back. Welcome.

Meena Seshamani: Thank you for having me.

Rovner: So, remind our listeners, why hasn’t Medicare been able to negotiate drug prices until now — they negotiate prices of everything else — and what changed to make that happen?

Seshamani: That’s right. It was because of the Medicare law that Medicare did not have the ability to negotiate drugs. And thanks to the new drug law, the Inflation Reduction Act, now Medicare has the ability to negotiate the prices of the highest-cost drugs that don’t have competition. And that is part of the announcement that we had on what the first 10 drugs are that have been selected.

Rovner: So, as you say, last week, for the first time and in time for the Sept. 1 deadline, Medicare announced the list of the first 10 drugs that will be part of the first round of price negotiations. Why these 10 specifically? I imagine it’s not a coincidence that the list includes some of the drugs whose ads we see the most often on TV: drugs like Eliquis, Xarelto, and Jardiance, which I of course know how to pronounce because I see the ads all the time.

Seshamani: Well, the process of selection really was laid out in the drug law and also through the guidance that we put out that we had incorporated everybody’s comment for. So, what we did is we started with the, you know, over 7,500 drugs that are covered in the Part D Medicare prescription drug program. From there, we picked those drugs that had been on the market for seven years for a drug product or 11 years for a larger molecule or biologic product that did not have competition. And then from there, there are various exemptions and exclusions that, again, are laid out in the law: for example, drugs that have low Medicare spend, of less than $200 million; drugs that are plasma-derived products; certain orphan drugs. An orphan drug is a drug that is indicated for a rarer disease. So that, again, those specific criteria are laid out in the law and in our guidance. And then there were opportunities for manufacturers to apply, for example, for a small biotech exemption; if their drug was, you know, 80% of their, you know, Medicare Part D revenue, they could say, “Hey, I’m a small biotech.” Again, a lot of these criteria were laid out in the law. Or for a manufacturer of a biosimilar, which is kind of like a generic drug for one of these biologic drugs, they could say, “Hey, we have a biosimilar that’s going to be coming on the market, has a high likelihood of coming on the market, so you should delay negotiating” the brand, if you will, drug. So, again, all of these steps were laid out in the drug law, and those are the steps and criteria that we followed that came to that list of 10 drugs that we published.

Rovner: I did see the makers of one drug — and forgive me, I can’t remember which one it was — saying, “But our drug isn’t that expensive.” On the other hand, their drug is used by a lot of people on Medicare. So, it’s not just the list price of the drug, right? It’s how much it costs Medicare overall.

Seshamani: That’s right. The list is made up of those drugs that have the highest gross total cost to the program — so, price per unit times units of volume that is used.

Rovner: So, how does this negotiation process work? What happens now? Now we have this list of 10 drugs.

Seshamani: Yeah, a lot of this is also laid out in the law, and then we fleshed out further in our guidance. So, from the list of 10 drugs, on Oct. 1, manufacturers now have to decide if they want to participate in the negotiation program. It is a voluntary program. It is our hope that they will come to the table and want to negotiate, because I think we all have shared goals of improving access and affordability and really driving innovation for the cures and therapies that people need. So, Oct. 1, they sign agreements for the negotiation program if they decide to participate. And Oct. 2 is the deadline for gathering data. We put out what’s called an information collection request to say, this is the kind of data we’re thinking about collecting. We got lots of comments and incorporated that. So, that provides the framework for the data that we’re requesting both from the manufacturer of the selected drug, but also, there are aspects open to the public on, you know, how the drug benefits populations, for example. So that’s Oct. 2. Then we’re going to have patient-focused listening sessions, a session for each drug, for patients, their caregivers, you know, other advocates, to be able to share what they see as the benefits of the drugs that are selected. And, we will have meetings with each of the manufacturers. All of that information will come together in an initial offer that CMS will make Feb. 1, 2024, and that is a date that is stipulated in the law. The manufacturer then has about 30 days to evaluate that. If they like that offer, they can agree. If they want, they can make a counteroffer. From that counteroffer, CMS has the ability to agree or to say, “You know, we don’t agree, so let’s now have a series of negotiation meetings.” There can be up to three negotiation meetings that provides that back-and-forth, ultimately leading to an agreed-upon what’s called maximum fair price in the law. And those maximum fair prices are published by Sept. 1, 2024. Again, that Sept. 1 is stipulated in the law. And also as part of this process, CMS will publish a narrative about that negotiation process — you know, the data that was received, you know, the back-and-forth, and also we’ll publish ultimately the maximum fair prices that are agreed to.

Rovner: And does that maximum fair price just apply to Medicare?

Seshamani: The maximum fair price just applies to Medicare. The information will be available. I mean, we don’t have any authority. You know, the commercial sector, they do their own negotiations, and they will continue to do so. But part of this is an opportunity to really further the conversation about how drugs impact the lives of people. We have an opportunity now with some drugs that have been on the market for quite a while, right? Minimum of seven years or 11 years, to see how these drugs work in the real world, in people’s communities, so that we can incorporate that into what it is that we need and want for people to be healthy, to stay out of the hospital, to live meaningful lives. So it’s really an opportunity to further that conversation. And a lot of that data, a lot of those listening sessions, that will all go into our negotiation process and will be part of the narrative that we publish.

Rovner: And what happens if the drug company says either we don’t want to negotiate or we don’t like our final offer? If they say they don’t want to play, what happens?

Seshamani: Julie, I will say again, to start with, we are hopeful that the drug companies will come forward and will want to negotiate because, again, through many conversations that we have had, we do have shared goals of access and affordability and really driving innovation and procures and therapies that people need. And it is a choice for drug companies if they want to participate or not, as stipulated in the law. If a drug company decides not to sign, you know, the negotiation agreement, not to participate in negotiation, then we would refer them to the Department of Treasury for an excise tax. That excise tax is also described in the law. If a drug company has this excise tax applied, they can get out of paying the excise tax. If, No. 1, they decide to come to the table and negotiate, or No. 2, if they exit the Medicare and Medicaid market. So those are kind of their off-ramps, if you will, for that excise tax.

Rovner: So they don’t have to participate in the negotiation, but they also don’t have to participate in Medicare and Medicaid.

Seshamani: Correct.

Rovner: So I saw a lot of complaining last week with the first group of drugs that this is really only going to benefit the people on Medicare who take those drugs. But, in fact, if there really is a lot of money saved, the benefits could go well beyond this, right?

Seshamani: Yeah, I think two points. So, yes, this negotiation is for, you know, some of the highest-cost drugs to the Medicare program that don’t have competition. And the negotiated drug prices apply to the Medicare program. However, as we talked about, this really drives a conversation around drugs and really grounding this negotiation process in the clinical benefit that a drug provides. Considering things like if a drug is easier for someone to take and it’s easier for a caregiver, that can have tangible improvements to the health of the person they’re caring for, right? And I think we have that opportunity to really drive the conversation. And as we know in many aspects of health care, people look to Medicare to see what Medicare is doing. And also, the transparency around providing that narrative of the negotiation, publishing the maximum fair prices that are agreed to. That’s all data that anybody can use as they would like. And I think the second piece that’s important to remember is that negotiation is one very important piece of a very big change to Medicare prescription drug coverage. You know, alongside the $2,000 out-of-pocket tab that’s going to go into effect in 2025, the no-cost vaccines, $35 copay cap for insulin that have already gone into effect. So, really, it is part of a larger sea change in Medicare drug coverage that will help millions of people and their families. You know, I did a roundtable with seniors as we were rolling out the insulin copay cap. And one woman was telling me that she was providing money to her brother every month so that he could pay for his insulin on Medicare. So, really, I mean, this has tremendous impact not just for people on Medicare, but their families, their communities, and really furthers the conversation for the entire system.

Rovner: I was actually thinking of more nitty-gritty money, which is if you save money for Medicare, premiums will be lower for people who are getting drug coverage, and taxpayers will save money, too, right? I mean, this is not just for these people and their families.

Seshamani: Our priority is being able to reach agreement on a fair price for the people who rely on these medications for their lives and the American taxpayer in the Medicare program.

Rovner: I know you can’t comment on lawsuits, and there are many lawsuits already challenging this. But the drug companies, one of their major arguments is that if you limit what they can charge for their drugs, particularly in the United States, the last country where they can charge whatever they want for their drugs, they will not be able to afford to keep the pipeline going to discover more new, important drugs. This is an argument they’ve been making since, I told somebody earlier, since I covered this in the late 1980s. What is your response just to that argument?

Seshamani: Well, I think there were several articles, many articles were written about this on the day that the 10 selected drugs were published. They were published before the stock market opened. And there really was no impact on the stocks of the companies. There were many financial pieces written about this. So I think that is one indication of the fact that the pharmaceutical industry is strong, it is thriving, and it is designed to innovate. And what we’re hoping to do through this negotiation program is really reward the kinds of innovations that we all need, the cures and therapies that people need. Recently, the venture fund that backed Moderna invested in a new startup for small molecules. Bayer has recently invested a billion dollars in the U.S. So you see, the industry very much is thriving. That is what the stock market response also shows. And it’s also the way that we are approaching negotiation to make sure that we’re rewarding the kinds of innovations that people need.

Rovner: Well, Meena Seshamani, thank you so much. I hope we can come back to you as this negotiation process for the first time proceeds.

Seshamani: Absolutely. Thanks again, Julie.

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. Alice, why don’t you go first this week?

Ollstein: Yeah, I picked a very sad story from The Washington Post about how people who have schizophrenia are a lot more vulnerable to extreme heat. And it’s rare to find one of these health care stories where you’re just astonished. You know, I had no idea about this. You know, it really walks through not only are people more vulnerable for mental health reasons, you know, it profiles this terrible story of a guy in Phoenix who wandered off into the desert and died because he was experiencing paranoid delusions. But also, just physically, people with schizophrenia have difficulty regulating their body temperature. A lot of medications people take make people more dehydrated, less able to cope. And just an astonishingly high percentage of people hospitalized and killed by extreme heat have these mental illnesses. Of course, they’re also more likely to have housing instability or be out on the street. So just a fascinating piece, and I hope it spurs cities to think of ways to address it. One other small thing I want to compliment is it just, technically, on this article online, they have a little widget where you can convert all of the temperatures cited in the lengthy story from Fahrenheit to Celsius. And I just really appreciated that for allowing, you know, no matter where you live, you sort of get what these high temperatures mean.

Rovner: Yeah, graphics can be really helpful sometimes. Rachel.

Cohrs: Yeah. So I chose a story in The Wall Street Journal and the headline is “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins. And I think it was a really interesting and rare look inside one of these pharmaceutical companies. And Novartis hired a Wall Street analyst, Ronny Gal, to help advise them. And I think I had read his analysis before he crossed over to Novartis. So I think it was interesting to just hear how that has integrated into Novartis’ strategy and just how they’re changing their business. But I think as we’re, you know, having these conversations about drug pricing and how strategies are changing due to some of these policies, it is helpful to look at who these executives are listening to and what they’re prioritizing, whose voices in this decision-making process that really has impacts for so many people who are waiting for treatments. And I think there are tough choices that are made all the time. So I just thought it was very illuminating and helpful as we’re talking about how medicines get made in D.C.

Rovner: Yeah, maybe there will be a little more transparency to actually how the drug industry works. We will see. Joanne.

Kenen: With Julie’s permission, I have two that are both short and related. I wrote a piece for Politico Nightly called “How to Wage War on Conspiracy Theories,” and I liked it because it really linked political trends and disinformation and attempts to debunk, with very parallel things going on in the world of health care and efforts to the motivations and efforts to sow trust and what we do and do not know about how to debunk, which we’re not very good at yet. And then the classic example, of course, is the related AP story, which has a very long headline, so bear with me. It’s by Kevin McGill: “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign.” And, basically, it’s that the 5th Circuit, a conservative court that we’ve talked about before, is saying that the FDA is allowed to inform doctors, but it can’t advise doctors. And I’m not really sure what the difference is there, because if the FDA is informing doctors that ivermectin, we now know, does not work against covid, and it can in fact harm people, there’s ample data, that the FDA is not allowed to tell doctors not to use it. So the ivermectin campaign is a form of disinformation, or misinformation, whatever you want to call it, that at the very beginning, people had, you know, there were some test-tube experiments. We had nothing else. You can sort of see why people wanted … might have wanted to try it. But we have lots and lots and lots of good solid clinical research and human beings and, no, it does not cure covid. It does not improve covid. And it can be damaging. It’s for parasites, not viruses.

Rovner: It can cure worms. Well, I’m going to channel my inner Margot Sanger-Katz this week and choose a story from a medical journal, in this case the Journal of the American Medical Association. Its lead author is Sherry Glied, who’s dean of the NYU Robert F. Wagner Graduate School of Public Service and former assistant HHS [Department of Health and Human Services] secretary for planning and evaluation during the Obama administration — and I daresay one of the most respected health policy analysts anywhere. The piece is called “Health Systems and Social Services — A Bridge Too Far?” And it’s the first article I’ve seen that really does question whether what’s become dogma in health policy over the past decade that — tending to what are called social determinants of health, things like housing, education, and nutrition — can improve health as much as medical care can. Rather, argues Glied, quote, “There are fundamental mismatches between the priorities and capabilities of hospitals and health systems and the task of addressing social determinants of health,” and that, basically, medical providers should leave social services to those who are professional social service providers. That is obviously a gross oversimplification of the argument of the piece, however, but I found it really thought-provoking and really, for the first time, someone saying, maybe we shouldn’t be spending all of this health care money on social determinants of health. Maybe we should let social service money go to the social service determinants of health. Anyway, we will see if this is the start of a trend or just sort of one outlier voice. 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 tweet me, or X me, or whatever. I’m still there @jrovner, also on Bluesky and Threads. Rachel?

Cohrs: I’m @rachelcohrs on X.

Rovner: Alice.

Ollstein: @AliceOllstein.

Rovner: Joanne.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

Ohio voters — in a rare August election — turned out in unexpectedly high numbers to defeat a ballot measure that would have made it harder to pass an abortion-rights constitutional amendment on the ballot in November. The election was almost a year to the day after Kansas voters also stunned observers by supporting abortion rights in a ballot measure.

Meanwhile, the percentage of Americans without health insurance dropped to an all-time low of 7.7% in early 2023, reported the Department of Health and Human Services. But that’s not likely to continue, as states boot from the Medicaid program millions of people who received coverage under special eligibility rules during the pandemic.

This week’s panelists are Julie Rovner of KFF Health News, Emmarie Huetteman of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachel Roubein of The Washington Post.

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Among the takeaways from this week’s episode:

• It should not have come as much of a surprise that Ohio voters sided with abortion-rights advocates. Abortion rights so far have prevailed in every state that has considered a related ballot measure since the Supreme Court overturned Roe v. Wade, including in politically conservative states like Kentucky and Montana.
• Moderate Republicans and independents joined Democrats in defeating the Ohio ballot question. Opponents of the measure — which would have increased the threshold of votes needed to approve state constitutional amendments to 60% from a simple majority — had not only cited its ramifications for the upcoming vote on statewide abortion access, but also for other issues, like raising the minimum wage.
• A Texas case about exceptions under the state’s abortion ban awaits the input of the state’s Supreme Court. But the painful personal experiences shared by the plaintiffs — notable in part because such private stories were once scarce in public discourse — pressed abortion opponents to address the consequences for women, not fetuses.
• The uninsured rate hit a record low earlier this year, a milestone that has since been washed away by states’ efforts to strip newly ineligible Medicaid beneficiaries from their rolls as the covid-19 public health emergency ended.
• The promise of diabetes drugs to assist in weight loss has attracted plenty of attention, yet with their high price tags and coverage issues, one thorny obstacle to access remains: How could we, individually and as a society, afford this?
• Lawmakers are asking more questions about the nature of nonprofit, or tax-exempt, hospitals and the care they provide to their communities. But they still face an uphill battle in challenging the powerful hospital industry.

Also this week, Rovner interviews Kate McEvoy, executive director of the National Association of Medicaid Directors, about how the “Medicaid unwinding” is going as millions have their eligibility for coverage rechecked.

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

Julie Rovner: KFF Health News’ “How the Texas Trial Changed the Story of Abortion Rights in America,” by Sarah Varney.

Joanne Kenen: Fox News’ “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’,” by Melissa Rudy.

Rachel Roubein: Stat’s “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Mohana Ravindranath.

Emmarie Huetteman: KFF Health News’ “The NIH Ices a Research Project. Is It Self-Censorship?” by Darius Tahir.

Also mentioned in this week’s episode:

• Politico’s “Abortion Rights Won Big in Ohio. Here’s Why It Wasn’t Particularly Close,” by Madison Fernandez, Alice Miranda Ollstein, and Zach Montellaro.
• KFF Health News’ “Seeking Medicare Coverage for Weight Loss Drugs, Pharma Giant Courts Black Influencers,” by Rachana Pradhan.
• Stat’s “Alarmed by Popularity of Ozempic and Wegovy, Insurers Wage Multi-Front Battle,” by Elaine Chen.

click to open the transcript

Transcript: On Abortion Rights, Ohio Is the New Kansas

KFF Health News’ ‘What the Health?’Episode Title: On Abortion Rights, Ohio Is the New KansasEpisode Number: 309Published: Aug. 10, 2023

[Editor’s note: This transcript, generated using transcription software, 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 a day early this week, on Wednesday, Aug. 9, at 3:30 p.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 Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hey, everybody.

Rovner: Rachel Roubein of The Washington Post.

Rachel Roubein: Hi, everybody.

Rovner: And my colleague and editor here at KFF Health News Emmarie Huetteman.

Emmarie Huetteman: Hey, everyone. Glad to be here.

Rovner: So later in this episode, we’ll have my interview with Kate McEvoy, executive director of the National Association of Medicaid Directors. She’s got her pulse on how that big post-public health emergency “Medicaid unwinding” is going. And she’ll share some of that with us. But first, this week’s news. I guess the biggest news of the week is out of Ohio, which, in almost a rerun of what happened in Kansas almost exactly a year ago, voters soundly defeated a ballot issue that would have made it harder for other voters this fall to reverse the legislature’s strict abortion ban. If you’re having trouble following that, so did they in Ohio. [laughs] This time, the fact that the abortion rights side won wasn’t as much of a surprise because every statewide abortion ballot question has gone for the abortion rights side since Roe v. Wade was overturned last year. What do we take away from Ohio? Other than it looked a lot like … the split looked a lot like Kansas. It was almost 60-40.

Kenen: It shows that there’s a coalition around this issue that is bigger than Democrat or Republican. Ohio was the classic swing state that has turned into a conservative Republican-voting state — not on this issue. This was clearly independents, moderate Republicans joined Democrats to … 60-40, roughly, is a pretty big win. Yes, we’ve seen it in other states. It’s still a pretty big win.

Roubein: I agree. And I think one of my colleagues, Patrick Marley, and I spent some time just driving around and traveling Ohio in July. And one of the things that we did find is that — this ballot measure to increase the threshold for constitutional amendments is 60% — it had in some, in many, ways turned into a proxy war over abortion. But, in some ways, both sides also didn’t talk about abortion when they were, you know, canvassing different voters. You know, they use different tools in the toolbox. I was following around someone from Ohio Right to Life and, you know, he very much said, “Abortion is the major issue to me.” But, you know, they tried to kind of bring together the side that supported this. Other issues like legalizing marijuana and raising the minimum wage, and, you know, the abortion rights side was very much a part of, you know, the opposition here. But when some canvassers went out — my colleague Patrick had traveled and followed some, and some, you know, kind of focused on other issues like, you know, voters having a voice in policy and keeping a simple majority rule.

Rovner: Yeah, I think it’s important — for those who have not been following this as closely as we have — what the ballot measure was was to make future ballot measures — and they said they were not going to have them in August anymore, which, this was the last one — in order to amend the constitution by referendum, you would need a 60% majority rather than a 50% majority. And just coincidentally, there is an abortion ballot measure on Ohio’s ballot for November, and it’s polling at about 58%. But, yes, this would have applied to everything, and it was defeated.

Kenen: And it’s part of a larger trend. It began before the overturning of Roe v. Wade. Over the last couple of years, you’ve seen conservative states move to tighten these rules for ballot initiatives. And that’s because more liberal positions have been winning. I mean, Medicaid, the Medicaid expansion on the ballot, has won, and won big. Only one was even close …

Rovner: In very red states!

Kenen: They often won very big in a number of very, very conservative states, places like Idaho and Nebraska. So, you know, there’s always been … the conventional wisdom is that, you know, the political parties are more extreme than many voters, that the Democratic Party is for the left and the Republican Party is for the right. And there are a lot of people who identify with one party or the other but aren’t … who are more moderate or, in this case, more liberal on Medicaid. And Medicaid … what was it, seven states? I think it’s seven. Seven really conservative states. And then the abortion has won in every single state. And there’s a little bit of conversation and it’s … very early. And I don’t know if it’s going to go anywhere, but if I’ve heard it and written a bit about it, conservative lawmakers have heard about it, too, which is there are groups interested in trying to get some gun safety initiatives on ballots. So that’s complicated. And it may not happen. But they’re seeing, I mean, that’s the classic example of both a criminal justice and a public health issue — so we can talk about it — a classic example where the country is much more in the center.

Rovner: Well, let us move to Texas, because that’s where we always end up when we talk about abortion. You may remember that lawsuit where several women who nearly died from pregnancy complications sued the state to clarify when medical personnel are able to intercede without being subjected to fines and/or jail sentences. Well, the women won, at least for a couple of days. A Texas district judge who heard the case ruled in their favor, temporarily blocking the Texas ban for women with pregnancy complications. But then the state appealed, and a Texas appeals court blocked the lower-court judge’s blocking of part of the ban. If you didn’t follow that, it just means that legally nothing has changed in Texas. And now the case goes to the Texas Supreme Court, which has a conservative majority. So we pretty much know what’s going to happen. But whether these women ultimately win or lose their case may not be the most important thing. And, to explain why I’m going to do my extra credit early this week. It’s by my KFF Health News colleague Sarah Varney. It’s called “How the Texas Trial Changed the Story of Abortion Rights in America.” She writes that this trial was particularly significant because it put abortion foes on the defensive by graphically depicting harm to women of abortion bans — rather than to fetuses. And it’s also about the power of people publicly telling their stories. I’ve done a lot of stories over the years about women whose very wanted pregnancies went very wrong, very late. And, I have to tell you, it’s been hard to find these women. And when you find them, it’s been really hard to get them to talk to a journalist. So, the fact that we’re seeing more and more people actually come out publicly, you know, may do for this issue what, you know, perhaps what gay rights, you know, what people coming out as gay did for gay marriage? I don’t know. What do you guys think?

Kenen: Well, I think these stories have been really compelling, but they’re also, they’re the most dramatic and maybe easiest to push back. But it’s, you know, there’s a whole lot of other reasons women want abortions. And the focus — and it’s life and death, so the focus, quite rightfully, has to be on these really extreme cases. But that’s not … it’s still in some ways shifting attention from the larger political discussion about choice and rights. But, clearly, some of these states, we’ve seen so many stories of women who, their lives are at stake, their doctors know it, and they just don’t think they have the legal power; they’re afraid of the consequences if they’re second-guessed. There are tremendous financial and imprisonment [risks] for a doctor who is deemed to have done an unnecessary abortion. And this idea that’s taken hold … among some conservatives is that there’s never a need for a medical abortion. And that’s just not true.

Rovner: And yet, I mean, what this trial and a lot of things in Sarah’s piece too point out is that that line between miscarriage and abortion is really kind of fuzzy in a lot of cases. You know, if you go to the hospital with a miscarriage and they’re going to say, “Well, did you initiate this miscarriage?” And we’ve seen women thrown in jail before for losing pregnancies, with them saying, “You know, you threw yourself down the stairs to end this pregnancy.” That actually happened, I think it was in Indiana. So this is —

Kenen: And miscarriage is very common.

Rovner: That was what I was saying.

Kenen: Early miscarriage is very common. Very, very common.

Huetteman: One of the things that’s so striking about the past year, since Dobbs overturned Roe v. Wade ,is that we’ve seen this kind of national education about what pregnancy is and how dangerous it can be and how care needs to really be flexible to meet those sorts of challenges. And this actually got me thinking about something that another familiar voice on this podcast, Alice Miranda Ollstein, and some colleagues wrote this morning about the Ohio outcome, which is they pointed out that the anti-abortion movement really hasn’t evolved in terms of the arguments that they’re making in the past year about why abortion should continue to be less and less available. Meanwhile, we’ve got these, like, really incredible, really emotional, moving stories from women who have experienced this firsthand. And that’s a hard message to overcome when you’re trying to reach voters in particular.

Rovner: And it’s interesting; both sides like to take — you know, they all go to the hardest cases. So, for years and years, the anti-abortion side has, you know, has gone to the hardest cases. And that’s why they talk about abortion in the ninth month up till birth, which isn’t a thing, but they talk about it. And you know, now the abortion rights side has some hard cases now that abortions are harder to get. Well, while we are on the subject of Texas lawsuits, States Newsroom — and thank you for sending this my way, Joanne — has a story reporting that the publisher of the scientific paper that both the lower court judge and the appeals court judges used to conclude that the abortion drug mifepristone causes frequent complications — it does not — is being reviewed for potential scientific misconduct. The paper comes from the Charlotte Lozier Institute, which is the research arm of the anti-abortion group the Susan B. Anthony List. Sage, which is the publisher of the journal that the paper appeared in, has posted something called an expression of concern, saying that the publisher and editor, quote, “were alerted to potential issues regarding the representation of data in the article and author conflicts of interest. SAGE has contacted the authors of this article and an investigation is underway.” This was sort of a whistleblower by a pharmacist who looked at the way the data in this paper was put together and says, “No, that’s really very misleading.” I don’t think I’ve ever seen this, though; I’ve never seen a scientific paper that’s now being questioned for its political bent, a peer-reviewed scientific paper. I mean, this could change a lot of things, couldn’t it?

Kenen: Well, not if people decide that they still think it’s true. I mean, look at — you know, the vaccine autism paper was retracted. That wasn’t initially political. It’s become more political over the years; it wasn’t political at the time. That was retracted. And people have been jumping up and down screaming, “It was retracted! It was retracted!” And, you know, millions of people still believe it. So, I mean, legally, I’m not sure how much it changes. I mean, I thought we had all heard that there were flaws in this study. This article was good because I hadn’t been aware of how deeply flawed and in all the many ways it was flawed. And also the whistleblower yarn was interesting. I’m not sure how much it changes anything.

Rovner: Well, I’m thinking not in terms of this case. And by the way, I think we didn’t say this, that the study was of emergency room visits by women who’d had either surgical or medical abortions. And the contention was that medical abortions were more dangerous than surgical abortions because more women ended up in the emergency room. But as several people have pointed out, more people ended up in the emergency room after medical abortions because there have been so many more medical abortions over the years. I mean, you don’t actually have to be a data scientist to see some of the problems.

Kenen: Right. And some of them also weren’t that — really, were nervous, and they didn’t know what was normal and they went to the ER because they were scared and they really were safe. They were not — they didn’t need — you know, they just weren’t sure how much pain and discomfort or bleeding you’re supposed to have. And they went and they were reassured and were sent home. So it’s not even that they really had a medical emergency or that they were harmed.

Rovner: Or that they had a complication.

Kenen: Right. There were many flaws pointed out with this research.

Rovner: But my broader question is, I mean, if people are going to start questioning the politics of scientific papers, I mean, I could see the other side going after this.

Kenen: Well, there’s climate science, too, that’s bad. I mean, I don’t think this is actually unique. I think it’s egregious. But there were studies minimizing the risk of smoking, which was also a political business, commercial. Climate is certainly political. I mean, I think this is sort of the most politicized and most acute example, but I don’t think it’s the only one.

Roubein: And I think, Julie, as you’d mentioned, I think when [U.S. District Judge] Matthew Kacsmaryk in Texas came down with his decision — you know, for instance, there are media outlets — that my colleagues at the Post did a story just kind of unpacking some of the kind of flaws and some of the studies that were used to make, you know, a court decision.

Rovner: Yeah, to give the judge what he assumes to be evidence that this is a dangerous drug. So it’s — yeah.

Kenen: Which he came in believing, we know, from the profiles of him and his background.

Rovner: Right. All right, well, let us move on. The official Census Bureau estimate of how many people lack health insurance won’t be out until next month. But the Department of Health and Human Services is out with a report based on that other big federal population survey that shows the uninsured rate early this year was at its lowest level since records started being kept, which I think was in the 1980s: 7.7%. Now, that’s clearly going to be the high point for the fewest number of people uninsured, at least for a while, because clearly not all of the millions of people who are losing or about to lose their Medicaid coverage are going to end up with other insurance. But I remember — Joanne, you will, too — when the rate was closer to 18% … was a huge news story, and the thing that triggered the whole health reform debate in the first place. I’m surprised that there’s been so little attention paid to this.

Kenen: Because, you know … [unintelligible] … it’s so yesterday. And also, as you alluded to, you know, we’re in the middle of the Medicaid unwinding. So the numbers are going up again now. And we don’t know. We know that it’s a couple of million people. I think 3 million might be the last —

Rovner: I think it’s 4 [million], it’s up to 4.

Kenen: Four, OK. And some of them will get covered again and some of them will find other sources of coverage. But right now, there’s an uptick, not a downtick.

Roubein: And I think when you look at just, like, estimates of what the insured and the uninsured rates would be in 2030, like, the CMS’ [Centers for Medicare & Medicaid Services] analysis, one of the other questions is, you know, whether the enhanced Obamacare subsidies continue past 2025. So there’s Medicaid and then there’s also some other kind of question marks and cliffs coming up on how and whether it will fluctuate.

Rovner: No, it’s worth watching. And remember, when the census numbers come out, those will be for 2022. Well, moving on, we have two stories this week looking at the potential cost of those breakthrough obesity drugs, but through two very different lenses. One is from my KFF Health News colleague Rachana Pradhan, details how the makers of the current “it” drug, Ozempic, which is Novo Nordisk, in an effort to get the votes to lift the Medicare payment ban on weight loss drugs, is quietly contributing large amounts of money to groups like the Congressional Black Caucus Foundation and the Congressional Hispanic Caucus Institute. It’s sort of a backdoor lobbying that’s pretty age-old, but that doesn’t mean it doesn’t work. The other story, by Elaine Chen at Stat, looks at how health insurers are pushing back hard against the off-label use of diabetes medications that also work to help people lose weight. They’re doing things like allowing the more expensive weight loss drugs only if people have tried and failed other methods or disallowing them if the other methods had been slightly successful. So, if you take a lesser drug and you lose enough weight, they won’t let you take the better drug because, look, you lost weight on the other drug. We’ve talked about this, obviously, before: These drugs, on the one hand, have the potential to make a lot of people both healthier and happier. There’s a study out this week that shows that Mounjaro, the Eli Lilly drug, actually reduces heart disease by 20%.

Kenen: In people who have heart disease.

Rovner: Right, in people who have heart disease.

Kenen: It’s not lowering everybody’s risk.

Rovner: But still, I mean, everybody’s — well, I mean, there are medical indications for using these drugs for weight loss. But if everybody who wants them could get them, it would literally break the bank. Nobody can afford to give everybody who’s eligible for these drugs these drugs. Is the winner here going to be the side with the most effective lobbying, or is that too cynical?

Huetteman: Isn’t that always the winner? Speaking of cynical.

Rovner: Yeah, in health care.

Kenen: Well, I mean, I also think there’s questions about, like, these drugs clearly are really wonderful for people who they were designed for; you don’t have to be on insulin. They’re having not just weight loss and diabetes. There are apparently cardiac and other — you know, these are probably really good drugs. But there are a lot of people who do not have diabetes or heart disease who want them because they want to lose 20 pounds. And some of them are being told you have to take it for the rest of your life. I mean, I just know this anecdotally, and I’m sure we all know it anecdotally.

Rovner: Right. It’s like statins.

Kenen: Yes.

Rovner: Or blood pressure medication. If you stop taking your blood pressure medication, your blood pressure goes back up.

Kenen: Right. So, I mean, should the goal for the weight loss be, “OK, this is going to help you take off that weight and then you’re going to have to maintain it through diet and exercise and healthy lifestyle,” blah, blah, blah, which is hard for people. We know that. Or are we putting healthy people on a really expensive drug that changes an awful lot of things about their body indefinitely? We don’t have safety data for lifelong use in otherwise healthy people. So, you know, I’m always a little worried because even the best clinical trial is small compared to the entire — it’s small and it’s time-limited. And maybe these drugs are going to turn out to be absolutely phenomenal and we’re going to all live another 20 healthy years. But maybe not, you know. Or maybe they’re going to be really great for a certain subpopulation, but, you know, we’re not going to want to put it in the water supply. So, I still think that there’s this sort of pell-mell rush. And I think it’s partly because there’s a lot of money at stake. And it’s also, like, most people who are overweight have tried to lose it, and it’s very difficult to lose and maintain weight. So, you know, people want an easier way to do it. And I think the other thing is right now it’s an injection. There are side effects for some people on discomfort. There probably will be an oral version, a pill, sometime fairly soon, which will open — you know, there are people who don’t want to take a shot who would take a pill. It also means you might be able to tell — I mean, I don’t know the science of the pills, but it would make sense to me that you could take a lower dose, you know, maybe ease into it without the side effects, or could you stay on it longer with fewer problems? I mean, we’re just the very beginning of this, but it’s a huge amount of money.

Rovner: Yeah. You could see — I mean, my big question, though, is why can’t we force the drugmakers to lower the price? That would, if not solve the problem, make it a lot better. I mean, really, we’re going to have to wait until there is generic competition?

Kenen: It’s not just this.

Rovner: Yeah.

Kenen: I mean, it’s all sorts of cancer treatments and it’s hepatitis treatments. And it’s, I mean, there’s a lot of expensive drugs out there. So, this one just has a lot of demand because it makes you skinny.

Rovner: Well, that was the thing. We went through this with the hepatitis C drugs, which were really super expensive. It’s much more like that.

Kenen: Well, they seemed super expensive at the time —

Rovner: Not so much anymore.

Kenen: — but maybe for a thousand dollars, in retrospect.

Rovner: All right. Well, let’s move on. So, speaking of powerful lobbies, let’s talk about hospitals. Iowa Republican Sen. Chuck Grassley and Massachusetts Democrat Elizabeth Warren — now, there is an unlikely couple — are among those asking the IRS to more carefully examine tax-exempt hospitals to make sure they’re actually benefiting the community in exchange for not paying taxes, which is supposed to be the deal. Now, Sen. Grassley has been on this particular hobbyhorse for many, many years, I think probably more than 20, but not much ever seems to come of this. I can’t tell you how many workshops I’ve been to on, you know, how to measure community benefits that tax-exempt hospitals are providing. Any inkling that this time is going to be any different?

Roubein: Well, hospitals don’t tend to be sort of the losers. They try and kind of frame themselves as, like, “We’re your sort of friendly neighborhood hospital,” and every — I mean, every congressman, most congressmen have, you know, hospitals in their district. So they they get lobbied a lot, though, you know — I mean, this is a different issue, but particularly on the House side, hospitals are facing site-neutral payments, which if that actually went through Congress would be a loss. So yeah, but lawmakers have found it in general hard to take on the hospital industry.

Rovner: Yeah, very much so.

Kenen: Yeah. I mean, I think that we think of nonprofits and for-profits as, they’re different, but they’re not as different as we think they are, in that, you know, nonprofits are getting a tax break and they have to reinvest their profits. But it doesn’t mean they’re not making a lot of money. Some of them are. I mean, some of them have, you know, we’ve all walked into fancy nonprofits with, you know, fancy art and marble floors and so on and so forth. And we’ve all been in nonprofits that are barely keeping their doors open. So it’s your tax status. It’s not really, you know, your ethical status or the quality of care. I mean, there’s good nonprofits, there’s good for-profits. You know, this whole thing is like, if I were a hospital, I would be getting this huge tax break, and what am I doing to deserve it? And that’s the question.

Rovner: And I think the argument is, you know, that the 7.7% uninsured we were talking about, that hospitals are supposed to be providing care as part of their community benefit that the federal government now is ending up paying for. I think that’s sort of the frustration. If nonprofit hospitals were doing what they were supposed to do, it would cost federal and state governments less money, which always surprises me because this is not gone after more. I mean, Grassley has spent his whole career working on various types of government fraud. So this is totally in line for him. But it’s never just seemed to be a big priority for any administration.

Huetteman: There’s a little bit of an X factor here. Look at the fact that Grassley and Warren are talking about this publicly now. Maybe I’m just really optimistic from all the journalism we’ve been doing about projects like “Bill of the Month.” But the reality is that a lot of people are now seeing reporting that’s showing to them what nonprofit hospitals are actually doing when it comes to pursuing patients who don’t pay bills. And what it means to have community benefit comes into question a lot when you talk about wage garnishment, suing patients who are low-income for their medical debt. These are things that journalists have uncovered over and over again, happening at — ding, ding, ding — nonprofit hospitals. It’s harder to argue that hospitals are just doing their best for people when you have these stories of poor people who are losing their homes over unpaid medical bills, for instance. And I think that right now, when we’re in this political moment where health care costs are so, so potent to people and so important, I mean, could we see that this will actually be more effective, that we’re heading towards something that’s more effective? Maybe.

Rovner: Well, repeats the journalist, as we all are, the power of storytelling. Definitely the public is primed. I imagine that’s why they’re doing it now. We’ll see what comes of it.

Kenen: think the public is primed for bad practices. I’m not sure how many patients understand if the hospital they go to is a nonprofit or a for-profit. I think the public understands that everything in health care costs too much and that there are bad actors and greed. There’s a difference between profit and greed, and I think many people would say that we’re now in an era of greed. And not everybody in the health care sector — before anybody calls us up and shouts, “Not everybody who provides care is greedy” — but we’ve seen, you know, it is clearly out there. You know, you had Zeke Emanuel on a couple of weeks ago. Remember what he said, that, you know, 10 years ago, some people still liked their health care and now nobody likes their health care, rich or poor.

Rovner: Yeah, he’s right. All right. Well, that is this week’s news. Now, we’ll play my interview with Kate McEvoy of the National Association of Medicaid Directors about how the Medicaid unwinding is going. And one note before you listen: Kate frequently refers to the federal CMCS, which is not a misspeak; it stands for the Center for Medicaid and CHIP Services, which is the branch of CMS, the Centers for Medicare & Medicaid Services, that deals with Medicaid. So, here’s the interview:

I am pleased to welcome to the podcast Kate McEvoy, executive director of the National Association of Medicaid Directors, which is pretty much exactly what the name says, a group where state Medicaid officials can share information and ideas. Kate, welcome to “What the Health?”

Kate McEvoy: Good afternoon. Thanks for having me.

Rovner: Obviously, the Medicaid unwinding, which we have talked about a lot on the podcast, is Topic A for your members right now. Remind us again which Medicaid recipients are having their coverage eligibility rechecked? It’s not just those in the expansion group from the Affordable Care Act, right?

McEvoy: It’s not, no. Each and every person served by the country nationwide has to be reevaluated from an eligibility standpoint this year.

Rovner: What do we know about how it’s going? We’re seeing lots of reports that suggest the vast majority of people losing coverage are for paperwork reasons, not because they’ve been found to be no longer eligible. I know you recently surveyed your members. What are they telling you about this?

McEvoy: So, I first want to say this is an unprecedented task and it’s obviously historically significant for everyone served by the program. The volume of the work, and also the complexity, makes it a challenging task for all states and territories. But what we are seeing to date is a few things. First, we have seen an incredible effort on the part of states and territories to saturate really every means of communicating with their membership, really getting out that message around connecting with the programs, especially if an individual has moved during the period of the pandemic, which is very typical for people served by Medicaid. So that saturation of messaging and use of new means of connecting with people, like texting, really does represent a tremendous advance for the Medicaid program that has traditionally relied on a lot of complex, formal, legal notices to people. So that seems like a very positive thing. What we are seeing, and this is not unexpected, is that, you know, for reasons related to complex life circumstances and competing considerations, many people are not responding to those notices, no matter how we are transmitting those messages. And so that is a piece that is of great interest and concern to all of us, notably Medicaid directors wanting to make sure that eligible folks do not lose coverage simply because they are not responsive to the requests for more information. So we’re at a point where we’re beyond that initial push around messaging and now are really focused on means of protecting people who remain eligible, either through automatic review of their eligibility — the ex parte process — or by restoring them through such means as reconsideration. That’s really the main focus right now.

Rovner: And there’s that 90-day reconsideration window. Is that … how does that work?

McEvoy: So the federal law gives this period of 90 days to families and children within which they can be renewed with very little effort, essentially removing the responsibility to complete a new application. We also have long-standing help to people called “presumptive eligibility.” So if someone goes to a federally qualified health center or, more unfortunately, goes to the hospital, many of those types of providers can restore someone’s eligibility. So those are important protective pieces. We also know from the survey that you mentioned of our membership that many states and territories are extending those reconsideration protections to all coverage groups — also including older adults and people with disabilities.

Rovner: So are there any states that are doing anything that’s different and innovative? I remember when CHIP [the federal Children’s Health Insurance Program] was being stood up — and boy, that was a long time ago, like 1999 — South Carolina put flyers in pizza boxes, and some other state put flyers in sneaker boxes for back-to-school stuff. Are there better ways to maybe get ahold of these people?

McEvoy: So I think the answer is: a lot of different channels. Our colleagues in Louisiana have a partnership with Family Dollar stores to essentially feature this information on receipts. There’s a lot of work at pharmacy counters. Some of the big chain pharmacies have QR codes and other means of prompting people around their Medicaid eligibility. There’s going to be a big push for the back-to-school effort. And I think CMS and states are really interested, particularly in ensuring that children do not lose coverage even if their parents have regained employment and they’re no longer eligible. Another thing that’s going on is a lot of innovation in the means of enabling access to information. So many states have put in place personal apps through which people can track their own eligibility. There’s interest and some uptake of the so-called pizza-tracker function — so you can kind of see where you’re situated in that pipeline — and also a lot of use of automation to help call people back if they’re trying to get to state call centers. So really, all of those types of strategies … we’re seeing a huge amount of effort across the country.

Rovner: How’s the cooperation going with the Department of Health and Human Services? I know that … they seem to be not happy with some states. Are they being helpful, in general?

McEvoy: They’re being extraordinarily helpful. I would say that we often talk about Medicaid representing a federal-state equity partnership, and we’ve seen that manifest from the beginning of the first notice of the certainty around the start of the unwinding. CMCS has consistently offered guidance to states. They work with states using a mitigation approach as opposed to moving rapidly to compliance. We feel mitigation is the best way of essentially working out the strategies that are going to best protect continuing eligibility for people at the state level. And we really appreciate CMS’ efforts on that. We understand they do have to ensure accountability across the country, and we’re mutually committed to that.

Rovner: You better explain mitigation strategies.

McEvoy: Yeah, so this is a year where we are calling the question on eligibility standards that help ensure that the pathway to Medicaid coverage is a smooth one, and also that there is continuity of coverage. So, for any state that wasn’t yet meeting all those standards, CMCS essentially entered into an agreement with the state or territory to say, here is how you will get there. And that could have involved some means of improving the automatic renewals for Medicaid. It could have meant relying on an integrated eligibility processes. There are a lot of different tools and strategies that were put in place, but essentially that is a path to every state and territory coming into full compliance.

Rovner: Is there anything unexpected that’s happening? I know so much of this was predicted, and it was predicted that the states that went first that, you know, were really in a hurry to get extra people off of their rolls seem to be doing just that: getting extra people off of their rolls. Are you surprised at the differences among states?

McEvoy: I think that there have definitely been differences among states in terms of the tools they have used from a system standpoint, but I don’t see any differences in terms of retention of eligible people. That remains a shared goal across the entire country. And again, this is a watershed point where we have the opportunity to bring everyone to the same standards, ongoing, so that we help to prevent some of the heartache of the eligibility process for folks ongoing.

Rovner: Anything else I didn’t ask?

McEvoy: Well, I think that piece around the reconsideration period is particularly important. We are struck by there being probably less literacy around that option, and that’s something we want to continue to promote. The other piece I’d wind up by saying is that the Medicaid program is always available for people who are eligible. So in the worst-case scenario in which an otherwise eligible person loses coverage, they can always come back and be covered. This is in contrast to private insurance that may have an annual open enrollment period. Medicaid, as you know, is available on a rolling basis, and we want to keep reinforcing that theme so that no one goes with a gap in coverage.

Rovner: Kate McEvoy, thank you very much. And I hope we can call you back in a couple of months.

McEvoy: I would be very happy to hear from you.

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. I did mine already. Emmarie, why don’t you go next?

Huetteman: My story this week comes from KFF Health News, my colleague Darius Tahir. He has a story called “The NIH Ices a Research Project. Is It Self-Censorship?” Now, the story talks about the fact that the former head of NIH Francis Collins, was, as he was leaving, announcing an effort to study health communications. And we’re talking about not just doctor-to-patient communications, but actually also how mass communications impact American health. But as Darius found out, the acting director quietly ended the program as NIH was preparing to open its grant applications. And officials who spoke with us said that they think political pressure over misinformation is to blame. Now, we don’t have to look too far for examples of conservative pressure over misinformation and information these days. In particular, there’s a notable one from just last month out of a Louisiana court, the federal court decision that blocked government officials from communicating with social media companies. You really don’t have to look too far to see that there’s a chilling effect on information. And we’re talking about the NIH was going to study or rather fund studies into communication and information. Not misinformation, information: how people get information about their health. So it’s a pretty interesting example and a really great story worth your read.

Rovner: And I’ve done nothing but preach about public health communication for three years now.

Kenen: It’s a very good story.

Rovner: Yeah, it was a really good story. Rachel, you’re next.

Roubein: All right. This story is called “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Stat News, by Mohana Ravindranath. And I thought this story was really interesting because she kind of dived into what Mohana called “a budding movement to make architecture more inclusive” for the people and patients who are spending a lot, a lot of time in hospital walls. And what some researchers are doing is using virtual reality to essentially gauge how comfortable children who are patients are in hospital rooms. And she talked to researchers at Berkeley who were using these, like, virtual reality headsets to kind of study and explore mocked-up hospital rooms. And, I didn’t know a ton about this field. I mean, apparently it’s not new, but it’s this kind of growing sort of movement to make patients more comfortable in the space that they’re inhabiting for perhaps long periods of time.

Rovner: I went to a conference on architecture, hospital architecture, making it more patient-centered, 10 years ago. But my favorite thing that I still remember from that is they talked about putting art on the ceiling because people are either in bed or they’re in gurneys. They’re looking up at the ceiling a lot. And ceilings are scary in hospitals. So that was one of the things that I took away from that. OK, Joanne, now it’s your turn.

Kenen: OK. This is from Fox News. And yes, you did hear that right. It’s by Melissa Rudy, and the headline is “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’.” So at Covenant Health, they had a bunch of high-level guys in suits pretend they were nursing and/or pumping mothers, and they had to nurse every three hours for 20 minutes at a time. And they found it was quite difficult and quite cumbersome and they didn’t have enough privacy. And as one of them said, “There was no way to multitask.” But trust me, if you have two kids, you have to figure that out, too. So it was a really good story.

Rovner: Some of these things that we feel like should be required everywhere, but it was a great read; it was a really good story. 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 this week to Zach Dyer, sitting in for the indefatigable Francis Ying. And as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me or X me or whatever; I’m @jrovner. And also on Bluesky and Threads. Rachel?

Roubein: @rachel_roubein — that’s on Twitter.

Rovner: Joanne.

Kenen: In most places I’m @JoanneKenen. On Threads, I’m @joannekenen1.

Rovner: Emmarie.

Huetteman: And I am @emmarieDC.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

It took more than two years, but the Biden administration has finally kept a promise made by then-candidate Joe Biden to roll back the Trump administration’s expansion of short-term, limited-duration health plans. The plans have been controversial because, while they offer lower premiums than more comprehensive health plans, they offer far fewer benefits and are not subject to the consumer protections of the Affordable Care Act.

Also this week, the FDA for the first time approved the over-the-counter sale of a hormonal birth control pill. With more states imposing restrictions on abortion, backers of the move say making it easier to prevent pregnancy is necessary now more than ever.

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

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Alice Miranda Ollstein
Politico

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Amy Goldstein
The Washington Post

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Rachel Cohrs
Stat News

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Read Rachel's stories

Among the takeaways from this week’s episode:

• The FDA’s much-anticipated approval of the first over-the-counter hormonal birth control pill followed the advice of its outside advisory committee. The pill, Opill, will be available on shelves without age restrictions.
• The Biden administration announced moves to limit so-called junk plans on insurance marketplaces. The Trump administration had dropped many restrictions on the plans, which were originally intended to be used for short-term coverage gaps.
• As the nation continues to settle into a post-Dobbs patchwork of abortion laws, the Iowa Legislature approved a six-week ban on the procedure. And an Idaho law offers a key test of cross-border policing of abortion seekers, as other states watch how it unfolds.
• In other news, Georgia’s Medicaid work requirements took effect July 1, implementing new restrictions on who is eligible for the state-federal program for people with low incomes or disabilities. And the Supreme Court’s decision on affirmative action has the potential to shape the health care workforce, which research shows could have implications for the quality of patient care and health outcomes.

Also this week, Rovner interviews KFF Health News’ Bram Sable-Smith, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature, about a patient who lacked a permanent mailing address and never got the hospital bills from an emergency surgery — but did receive a summons after she was sued for the debt. If you have an outrageous or exorbitant medical bill you want to share with us, you can do that here.

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

Julie Rovner: KFF Health News’ “Doctor Lands in the Doghouse After Giving Covid Vaccine Waivers Too Freely,” by Brett Kelman.  

Rachel Cohrs: ProPublica’s “How Often Do Health Insurers Say No to Patients? No One Knows,” by Robin Fields, and Stat’s “How UnitedHealth’s Acquisition of a Popular Medicare Advantage Algorithm Sparked Internal Dissent Over Denied Care,” by Casey Ross and Bob Herman.  

Amy Goldstein: The New York Times’ “Medicare Advantage Plans Offer Few Psychiatrists,” by Reed Abelson.  

Alice Miranda Ollstein: The Wall Street Journal’s “America Is Wrapped in Miles of Toxic Lead Cables,” by Susan Pulliam, Shalini Ramachandran, John West, Coulter Jones, and Thomas Gryta.  

Also mentioned in this week’s episode:

• Stat’s “How One Medical School Became Remarkably Diverse — Without Considering Race in Admissions,” by Usha Lee McFarling.
• The New York Times’ “With End of Affirmative Action, a Push for a New Tool: Adversity Scores, by Stephanie Saul.

click to open the transcript

Transcript: The Long Road to Reining In Short-Term Plans 

KFF Health News’ ‘What the Health?’Episode Title: The Long Road to Reining In Short-Term PlansEpisode Number: 305Published: July 13, 2023

[Editor’s note: This transcript, generated using transcription software, 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, July 13, 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 Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: And Amy Goldstein of The Washington Post.

Goldstein: Good to be with you.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Bram Sable-Smith, who wrote the latest KFF Health News-NPR “Bill of the Month.” The hospital that provided care to this month’s patient couldn’t find her to send her a bill, but the debt collectors sure could. But first, this week’s news. Actually, it’s more like the last month’s news because we actually haven’t talked about news in a while. So we’re going to try to hit a bunch of items in sort of a lightning round. Let’s start with something we knew was coming. We just didn’t know exactly when. Last week, the Biden administration finally cracked down on short-term health plans. Those are the ones that are not subject to the strict rules of the Affordable Care Act. Amy, you wrote about this. What are short-term plans, and why have they been so controversial?

Goldstein: Well, short-term plans — they’re called short-term limited-duration plans, and really terrible argot, but that’s their name. They’ve been around as an alternative to plans that are meeting the rules of the Affordable Care Act. They were originally designed for people to use as small bridges between, say, when they lost a job and they were about to get a new job and they needed something in the interim to provide health coverage. Republicans, during the time that they were trying very hard several years ago to get rid of as much as the Affordable Care Act as they could — they didn’t succeed at a lot of that, but they did succeed during the Trump administration at lengthening the time that people could have these plans. So they extended them from what had been a three-month maximum during the latter part of the [Barack] Obama administration to 12 months, and then they were renewable for up to three years. And Democrats began calling these “junk plans,” saying that people didn’t exactly know what they were buying, that the premiums were low but the benefits were small and if people got sick and really needed a lot of care they could be stuck paying for a lot of it on their own.

Rovner: And these were the very plans that the ACA was kind of designed to get rid of, right, where people would say, I have this great health plan, it only costs me $50 a month — but by the way, it only provides $500 worth of care.

Goldstein: Well, there’s that. And the other thing that the ACA was designed to do is treat people with preexisting conditions equally. And these plans do not have to do that. Some do, but they’re not required to. So President [Joe] Biden, since he was candidate Biden running for the 2020 election, has been saying for quite a while that he was going to knock down the duration of these plans, and some of his fellow Democrats have been leaning on him: “Why haven’t you done it yet?” And last week, he finally did. He didn’t bring it exactly to where the Obama administration had it, but he brought them down to three months with a one-month extension, so a total of four months.

Rovner: And I guess the resistance here is that they’re still kind of popular, right, for people who think they would rather pay very low premiums for very few benefits?

Goldstein: Well, the catch is that we don’t really know how popular they are because there aren’t very reliable data on how many people have these. But the presumption is that some people like them.

Rovner: All right, well we will see what happens with this time they’re trying to crack down. Let us move on to abortion and reproductive rights. We will start with the breaking news. The Food and Drug Administration just this morning approved Opill, which is the first over-the-counter birth control pill. Alice, we’ve known this was coming, right?

Ollstein: Yes, we did. We thought it would be a little later in the summer. But the decision itself reflects what the FDA’s outside advisory panel strongly recommended, which is to make these pills available over the counter without a prescription and without an age restriction, which was one looming question over this process.

Rovner: Yeah, I guess, Rachel, I mean, the issue here has been can women be trusted enough to know when they shouldn’t take birth control pills because they are contraindicated for some people?

Rachel Cohrs: Right. And I think that certainly it’s important to read through the information. There’s a question as to whether women will do that. And one part of the release that stood out to me is that the specific type of pill that this is requires women to take it around the same time every day, which is not necessarily the case for all birth control pills. And I think there’s a little bit more flexibility than there used to be with this kind of pill. But it is just important that all of this communication happens. And if there’s not a doctor or pharmacist in the middle, I think it will be kind of interesting to see how this plays out in the real world.

Rovner: Well, while this could definitely help people prevent pregnancy who don’t want to get pregnant, there’s certainly a lot of action still in the states around abortion. We’re going to start in Iowa, which since the last time we spoke has done basically a 360 on abortion. Last month, the state Supreme Court deadlocked on whether to reinstate a 2018 ban on almost all abortions. That left a lower court order blocking the ban intact, so abortion remained legal in Iowa. But anti-abortion Gov. Kim Reynolds refused to take no for an answer. She called a special session of the state legislature, which on Tuesday essentially repassed the 2018 ban. It’s supposed to take effect as soon as the governor signs it, which could be as soon as Friday. But first it goes back to court, right, Alice?

Ollstein: Right. As with all of these things, there’s just a lot of back-and-forth before it’s final. Groups have already filed a lawsuit. And, you know, because the courts’ sort of mixed treatment of the previous version of this, we sort of don’t know what’s going to happen. But the law could go into effect and then be blocked by courts later or it could be blocked before it goes into effect. There’s a lot of different ways this could go, but this is one of several states where new restrictions are coming online. We’re more than a year out from the Dobbs decision now, and things are not settled at all. Things are still flipping back and forth in different states.

Rovner: Yeah, there’s a lot of states where old restrictions came into effect and then were blocked and now they’re putting new restrictions and they might be blocked. Well, turning to another “I” state, this time Idaho, where the legislature this spring passed a first-in-the-nation bill attempting to criminalize the act of helping a minor cross state lines for an abortion, even if the abortion is legal in the state the minor travels to. Now, abortion rights supporters have filed a first-in-the-nation lawsuit to block the first-in-the-nation law. This could have really big ramifications. This is different from a lot of what’s going on in a lot of the other states, right?

Ollstein: Yeah. Over the last year, there’s been a lot of fear on the left of states reaching across their borders to try to police abortion. And it hasn’t really happened yet that we have seen. And so this, I think, is a key test of whether more states will attempt to go in this direction. You know, a lot of blue states passed sort of shield laws for patients, for providers, for data, out of fear that more red states would attempt more cross-border policing. But that really hasn’t materialized broadly yet.

Rovner: I remember Missouri was the one that was talking about it, right, to make it a crime if —

Ollstein: Right.

Rovner: I know they didn’t do it, but they were talking about if women went particularly to Illinois, which is now one of these abortion havens, and came back, they would try to prosecute them, although that never really came to be.

Ollstein: Exactly. And so it’s interesting that even really conservative states with big Republican majorities, most have not gone down this road yet. And so I imagine a lot of them are watching how this case goes.

Rovner: Well, as long as we’re talking about states that start with “I,” let’s turn to Indiana, where Planned Parenthood reports that all of their appointments for abortions are taken between now and when that state’s near-total ban takes effect in a few weeks. This points out something I think often gets missed in these sort of score card maps of states that have bans and restrictions, which is there’s a lot of states where abortion is technically still legal but realistically not available, right?

Ollstein: The difference between being technically legal and available is nothing new. This was true prior to Dobbs as well. There were lots of states that only had one abortion clinic for the entire state. There were, like, six of those. And so, you know, you may have the right to have the procedure on paper, but if there’s only one place you could go and you’re not able to physically get there or they don’t have an appointment within the time window you need, you’re out of luck; that right isn’t, you know, meaningful for you. And so that’s becoming, you know, more true as abortion access is eliminated in a lot of the country and more and more people are depending on fewer and fewer states.

Rovner: And fewer and fewer clinics in fewer and fewer states. Well, finally, an update on the one-man nomination blockade by Alabama Republican Sen. Tommy Tuberville, who we talked about in March. He has stopped approval of basically all Defense Department personnel moves, including routine promotions, in protest of the Biden administration’s policy of providing leave and travel expenses for servicewomen to get abortions if they’re stationed in states where it’s illegal. Now, for the first time in more than 150 years, the Marine Corps has no approved commandant. Any idea which side’s going to back down here? Rachel, this is backing up the entire legislative calendar in the Senate, right?

Cohrs: It is. And I think some of the coverage this week has highlighted just how there hasn’t really been a willingness among Republican leadership to really put the pressure on Tuberville. But honestly, I don’t know when this stops for him. Having temporary leadership in all these positions isn’t kind of the impetus for him to say that he’s made his point. And I think there are also questions about — there may be more education required about exactly what the difference is between a temporary leader and a permanently installed leader. Obviously, the decisions that they’re making every day are life-and-death and are different than the leadership positions we see over at something like the NIH [National Institutes of Health], where, you know, I think it is —

Rovner: Which is also held up. But that’s another story.

Cohrs: Right, another story. But I just don’t see where this ends quite yet, unless there’s some will from Republican leadership to really bring him in line. And they just haven’t summoned that yet.

Rovner: I imagine there’ll be a vote on this when they get to the defense bill, right, which —the defense authorization, which is going to come up, I think, in both houses in the coming weeks. I mean, one would think that if there’s a vote and he loses, he might back down. I’m just guessing here. I guess we’ll have to wait and see what happens with that. All right. Well, it’s also been a busy couple of weeks in other social policy. On the one hand, a new federal law took effect that makes it easier for people to get accommodations to be able to do their jobs while pregnant. And Maine is going to start offering paid family and parental leave, although not until 2026. That makes it the 13th state to enact such a policy. On the other hand, Georgia is the first state to implement work requirements for Medicaid. Amy, the last time we discussed this, federal judges had tossed out Medicaid work requirements and Republicans in Congress were unsuccessful in getting those requirements back into the debt ceiling compromise. So how come Georgia gets to do this?

Goldstein: Well, I’ve begun to think of Medicaid work requirements as whack-a-mole, if you remember the arcade game in which you knock down an animal with a mallet only to have it pop up unexpectedly somewhere else. So, as you say, work requirements was something that Republicans were very eager to institute in 2017, 2018, when the Trump administration’s Center for Medicare & Medicaid Services encouraged states to adopt them. And there were basically plans to give people Medicaid at the time, mainly people in Medicaid expansion groups, if they worked or went to school or did community service for at least 80 hours a month. As you say, that was knocked down both by a district court and then a federal circuit court. And it looked like that was that, particularly when the Biden administration came along and undid the Trump administration’s regulation that had allowed states to submit proposals, the waivers for these kinds of plans. Well, lo and behold, Georgia said they wanted to do this. They said they wanted to do it in a little bit different way, because, for the first time ever, Georgia was going to be a partial expansion state for Medicaid, allowing people to get onto Medicaid if they had incomes up to the poverty level but not up to the full expansion poverty level that the ACA allows. And the Biden administration didn’t like that so much. And that partial expansion was to be twinned with work requirements. The Biden administration didn’t —

Rovner: For that expansion group, though, right? Not for everybody.

Goldstein: Just for that partial expansion group. The Biden administration didn’t like that so much. But last summer, a judge in Georgia said, no, she thinks this is OK. And the reason was that, unlike the other states, if this was pegged to a partial expansion, any expansion with work requirements would increase the number of people with Medicaid. So that was sort of in her judge judgment — I shouldn’t say the judge’s judgment — consistent with the purposes of the program. So Georgia has gone ahead, and the beginning of this month they allowed people to start enrolling in something called Georgia Pathways to Coverage. And we’ll have to see how it goes.

Rovner: Yeah. And just to be clear, I mean, Alice, you did some stellar work back a couple of years ago about Arkansas, about people losing coverage because of the work requirements, even if they were working, just because of how hard it was to report the work hours, right?

Ollstein: Absolutely. I mean, it’s kind of what we’re seeing now with the Medicaid unwinding, is that, you know, people just aren’t able to know what’s going on, aren’t able to be reached, fall through the cracks, can’t navigate the bureaucracy, and lose coverage that they should be entitled to. So we saw that happen, and I think to Amy’s point, the administration seems to be taking a very different stance on states like Arkansas, you know, which already had expanded Medicaid and then went to impose a work requirement, whereas Georgia didn’t have it before and this is kind of a compromise because it’s like, well, more people will be insured if we allow this to go forward total, you know, so maybe it’s better than nothing, although a lot of folks on the left are very opposed to the concept of work requirements, citing data that the people who are on Medicaid who can work are already working — the vast, vast, vast majority. And those who are not working, either they are caring for a child or someone with disability, or they themselves have a disability, or they’re a student. You know, there’s all these categories of why folks are unable to work.

Rovner: But in this expansion group, one would assume that if they’re earning up to the federal poverty line, they have some source of income. So one would assume that many of them are working. But I think it’ll be really interesting for researchers to watch to see, you know, a sort of a proof of concept in either direction with this.

Goldstein: And let me quickly mention a couple of things. Georgia’s rules are actually in some ways the same as what other states had tried to do previously. But in other ways, this is the strictest set of work requirements that anyone has tried in a couple of ways: People have to meet these work requirements up to age 64, which is older than other states had done for the most part. There’s also no exemption if you’re taking care of a child or taking care of an older family member. So how well people, in addition to the bureaucratic hoops that Alice was talking about, which are of grave concern to some of the people who oppose this in Georgia — there’s also a question of who’s going to actually be able to qualify for this.

Rovner: While we are on the subject of court decisions, one of the odd court decisions that I think has happened over the past few weeks is a federal district court decision out of Louisiana barring many officials in the Biden administration, including the surgeon general and the head of the CDC [Centers for Disease Control and Prevention], from talking to social media sites, particularly about things like medical misinformation. This feels like something I had not seen before in terms of actually trying to ban the administration from talking to private companies based on First Amendment concerns, which is what this is.

Cohrs: Right. Well, I mean, the First Amendment protects speech from interference from the government —

Rovner: Right

Cohrs: — which has always been, you know, this gray area with these independent platforms. And I think this issue, you know, has obviously become highly politicized. It came up several times when Rochelle Walensky, the former CDC director, was testifying on the Hill. So I think certainly we’ve seen this trend overall in these highly political court decisions and this strategy that certain litigants are taking where they’re trying to find defendants in a certain jurisdiction that’s going to be advantageous to them. So it will certainly be interesting to see how this plays out in the future and makes its way through the court system, but certainly is an eye-popping precedent. Like you mentioned, we don’t usually see something like this.

Rovner: And I wanted to mention, I think also because this is yet another of these judges that the right has found that are likely to agree with them. Like we’ve seen now: The judges in Texas, we now have one in Louisiana. Sort of kind of watch that docket. While we are still on the subject of courts, 2023 was the first year in the last decade or so that there was not a major health-related decision in the last big cases decided by the Supreme Court. But it seems like one of those non-health cases, the one essentially striking down affirmative action, might have some major implications for health care after all, particularly for medical education, right?

Cohrs: Yes. Some of my colleagues did some I think great follow-up reporting on this. And I think the idea is that there has been research that has shown that when patients are able to see a doctor of their same racial background, that it does have positive implications for their care. And there has also been studies of schools where there have been bans on race-conscious admissions showing that there is a decrease in medical school students from underrepresented backgrounds traditionally. And so I think that cause and effect is concerning for people, that if there are fewer medical students — there already aren’t a representative amount — from underrepresented groups, that could trickle down to, again, just exacerbating so many of these inequities that we see in health care provision. I know there was just a big study on the maternal mortality outcomes that came out recently as well. And I think all of these things are tied together. And I think Axios reported on one interesting potential loophole, was using proxy measures, like where someone went to school or their parents’ background, something like that, to try to ensure diversity from that lens. But I think it certainly is going to make these medical schools recalculate how they’re doing admissions and make some hard choices about how to maintain diversity that can be beneficial for patients.

Rovner: One thing that I think has come up in all of these discussions is the fact that the University of California-Davis has done an interesting job of creating a very diverse medical school class, even though race-conscious admissions have been banned in California for years. So I think a lot of schools are going to be looking sort of to see what UC Davis has done and perhaps emulate that. And I will put one of the UC Davis stories in the show notes for everybody. All right. Finally in this week’s news, the drug industry has filed a lawsuit challenging the Medicare drug price negotiation program that’s just now starting to get off the ground. Rachel, you wrote about this. How does pharma think it can block price-setting for Medicare that Medicare does for pretty much everything else that Medicare pays for? They set prices for hospitals and doctors and medical equipment. Why are drugmakers thinking that they’re special?

Cohrs: Right. So, again, this is four lawsuits as well, not just one: two from two trade groups and two drugmakers. And they’re each kind of using different arguments. But I think the big picture here is if the government called it price-setting, I don’t think pharma would have as much of an argument, but they’re calling it a negotiation. And I think one of the drugmakers’ key claims is that by signing these contracts to enter into this process, they’re tacitly admitting that this price that they come up with in this process is, quote-unquote, “fair.” And, you know, they don’t want to agree to that because then it makes the price that they’re charging everyone else look unfair on the other side of the coin. And I think there’s also these really high penalties for these companies who decide not to participate; I mean, tens of millions of dollars on the first day is the kind of number that we’re seeing for some of these companies that have filed lawsuits. And I think there’s also the option for them to take all of their drugs off of the market. But I think there’s a question with the timeline of whether they could have even done that before the law was passed. So the big picture from the drugmaker side of things is that the penalties are so high for them not to participate and that the government is framing this as a negotiation when it really is just price-setting, like Medicare does in so many other areas. So I think one interesting development that happened this week was that the [U.S.] Chamber of Commerce filed a motion for a preliminary injunction, which could make all of these lawsuits move much faster and really put a stop to the program. We hadn’t seen either of these lawsuits request a motion like that. And I think they requested a ruling by Oct. 1, which is when the first kind of round of 10 drugmakers would have had to sign their contracts with Medicare. So I think this certainly is picking up speed and urgency as we’re moving toward that Sept. 1 selection date.

Rovner: I didn’t even notice. Are these lawsuits all filed here in Washington, D.C., or —

Cohrs: No, they are not. As we’ve seen, the drugmakers are very strategic in where they filed. I think Merck did file in D.C., but the chamber filed in Ohio; it had some of their local chapters join in as well. I think we saw another company file in New Jersey. So I think they are kind of hedging their bets and trying to get rulings from as many different jurisdictions as they can.

Rovner: Find a judge who’s willing to slap an injunction on this whole thing.

Cohrs: Yes.

Rovner: Which we will talk about when and if it happens. All right. That is this week’s news, or at least as much as we have time to get to. Now, we will play my “Bill of the Month” interview with Bram Sable-Smith, and then we will be back with our extra credits. We are pleased to welcome back to the podcast Bram Sable-Smith, who reported and wrote the latest KFF Health News-NPR “Bill of the Month.” Bram, so nice to see you again.

Bram Sable-Smith: Always a pleasure to be here.

Rovner: So, this month’s patient was, like a lot of young people, an uninsured 23-year-old when she ended up in the emergency room. Tell us who she is and what kind of medical care she needed and got.

Sable-Smith: Yeah, that’s right. Her name was Bethany Birch. And, in addition to being uninsured, she was also unemployed at the time, and she had had pain in her diaphragm for eight months. It prevented her from eating. She lost about 25 pounds in that time. And when she went to the emergency room, she found out she needed her gallbladder removed.

Rovner: And got it, right?

Sable-Smith: And got it. Yeah, she got that surgery almost immediately. Because she hadn’t been eating food — her food resistance — it meant she could get in for surgery right away.

Rovner: And that cured her? Yes?

Sable-Smith: It did cure her. Yes, she felt a lot better.

Rovner: So now we’re talking about the bill. The hospital tried to send her the bill, but apparently it couldn’t find her. Is this a common thing, and why couldn’t they find her? One presumes she gave them an address when she presented at the emergency room.

Sable-Smith: She did give them an address, but by the time she was discharged, she had lost her housing. Her home situation was unstable. So just that brief visit to the hospital, by the time she left, she had no more house to live in. And she did end up crashing with her family for several months. And, eventually, she did update her address with the post office. But by the time she had done that, it was after the hospital had sent the three bills to her for her visit.

Rovner: So the hospital doesn’t get any response, and they do what we know hospitals do. They sued for nonpayment. And the debt collection firm did manage to find her. So then what happened?

Sable-Smith: Well, she went to court, and like so many people who end up in court with medical debt, she did not have a lawyer representing her. She met with a representative from the debt collection firm, and she worked out a payment plan to pay her bill, plus court costs, in $100 monthly installments. But at the time, Tennessee had a default interest rate on judgments like the one that Bethany had of 7%. So the judge tacked on a 7% interest rate to her bill.

Rovner: So, yeah, and that was presumably a lot for her to carry. What finally happened with the bill?

Sable-Smith: Well, she paid her $100 monthly payments for over four years. It totaled about $5,200 she paid in that time. But at the same time, the interest rate was accruing. And so she owed an additional $2,700 on top of the initial bill that she had gotten. From her perspective, it was just impossible. She wasn’t digging out of this debt. So she started getting help from a family friend, who’s a billing expert, who took on her case. They asked the hospital and the debt collection firm to settle her debt because she had already paid so much. But they were unsuccessful in doing so. They sent their bill to us. We started reporting the story. Then they asked again to settle her debt by paying an additional $100 on top of what she had already paid. And this time they agreed. And so she settled her debt and she got a balance-zero statement.

Rovner: Amazing how just one phone call from us can do some work. Now, as somebody who is unemployed and, as you pointed out, uninsured at the time she got the care, Bethany should have been eligible for the hospital’s financial assistance policy. Why didn’t she get help before the debt ballooned with court costs and all that interest?

Sable-Smith: Well, the simple answer is that she never applied. But, as we know, it’s much more complicated than that. So given her status as single, uninsured, unemployed, it’s very possible that she would have qualified for financial help, maybe even for free care altogether. But the onus was on her as a patient to apply. And we know her situation was unstable. You know, she went through a period of homelessness. She didn’t have a lot of expendable money at the time. It’s a long process to apply for these programs. There’s a lot of forms. It can be cumbersome. And that prevents a lot of people from applying to these programs. So advocates push for something called presumptive eligibility, where the hospital takes the onus of applying away from patients and they automatically put them through the process. And this hospital that Bethany went to, they actually have switched to that presumptive eligibility model, just not in time to help her case.

Rovner: So what’s the takeaway here? I guess everybody has to be a proactive patient, not just with your medical care, but especially with your bills. What happens to a patient who finds themselves in a similar situation?

Sable-Smith: Well, you know, from a consumer standpoint like that, one takeaway is to ask for financial help. A lot more people qualify than you might think. You might not think you qualify, but it’s very possible you could. And then from a policy perspective, hospitals switching to presumptive eligibility — that’s something that they’re able to do. And also, some states have pushed to ban or even limit interest payments on this kind of medical debt. So that’s something that other people are considering as well.

Rovner: Or you can write to us, and we will show you how in our show notes.

Sable-Smith: That’s always a possibility, too.

Rovner: Bram Sable-Smith, thank you so much.

Sable-Smith: Yeah, thanks for having me.

Rovner: OK, we’re back, and it’s time for our extra credit segment. That’s when we each recommend a story we read this week 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. Rachel, why don’t you go first?

Cohrs: OK, I’m cheating a little bit and I’m doing a double feature. So the first story for my extra credit is headlined “How Often Do Health Insurers Say No to Patients? No One Knows.” It’s in ProPublica by Robin Fields, and I think it’s just a great feature on the idea that Obamacare entitled the government and patients to more information about how often insurers deny care to patients. And the government hasn’t really pursued that information. And even, like, state health insurance commissions aren’t providing the information they’re collecting. And Robin just had such a difficult time getting any sort of information from anyone, even though we’re legally entitled to it. So I thought that was just kind of a great highlight of this next area of criticism of the health insurance industry, which, and I think that —

Rovner: I would say, all this focus on premiums and not as much focus on what you actually get for those premiums.

Cohrs: Exactly. So true. I think there’ve been some high-profile examples, great reporting. And I thought that meshed well with some reporting from my colleagues Casey Ross and Bob Herman, who wrote a follow-up to some of their prior reporting titled “How UnitedHealth’s Acquisition of a Popular Medicare Advantage Algorithm Sparked Internal Dissent Over Denied Care.” Again, looking at how algorithms in this one privatized Medicare program, which is growing in size and enrollment across the country, was actually overruling clinicians’ decisions about how long patients should be receiving care in facilities. And if the algorithm says they should be done, then they’re done. And I think it definitely sparked some concerns from people in the company who were willing to speak to them just because they were so concerned about this trend.

Rovner: Alice.

Ollstein: I have a very impressive investigation from The Wall Street Journal. There are five bylines, and we will post the link. This is about lead-covered telecom cables owned by AT&T, Verizon, other companies that have been left to decay and leach into the environment all around the country. This documents how the companies knew about them but have not moved to clean them up and get rid of them. They are impacting water sources. They are near playgrounds where children are, and it goes into the very disturbing health impacts of lead exposure. This is something the country has made a lot of progress on when it comes to paint and other sources, but obviously we still have a long way to go.

Rovner: Yeah, because there’s not enough things to be worried about environmentally, here is something else. It is very good reporting.

Rovner: Amy.

Goldstein: My extra credit this week is from The New York Times, by Reed Abelson, with the headline “Medicare Advantage Plans Offer Few Psychiatrists.” And this isn’t a giant story, but I think it is at the nexus of two very important questions: one, the long-standing question of whether privatized Medicare is better or worse for people who are older Americans on Medicare than the traditional version of Medicare; and the question of are people getting enough access to mental health care? And I guess what struck me is that there’s been so much attention lately to the question of access to mental health services for younger Americans, and this looked at the question of access to mental health services for older Americans. And what this story, based on a study, talks about is that the study found that more than half of the counties, the researchers who did this study found, is that those counties did not have a single psychiatrist participating in Medicare Advantage and that a lot of these plans have what’s called “narrow” or “skinny” networks, where a very small fraction of the available psychiatrists in a community were in that plan’s network. Now, [there are] people who are criticizing that study saying, well, you can’t look at just psychiatrists; there are other people who provide competent mental health care. But I think it just raises the question of who is getting what they need.

Rovner: Indeed. Well, my story this week is also about just plain good reporting. It’s called “Doctor Lands in the Doghouse After Giving Covid Vaccine Waivers Too Freely.” It’s by Brett Kelman of KFF Health News. But it’s about some old-fashioned reporting by another outlet, Nashville’s NewsChannel 5. It seemed that during the height of the covid vaccine rollout, when lots of places were requiring proof of vaccines and lots of people didn’t want to get them, the doctor in question, named Robert Coble, was providing waivers through a website without much —OK, any — oversight. How did they prove it? By obtaining a waiver for a reporter’s black Labrador retriever, Charlie. Earlier this spring, Coble quietly surrendered his medical license to the state Department of Health. Journalism works. 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 producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still tweet me. I’m @jrovner. I’m on Threads too, @julie.rovner.

Rovner: Amy.

Goldstein: I’m @goldsteinamy.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on Twitter and @rachelcohrsreporter on Threads.

Rovner: Alice.

Ollstein: @AliceOllstein.

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

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

The Biden administration this week pleaded with states to slow the post-pandemic removal of beneficiaries from their Medicaid rolls, as government data shows more than a million Americans have lost coverage since pandemic protections ended in April. Meanwhile, the Supreme Court ruled Medicaid beneficiaries may sue over their care.

In an appearance at the U.S. Capitol, the outgoing chief of the Centers for Disease Control and Prevention, Rochelle Walensky, offered no revelations as House Republicans pressed her about the agency’s response to the covid-19 pandemic. And senators are pushing for action on drug pricing, with Sen. Bernie Sanders (I-Vt.) vowing to hold up nominations to press the Biden administration for drug pricing reform.

This week’s panelists are Mary Agnes Carey of KFF Health News, Rachel Cohrs of Stat, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll Call.

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Sandhya Raman
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Among the takeaways from this week’s episode:

• Asking states to slow the pace of Medicaid disenrollment, Health and Human Services Secretary Xavier Becerra offered options intended to reduce the number of Americans who lose coverage due to bureaucratic hurdles, such as by allowing community organizations to help people get coverage reinstated. But those options are only guidance for Medicaid programs across the country, and nothing says that states — especially conservative ones that have rushed to trim the number of low-income and disabled people relying on the program — will adopt the administration’s suggestions.
• A deal in the Braidwood Management v. Becerra court case will preserve, for now, the mandate requiring insurance coverage of preventive services for all but the litigants. The threat of a court order halting that coverage mandate nationwide has contributed to growing concerns about the overuse of injunctions allowing a single judge to bring down an entire program or law.
• The Supreme Court ruled that a woman is entitled to sue over the nursing home care her husband received that was covered by Medicaid, setting a precedent that allows beneficiaries to pursue legal action over their care.
• This week, House Republicans pressed CDC Director Walensky about the agency’s response to the pandemic, but, producing few new details, the hearing mostly proved an attempt by Republicans to relitigate concerns over issues like gain-of-function research funding. And Ashish Jha, the White House’s covid coordinator, is preparing to step down without a successor, offering more fodder for the argument that the Biden administration is de-emphasizing covid policy.
• Reports of threats against an Alabama clinic that does not provide abortions illuminate the realities of the post-Dobbs era: Even the state attorney general has taken issue with the clinic’s efforts to provide non-abortion maternal health care — and 40% of Alabama counties already have no access to maternal care.
• And on Capitol Hill, Sanders — head of a key Senate health committee — has said he will hold up reviewing nominations in an effort to pressure the Biden administration to produce a comprehensive drug pricing plan. Meanwhile, another key Senate committee releases its proposal to rein in fees charged by pharmacy benefit managers.

Also this week, KFF Health News’ Julie Rovner interviews Dan Mendelson, chief executive of Morgan Health — the successor project to Haven Healthcare, a joint venture by Amazon, Berkshire Hathaway, and JPMorgan Chase that aimed in 2018 to disrupt how Americans get health coverage but quickly disbanded. Rovner and Mendelson discuss the role of employers in insuring American workers.

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

Mary Agnes Carey: The Washington Post’s “I Lost 40 Pounds on Ozempic. But I’m Left With Even More Questions,” by Ruth Marcus.

Alice Miranda Ollstein: Stat’s “AMA Asks Doctors to De-Emphasize Use of BMI in Gauging Health and Obesity,” by Brittany Trang and Elaine Chen.

Rachel Cohrs: Politico’s “Thousands Lose Medicaid in Arkansas: Is This America’s Future?” by Megan Messerly.

Sandhya Raman: The Markup’s “Suicide Hotlines Promise Anonymity. Dozens of Their Websites Send Sensitive Data to Facebook,” by Colin Lecher and Jon Keegan.

Also mentioned in this week’s episode:

• KFF Health News’ “Biden Admin Implores States to Slow Medicaid Cuts After More Than 1M Enrollees Dropped,” by Hannah Recht.
• Politico Magazine’s “This Alabama Health Clinic Is Under Threat. It Doesn’t Provide Abortions,” by Alice Miranda Ollstein.

click to open the transcript

Transcript: Slow Your Disenroll

KFF Health News’ ‘What the Health?’

Episode Title: Slow Your Disenroll

Episode Number: 302

Published: June 15, 2023

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

Mary Agnes Carey: Hello and welcome back to “What the Health?”. I’m Mary Agnes Carey, partnerships editor at KFF Health News, filling in for Julie Rovner this week. I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, June 15, at 10:30 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. We’re joined today by video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Carey: Rachel Cohrs of Stat.

Rachel Cohrs: Hi, everybody.

Carey: And Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Carey: Later in the episode, we’ll have Julie’s interview with Dan Mendelson, CEO of Morgan Health. That’s the successor organization to the ambitious but ultimately unsuccessful effort by JPMorgan Chase, Amazon, and Berkshire Hathaway to remake employee health benefits. But first, let’s go to this week’s news. The Biden administration announced that more than a million Americans have lost their Medicaid coverage since early April as part of the ending of the covid public health emergency. Administration officials said that too many people were losing Medicaid due to red tape. About 4 in 5 people dropped so far either didn’t return paperwork to verify their eligibility or they omitted documents, according to federal and state data from 20 states. Department of Health and Human Services Secretary [Xavier] Becerra has sent a letter to state governors with some ideas on how to help stop this trend. What is he asking states to do?

Raman: So he gave states a few options. He said states could let Medicaid managed care organizations do a renewal on the beneficiaries’ behalf or let states kind of delay some of these cuts to allow for more outreach or let the community organizations in the state help individuals reinstate their coverage if they’ve fallen through some of the gaps here. But I think the thing to keep in mind is that all this is a guidance. All the Medicaid programs are different from each other. So while Becerra says that these are options, it doesn’t mean that any number of states will actually take on any of these opportunities to get more folks back into the program if they’re eligible.

Carey: To your point, some of the biggest drops in the enrollment in Medicaid have been in those more conservative states that are at political odds with the Biden administration. For example, in last week’s podcast, there was a lot of discussion about Arkansas and Indiana. For the panel, what are your thoughts on how state governments will respond to this guidance from HHS?

Ollstein: This is why there was so much anxiety last year when this was all being hashed out in the bill in Congress. Advocacy groups were sounding the alarm that there just weren’t enough guardrails to prevent this from happening. There were carrots; there were incentives for states to go slower and be more deliberate and careful in how they kick ineligible or, you know, can’t-determine-eligibility people off the rolls. But there weren’t a lot of sticks. There were carrots and not a lot of sticks. There weren’t a lot of penalties or repercussions for states that wanted to go as fast as possible and kick as many people off as possible, even if that meant folks falling through the cracks, which is what’s now happening.

Carey: So Sandhya sort of referenced this a moment ago. But I know, I mean, Medicaid is a shared federal-state program, but states, are they legally required to follow any of this guidance? I mean, what happens if a state just doesn’t do anything that’s in the letter? Does it matter?

Raman: I think the issue is that it doesn’t. I mean, there are some requirements that are applied to all programs if it’s in the Medicaid statute and sometimes when states do things that violate that and it ends up going to court. But I think anything here is they still have to follow what has been in the law that had said that after the public health emergency ended, that they could start slowly ripping people off the program. And that’s kind of the issue here.

Carey: Well, we’ll keep our eye on that one. And it sounds like another solution to find its way through the courts. Speaking of the courts, let’s move on to another major news development, and this one is regarding the preventive services coverage under the Affordable Care Act. It’s also known as the ACA. Texas conservatives that challenge the law’s preventive care mandate have reached a tentative compromise with the Justice Department that preserves free coverage for a range of medical services. Alice, I know you wrote about this agreement this week. Could you start us off and take us through the highlights?

Ollstein: Sure. So this was teased during oral arguments. The judges at the 5th Circuit [Court of Appeals] said explicitly, “Can’t you guys work something out?” And it turns out they could. So basically what the deal does is the Justice Department is agreeing not to enforce the preventive services mandate against the folks who are suing. So this is a group of conservative employers and some individual workers who say that the requirement to buy insurance that covers things like the HIV prevention drug PrEP violate their rights. And so the Biden administration is agreeing, OK, we won’t force you to buy the insurance that the law says you are required to buy. And in exchange, they agree not to push for the law to be frozen nationwide. So basically, everybody else’s insurance coverage gets to stay the same for now. There was a lot of anxiety about the nationwide injunction on the mandate that the lower judge ordered. So that is going to be on hold for now. The arguments on this case are going to drag on a lot longer, but this means that, for now, nationwide, the roles stay the same.

Carey: So how, if you know, how usual is this, in the middle of litigation, to come up with a deal that protects the people that are suing to stop a law, but it doesn’t affect the rest of the population, at least for now? I mean, is that unusual to kind of cut this kind of deal?

Ollstein: I think there has been a lot of debate recently about nationwide injunctions and the fact that some judges seem to like handing them out like candy. And just because of one person or a few people suing somewhere can bring down an entire law or program for the entire country. And there has been anxiety in the legal world about this getting kind of too common and out of hand. And so I think this is a sign that even very conservative judges like the ones on the 5th Circuit are looking for ways to rein it in and limit impacts.

Carey: Rachel, do you want to jump in? I see you nodding your head.

Cohrs: Yeah, it is just important to think about that trend, you know, as we see so many lawsuits play out. I know we’re seeing lawsuits over the Inflation Reduction Act as well. It’s a tactic that is being used. And I think if there is some more intention by DOJ to try to kind of limit the reach of these injunctions, then I think that is a really interesting trend, looking to other areas as well.

Carey: So that sounds like there’s no threat to the fall ACA enrollment season, that a ruling wouldn’t come before that enrollment season that could threaten preventive services for the entire ACA enrollment population and for those employer-sponsored plans as well.

Ollstein: So the 5th Circuit, after they blessed this deal officially, put out a briefing schedule that runs into November, so even after that, there could be more arguments, there could be an appeal up to the Supreme Court. So, yes, this is definitely running on into next year, if not longer.

Carey: OK. Well, the Supreme Court had a ruling this week that preserves Medicaid recipients’ right to sue , and policy watchers are saying that this is a major, major civil rights victory for Medicaid recipients. Before we were taping, we were chatting about it a little bit. Alice, fill us in here.

Ollstein: I mean, the specifics are that this is about a woman’s right to sue the state over the treatment of her husband in a nursing home. He was given chemical restraints, which is a horrible thing, if you look it up, that worsened his dementia. He was drugged, you know, in order to be easier to control, essentially, which is a very damaging practice. But that was sort of just the narrow issue at play. But this was seen as a major victory for any Medicaid beneficiary’s right to sue over not getting the care that they’re entitled to., and so this could have implications in the future for things like coverage of reproductive health services, including abortion, and other areas as well. So there was a lot of anxiety that this conservative Supreme Court majority would move to limit Medicaid beneficiaries’ rights to bring challenges. And that didn’t happen here.

Carey: It was a7-2 ruling, right?

Ollstein: Yeah. Yeah. It wasn’t as close as people thought.

Carey: There you go. So let’s move our discussion from the courts to Capitol Hill. Outgoing Centers for Disease Control and Prevention director Rochelle Walensky appeared before a House panel this week to talk about her agency’s response to the covid pandemic. Rachel, you covered the hearing. What were your key takeaways?

Cohrs: I mean, I think my key takeaway is that Republicans are re-litigating some of these comments that were made in early 2021 and that there wasn’t a whole lot of new revelation that came out. Walensky was pretty well prepared to stay on topic. She kind of deflected questions about gain-of-function research at NIH [the National Institutes of Health, a separate division within HHS] and lawsuits around kind of how CDC officials interacted with social media networks and regarding vaccine misinformation. So, I mean, lawmakers brought those things up, and she didn’t really engage on that at all. But she really didn’t give a lot of ground. I mean, there were criticisms of comments she had made about vaccines preventing the spread of covid-19. And I think her position was that her comments were backed by science at the time, and that as the virus has mutated, the truth about covid has changed. So I think she was not apologizing. It was not really engaging with them. And I think it was just kind of this anticlimactic kind of end. I mean, there had been so much buildup. Lawmakers had been requesting her testimony for, like, two months, and it was over and I don’t think she suffered any really significant hits there.

Carey: Were there any sort of agreement on lessons learned from how the CDC and, more broadly, the Biden administration handled its response to the pandemic? I mean, are there lessons learned here? Is there any road map to doing things differently or better next time?

Cohrs: Well, one thing she did bring up was, she said that the CDC didn’t really have visibility into how many people who were hospitalized with covid were also vaccinated. And I think that led to kind of an interesting back-and-forth. I think Republicans were obviously implying that vaccines didn’t work as well as they were initially pitched to. But I think she pivoted that to saying that “CDC would love more data on this. We don’t have the authority to collect it. And doctors are putting all this information into electronic health records and it’s not making its way to public health departments.” And so I think that kind of fits into the administration’s asks for the pandemic preparedness legislation that Congress is kind of working through right now. So I think she pivoted that to ask for more authority for her agency, which I don’t know that Republicans will be particularly enthusiastic about. But I think that was an interesting back-and-forth where she did concede that they just didn’t have a whole lot of information in the moment.

Carey: Would state health departments have to direct hospitals to collect that and then share it with the federal government, if she’s saying she doesn’t have the regulatory authority to do it?

Cohrs: I’m not an expert in this area, I’ll say. But my understanding is that the CDC was collecting information and had to, like, have individual agreements with health departments on how that was going to be collected. They couldn’t mandate that. So I think it would just make it a lot faster and I think give CDC a lot more authority to compel states to report some of this information in real time.

Carey: Sure. No, I know, that’s been one of the most interesting things in watching and reporting and reading all the coverage of how so many things changed with the covid pandemic as [we] received new information. I mean, it was a place we hadn’t been before, but we might be back there again, so. There’s another high-profile covid official who’s stepping down. Dr. Ashish Jha is leaving his post. I think today is actually his last day as the White House covid-19 response coordinator. This departure was announced a while ago, and it’s not a surprise, especially with the end of the public health emergency. But what do these departures mean for the administration’s future plans to handle covid? I mean, what message does it send to the public with these two folks leaving at this time?

Ollstein: I think if folks are already primed to think this administration is not making it a priority, this is more fodder for that viewpoint. You know, you could also note that these folks have been serving a long time in a very difficult role and this is, you know, sort of natural turnover. But I think that, with all of the protections lifting right now, and hearing very little about covid at all from the administration — I mean, the president hasn’t talked about it publicly in months; he didn’t say anything on the day the public health emergency ended, which folks were a little upset about. So you could see this as more evidence that it might not be a priority for them going forward. You know, on the other hand, they are setting up this, like, permanent pandemic office in the White House, although it doesn’t have a leader yet. So it’s a little TBD.

Raman: With Jha, you know, we don’t have someone replacing him in the way we do with a lot of other positions. So it’s going to be the first time in 14 months now that he’s not there, but it’s also, there’s not someone else there. And if you’re quietly removing that role, it just is another layer of saying, you know, this is less of a priority compared to some of the other things as it gets phased out.

Cohrs: I was just going to pop in and say that I think there’s a really interesting opening for Mandy Cohen here at CDC. There is this vacuum of leadership here. You know, the White House hasn’t appointed anyone to fill that spot. Secretary Becerra really hasn’t shown any appetite in leading on covid, and Dr. Fauci is gone, Walensky’s gone — just so many of these, like, old-guard kind of the covid response in the Biden administration have turned over. And my colleague Helen Branswell had a great story, I think that was sharp about how, you know, Mandy Cohen really is prepared, unlike a lot of other CDC directors in the past, to navigate these political dynamics. And I think it is a recognition that the CDC is political and public health is now political, and they can’t ignore that any longer. So I will be curious to see if they elevate her to communicate some more of that information in the absence of Dr. Jha.

Carey: Sure. And can you just remind our listeners who Mandy Cohen is and why she’s expected to get this job, or be nominated for this job?

Cohrs: Yes, she’s a longtime federal and state health official. I think she was in North Carolina, and most recently she was at a ACO [accountable care organization] company working with another former Obama administration official. And the White House, I think — there’s been a lot of reporting; I don’t know that they have officially tapped her yet.

Carey: I don’t think that’s happened yet. No, that has not.

Cohrs: Right. But it doesn’t have to go through a confirmation process. So if they do choose to move forward, I think the process would move pretty quickly to have her in place. So that is what our reporting has shown. Many other outlets have reported the same thing. So I think that’s just kind of the expectation for who’s next in line.

Carey: Well, let’s move on to another topic that appears frequently on this podcast, abortion. It continues to be a major news story around the country. And I’d like to start our discussion with a story that Alice did for Politico Magazine. Here’s the headline: “This Alabama Clinic Is Under Threat. It Doesn’t Provide Abortions.” So, Alice, tell us why a clinic that doesn’t provide abortion is being threatened.

Ollstein: Yeah. So when abortion became illegal in Alabama from conception, with no exemptions for rape and incest, abortion clinics either closed their doors, some picked up and moved to other states, but some, like the one I profiled, West Alabama Women’s Center, decided to stay and pivot to nonabortion services. And they have found it’s still a very hostile landscape and they very well might go out of business themselves in the coming months. They’re running into legal threats. The state attorney general has suggested that he views the kind of abortion-adjacent care they provide, you know, such as letting people know what their options are in terms of ordering pills or traveling to another state — that he might consider that aiding and abetting an abortion under the state’s criminal law. And so they are bracing for that at all times. At the same time, they have also really struggled financially. Most of their revenue in the past was from abortions, and they mainly serve a population now that struggles to pay for services and is often uninsured. The state has not expanded Medicaid, and so lots and lots of low-income people are uninsured. And so it’s just showing that what it means to be under threat in the post-Dobbs era is really different than what it meant to be under threat in the pre-Dobbs era and just how sparse the health care landscape is at all. There are just so few providers, hospitals in these areas, lots of places going out of business. And if clinics like this and other red-state clinics can’t survive, there’s going to be a lot of health care consequences.

Carey: I think in your story you said that 40% of the state was considered a maternal health desert.

Ollstein: Yeah. Right. Which means no access in those counties. And even more of the state is considered low-access, and so people are really struggling to find anywhere to go. A lot of rural hospitals have closed entirely. A lot are on the brink of closure. Some have closed their maternal care units. And so there’s just fewer and fewer options, especially fewer and fewer options for people to feel safe going to if they have an abortion either out of state or at home with pills and need follow-up care. Folks are afraid to go to a regular provider or hospital over fear of being reported to law enforcement, which is actually happening in a lot of places.

Carey: We just talked about the South. Let’s move to the Midwest. In Ohio, voters are going to head to the polls in August to weigh in on a proposal that, if passed, would require at least 60% of voters to pass any amendment to the state’s constitution. And that’s up from the current requirement of a simple majority. There would also be new, higher requirements on the number of signatures needed to get a constitutional amendment on the ballot. A Republican lawmaker in favor of the changes said they were aimed at blocking an abortion rights question that abortion rights supporters had hoped to get on the November ballot. So that’s Ohio. So in Indiana, there’s a separate issue. A class-action lawsuit asserts that the state’s abortion ban violates Hoosiers’ religious freedom. That lawsuit, which was filed by the ACLU [American Civil Liberties Union], says that Indiana’s abortion ban violates a religious freedom law that was once championed by former Indiana Gov. Mike Pence, who we know served as vice president to Donald Trump and is now challenging former President Trump and other Republicans for the 2024 GOP presidential nomination. Thoughts from the panel on these developments?

Raman: I think what’s happening in Ohio is pretty interesting because, you know, we’ve had other states before kind of try to change the threshold for passing something by ballot. And a lot of times it’s not said explicitly, but advocates have said that it’s targeting some measure, whether it’s Medicaid expansion or something else. And here we have a representative and the secretary of state kind of being pretty clear that it is about abortion in this case. And I think it being the secretary of state is especially interesting, because the secretary of state is who is certifying ballot measures and who you would look to for being the person in charge of that and making sure, you know, the t’s are crossed, the i’s dotted. So what happens there will be pretty interesting because that’s kind of an unusual play. And already we’re looking at an August ballot versus traditionally the November ballot. And a lot of times when things are pushed for a different date versus, like, traditional election day, it’s kind of, see if we can get a different turnout or kind of discourage people that might vote one way or the other. So it’ll be interesting to see how this kind of plays out in August or if there are changes before then.

Ollstein: And as for Indiana, I mean, this is one of a bunch of cases around the country where religious people are challenging abortion bans as infringing on their beliefs and right to practice. It’s sort of flipping the assumption on its head. You know, you have a lot of religious support of abortion bans. And this is showing that there are folks on the other side as well within the faith community. And it’s especially interesting in Indiana because they’re challenging one law signed by Mike Pence — the state’s pre-Dobbs abortion ban — by using another law signed by Mike Pence, which is the state’s RFRA law [Religious Freedom Restoration Act], the religious freedom law, and saying that, you know, the state law imposes one particular religion’s view of when life begins and when abortion is or is not acceptable. And that’s not shared by all people of faith. And in Judaism, a child is not a child until it takes its first breath, and that conflicts with abortion bans that are much earlier in pregnancy that sort of posit that it is a child and a life before that. So this will be really interesting to watch.

Carey: Sure. We’ll be watching all these cases very closely. But we’re going to turn now to another topic that’s important to millions of Americans, and that’s the cost of prescription drugs. Sen. Bernie Sanders — he’s a Vermont independent who chairs the Senate Health, Education, Labor and Pensions Committee, also known as the HELP Committee — he’s vowed not to move forward with any Biden administration health nominees, including the president’s pick to head the National Institutes of Health. That’s Dr. Monica Bertagnolli. Sen. Sanders is saying he’s going to keep this hold on until he sees a comprehensive plan from the White House on how to lower drug prices. What is he upset about specifically? And is he going to have other senators — have they joined him? Do you think that will be in the cards, or is this kind of a one-man band here?

Cohrs: My take on this is that he knows he can’t get the votes in Congress, so this is kind of his only option, is to try to pressure the administration to do it. And the only lever he has is nominees, so he’s using that. I don’t know how long he’ll hold out on this. I mean, it is — basically he’s arguing that the public has invested research dollars to help develop kind of the basic science that’s the foundation for a lot of important medications. And right now, the government isn’t really getting enough return on that investment. And there’s no requirement that companies that end up actually manufacturing these drugs and bringing them to market would price them in a fair, reasonable way. And so, I think his staff put out a report as well, with a release to the Post, making that argument, that the NIH could have leverage here if they chose to, and that in the past there have been clauses in contracts that could have given the government some leverage to go after these companies more aggressively but they’re just choosing not to. And so far, the Biden administration has shown no appetite to go after companies’ patents because of pricing issues. It’s never been done before. But I think, you know, Sen. Sanders realizes that he has an opening here, and he’s using the bully pulpit as much as he can. But I think ultimately I don’t see how this is resolved. And I think given that the Biden administration has overseen the passage of the most significant drug pricing reform in 20 years — which doesn’t fix all the problems, will say that. I think Sen. Sanders sent a letter about —

Carey: It’s in the Inflation Reduction Act, right?

Cohrs: Yes. Yes. The Inflation Reduction Act.

Carey: Which he voted for, OK.

Cohrs: Yes, he did vote for that. But I think there are outstanding issues about new medications especially that he’s trying to highlight here and saying, The problem isn’t fixed. We need to do more.

Carey: And so separately, a bipartisan group of Senate Finance Committee members have unveiled a proposal that they said would reform pharmacy benefit managers, or PBMs. That’s another entity we talk a lot about on the podcast. And the belief is that this measure would lower the cost of drugs. Rachel, I know that you have been covering this plan. Can you tell us about it?

Cohrs: I don’t know that this would lower the cost of drugs necessarily, and I think it’s more limited than the lawmakers who are sponsoring it have claimed it is. I think the problem that it’s trying to solve is that the payments between drugmakers and PBMs, and PBMs and the insurance companies or the employees that they’re working for, have traditionally been tied to a drug’s price. And so, just kind of like the — if anyone’s familiar with the medical loss ratio from the Affordable Care Act — it’s a similar idea, that if the price is higher, then there’s a bigger piece of the pie for everyone, percentagewise. So this bill aims to delink some of the fees in contracts with PBMs from the price of drugs. Now, this doesn’t change the rebates that drugmakers and PBMs negotiate on themselves, doesn’t touch that at all. It’s just fees. So I think it’s kind of hard to know how these work. You know, we don’t have them. They’re not public, but I think they’re trying to get at regulating this space a little bit more and trying to align those incentives a little bit better to make sure PBMs aren’t preferring more expensive medications for their own gain.

Carey: And what’s been the response from the PBM industry?

Cohrs: It is pretty fresh, but I think in general they have argued that the reason for high prices is drugmakers, because they set the prices. And I think this has been a food fight that’s been going on for a very long time. But I think lawmakers are kind of coming around to the idea of doing some sort of reform to the PBM industry. We’ll just have to wait and see what that ends up looking like.

Carey: All right. Well, we’ll keep our eyes on that one as well. And that’s this week’s news. Now we’re going to play Julie Rovner’s interview with Dan Mendelson of Morgan Health, and then we’ll be back with our extra credits.

Julie Rovner: I am pleased to welcome to the podcast Dan Mendelson, CEO of Morgan Health, a new business unit of the financial services giant JPMorgan Chase. Morgan Health’s goal is to improve health care for the company’s more than a quarter of a million employees and dependents, as well as everyone else with employer-provided insurance. If that sounds familiar, that’s because Morgan Health is the successor organization to Haven Healthcare. That was the high-profile 2018 project of JPMorgan, Amazon, and Berkshire Hathaway to remake the U.S. health care system from the ground up, led by one of the nation’s leading health care thinkers, surgeon, author, and policy wonk Atul Gawande. Today, Gawande is running global health programs at the U.S. Agency for International Development. Haven is no more. And if you listened to our special 300th episode earlier this month, our experts came down pretty hard on employers’ contributions to fixing what ails the health care system. So I’ve asked Dan here to talk about what is going on. Welcome, Dan.

Dan Mendelson: My pleasure.

Rovner: So, Dan may not have as high a public profile as Atul Gawande, but he has broad and long experience in health policy, from overseeing federal health programs at the Office of Management and Budget during the Bill Clinton administration to founding and growing Avalere Health, a successful health care consulting and advisory group. Dan, why did this job appeal to you and what made you think you could succeed where so many have tried before and failed, including very recently?

Mendelson: Look, this is a collaborative effort, and we’re working closely with a whole range of stakeholders from insurers to providers. I mean, the work that we’re doing in Columbus, for example, is with a really innovative primary care practice called Central Ohio Primary Care that has broad experience in delivering value through accountable care models in Medicare. So, I’d say that our belief that we will succeed really comes from the fact that we’re taking a very collaborative approach with other stakeholders in the health care system.

Rovner: Let’s start at the very beginning. Why are employers interested in the nation’s health care system and how it works? For most of them, it’s not their main line of business.

Mendelson: Well, I’d say that employers feel an obligation to provide insurance for their employees, and it’s an important benefit, and it’s one that employees expect. And it’s also an opportunity for employers to provide for the health and well-being of their employees.

Rovner: So employers really did used to drive a lot of health care innovation, probably coming only after Medicare in terms of shifting actual health care delivery. But they seem to have taken a back seat lately. What changed?

Mendelson: Well, look, you know, you had employers really active in the quality movement, and NCQA came out of employer interest, for example. So there really was kind of a head of steam. But it did wane. And I think that anyone who’s looking at the scene sees that Medicare and Medicaid have made a lot of progress with respect to driving accountable care and quality, whereas, at this point, there’s really … most of what’s happening through employers is fee for service. And it’s really problematic in terms of driving the quality agenda.

Rovner: And NCQA, that’s …?

Mendelson: National Commission for Quality Assurance.

Rovner: Thank you. The National Commission for Quality Assurance. Yeah, which used to be a big deal. And you’re right, I think most of what we’re seeing is now going on in the Medicare and Medicaid space. I feel like, you know, the millions of people who have employer-provided insurance right now have three main problems: the increasing unaffordability of care, with large and growing deductibles and copays; the increasing time and effort it takes to figure out what is and isn’t covered, and fighting for things that aren’t covered to be covered sometimes; and the fragmentation of the delivery system, making what was already hard to navigate very nearly impenetrable for some people, including people who are sick. I assume you’re trying to address all of those.

Mendelson: Yeah, we’re focused on quality and improving the quality of services, for sure. We’re focused on affordability. And then the one that you didn’t mention is health equity, which is one of the most difficult aspects of health care in America today, and certainly our focus as well. I mean, we see inequity in the health care system in the employer space, as well as in Medicare and Medicaid. So that’s also a target for us.

Rovner: What kind of steps are you taking to fix some of these problems? I mean, I know it’s what people get frustrated most with. It’s, like, they have insurance, but they feel like they can’t use it very well.

Mendelson: Yes. So, the way that we’re structured, there are three things that we’re doing to address these issues. And I’d say that we see our efforts as very collaborative. So we don’t believe that we alone can fix these problems, but rather what we’re doing is really driving innovation and trying to get employers, more broadly, focused on innovation in health care. So there are three ways that we’re doing this. First is that we’re investing, from the JPMorgan Chase balance sheet, in innovative health care companies that are proven to drive quality, improve quality, reduce costs, and better health equity. So that’s the first piece. And we can talk a little bit about some of the investments that we’ve made in the first two years of our operation.

Rovner: Give me one example of a company that’s doing that that you’re investing in.

Mendelson: Yes. An example is apree health. apree is a company that offers a[n] accountable care product to employers. And we’re using apree in Columbus, where we have 40,000 employees and dependents, and we’re now offering their services to our employees as an option to drive better health care.

Rovner: What do you see as the biggest challenge in health care going forward, particularly from the employer point of view?

Mendelson: Well, look, we’ve talked about a number of the issues. I’d say that, you know, we’re focused broadly on accountable care — and “accountable care” meaning making sure that there is a focus on quality and cost that is being held by an organization that can really take responsibility for care. So, to me, it’s really about alignment of incentives and making sure that those incentives are aligned not only in the employer sector but also across in the public programs.

Rovner: So you’re involved in private equity and, you know, the track record of private equity in health care, which was supposed to be an effort to get incentives aligned, hasn’t always worked out so well. I mean, in a lot of cases we’ve seen private equity just sucking money out of the health care system rather than putting it back in.

Mendelson: Look, as an investor, what we’re focused on is finding companies that are driving innovation and helping them succeed. And we’re putting our capital behind these companies, but we’re also really spending the time with them to make sure that they can be effective. And so, you know, we’ve done five investments over the course of two years, and they’re not only in accountable care, but also making sure that there’s good primary care in the system, driving better digital care, shifting expensive care from inpatient and outpatient settings into the home. So these are all facets of how employer-sponsored health care needs to be improved, and that’s the focus of our investing.

Rovner: So what does it look like when you get it all fixed?

Mendelson: When we get it all fixed …? I mean, look, I think we’re going to be at this for quite some time. But it’s really important for employers to articulate their needs and to make sure that those who are offering insurance for their employees are actually being attentive to not only cost but also quality and health equity. And I think that the facet that we’re really looking for is to make sure that health care improves and that these improvements are coming along not only in the public programs but also in the employer sector.

Rovner: Dan Mendelson, thank you so much for joining us.

Mendelson: My pleasure.

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

Ollstein: Sure. I chose a piece in Stat by Brittany Trang and Elaine Chen. It’s called “AMA Asks Doctors to De-Emphasize Use of BMI in Gauging Health and Obesity.” I’ve heard in the medical community there has been a lot of discussion about moving away from using the BMI [body mass index] to evaluate people’s health. It was created to track population-level statistics and was never intended to be used to gauge individual health. It was not invented by someone with a medical background at all. And so people have been saying that, you know, it’s inaccurate and it leads to a lot of stigma. And so it’s interesting to see that sort of bubble up to this very mainstream, leading health care organization saying, “Look, you can’t just rely on the BMI. You also have to look at all these other factors.” Because extremely fit NFL players have really high BMIs, you know. You can’t — someone’s size does not necessarily determine their health. You can have people of all sizes be healthy or unhealthy. So this was encouraging to see.

Carey: Great. And for folks interested in more on that, we have a lot of coverage on that at kffhealthnews.org, so check that out. Rachel, why don’t you go next?

Cohrs: Sure. My piece this week is by one of Alice’s colleagues in Politico, Megan Messerly, and the headline is “Thousands Lose Medicaid in Arkansas: Is This America’s Future?” And she kind of got out beyond the Beltway and just spent some time in Arkansas really talking to everyday people who were having trouble staying on Medicaid. And I think it’s easy to get caught up in just talking about numbers and talking about policies and all of that. But I think she really brought to life the issues and the barriers that some people are facing in Arkansas, which really is the center of these disenrollments that we’re seeing right now. So I think it was really timely, really well done, very much put the human face on both the people who are getting disenrolled, but also kind of some of the on-the-ground efforts to stop that from happening and just kind of the challenges that they are working on with these compressed timelines. I thought it was really well done.

Carey: Yeah, it’s a great story. Sandhya.

Raman: My extra credit this week is called “Suicide Hotlines Promise Anonymity. Dozens of Their Websites Send Sensitive Data to Facebook.” It’s by Colin Lecher and Jon Keegan for The Markup in partnership with Stat. And I thought this was just a really interesting piece that investigated whether crisis center websites that were using Meta Pixel, which is like a piece of code that tracks user behavior for advertising that a lot of sites use — and just, like, the worry here is sharing sensitive information to Facebook, especially when it is personally identifiable. And with the crisis center, it’s much, much more sensitive data than, you know, maybe, like, shopping habits. And so they looked at data from 186 local call center websites. And I will let you read to see how many of them were using this.

Carey: Mine is from Ruth Marcus at The Washington Post. And it’s called “I Lost 40 Pounds on Ozempic. But I’m Left With Even More Questions.” In this article, she talks about her lifelong struggle to lose weight, to keep it off, but how those pounds always find their way back. And Marcus explores the history and the science behind the weight loss drugs. And she also takes on societal debate over obesity itself: Do we think of it as a personal failing, or is it a disease, a chronic condition whose underpinnings are in genetics and brain chemistry? It is a great read. All right. That’s our show for the week. And as always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review; that helps other people find us too. Special thanks, as always, to the amazing Francis Ying, our producer. You can email us with your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @maryagnescarey.

Carey: Alice.

Ollstein: @AliceOllstein.

Carey: Rachel.

Cohrs: @rachelcohrs.

Carey: And Sandhya.

Raman: @SandhyaWrites.

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

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