Healthcare Costs Archives - 吃瓜不打烊 /topics/health-care-costs/ 吃瓜不打烊 produces in-depth journalism on health issues and is a core operating program of KFF. Fri, 28 Aug 2026 20:58:54 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.8 /wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 Healthcare Costs Archives - 吃瓜不打烊 /topics/health-care-costs/ 32 32 161476233 High Fertility Costs Push Americans Abroad for IVF Treatment /health-care-costs/ivf-tourism-fertility-in-vitro-fertilization-high-costs-pregnancy-parenthood-greece/ Fri, 28 Aug 2026 09:00:00 +0000 /?p=2272088 In the summer of 2024, Emilie and Justin Solomon found themselves on a top-secret mission in Greece.

Their family and friends thought the adventure-loving couple was on another jet-setting vacation, but they were keeping something else under wraps: They had turned off their phone locations to hide visits to a Greek clinic where they were trying to get pregnant.

The Solomons are among the growing numbers of Americans looking abroad, particularly to Greece and Spain, to escape the high cost of fertility treatments in the U.S., where such procedures are often not covered by insurance. The treatments include , which involves ovulation stimulation, retrieving the eggs, fertilizing them in a lab, and transferring the embryos into the uterus. Other less intensive medical therapies also address infertility.

A man and woman pose for a selfie on sunny day in a rocky landscape in Greece.
Emilie and Justin Solomon visited Greece for IVF treatment in 2024 after they were quoted $40,000 for one round of treatment in Florida. (Emilie Solomon)

President Donald Trump has made fertility, and IVF in particular, a focus of his administration’s agenda after he for women during his 2024 campaign. His administration intended to make it easier for employers to offer fertility coverage, although it has yet to be finalized. So far, the most concrete result has been lower costs for some IVF medications through TrumpRx, a site where cash-paying patients can find some discounted medicines through participating pharmacies. The White House projected that patients could save .

While significant, those savings are up against a since 2014, according to GoodRx, a prescription discount service. A released in July by Axene Health Partners and the Women’s Reproductive Health Foundation found that the overall cost for a cycle of IVF was over $29,000 鈥 or 35% of the median annual household income in the U.S. Genetic testing, embryo storage, pregnancy care, and delivery costs can push the total over $54,000 per IVF-conceived birth, according to the study. An average patient needs two to three cycles to successfully have a child, so the costs for many patients would be even higher.

Infertility affects people in the U.S., but only an estimated 24% of treatment needs are met, because of those high costs and limited insurance coverage, according to the American Society for Reproductive Medicine. The condition is believed to be of people having children later, as well as such as pollution.

Still, were born via IVF in the U.S. in 2024 鈥 a record, according to the Society for Assisted Reproductive Technology. An increasing share of people hoping to be parents are seeking help in Europe: The number of Americans choosing European clinics grew by more than 37% last year, according to , the chair of the European Fertility Society, a group that tracks data on fertility treatment in Europe.

The Solomons knew IVF was their only chance to have children together biologically, because Justin had testicular cancer in his late teens. What the college sweethearts had not expected was the cost 鈥 and they learned early in their IVF journey that their insurance would not cover their treatment. While some states have passed laws to require insurers to pay for some fertility care, the coverage .

When the couple first explored IVF in Florida, where they live, they were quoted $40,000 for one round of treatment. The price shocked them, and Emilie said the clinic’s offer of a spring discount for an embryo transfer felt “off-putting.”

“They just kind of prey upon your hopes and dreams to be parents,” Emilie said.

Treatment Plus Island-Hopping Tours

The price of IVF and uncertainty around in Florida, which the Solomons feared their control over their embryos, sent them to the Pelargos IVF Medical Group in Athens. There, in the first of two trips, Emilie underwent ovulation stimulation and egg retrieval.

Including medication, fertilization, storage, and the ultimate embryo insertion, the total treatment cost about $12,000, not including travel, according to the Solomons, a fraction of what they might have spent in America. That affordability drew the couple abroad, but so did the allure of sightseeing and experiencing a new country.

On that first trip, they spent a weekend between doctor appointments exploring the Greek island of Milos. Between Emilie’s hormonal injections, they rented a boat to explore the island. Their video from the trip shows them climbing the island’s striking white volcanic cliffs, and Emilie floating in the turquoise water of the Aegean Sea. Despite the emotional and physical toll of the IVF process, the couple remembers being in a little bubble, away from everyone, exploring a beautiful place.

“It was one of the best summers that we’ve had,” Emilie said.

A selfie of Emilie Solomon with her husband, Justin.
In Greece, the Solomons were able to get a round of the IVF treatment for about $12,000, not including their travel expenses. (Emilie Solomon)

When they traveled back to Greece for their embryo transfer in October 2025, they spent two days in Croatia.

IVF in Greece using a patient’s own eggs typically costs around $3,000 to $4,000, not including medication, so even with travel, it is often a fraction of what patients pay in the U.S.

“Americans choose Greece because they can access treatment that is more affordable, faster to begin, and well supported for international patients,” Dejewski said.

A professional headshot of Jakub Dejewski.
Jakub Dejewski, the chair of the European Fertility Society, which tracks data on fertility treatment in Europe, says the number of Americans choosing European IVF clinics grew by more than 37% in 2025 from the year before. (Dawid Linkowski)

Patients in Greece do face some legal restrictions: Embryo storage is time-limited, donor anonymity is standard, sex selection and embryo-transfer numbers are restricted, surrogacy access is limited for nonresidents, and patients must carefully consider documentation requirements if they plan to move embryos between Greece and the U.S.

Penny Ampatzi said she is clear about these legal differences when Americans consult with her clinic in Athens. Serum IVF offers to schedule airport pickup for patients, as well as island-hopping tours. Ampatzi, the co-founder and clinic director at Serum IVF, said the main draw for the dozen or so American patients her clinic sees each month is the personalized fertility treatment plans. Affordability is close behind. A cycle at her clinic costs just under $6,000, not including embryo freezing. Almost all of Serum’s patients are foreigners, according to Ampatzi.

“You consider that you have a good possibility of success, plus you don’t pay that high amount of money, and you also have combined the treatment with holidays 鈥 so it’s a 鈥榃hy not?’” she said.

Not Without Risks

IVF costs in the U.S. have been driven up by a mix of inflation, a shortage of embryologists, a surge in demand after pandemic backlogs, and private equity ownership, Dejewski said.

William Kiltz, vice president of marketing and business development at U.S.-based , said that the costs are becoming too far out of reach. “IVF is almost a treatment that only the top 1% can afford reasonably,” he said.

Kiltz said CNY’s model 鈥 offering IVF for around $8,000, not including embryo storage, at its 18 locations across the country 鈥 brings just enough profit to “keep the lights on” and open new locations while keeping its costs lower. “We’re trying to deliver this care at the absolute bare-minimum cost,” he said.

More than half of CNY’s patients travel from out of state in search of those lower-cost options, Kiltz said.

He said he hopes the IVF market will eventually settle out, as happens with many new technologies. But nearly five decades in, that normalization hasn’t come. Kiltz believes that’s because the market is so emotionally driven.

“People will do just about anything,” Kiltz said. “There’s certainly some risk in something like that, where the demand and the desire from a single individual is so strong that they could be taken advantage of.”

, the head fertility doctor at the CNY location in Norfolk, Virginia, pointed to the difficulties of trying to vet a clinic overseas when one doesn’t speak the language or understand the local IVF regulations. It also can be challenging to transport temperature-sensitive medication back home.

“It’s almost like a full-time job trying to play regulatory expert and inspector all at the same time, while you’re a patient,” Pakrashi said.

She said she also has had patients who sought treatment abroad return to her clinic struggling to transfer records or understand a diagnosis they received overseas. They often have to repeat tests.

And going abroad for IVF is still out of reach financially for many Americans.

The Solomons said seeking treatment overseas takes a certain type of adventurous spirit, too. But for them, all the logistics and travel were worth it. Their one cycle of IVF and two trips to Greece allowed them to welcome a healthy baby boy this summer.

A photo of Emilie Solomon in a hospital bed. She holds her newborn son in her arms. Her husband, Justin, is by the bed.
After undergoing one round of IVF treatment in Greece, Emilie Solomon gave birth to a son this summer in Florida. (Susie Urff)
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Summer鈥檚 Health Policy Themes /podcast/what-the-health-461-affordability-measles-pennsylvania-dolly-parton-august-27-2026/ Thu, 27 Aug 2026 19:10:32 +0000 /?p=2279917&post_type=podcast&preview_id=2279917 The Host
Julie Rovner photo
Julie Rovner 吃瓜不打烊 Read Julie's stories. Julie Rovner is chief Washington correspondent and host of 吃瓜不打烊’ 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.

Summer may be approaching its end, but the health policy stories that have marked the season continue. In Washington and across the country, public health officials are still struggling with outbreaks of vaccine-preventable diseases such as measles, while states and health systems are preparing for the impact of major federal funding cuts to their Medicaid programs.

This week’s panelists are Julie Rovner of 吃瓜不打烊, Shefali Luthra of The 19th, Rachel Roubein of The Washington Post, and Margot Sanger-Katz of The New York Times.

Panelists

Shefali Luthra photo
Shefali Luthra The 19th
Rachel Roubein photo
Rachel Roubein The Washington Post
Margot Sanger-Katz photo
Margot Sanger-Katz The New York Times

Among the takeaways from this week’s episode:

  • More Americans are struggling to afford health coverage, even before some of the biggest GOP-initiated changes to Medicaid and Affordable Care Act plans take effect next year. And the federal government’s efforts to block coverage of drugs used in gender-affirming care and to claw back ACA subsidies are creating access issues for a wider pool of Americans.
  • Pennsylvania health officials this week reported two measles-related deaths amid an ongoing outbreak and the national debate over vaccines. While many of the actions taken by the U.S. Department of Health and Human Services under Robert F. Kennedy Jr. remain held up in litigation, President Donald Trump has made his personal skepticism about vaccines known, including through his recent executive order. Meanwhile, the administration is scaling back enforcement of civil rights protections for people with autism.
  • The Trump administration is inviting states to participate in price negotiations with manufacturers over GLP-1 drugs if the states opt to offer the drugs through their Medicaid programs. But, amid concerns over cost, only one state has taken the federal government up on its offer.
  • And farewell to Dolly Parton, the superstar country music singer and songwriter, also known for her philanthropic work, who died this week at age 80. In addition to her donation in 2020 supporting the development of the mRNA-based covid vaccine, Parton funded pediatric infectious disease research, a women’s health center in the Tennessee county where she was raised, and training for pediatric medical professionals.

Also this week, Rovner interviews Dean Rosen about his work for former Sen. Nancy Landon Kassebaum, a Kansas Republican and the first woman to lead a major Senate committee, who died last week at age 94.

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 “,” by Tamar Haspel.  

Margot Sanger-Katz: Stat’s “,” by Anil Oza.  

Rachel Roubein: The New York Times’ “,” by Noah Daly and Andrew Jacobs.  

Shefali Luthra: The Washington Post and 吃瓜不打烊’ “,” by LJ Dawson.

Also mentioned in this week’s podcast:

  • Stat’s “,” by Daniel Payne.
  • Modern Healthcare’s “,” by Nona Tepper.
  • Stat’s “,” by John Wilkerson.
  • The Washington Post’s “,” by Naema Ahmed, Lena H. Sun and Aaron Steckelberg.
  • CIDRAP’s “,” by Meghan Holohan.
  • Stat’s “,” by Elizabeth Cooney.
  • Politico’s “,” by Kelly Hooper.
  • 吃瓜不打烊’ “Trump Puts Autistic Kids in the Spotlight and Cuts Agencies Built To Protect Them,” by Claire Sibonney.
Click to open the transcript Transcript: Summer’s Health Policy Themes

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

Julie Rovner: Hello, from 吃瓜不打烊 and WAMU Public Radio in Washington, D.C. Welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for 吃瓜不打烊. And, as always, I’m joined by some of the best and smartest health reporters covering Washington. We’re taping this week on Thursday, Aug. 27, 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.  

Today we are joined via video conference by Margot Sanger-Katz of The New York Times. 

Margot Sanger-Katz: Hello, everybody. 

Rovner: Shefali Luthra of The 19th. 

Shefali Luthra: Hello! 

Rovner: And Rachel Roubein of The Washington Post. 

Rachel Roubein: Hi. 

Rovner: Later in this episode, we’ll have my interview with Dean Rosen about his time working for Kansas Republican Sen. Nancy Landon Kassebaum, who died last week at the age of 94, and how she represented a type of lawmaker we don’t see that much anymore. But first, this week’s news. So we’re taking the next week off for a needed break for our entire team, which makes this the last podcast of the technical summer. And I thought I’d do something just a little bit different. I’m going to break the discussion up into what I’m calling “The Themes of the Summer” 鈥 things we’ve talked about nearly every week. I hope it gives some of you the realization that I get from putting this together every week, that we’re looking less at a long list of separate events and items and more at pieces of a much larger picture that we don’t often see. 

So, theme No. 1 this week is declining health coverage. When Republicans passed their big budget bill last summer, they thought they were being clever by backdating most of the Medicaid cuts so they wouldn’t happen before the 2026 midterms. Well, the problem for them is that states and health systems are already making their own cuts in anticipation of those federal cuts to come, and people are already starting to feel them. This week’s evidence is from a Stat News piece called “,” and it includes ways that access is shrinking overall, particularly in heavily rural states like Maine and Louisiana, as the number of people without insurance goes up and the money from the government goes down. Is it really possible that Republicans didn’t see this coming? Or did they really believe they could take a trillion dollars out of the nation’s healthcare system and not have people notice? 

Sanger-Katz: I think that many of them were not paying very close attention. I think it may be accurate to say that they were indifferent to this possibility and are, in fact, surprised now to see the way that it is working out. I just, you know, for context, this bill that made these very large cuts to Medicaid and some smaller cuts to Obamacare funding was part of this huge package that included, you know, major tax cuts and tax reforms that were a big priority for Republicans, changes to energy policy, changes to other social welfare programs, changes to education policy, and, you know, they called it the One Big Beautiful Bill. And I think the bigness of it is easy to forget, in retrospect. But I think for a lot of lawmakers, they were really focused on the parts of the bill that they really cared about. For many of them, it was the tax part of the package. And the president and their leadership repeatedly told them not to worry about the Medicaid changes, characterized them as not being cuts. And I think, you know, a good, responsible lawmaker ought to do some diligence about that. But I think that many of them maybe took their eye off of the healthcare parts of the bill, were focused more on these other parts of the bill, and now are really starting to see what is happening in their home states as these policies are starting to roll out. 

Roubein: And I also think it’s true that, like, some of the full impacts, as I think Daniel Payne pointed out in his Stat piece, won’t be felt for years to come, particularly as the Medicaid work requirements do kick in next year. So once there are more concrete human faces and examples, that tends to come to more the forefront and, like, you know, the political mind. So yes, those changes a lot of them are not fully going into effect till after the midterms. 

Rovner: I do think that one thing that lawmakers really didn’t appreciate was how much this might impact not just people who would be losing coverage, but people who would be losing access. I mean, people who still have coverage, but, you know, if a hospital can’t keep its door open, or a clinic can’t keep its door open, or a doctor can’t, you know, keep the practice going, that’s going to impact people with insurance as well as people who are losing their insurance. I mean, that’s, I think, that’s part of why this piece went to explore some of these more rural places, where people are going to feel this first. Shefali, I see you nodding. 

Luthra: Yeah, one thing I’ve been thinking about a lot is you do hear Republicans, especially someone like [Maine Sen.] Susan Collins, really trying to tout the rural health fund that was part of this, right, and that was meant to, at least rhetorically, offset these massive healthcare cuts. Obviously, you look at math, you look at numbers, and one doesn’t really undo the other. But 鈥  

Rovner: Yeah, the rural health fund is, what, $150 billion of $1 trillion 鈥 ? 

Sanger-Katz: $50 billion, I think. 

Rovner: Or, oh, it was even less. 

Luthra: And so, yeah. I mean, I think what maybe people didn’t fully appreciate is that voters are less compelled, perhaps, by [lawmakers] saying I voted for this funding, and more compelled by what they see happening around them, which is these massive cuts resulting in major changes to what is often the biggest employer, what is often the only source of healthcare for miles, something that is very intimate, very much of the community. And that’s why this is just such a potent issue, especially in a lot of these really close Senate races now. 

Roubein: I mean, we’ve seen in the past how rural healthcare can impact politics. With Medicaid expansion, Republicans were really, really, really against it, and then you saw some begin to change their mind 鈥 North Carolina being a notable example, and just all of the ballot measures in red states 鈥 Oklahoma, for instance. 

Rovner: Idaho. 

Sanger-Katz: I think it’s worth just pointing out how much is still to come. I think a lot of what we’re seeing right now is hospitals and other healthcare organizations that were kind of in a difficult financial situation going into this change in policy. They’re looking around, they’re already in the red, and they see they’re not going to get more money in the future; they’re going to get less money. And so I think a lot of them are accelerating changes that they were hoping to stave off. But the real cuts in almost all cases have not come yet. So, you know, the work requirements, as Rachel noted, are going to reduce the number of people who are covered by Medicaid. So that means that a lot of these healthcare organizations are going to have to absorb uncompensated care that was previously paid for. But then, further down the road, there are actually much larger cuts that are coming to state Medicaid budgets that are done in these kind of complicated, a little bit obscure, formulaic ways. But there are these reductions on how much the state can directly pay hospitals for care. There are reductions in how much states can raise through Medicaid taxes that then get transferred back. And there, I think, have been very valid criticisms of these funding mechanisms for Medicaid. They are this kind of Rube Goldberg complicated ways of financing the program, but they’ve been around for decades, and these healthcare organizations and these state budgets have really been built on the foundation of these funding streams. And so, as that money starts to go away, I think, then we may see even larger impacts because, again, the things that are happening now are healthcare organizations looking down the road and thinking, Ooh, it’s going to get messy. Maybe I should start adjusting now. But down the road, it will start getting messy for them, and I think there are going to be potentially some much harder choices for some of these organizations. 

Rovner: Well, continuing along that theme, , we talked earlier this summer about a new rule from the Centers for Medicare & Medicaid Services to enforce the administration’s ban on the use of the Medicaid or CHIP [Children’s Health Insurance] Program to pay for gender-affirming care for minors. But it seems that the mechanism CMS is using could open the door to denying coverage for other drugs too, or at least some uses of other drugs. Now, this isn’t in the Stat story, but, Shefali, when I read it, I wondered if one goal here is to cut back on the use of drugs like misoprostol, which is used for a lot of things, but also for medication abortion. 

Luthra: That’s a really good question, and I think one that we still don’t really know. And obviously, a lot of states’ Medicaid doesn’t cover abortion to begin with. That really only happens in states that have actively made an effort. But, I mean, misoprostol is not only used for abortion; it is used for miscarriage management. And I think it’s just something really important for us to keep in mind what happens when you see these sorts of approaches to just, like, carving out individual forms of healthcare. And obviously, it’s very interesting as well because drugs used for gender-affirming care are also used for other things. RFK [Robert F. Kennedy] Jr. really loves hormone therapy for many people, just not trans people. And so I think there’s just a lot of questions that we don’t really have answers to about just how sweeping the implications of something like this could be. 

Rovner: Yeah, we will see as it goes. Well, it’s not just Medicaid. that CMS is clawing back billions of dollars in Affordable Care Act premium subsidies from insurers who have allegedly phantom enrollees, people with zero premium plans who don’t file claims. And while that is a known problem, a lot of those people might be actual enrollees who just haven’t needed their insurance yet, as in young, healthy folks who have health insurance just in case, or because their parents told them that they should, and, by the way, they could get a plan with a zero premium. And stripping these people from the rolls is likely to boost premiums overall by making risk pools sicker, in general. I feel like this administration might not be familiar with the bizarre and sometimes illogical way the health insurance market works? 

Sanger-Katz: I think there’s a delicate balance going on here, where if there are people who are enrolled in these plans who are fake, are not real people, do not know that they have insurance, never plan to use their insurance, you know, that is a waste of federal dollars to subsidize those premiums and just give that money to insurance companies. But I don’t think that there’s very strong evidence that there are a lot of these people. And I also think that the mere fact that someone has not used their health insurance yet, in a year, is not by itself evidence that they are a fake person or that their enrollment is fraudulent. As you said, Julie, there are a lot of reasons why people in this market may not have used their insurance. You know, a lot of the people who have become newly enrolled are relatively young and healthy. That is good for the risk pool, but it may mean they don’t have a lot of healthcare needs. There’s also, just because of the nature of the individual market, you know, one expert pointed out to me, there’s just a lot of churn. You know, someone loses their job, they sign up for a plan, then they get a different plan, or, you know, people who are in this market may only be in this market for a short period of time, and that may also explain why there’s a higher share of them who don’t make any claims, because they haven’t sort of gotten through the whole year, they haven’t had a healthcare need yet. So I think deciding to just disenroll people on this basis does risk disenrolling people who are legitimately insured, who are not phantoms, and who are not committing any kind of fraud. To the degree that there is fraudulent enrollment, and I think there’s evidence that there’s some of it, there are, you know, I think that is a valid concern, and I think the federal government is certainly within its rights to try to address that and make sure that these federal tax subsidies are being appropriately spent. 

Rovner: Yeah, I think “delicate balance” is exactly the right word. I mean, that’s, you know, with the work requirements too. I mean, the idea is to make sure that people are doing things. But if you make the administrative requirements so burdensome, then you’re going to throw off people who are legitimately enrolled. 

Moving on to the next theme of the summer: the resurgence of measles, and the continuing fight over vaccine policy. Until this week, the Trump administration had boasted that while measles cases have been rising pretty precipitously 鈥 they’re at the highest level in more than three decades 鈥 the U.S. was actually doing better than most other countries with outbreaks, and besides, no one had died of measles yet this year. Well, that worked until Tuesday, when the Pennsylvania Department of Health announced two measles-related deaths in Lancaster County 鈥 although we have few details other than that both people were unvaccinated and one was an infant. The announcement touched off a rather nasty war of words between Pennsylvania governor (and possible 2028 presidential candidate) Democrat Josh Shapiro and HHS Secretary Robert F. Kennedy Jr., who said that the state was not cooperating with federal health officials, and maybe the people didn’t actually die of measles after all. This isn’t really going to get more people vaccinated, I would suggest 鈥 this just sort of fighting back and forth, right? 

Luthra: It’s a good question. It certainly doesn’t help. I think one thing I was thinking about this morning, and this is not measles-specific, but there’s a really great New Yorker piece from this week looking at the actual vaccine data over the past year and a half, and obviously people are affected by public rhetoric, but the declines in vaccination are not as big as one might have feared when RFK Jr. was initially nominated and really made a point of highlighting anti-vaccine beliefs. And so obviously, like, this is, the fact that people are dying is very bad. The fact that they’re sowing confusion 鈥 

Rovner: The fact that people are getting measles is very bad! 

Luthra: Yes, it’s very, very bad. It’s not, none of it is good. But that was actually really striking to me that amidst all of this, like, really terrible news, there is a bright spot, which is that things could be a lot worse. That is something that I hadn’t thought about. 

Roubein: I mean, if, I think 鈥 I’ve been thinking about this today, like, if you kind of step back from the really high-level view, I think Americans who are watching this are confused. They are not sure who to trust. There are, you know, Republicans are saying one thing, Kennedy allies are saying one thing, the Department of Health [and Human Services] and Gov. Shapiro, Democrats are saying another thing. You’re seeing a, you know, a war of words between, like, Republican and Democratic county commissioners on this, you know, just from a public health messaging standpoint. 

Rovner: Yeah, it has not been a great job of communication all the way around. I think there, I mean, there are even, you know, public health defenders who are saying, Why don’t we know more about these two deaths yet? There’s been not a lot of information, and that has, of course, as we saw, you know, during covid, the more noninformation you have, the more people try to fill in their own information, whether it’s true or not.  

Well, even before the Pennsylvania news, we had a somewhat excruciating pair of appearances on CBS’ Sunday show Face the Nation this week. First, CMS Administrator Dr. [Mehmet] Oz needed three separate tries to be able to say that, no, President [Donald] Trump was incorrect when he said in his Oval Office vaccine event that the measles, mumps, rubella combination shot was lethal. Spoiler: It is not. Then Florida Republican congressman Byron Donalds, who’s now the Republican candidate for governor, said the measles outbreak there has been caused by illegal immigration rather than residents not getting their children vaccinated. What happened to the idea we heard last winter that being anti-vax wasn’t good politics? I think this speaks to what you were just saying, Shefali. You know, I think in January and February we thought that Republicans were going to sort of leave this alone and focus on other things. 

Sanger-Katz: Well, I think one thing that we’ve learned recently is that while a lot of the president’s advisers and political staff, I think, were concerned that an anti-vaccine message was damaging, what we’ve seen is that the president himself sincerely has anti-vaccine views and has been saying them out in public. And so I think it does put other Republican political figures in a difficult bind, and certainly puts folks like Dr. Oz, who work in the administration, in a difficult place. Whatever his genuine views are, whatever his political advisers and his public health advisers are telling him, he works for President Trump, and President Trump has made it pretty clear what he thinks. And so I think that’s why we are now seeing this kind of new round of muddled messaging around vaccines, when I do think for a little while there was kind of a pullback on the most overt anti-vaccine rhetoric, and, you know, we saw RFK talking less about it, for example, in public. Now, I think we’re in a little bit of a new phase, where the president is leading the way back. 

Roubein: Yeah, I mean, I think that’s exactly right, and I mean, Trump has, you know, privately questioned why his administration had yet to release new vaccine recommendations, , with Lena [H. Sun] and my colleague Dan [Diamond]. And that’s, you know, some of what, a lot of what drove the executive order that we saw from just a few weeks ago to reduce the childhood vaccine schedule. Trump says he wants to break up the MMR shot. That’s not something that is currently available, but, you know, he has driven that by pushing some of his advisers. 

Rovner: Yeah, absolutely. Well, meanwhile, demonstrating just how expensive it is to track, trace, and quarantine people after a confirmed case of measles. One Denver outbreak that ended up being just 10 cases still cost state and local agencies nearly a half a million dollars, almost 7,000 hours of work from 189 staff members, not to mention 91 people being quarantined and 500 days of school being missed. We may call public health invisible when it works, but it is certainly not cheap. 

Roubein: Yeah, I mean we don’t talk about the economics of it very often. I mean, public health officials always say that they are underfunded, but just, in general, the talk of the economics here is generally not a huge part of the conversation. 

Sanger-Katz: And measles is just such a difficult disease to contain because it is so contagious. It is one of the most contagious infectious diseases out there. And so that means that any person who has measles just has the potential to spread it to so many people. And I think that really strains these traditional public health approaches of trying to track, trace, and quarantine because you have to find so many contacts. 

Rovner: Yeah, just a reminder, I mean, measles can linger in the air after the infected person has left for, I think it’s like, two hours. So it’s, you know, anybody who’s been in a place where somebody with measles has been is potentially at risk if they’re not vaccinated. 

Sanger-Katz: I mean, we remember how hard this was with covid. Of course, in the early days, no one was vaccinated, so there were more people who were susceptible to covid. But measles is substantially more contagious even than covid. 

Rovner: Yeah. Well, as yet, as the debate continues to rage over vaccines, the evidence continues to pile up that vaccines are actually, on balance, a very good thing. Just this week, we have two more studies. of 4 million teens and young adults that found that those who received that controversial mRNA-based covid vaccine were less likely than those who just got covid to develop myocarditis or other heart problems. That was something that people were worried about with young people getting this vaccine. appears to confirm that the shingles vaccine, Shingrix, appears to not only have a protective effect against dementia, something we reported earlier this year, but also against cardiovascular disease. How do we get to a place where vaccines have become controversial again? I assume, I mean, I want to go back, Margot, to what you were saying that it does seem that President Trump himself has anti-vax views that I think we didn’t appreciate until this year. I mean, I think most of us thought that this was all being driven by RFK Jr., who’d obviously made a career of being anti-vax. But when he backed off, we saw the president basically fill right in, and that’s kind of where we are? 

Sanger-Katz: And I also think this is a reminder to us, both of these studies and others that have come out recently, that, you know, vaccines have some risks. They do. But infectious disease can be really dangerous for people, and it can have lingering and downstream effects that are not obvious. It’s not just that you get sick in the moment that you get sick, but having that disease affects your body in ways that may show up much later. And I think some of these longer-term studies that are following people 鈥 you know, not just in the weeks and months after they get a vaccine, but what happens years later to their heart or to other major organ systems 鈥攔eally shows that preventing people from getting serious illness is good for their long-term health. 

Rovner: Yeah. 

Roubein: And I mean, Secretary Kennedy, just to go back to last year, he did drive changes. He fired CDC’s [the Centers for Disease Control and Prevention’s] vaccine advisers, who had made changes to vaccines. The health department did release a new childhood, slimmed-down childhood immunization schedule earlier this year. A lot of those changes, though, have been on hold from a federal judge. 

Rovner: Yeah, he also fired the head of the CDC, who refused to rubber-stamp his vaccine changes. So, he was busy before he got sort of unbusy with this. All right, we are going to take a quick break. We will be right back. 

OK, our next theme of the summer are the continued cutbacks by the Trump administration to federal health programs, including some of those that have been specifically funded by Congress. First up is a story from 吃瓜不打烊 this week about how, at the same time President Trump can’t stop talking about the increasing rates of autism and what a problem it is, the administration is scaling back enforcement of civil rights protections for people with autism, research into the education needs of people with all sorts of disabilities, and even data collection efforts. So, on the one hand, the president keeps pressuring RFK Jr. to find a definite cause of autism, but at the same time, this administration is doing less to help those who are already diagnosed? 

Luthra: I think what I find really interesting every time we talk about this is the really, really long tail of funding cuts, because this is something on, like, a broad macro scale that began at the beginning of this administration, right? Just massive funding cuts and freezes across the board and have continued. And because of the way grant-making works, because of the way research works, we keep seeing the consequences. We keep getting more people reporting, “Oh, my funding didn’t come,” or “This was held up,” or “This project I was working on no longer can.” And what I think is also really interesting is we see how slow the ability to respond is because of the long tail of funding cuts. I mean, courts take a long time, finding new funding when you suddenly lose yours actually is very difficult. And this is something that we’re just going to keep coming back to. We are going to be seeing the consequences of these funding cuts for months and years, as we’ve been talking, but also for much longer as the consequences in terms of research, of cures developed or not developed, becomes even more clear. 

Rovner: Yeah, although sometimes I think it’s going to be hard to connect the dots to get from, you know, from you cut this so this didn’t happen. It’s almost going to be like proving a negative at some point. 

Well, another big theme this summer has been drug prices, particularly prices for those expensive GLP-1 weight loss drugs. As part of the administration’s push to make those drugs less expensive for the end users, CMS offered states the option to participate in its direct negotiations with the drug manufacturers if they would offer them through their Medicaid programs. Only, , so far only one state has taken up the offer, and more states are actually cutting back on their GLP-1 coverage through Medicaid that they have been offering because it’s been such a financial strain on their programs. Several state officials told Politico that they worry about the long-term financial sustainability of the program. I know it’s also a worry for the Medicare GLP-1 program, which is basically at this point a year-and-a-half-long pilot for drugs that, as far as we know, need to be taken indefinitely. Is it fair to say that the president has not really been able to keep his promise to make these drugs cheaper and much more widely available, or that if he has, people may end up getting them yanked out from underneath of them? 

Sanger-Katz: I think it’s complicated. I think it’s hard to know how much credit the president should get. But I will say that the prices for these drugs 鈥 the kind of cash-pay prices, that he was able to negotiate allegedly, and that he was able to announce certainly a few months ago 鈥 were substantially lower than what individuals and insurers, including some public insurers, were paying for those drugs. So we are now seeing a kind of cash price for the main anti-obesity drugs that is much more affordable than it had been in the past. I think some of that was driven by market pressures and would have happened regardless of the president’s intervention. But I think certainly his pushing these companies, his threatening of these companies, his cajoling of these companies probably maybe did induce them to sort of do it at the same time, to do it faster, and to do it more prominently. 

Rovner: Well, some of it already had happened, before he got in. The self-pay cost had already gone down because so many insurers had stopped covering it. 

Sanger-Katz: It had gone down, but it then went down again.  

Rovner: It did. 

Sanger-Katz: The prices that are available now that the president announced are lower than what we had seen in the past, and they are a major discount even compared to the previously lowered prices that had been public. So I think that is a real thing. Whether or not those prices were meaningfully lower than the price that the Medicaid programs in states were already paying is a little bit of an unanswered question. But my understanding from talking to some Medicaid officials is that Medicaid was already getting very similar prices, even before the president announced these discounts. And that’s because Medicaid has, by law, gets the best price for drugs. They get discounts that are not available to other purchasers. And Medicaid budgets are quite tight. You know, as we were just discussing, all of these state Medicaid programs are facing very substantial cuts that are coming down as the rollout of the big tax-and-spending bill is implemented. And the states that went early and did cover GLP-1 drugs for obesity, I think that they saw that interest and uptake really exceeded their expectations. There were a lot of people in the Medicaid population who stood to benefit from these drugs, and that when so many of them enrolled at once and started taking these drugs at once, it did create, I think, an unanticipated budget strain. So I think states are in a difficult position. This pilot is offering them this cash price for their Medicaid programs, and I think a lot of them are looking at that, and they’re saying, “Well, this is, like, a good price. It’s not that much better than what we could have gotten before, and we weren’t doing it before because we didn’t think that we could afford it.” And so I think those circumstances really haven’t changed. It will be interesting to see what happens over time. It does seem like there is huge potential public health benefit for Medicaid populations if these programs can find a way to cover these drugs. You know, the evidence about the health benefits of these drugs for people who have obesity are just really tremendous, and we’re seeing them over numerous, different health conditions and body systems. And, you know, in my own reporting on North Carolina’s Medicaid program, which was one of the early ones to cover these drugs, you know, I just talked to a lot of people who were really excited about having this opportunity to take this drug. People who had really struggled with their weight and related illnesses, and, you know, were glad that the state was offering it to them. And now, you know, North Carolina has had, is one of the states that’s had to roll back. 

Rovner: Yep. All right. Well, finally, this week, a word about Dolly Parton, possibly the only person in America who was pretty literally loved by everyone. The country and pop music superstar and actress who was known for her genuine kindness and generosity was, in fact, also an important healthcare philanthropist. A lot of people probably remember she gave a million dollars to Vanderbilt University in 2020 to help develop the aforementioned mRNA-based covid vaccine. What people might not remember is that she also used her own money to fund pediatric infectious disease research, underwrite a women’s healthcare center in the East Tennessee county where she was raised, and help train pediatric health professionals. There are celebrities who lend their name and their time and sometimes their money to causes to help burnish their personal PR, and then there are those who clearly do it because they want to give back. I think it’s fair to say that Dolly Parton was one of the latter, and I think she’s going to really be remembered for a lot of the work that she did on bringing healthcare to more people, right? 

Luthra: Yeah, yeah. It’s very sad. 

Rovner: It is. And healthcare owes her a debt. All right, that is this week’s news. Now we’ll play my interview with Dean Rosen, and we’ll come back and do our extra credits. 

I am pleased to welcome to the podcast Dean Rosen. Dean is a partner at Mehlman Consulting, where he landed after a long career on both sides of Capitol Hill, during which he helped shape some of the most important health legislation of the 1990s and early 2000s, including President George W. Bush’s HIV/AIDS program, PEPFAR; the Medicare prescription drug law; and the 1997 Balanced Budget Act. But before all those things, Dean was the top health aide to Sen. Nancy Landon Kassebaum, the Kansas Republican who passed away last week at the age of 94. After Republicans took over Congress in the wave election of 1994, Kassebaum chaired the then-Senate Labor and Human Resources Committee, now the HELP [Health, Education, Labor, and Pensions] Committee, and stewarded the surprisingly difficult path to law of what was originally a very bipartisan bill, the Health Insurance Portability and Accountability Act of 1996, or HIPAA. Dean Rosen, welcome. 

Dean Rosen: Thanks, Julie. I’m honored to be here, and I’m a longtime fan of What the Health? 鈥 so this is a real great opportunity. Excited to be with you. 

Rovner: Great. So, HIPAA, which was known at the time as Kassebaum-Kennedy for its bipartisan Senate sponsors 鈥 your boss and the late Edward M. Kennedy, a Democrat of Massachusetts 鈥 is today mostly known for its medical records confidentiality provisions. But that’s not how it started out, right? It was really an effort to do something bipartisan in the wake of the failed Bill Clinton very partisan health plan. Talk about how it kind of came to be. 

Rosen: Yeah, that’s exactly right. It sort of started in the Senate and then moved to the House and then moved to a traditional conference committee, which we don’t seem to do very much of, either, anymore these days. But when it started off, it really did start, as you said, as a health insurance portability bill, and just a really, in some ways, minimalist solutions-oriented legislative proposal that was designed to try to get at what was really, I think, the core concern, or one of the core concerns, at the time, which was people’s ability to get and maintain health insurance if they had preexisting conditions.  

And really what happened was the Clinton plan had kind of imploded spectacularly, as you know, despite the fact that there were huge Democratic majorities in the House and the Senate 鈥 not filibuster-proof, but close in the Senate 鈥 and the Democrats just couldn’t 鈥 get it done. And they couldn’t get any Republican support. They couldn’t get enough Democratic support. And then in the 1994 election, something unexpected happened. I guess polling was a little less sophisticated at the time, but you had the “Republican Revolution” led by [who] was to be Speaker [Newt] Gingrich in the House, and you had the Senate 鈥 which had changed hands before, but the House, which had not changed hands and had been in Democratic control for 40 years 鈥 switch, and Republicans were ascendant. Bill Clinton was still president. I think probably some of the fact that there was such a gain of seats had something to do with the failure of health reform. And Republicans were getting ready to move a very aggressive deregulatory agenda. And Ted Kennedy, who was a liberal lion of the Senate, who you know was a champion of universal coverage and other liberal causes, moved from the majority side of the dais and having the gavel at the Senate Labor Committee, now the HELP Committee, to the minority side. And Sen. Kassebaum, who had hired me just a few months before that, all of a sudden became the first woman to chair a major committee in the Senate, a standing committee in the Senate. And really, what started it, was that Sen. Kennedy and his team came over and met with us, and somewhat surprisingly, said, “Hey, I know I’m for universal coverage, but I’m willing to do something that’s much more modest,” and shared with Sen. Kassebaum and me and the team a chart that they had put together showing where, not had there been disagreement, but where actually there had been agreement among the major plans, ranging from the most liberal, the Clinton plan, to some of the most conservative plans. And the heart of that, Julie, was health insurance portability, preexisting condition protections at access, and that was the bill that started off in the Senate, and that’s the one that gained traction and passed until we got to the House. 

Rovner: So, Sen. Kassebaum was one of those legislators who actually believed in passing laws, even if it meant compromising 鈥 so you only achieved a few of your goals at a time. Why are there so few people like that on either side anymore? 

Rosen: Yeah, well, you know, I think I would say also about HIPAA that it 鈥 she was an incrementalist. I think she was one of the reasons 鈥 she was considered a moderate Republican in the day, and I think now even more moderate. But she was at her heart a conservative in the sense of she believed that the best legislating was done sort of inch by inch, step by step, as opposed to in one bill. And you sort of saw that proof come to be when the Clinton plan failed, because it tried to really do everything in the healthcare system; it was huge. I think to your question: Today, it’s harder because there’s just less overlap, and the incentives are such that, you know, as one current member of Congress, very senior, told me a couple years ago, if you’re a Republican, you’re looking over your right shoulder. If you’re a Democrat, you’re looking over your left shoulder. And I think that the venerable, you know, Cook Political Report says that in this election, there are only truly 18 toss-up seats in the House out of 435. And so, what it means is that, you know, 5% of the country is going to decide who controls the House ultimately, and the incentives are not to put together bipartisan bills, big or small, healthcare or not healthcare. But the incentive is, frankly, to play to your base, particularly in a midterm election. Now, that’s not always the case. You do have examples of bipartisanship, but I think it’s harder because of those incentives, which we’ve seen become more and more true as politics has changed, and, frankly, as the country’s changed. 

Rovner: You wrote a really lovely tribute to the senator about going to the White House for the signing of HIPAA by Bill Clinton, which I think just showed sort of the generosity of spirit of Sen. Kassebaum. Tell us about it? 

Rosen: Yeah, so, you know, after Nancy passed away, there’s a group of us who’ve been keeping up through chat over the years, and her family, actually granddaughter and stepdaughter, had informed us all before they informed the press over the weekend that she had passed away. And I suddenly was sitting there over the weekend and realizing, Julie, that it had been 鈥 she had died 30 years to the day since HIPAA was signed by Bill Clinton. And, you know, to your point of bipartisanship, that bill passed the House with only two dissenting votes and the Senate unanimously. So not only was it bipartisan, but it passed unanimously. 

So we went over to the White House 鈥 to kind of tell a little bit of the story 鈥 I’d never been to the White House before. This was, like, my first job on Capitol Hill. I was much younger then, and 鈥 obviously 鈥 and the senator made sure I was on the invitation list. And this was, you know, Sen. Kassebaum was not really known as a legislator who was someone who passed, you know, tons of major bills. This was really, if you read all the obituaries, the health insurance portability law is one of the two bills they mention 鈥 the other one being a general aviation bill, and her work internationally, which was significant around apartheid. But they mention this health insurance bill as her signature achievement. So we go to the White House. It’s a hot August day, and as I said, I realized that she died 30 years to the day after this bill was signed. And I was reflecting on the fact of something that I never really shared publicly before, that at the signing ceremony, it’s traditional 鈥 as you know, you’ve probably been to many, many, many of these 鈥 that the presidents will sign these bills, they’ll use multiple pens, as Bill Clinton did, and he handed one of the pens to Sen. Kennedy, and he handed another one to Sen. Kassebaum 鈥 we’re standing over each of his shoulders. And we’re walking out of the Rose Garden, and Sen. Kassebaum came over to me, and it was just the two of us, and she said, “Here, I want you to have the pen. You wrote the bill.” And, you know, I guess as a staff person you do, but I didn’t think of it that way. I thought of the fact that she was giving away to me really one of the most tangible symbols of her signature bill, and I said, “I can’t take this. This is your bill. This is one of your crowning achievements. You worked so hard to get this done.” And she insisted that I keep it.  

And as I said in the piece that I wrote, you know, it struck me that that was just essential Nancy Kassebaum, that not only in the legislation could she find ways to work with Ted Kennedy, who, she said, in subsequent interviews, coming from Kansas 鈥 and folks will appreciate this with Wicked being out 鈥 that I think a lot of Kansans thought that Ted Kennedy was the Wicked Witch of the East. But working with Ted Kennedy to get something passed into law, and then coming over to me with no ceremony, with no one around, with no political advantage, and just saying, “Here, I’d like to give you credit, as opposed to taking credit for myself,” I think said a lot about her character, and I shared that story with her family, and they gave me permission to share it publicly. I think it just goes to her character and who she was, which, as I said, I think is, much more important than the legislative achievement, was just the kind of person that it takes to get things like that done in Washington today, and, frankly, in Washington then. 

Rovner: Any chance we’re going to get back to seeing those kinds of legislators on Capitol Hill? We’re both in this for the long run. 

Rosen: Yeah, you know, I have to say, you know, I prefer to be somebody, Julie, who looks forward. I mean, you know, you can look back and wring your hands and be pessimistic. But, you know, I came to Washington as a [Ronald] Reagan Republican, and Reagan always said that he felt like American optimism was the heart of the country, and that our best days were ahead. And I really do feel optimistic about the country. We’ve survived a lot over the last 250 years, and you’ve got examples of bipartisan legislation. You’ve got, you know, Dr. [John] Joyce and [Rep. Greg] Murphy, and [Rep. Kim] Schrier, a bipartisan bill in the House that takes on the difficult and expensive issue of Medicare physician reform. You’ve got a bill by Sen. [Chuck] Grassley and [Catherine] Cortez Masto and others in the Senate that got introduced a couple weeks ago on fraud and abuse at a time when that issue could be really political. 

So to me, I do see people of goodwill in both parties who want to get things done. I think we’ve got to recognize, as we talked about a moment ago, that the broader incentives in our country and in our political environment and in our institutions are pulling people apart. And I think it is going to take people of goodwill to find things to do where they can compromise without losing their principles and find ways to make progress. And I do see hopeful signs of that. You know, I’m not sure we’re going to get back to the day where there’s tremendous overlap and a huge number of moderates in either party, but I think it makes it even more important that people of goodwill who come to Washington as citizen legislators and want to solve things find ways to do that. And in this divided government, where we’ve seen 12 change elections of the last 14 and extremely narrow historic margins, it’s going to take both sides to get things done. 

Rovner: We will keep watching, Dean Rosen. Thank you so much. 

Rosen: Thanks, Julie. Thanks for having me. 

OK, we are back. It’s time for our extra-credit segment. That’s where we each recognize a story we read this week we think you should read, too. Don’t worry if you miss it. We will post the links in our show notes on your phone or other mobile device. Rachel, why don’t you go first this week? 

Roubein: My extra credit is from The New York Times. The headline is “,” by Noah Daly and Andrew Jacobs. And the story is about how Americans are traveling abroad, often to Latin America, for psychedelics, a form of medical tourism, and the authors write that this could carry substantial risks. There’s no official tally of injuries, deaths, or adverse events at the overseas psychedelic clinics. But The New York Times interviewed more than two dozen patients and researchers, who cited just a litany of troubling episodes. Basically, the field of psychedelics is in its infancy, so researchers have found this sort of patchwork of standards and rules. And, just for context, here in the United States, the FDA hasn’t approved a psychedelic as of yet, but the idea has really gained traction in recent years for mental health conditions, but particularly, this spring, when President Trump signed an executive order that was aimed at accelerating research into the drugs and also fast-tracking federal reviews of psychedelic medicines. But advocates for these drugs do have concerns about adverse events at overseas clinics because they don’t want it to, you know, kind of spark a backlash that could hamper this trajectory. The Times did speak to a practitioner who said that his prescribing practices were informed by a patient’s self-reported medical history. But I thought this was a really interesting look at what’s happening overbroad given there’s been so much chatter about psychedelics in the United States. 

Rovner: Something else to worry about. Margot. 

Sanger-Katz: I wanted to recommend an article in Stat from Anil Oza. Headline is “.” And this story outlines that a number of people who had submitted comments on a rule about science funding suddenly found their comments removed from the public record. And it appears that the reason is because they were making reference to Russell Vought, the OMB [Office of Management and Budget] head, who, you know, was behind this rule. He has a child with cystic fibrosis who has benefited from a [National Institutes of Health] NIH-funded drug, and I think a lot of them were making reference to that as part of a personal plea for him not to implement this policy. But it’s a little bit puzzling why OMB removed them, on what basis. They haven’t been transparent about it, and there have been basically no explanations. And I think, you know, Secretary Kennedy, during his confirmation hearings, talked about radical transparency in the HHS process and policymaking. And I think this is one of many examples where that really hasn’t happened. There has been a reluctance, I think, by HHS to go through notice-and-comment rulemaking in situations where it is not necessary. There has been a reluctance sometimes to answer questions from the public, from reporters, and I do think that the kind of deletion without explanation of these comments is part of that broader pattern. There is obviously this personal sensitivity here that is part of it, and there may be some valid reason why this public official’s child should not be in the federal record. But it would be nice if someone would explain. 

Rovner: Yeah, and also props not just to Stat, but to the people who actually have been tracking these comments and noticed that they were taken down. Shefali. 

Luthra: All right. My story is from LJ Dawson. It is a collaboration between 吃瓜不打烊 and The Washington Post. The headline is “.” This story combines many of my interests, like European vacations, Greece, and fertility treatment. And I think it’s a really, really, like, interesting and useful look into just how expensive this can be for Americans, especially if insurance doesn’t cover it, and the lengths to which people go to become pregnant. And the family that the story follows, they live in Florida. They could only get pregnant through IVF [in vitro fertilization]. They were quoted close to $40,000 for a round, and they were like, This is nowhere near what we can afford. They realized it was much cheaper to travel to Greece, to literally go on vacation in Greece and get IVF done there. And this is a thing that people genuinely do. Like, I know many people who have looked into the costs of IVF in different European countries, including Scandinavian ones. And I think it’s just a really helpful, dramatic look at what happens when people really, really would benefit from a medical treatment for achieving their fertility goals, their reproductive goals, etc., but it is simply not affordable. And I think this is also interesting because there has been so much chatter about making IVF more affordable, but, in fact, it is more expensive than ever and more in demand than ever because people are having children later, more likely to need fertility treatment, and we don’t really have a good solution yet in sight. 

Rovner: No, except that our system is way too expensive. Well, you may have noticed that in my themes of the summer, I left out the unusual spate of foodborne illnesses. Well, fear not. My extra credit this week is also from The Washington Post. It’s by Tamar Haspel. It’s called “.” And it makes a pretty good case that lettuce and its leafy green cousins are not only the foods most likely to result in foodborne illness, but it’s also not got much to offer nutritionally. It doesn’t store very well, and the land that we use to cultivate it could be better used for, well, better food. I have to say, I stopped buying lettuce a long time ago, mostly because it doesn’t keep very well, and I live by myself. And while I do eat plenty of salad, it’s mostly cucumbers, peppers, and tomatoes. Now, you guys all do you, but I can just say that I haven’t contracted cyclospora this summer. 

All right, that is this week’s show. Thanks to our editor, Emmarie Huetteman, and our producer-engineer this week, Taylor Cook. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcasts 鈥 as well as, of course, kffhealthnews.org. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me on X , or on Bluesky . Where are you guys hanging these days? Shefali. 

Luthra: I’m on Bluesky . 

Rovner: Margot. 

Sanger-Katz: I am all the places , and on Signal at sangerkatz.01. 

Rovner: Rachel. 

Roubein: Several places: on X, ; Bluesky, ; ; Signal; etc. 

Rovner: As I mentioned at the top, we’re taking next week off. You should too, if you can. It’s going to be a busy fall. We will be back in your feed on Sept. 10. Until then, be healthy. 

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吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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In Toss-Up House District, Voters Crave Leadership To Fix Broken Healthcare /elections/california-22nd-congressional-district-valadao-villegas-healthcare-affordability/ Wed, 26 Aug 2026 12:00:00 +0000 /?p=2275994 吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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Her Breast MRI Was Approved, But That Didn鈥檛 Mean Her Insurance Would Pay /health-care-costs/breast-cancer-mri-preventive-care-bill-of-the-month-august-2026/ Wed, 26 Aug 2026 09:00:00 +0000 /?p=2278207 Last year, Stephanie Halver’s primary care doctor consulted a risk assessment tool to calculate her chances of one day developing breast cancer. Halver, now 43, remembered the likelihood “popped up really high.”

That’s partly because Halver’s mother and aunt have had breast cancer. Her age and dense breast tissue also put her at higher risk.

Halver, who lives in Vancouver, Washington, said her doctor recommended she get an annual breast MRI, six months after her yearly mammogram. The scan would serve as an additional safeguard, since breast MRIs can detect abnormalities that mammograms miss.

Case in point, actress Olivia Munn had a breast MRI in 2023 that detected an aggressive form of cancer in both breasts, even though a recent mammogram had been clear, . Like Halver, Munn said her doctor recommended the MRI after a risk assessment score showed she faced a greater-than-normal chance of developing breast cancer.

Catching breast cancer early, before it spreads, improves survival rates, according to the . After Halver’s insurer preapproved the scan, she scheduled the MRI for September.

“Luckily, they find nothing,” Halver recalled.

Then the bill came.

The Medical Service

A breast MRI 鈥 short for magnetic resonance imaging 鈥 is a preventive and diagnostic tool that captures pictures of breast tissue in higher detail than a mammogram. MRIs may be recommended for patients at an increased risk for breast cancer, including those with dense tissue, a family history of breast cancer, or certain genetic markers.

But the scans are generally not recommended for women considered at average risk, according to the , because they can also yield false positives, subjecting patients to unnecessary follow-up tests and procedures.

Breast MRIs are also used to diagnose cancer when an abnormality is detected during a mammogram, and they can determine the cancer’s stage after diagnosis.

The Bill

$1,205: After an insurance payment of $13.90, the patient was responsible for $1,191.10. The clinic also charged $65.60 for “Injectable/Oral Med,” often used to keep patients still or less anxious during the scan. Halver’s insurance covered about half of that charge.

The Billing Problem: Not Always Preventive

When Halver received the bill from Vancouver Clinic, where the MRI was conducted on Sept. 26, she was confused.

She knew that the Affordable Care Act requires health plans to cover preventive care, such as Pap smears and mammograms, at no cost to patients.

What’s more, Halver’s breast MRI had been recommended by her doctor and preapproved by Blue Cross Blue Shield of Texas, of which she is a beneficiary through her employer-sponsored plan. The whole point of it was preventive. That’s why she assumed it would cost her nothing.

To make things more confusing, requires many health insurers to cover breast MRIs.

“I’ve had many phone calls trying to understand” the bill, Halver said.

A photo of Stephanie Halver standing in her living room. Four colorful prints are seen hanging on the wall behind her.
Halver thought her health insurance plan would pay for a breast MRI recommended by her doctor in 2025. Even though the scan had been preapproved, she ended up with a $1,200 bill. (Kristina Barker for 吃瓜不打烊)

It came down to this: The U.S. Preventive Services Task Force, a panel of outside experts that advises the federal government, is charged with recommending which screenings health insurers are required to cover at no cost to patients, and preventive breast MRIs don’t fall into that category.

The task force “the current evidence is insufficient to assess the balance of benefits and harms” of breast MRIs for women with dense breast tissue “on an otherwise negative screening mammogram.”

The federal guidelines are different for patients whose mammograms detect an abnormality, said Cathy Peters, senior director of state and local campaigns at the American Cancer Society Cancer Action Network.

In these cases, Peters said, by the federal Health Resources and Services Administration specify that additional imaging, such as ultrasounds and MRIs, are preventive.

After an abnormal mammogram, these services are recommended “to address findings on the initial screening mammography” and to “complete the screening process for malignancies,” according to HRSA.

Those guidelines are a step in the right direction, but women who have not had an abnormal mammogram may end up “running into a big bill,” Peters said. This can be a deterrent when it comes to future screenings, she said, because when “you get hit with that once, you’re going to be very careful the next time you go.”

Some states have enacted laws that require insurers to cover breast MRIs, Peters said, but they generally don’t benefit patients like Halver who are enrolled in large, employer-sponsored insurance plans. These “self-insured” plans are regulated by the federal government, not by state lawmakers.

“Sadly, these state-by-state laws,” Peters said, don’t “fix the federal problem.”

The Resolution

Blue Cross Blue Shield of Texas declined to answer questions about Halver’s benefits or bill.

Halver appealed the insurer’s coverage determination, and in July she received a letter indicating that her appeal was denied.

Halver said she contacted her employer’s human resources department earlier this year and learned that mammograms are covered as a preventive screening under her health plan but breast MRIs are not. That means her annual breast MRI will be subject to deductibles, coinsurance, and other cost-sharing requirements.

In this case, the cost of Halver’s breast MRI was applied to her $3,300 annual deductible, an explanation of benefits from her insurer showed.

“I think I’m on the hook for this bill,” she said.

And because her risk of breast cancer is high, she said, “that’s a guaranteed bill every year.”

Stephanie Halver sits at a table in her home.
Halver learned that mammograms are covered as a preventive screening under her health plan but breast MRIs are not. (Kristina Barker for 吃瓜不打烊)

The Takeaway

If your doctor or medical provider recommends an annual breast MRI in addition to an annual mammogram, consider researching your state’s coverage rules on the . The nonprofit organization maintains a map with up-to-date information on state laws about breast cancer screenings. Depending on where you live and what type of health plan you have, preventive breast MRIs might be covered at no cost.

If it turns out you could be on the hook for a future bill, there are a few things you can do beforehand to potentially lower your out-of-pocket costs.

Ricki Fairley, co-founder of Touch, the Black Breast Cancer Alliance, recommended first finding a patient navigator at the hospital or cancer center to assist you.

She urged women to seek out resources in their communities or through national advocacy groups, including Touch, to find ways to lower screening costs. Programs funded by some states can help offset the cost of breast cancer screenings for low-income patients, Fairley said.

Beyond that, shop around for the best price. Freestanding imaging centers may charge less for a preventive breast MRI than a hospital. If possible, also consider scheduling the MRI at the end of your health plan’s deductible year. If you’ve already met your deductible, you could end up owing less out-of-pocket.

Bill of the Month is a crowdsourced investigation by 吃瓜不打烊 and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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The Medicare GLP-1 Discount Has One Big Catch: Some Sick Patients Don’t Qualify /aging/medicare-glp1-bridge-weight-loss-drugs-coverage-exceptions-cost-access/ Tue, 25 Aug 2026 09:00:00 +0000 /?p=2272688 In January, Jeff La Marca got a prescription for the popular weight loss drug Zepbound. But he couldn’t afford the $750 monthly price tag.

Then Medicare launched an 18-month pilot program that offers GLP-1 medications to some enrollees for only $50 a month. La Marca thought he might finally be able to afford the drug.

“I thought, 鈥楾hank God, there’s a path,’” said La Marca, who lives in Basking Ridge, New Jersey, and has tried numerous diets and exercise regimes.

But the 68-year-old’s celebration was short-lived.

His application to the pilot program was denied.

La Marca has severe obstructive sleep apnea, one of several diagnoses that exclude patients from the Bridge program’s $50 monthly price. The notification didn’t say why he was rejected. He thinks that if he didn’t have that diagnosis, he would qualify due to his weight.

“I’m obese, morbidly obese, BMI 42. I had quadruple heart bypass surgery. I’m at risk for stroke. I’m prediabetic. And yet I can’t get it. I’m livid,” he said.

A medical device used for obstructive sleep apnea sits on a table.
Jeff La Marca uses a machine to treat his obstructive sleep apnea. It adjusts his breathing with every breath. (Erica S. Lee for 吃瓜不打烊)
An older man puts on an oxygen mask that is connected to a medical device for sleep apnea.
La Marca, a retired professor living in Basking Ridge, New Jersey, is among an estimated 5.9 million Medicare enrollees excluded from a GLP-1 discount program because they have a medical condition such as Type 2 diabetes or sleep apnea. (Erica S. Lee for 吃瓜不打烊)

A Temporary Patch for a Long-Standing Gap

About 1 in 5 American adults have taken a GLP-1 medication, and most of them, including those with health insurance, say the drugs are . Federal law has long barred Medicare from covering drugs prescribed solely for weight loss, which is why the Medicare GLP-1 Bridge program made a big splash when it launched in July.

It’s a short-term pilot program in which Medicare is offering coverage of three GLP-1s for weight loss and management, to see if that would save Medicare money later. Eligible patients must be enrolled in Medicare Part D, a prescription drug coverage add-on to Medicare. Even though people must have Part D insurance to qualify, the preauthorization request doesn’t go through the insurer; it’s instead submitted to a separate system run by a contractor for the Centers for Medicare & Medicaid Services.

The pilot includes Wegovy, the KwikPen formulation of Zepbound, and the oral medication Foundayo.

Under the pilot, many Medicare beneficiaries with a body mass index of 35 or higher 鈥 the 鈥 qualify for coverage of one of those drugs, if prescribed. Those otherwise eligible who have a BMI of 27 to 34 can qualify if they also have certain health conditions, such as prediabetes or cardiovascular disease.

But buried in the fine print is a distinction that’s tripping up patients like La Marca: The $50 price under Bridge applies only to people using the drug solely for weight loss. Anyone who has a qualifying medical condition that the Food and Drug Administration has approved GLP-1s to treat, such as Type 2 diabetes or moderate to severe obstructive sleep apnea, is instead routed back to their Medicare Part D prescription drug plan, which can require copays of hundreds of dollars a month for GLP-1s.

“The Bridge program was designed to target those people who can’t get GLP-1 coverage through Part D but would benefit from taking one for weight loss,” said Juliette Cubanski, who directs the Program on Medicare Policy at KFF, a health information nonprofit that includes 吃瓜不打烊.

The cost to Medicare of subsidizing the drugs will depend largely on how many people use the program, and the federal government hasn’t released an estimate.

Cubanski that 3.8 million people qualify and that, if a quarter of them enroll in Bridge and remain on treatment for the program’s full 18 months, it will cost Medicare about $3.3 billion. If three-quarters enroll, costs could rise to $10 billion.

If the government expanded the program to include the additional 5.9 million people who are overweight and already eligible for GLP-1 coverage through Medicare Part D, it would add billions more to the program’s cost.

The demonstration’s initial weeks have been positive, and most prior authorization requests have been completed in under 12 hours, CMS spokesperson Timothy Foster said.

“This has allowed thousands of eligible beneficiaries to access GLP-1 medications for weight loss at pharmacies nationwide,” Foster said.

An older man wearing a plaid shirt with suspenders sits on his front porch with his hands resting on his cane.
“I’m obese, morbidly obese, BMI 42. I had quadruple heart bypass surgery. I’m at risk for stroke. I’m prediabetic. And yet I can’t get it. I’m livid,” La Marca says, referring to the popular weight loss drug Zepbound. (Erica S. Lee for 吃瓜不打烊)

GLP-1s Aren’t Covered

Patients like La Marca are left in a tough spot, qualifying for Part D coverage of a GLP-1 but facing much higher cost sharing.

“鈥楥overage’ doesn’t always mean 鈥榓ffordable,’” said primary care physician , who describes herself as a “big proponent” of GLP-1s and practices at Sunflower Medical Group in Roeland Park, Kansas.

The Bridge program is leaving behind patients with the greatest medical need, she said. She noted that many Medicare patients already must navigate prior authorization and spend months trying alternate, often cheaper treatments, a process known as step therapy, before finally getting approval 鈥 only to arrive at the pharmacy counter and discover that their GLP-1 copays will run them $200 to $600 a month, if not more.

Researchers studying how Medicare insurers cover GLP-1s that recipients have faced increases in out-of-pocket costs and that almost all plans now require prior authorization, which can make getting the drugs more difficult.

Chris Bond, a spokesperson for insurance industry trade group AHIP, blamed drugmakers’ prices, “which they alone set and they alone can lower.”

La Marca’s insurer declined to answer specific questions about La Marca’s case.

Left Waiting

For now, La Marca’s GLP-1 prescription remains unfilled. The severe sleep apnea diagnosis that helps establish his medical need is also what excludes him from the discount program that would bring the cost within his reach.

As he reflected on his appeals and the dead ends, La Marca paused, his eyes filling with tears of frustration.

“This is now my quest, because it’s my only chance to improve my health,” he said. “It’s the only thing left. I’ve tried everything.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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California Weighs Penalties for Healthcare Providers That Don鈥檛 Rein In Costs /health-industry/high-healthcare-costs-hospitals-state-spending-limits-california-fines/ Mon, 24 Aug 2026 13:58:42 +0000 /?p=2276649 California is weighing stiff penalties for hospitals and other healthcare entities that don’t stay under state spending limits, potentially levying hundreds of millions of dollars in fines if these providers don’t take steps to rein in rising healthcare costs.

If the state Office of Health Care Affordability adopts the fines next week, hospitals, medical groups, insurers, and others could face penalties that amount to as much as 125% of the total they spend above the state’s annual growth targets.

The penalty proposal comes after healthcare entities in California were asked to limit growth by 3.5% last year and ramp down to 3% by 2029. Seven hospitals that state officials consider particularly expensive face even smaller growth targets: 1.8% in 2026, dropping to 1.6% by 2029.

Consumer advocates argue that state financial deterrents are critical to bring relief to millions of Californians struggling with high insurance premiums and out-of-pocket expenses. Hospitals accounted for in U.S. health spending from 2022 to 2024, compared with 11% from retail prescription drugs. But adding teeth to those targets sets up a fight with the powerful hospital industry, which has a challenging the spending limits as unreasonable. Hospitals warned that they will cut back on vital services, including in emergency rooms, obstetrics, and behavioral health.

Healthcare industry representatives said the state affordability office hasn’t accounted for year-to-year volatility or other factors beyond the industry’s control, such as rising minimum wages, state earthquake retrofit requirements, and expensive new drugs.

“They’re building the plane while flying it,” said Ben Johnson, group vice president for financial policy at the California Hospital Association. “We know improvements in affordability are needed, but we have serious questions about how and about what the unintended consequences could be under OHCA’s rather stringent approaches.”

When calculating penalties, California regulators would consider various factors, including a healthcare entity’s financial situation, its market impact, and the gravity and number of offenses, according to a in June. And entities would first be given opportunities to implement performance improvement plans to bring their spending into line before penalties are imposed. For those that don’t comply, the board is considering penalties of $10,000 a day or a flat $500,000.

The penalties, which the affordability office’s eight-member board is required by to adopt, are slated for discussion, and a potential vote, at the board’s . The soonest healthcare providers would be subject to penalties is 2028, because it’s expected it will take two years to collect and publicly report spending data to measure against the 2026 targets. The state is still collecting data on how entities performed against the 2025 targets, which aren’t enforceable, according to Andrew DiLuccia, a spokesperson for the California Department of Health Care Access and Information.

States Set Targets

California is one of at least eight states that have set spending targets as part of an expanding effort to curb soaring healthcare spending across the nation. Connecticut, Massachusetts, Oregon, and Rhode Island have also authorized the use of some type of financial penalty. The specifics of each vary widely, although so far no state has applied them.

A by the California Health Care Foundation found that 4 out of 10 state residents said they had medical debt, and 6 in 10 reported that they or a family member had skipped or delayed medical care in the previous 12 months because of cost. Nationwide, about say it is difficult to afford healthcare costs.

After Rosalyn Book got stiches on her chin, the elementary school teacher received a $15,000 ER bill from a local hospital, despite having insurance. Many teachers in her district leave because they can’t afford the cost of healthcare and insurance premiums, she said.

“The healthcare charges are just insanity, and what we get as patients for the care, it’s not the best either,” said Book, president of the Monterey Bay Teachers Association. “If you’re a working, regular individual in terms of how much you make, the cost of living and especially the healthcare is just not doable.”

Meanwhile, hospitals are warning there’s a risk of more closures. According to Yale University’s , 17 hospitals have closed in the state since 2016, compared with only six openings.

Hospitals and other healthcare providers have said the proposed multimillion-dollar penalties are too steep and could destabilize their operations at a time when they’re facing funding challenges, including massive federal cuts to Medicaid, the end of enhanced federal subsidies for Affordable Care Act plans, and a sharp rise in uninsured patients. The One Big Beautiful Bill Act, passed by congressional Republicans and signed by President Donald Trump last summer, is expected to reduce federal Medicaid spending by more than 鈥 including by in California 鈥 and increase the rolls of the uninsured in the U.S. by over a decade.

Johnson said hospitals raise prices on commercial payers to offset the expense of treating uninsured patients, as well as patients on Medicaid and Medicare, which can reimburse care providers at rates that fall short of treatment costs.

In addition, said Anete Millers, vice president of legal and regulatory affairs at the California Association of Health Plans, tax increases on managed-care plans recently to offset federal Medicaid cuts will force plans to increase their prices for consumers.

“Some spending pressures originate outside of the control of health plans and are the result of public policy decisions rather than underlying changes in healthcare utilization or efficiency,” she told the affordability office’s .

Kristof Stremikis, the director of market analysis and insight at the nonprofit California Health Care Foundation, acknowledged that external forces can drive costs but said that plenty of unnecessary spending is within the healthcare system’s control, such as administrative waste and duplicative tests and procedures. of U.S. healthcare spending is considered wasteful, according to .

Elizabeth Mitchell, a former Office of Health Care Affordability board member whose term ended in May, agreed.

“Every business has external challenges,” said Mitchell, who is now president and CEO of Purchaser Business Group on Health, a nonprofit coalition representing large employers. “The hospital industry has not taken accountability to actually manage costs. I have heard those excuses for decades, and at some point, they have to make changes.”

First Step To Bring Down Costs

of five states with cost growth benchmarks, published in June, found that some have succeeded in modestly slowing healthcare spending, particularly those with enforcement mechanisms. However, spending growth in most states has still set. 

Jeremy Vandehey, a consultant with the Peterson-Milbank Program for Sustainable Health Care Costs, said setting benchmarks and collecting data to analyze which entities meet them is only a first step. Armed with information about what and who is driving up costs, states are more empowered to take additional action, such as imposing penalties or regulating prices, to bring down costs, he said.

“I don’t think anybody in any state is declaring victory on healthcare costs, but I wouldn’t say that that means the programs are a failure,” Vandehey said. “In all of these states, there’s much more robust conversations happening about, OK, we haven’t solved our cost crisis, so we need additional action.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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Watch: Mark Cuban Says You Can鈥檛 Fix Healthcare Until Every Price Is Known /health-care-costs/interview-mark-cuban-fix-healthcare-full-price-transparency/ Fri, 21 Aug 2026 09:00:00 +0000 /?p=2277194&preview=true&preview_id=2277194 The ongoing debate over the U.S. health system shouldn’t be based on whether the government or the private sector is the dominant player, billionaire entrepreneur Mark Cuban said this week. The bigger issue, he said, is whether the system’s participants are transparent about what they charge and what they pay.

“I’m not opposed to single-payer or universal healthcare at all,” Cuban said Aug. 18 in an interview with 吃瓜不打烊. But “when you don’t know all the costs, when there’s no transparency, it’s impossible to determine if it’s a better solution or not,” he said.

Cuban’s remarks came on the heels of primary election victories by progressive supporters of “Medicare for All” 鈥 most notably Abdul El-Sayed, who recently clinched the Democratic Senate nomination in Michigan.

The former majority owner of the Dallas Mavericks and a former investor on the hit TV show Shark Tank, Cuban changed the way generic prescription drugs are sold in 2022 by co-founding Mark Cuban Cost Plus Drugs. The website, which posts all its costs and takes a blanket 15% markup, sells thousands of medications, often at deep discounts compared with buying through private insurance plans or self-pay pharmacies.

“We took the transparent path for an industry where there was zero transparency,” Cuban said. “Everybody else prices to the market; we price to what we thought was fair.”

Cuban said that, in thinking about the broader problems facing the U.S. healthcare system, the key is to rebuild trust. “Trust really is a formula,” he said. “Trust equals transparency divided by self-interest.”

One way to build trust, he said, is to give consumers incentives to find the best price for nonemergency health services. Cuban said that means every medical purchase should count toward health insurance deductibles and out-of-pocket maximums, which is not currently the case.

He also advocates breaking up some of the vertically integrated health companies that have grown so large 鈥 owning insurers, care providers, and the companies that serve them 鈥 that they can dictate their prices. “If you break up these big, huge conglomerates, everything changes. The price of everything drops like a rock,” he said.

But so far, only a few lawmakers have been brave enough to push that goal, Cuban said, citing the co-sponsored by senators Josh Hawley of Missouri, a Republican, and Elizabeth Warren of Massachusetts, a Democrat.

In the end, Cuban said, what matters is not who is running the system but whether all the cards are on the table 鈥 in particular, whether the terms of healthcare contracts are public. Whether it’s the government or private businesses doing the negotiating, “if you don’t know how the deals are structured, it’s impossible to negotiate better ones.”

The interview was part of the “How Would You Fix It?” series featuring Julie Rovner, 吃瓜不打烊’ chief Washington correspondent and host of the What the Health? podcast.

An abbreviated version of this interview aired Aug. 20 in Episode 460 of What the Health? From 吃瓜不打烊: “Headless FDA Gets a New Nominee.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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New DOJ Guidance Could Give States Cover To Cut Disability Services /medicaid/wamu-health-hub-disability-services-funding-justice-department/ Fri, 21 Aug 2026 09:00:00 +0000 /?p=2276525&preview=true&preview_id=2276525 People with disabilities have long fought for the right to live at home rather than in institutions. Now, the Department of Justice says states don’t have to help make that happen.

The decision by the Trump administration comes amid massive cuts in federal funding for Medicaid. Advocates worry this could be a one-two punch for disabled Americans who want to live independently.

吃瓜不打烊 senior correspondent Stephanie Armour joined WAMU’s Health Hub on Aug. 19 to explain what this change means for Americans with disabilities and their loved ones.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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Headless FDA Gets a New Nominee /podcast/what-the-health-460-fda-nominee-trump-heidi-overton-august-20-2026/ Thu, 20 Aug 2026 20:02:39 +0000 /?p=2275237&post_type=podcast&preview_id=2275237 The Host
Julie Rovner photo
Julie Rovner 吃瓜不打烊 Read Julie's stories. Julie Rovner is chief Washington correspondent and host of 吃瓜不打烊’ 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.

Heidi Overton, a physician and White House domestic policy adviser, is President Donald Trump’s choice to be the next head of the Food and Drug Administration. Overton, an abortion opponent and supporter of Trump’s proposed changes to the childhood vaccine schedule, has made enemies while working on health policy from the White House and could face some tough questioning from senators.

Meanwhile, prescription drug prices are dropping for some people, and the wholesale retailer Costco is entering the Medicare market. Still, overall, the problem of healthcare being too expensive remains stubbornly hard to solve.

This week’s panelists are Julie Rovner of 吃瓜不打烊, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, Shefali Luthra of The 19th, and Alice Miranda Ollstein of Politico.

Panelists

Joanne Kenen photo
Joanne Kenen Johns Hopkins University and Politico
Shefali Luthra photo
Shefali Luthra The 19th
Alice Miranda Ollstein photo
Alice Miranda Ollstein Politico

Among the takeaways from this week’s episode:

  • Trump’s selection of Overton to lead the FDA is prompting concerns from a diverse crowd of skeptics that includes Sen. Bill Cassidy (R-La.) and adherents to the Make America Healthy Again movement. Her lack of managerial experience and history of controversial writings could be liabilities during the confirmation process, though Trump has a decent track record of clearing nominees through a hesitant Senate.
  • Grant money continues to be held up at the National Institutes of Health pending political reviews, and new reporting sheds light on “zombie programs” at the Centers for Disease Control and Prevention, where money has been appropriated but there’s no staff to use it. Plus, the trend of declining childhood immunizations continues, with vaccine exemptions for kindergartners jumping to another high.
  • New data shows the largest drop in prescription drug prices since the 1960s, and while the Trump administration is taking credit, it’s unclear what exactly caused it. Meanwhile, the federal government is investigating major health companies for allegedly dodging taxes or engaging in anticompetitive practices. And the wholesaler Costco is getting into the health insurance game, partnering with a nonprofit insurer to provide Medicare Advantage or Medigap plans in a few states.

Also this week, as part of the “How Would You Fix It?” series, Rovner interviews billionaire businessman Mark Cuban, who has already reshaped the generic drug market and now has his eye on the rest of the healthcare system.

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

Julie Rovner: Mother Jones’ “,” by Sophie Hurwitz.

Shefali Luthra: The 19th’s “,” by Barbara Rodriguez.

Alice Miranda Ollstein: The Texas Observer’s “,” by Mary Tuma.

Joanne Kenen: Politico’s “,” by Owen Dahlkamp.

Also mentioned in this week’s podcast:

Click to open the transcript Transcript: Headless FDA Gets a New Nominee

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

Julie Rovner: Hello, from 吃瓜不打烊 and WAMU Public Radio in Washington, D.C. Welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for 吃瓜不打烊. And, as always, I’m joined by some of the best and smartest health reporters covering Washington. We’re taping this week on Thursday, Aug. 20, 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: Hello. 

Rovner: Shefali Luthra of The 19th. 

Shefali Luthra: Hello. 

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

Joanne Kenen: Hi, everybody. 

Rovner: Later in this episode, we’ll have another “How Would You Fix It?” interview, from his car, with businessman and entrepreneur Mark Cuban, who’s now devoting most of his professional attention to the mess that is U.S. healthcare. But first, this week’s news. So, we finally have a nominee to lead the Food and Drug Administration, which has been without a Senate-confirmed commissioner since Marty Makary resigned in May 鈥 officially, over a dispute about flavored vapes. The winner of the search is Heidi Overton, a 37-year-old physician and former protégé of Makary’s from Johns Hopkins, who currently oversees the health portfolio at the White House Domestic Policy Council. What do we know about Dr. Overton, and what are her prospects for confirmation? We’ve already seen HELP [Health, Education, Labor, and Pensions] Committee Chairman Bill Cassidy say on social media that he has “concerns” about her, but he’s voted for nominees about whom he’s had concerns as recently as 鈥 checks notes 鈥 earlier this month. 

Kenen: I mean, Cassidy’s saying he has concerns is not indicative of where this ends up. At the end of the day, President [Donald] Trump has gotten most of his choices through a Senate that often begins hesitant to recalcitrant and usually gives him what he wants. So 鈥 sometimes it doesn’t. I mean, it’s not 100%. So, Cassidy is in a different position politically since he’s about to leave the Senate, and partly because President Trump. So we just don’t know where Cassidy is. But it’s not a great start. But it doesn’t mean 鈥 it’s the end. 

Rovner: What do we know about Heidi Overton, though? Everything I’ve read about her, she’s either pro-MAHA [Make America Healthy Again] or the MAHA people don’t like her, or she’s, you know, of Marty Makary or not of Marty McCarry. 

Ollstein: Yeah. So my colleagues and I wrote about this yesterday, and a lot of the leading MAHA activists view her as having been a roadblock in the White House to their efforts around pesticides, around vaccines, and other things, and so they are up in arms about the pick. They are, you know, saying she’s 鈥 part of the swamp and not part of, you know, the movement that they want to see sweep aside some of these government practices. And I think that her time in the White House and her previous work for the America First Policy Institute could really come back to haunt her. She wrote a lot of papers and op-eds with some controversial takes and policy positions, and I think everybody is sort of scrambling to go over that. People are also talking about her lack of managerial experience. You know, managing a huge agency with a huge staff, and you know, obviously, we have seen recent examples of people who lack that experience being appointed. So that’s also not a deal-breaker necessarily. But all of these things could add up to be problematic for her in the confirmation process. And then what I focused on was her anti-abortion record, which, you know, both could help and hurt her depending on whose votes we’re talking about. 

Rovner: That’s right. I mean, we saw [Sen.] Patty Murray, senior member of the HELP Committee, come out and, you know, and say, Not somebody that I could ever vote for. And also, I mean, she was at the signing of the vaccine executive order that the president had. So that puts her 鈥 whether, whatever she says in her confirmation hearings 鈥 that sort of puts her with the “Let’s change the vaccine schedule” group. I mean, she seems to fit in nowhere. I guess that’s sort of my question here. 

Luthra: That’s what’s so interesting about her is that there are these sorts of different interests and constituencies that have concerns about her, but sometimes they feel as if they could be contradictory. You obviously have, I mean, Patty Murray 鈥 I don’t know if she was ever going to vote for whoever Trump picked 鈥 but then you have Susan Collins in a very difficult reelection race, where abortion is a concern. You now have these concerns about vaccines. You have people saying maybe she’s not MAHA enough. And I mean, I think to Joanne’s point, Trump has gotten most people he has wanted. However, this does feel like this could get very complicated, just given how many people may be bringing different criticism from different vantages that could ultimately add up. 

Kenen: I’m not sure we’ve ever seen anything on the Senate floor where she’s going to be called anti-abortion and pro-pesticide. If it gets to the floor, I mean, it’s a weird one. But at the end of the day, you know, does it go through? You know, if you made me bet, my bet would be yes, but I wouldn’t want to bet a whole lot of money. 

Rovner: Well 鈥 we’re going to talk about reproductive health later in the podcast, but I do want to talk about abortion right now in the context of this nomination because, Alice, as you point out, Overton is known to be a fairly strident abortion opponent, and if she is confirmed, she’ll take over the study of the safety of the abortion pill mifepristone, which, as we have mentioned many, many, many times, the administration has sort of backbenched, if you will. Given that the new attorney general, Todd Blanche, has raised the specter of invoking the 1873 Comstock Act to bar the mailing of abortion pills, or anything else used for abortions, what is the outlook for medication abortion if Overton actually becomes the FDA commissioner? 

Ollstein: Well, it’s hard to say because we’ve really seen decision-making centralized in the White House, and so often it doesn’t matter what the Cabinet secretaries want to do. It’s about what the White House wants. And the White House, I think, has made it pretty clear that this is not a top, you know, restricting abortion is not a top priority for them. They are certainly sensitive to the politics of it, and so there is speculation that, you know, there’s a delay until after the midterms for anything meaningful on this front, so as not to risk the kind of backlash we saw in 2022 after the fall of Roe v. Wade. But I think it’s also pretty clear that this is just not a top priority for the White House. That doesn’t mean they won’t allow some of these, you know, former activists to do what they want to do 鈥 so Blanche, and now Overton potentially. But I think it’s not really a given either way. 

Rovner: Yeah. All right. Well, meanwhile, in administration news that we’ve talked about before but is still relevant, we’re just over a month from the end of the fiscal year, and grant money is still being held up at the National Institutes of Health, according to our podcast pal Paige [Winfield] Cunningham at NOTUS. Despite pressure from Congress, the agency is still delaying funds for already-approved grants while it conducts searches for keywords that could signal that the grant does not adhere to the administration’s political priorities. And it’s not just keywords. Reading from : “In multiple flagged grants, officials expressed concerns that they weren’t worth funding because their only practical use might be to support the writing of new laws.” Now, this is going on against the backdrop of a proposal from the Office of Management and Budget that would officially insert political approval into grant funding. That’s something the Senate has voted to at least temporarily block, but the House hasn’t weighed in on it yet. This could not only have huge implications for federally funded research going forward, but you could argue it’s having implications now. We’re seeing researchers, you know, taking opportunities overseas because they don’t know what their, you know, grant funding continuation is going to look like, and students not going to graduate school or not pursuing research careers. I mean, this is 鈥 even some of these sort of small things are having these bigger potential ripples as they go outward, right? 

Kenen: Colleagues who are grant-funded, NIH-funded, or other government-funded. I mean, they try to track the ever-changing rules. First of all, it’s very murky. It is changing. They keep adding things. Basically, they don’t want 鈥 not just the banned words 鈥 they don’t want research that can be bad, that can be used for policy 鈥  

Rovner: For things they disagree with, for policies they disagree with. 

Kenen: They don’t say it 鈥 right. Guidance doesn’t come out and say “policy that you know we don’t like.” It just says “policy.” But it’s really vast and confusing. It’s not new. What Paige wrote about is an update. I mean, this is still happening. It’s been happening since the beginning of the Trump administration. NIH is the biggie. There are some smaller agencies, like Agency for Healthcare Quality and Research [sic], AHRQ, right? 

Rovner: Research and Quality. 

Kenen: Agency for Healthcare Research and Quality. That’s pretty much defunct now. But those grants, the money stopped going out the door many months ago. So 鈥  

Rovner: And the National Science Foundation. I mean, NIH is sort of the biggest of them. Yeah. 

Kenen: It has to have the word “science.” 鈥 NIH is the biggie, right? I mean, and it’s also the bench science, the science that the drug industry 鈥 people don’t understand, they say, Let the drug industry do it. They can’t do this kind of basic bench research. They take this research and develop drugs, but the fundamental cellular level is NIH, or NIH-funded. And it’s really, I mean, clinical trials have been stopped in the middle 鈥 really promising research that is not partisan. 鈥 Disease doesn’t care. It’s cliché, and it’s also true. It just stopped, and work has been lost. But people haven’t done things that are several years in. 鈥 The deadline, also, for fiscal year spending is, if it’s not out the door, which is Sept 30, anything that’s out that door is, like, that’s done. It’s it. Bye-bye. The money isn’t gonna, unless it would go through a whole new process next year, which is unlikely in these grants, that’s the end of that. 

Rovner: Yeah, and that’s, I mean, my point in wanting to bring this up again 鈥 and you’re right, it is sort of an update of what we’ve seen 鈥 is that every time one of these top administration officials comes to Congress, they say, You’re supposed to be spending the money that we have appropriated, and they say, Oh yeah, not a problem. We’re going to spend the money that you’ve appropriated. And yet we keep seeing these stories that they are not spending money that Congress has appropriated. 

Kenen: Yeah, and historically NIH has been reasonably bipartisan. There have been years when there have been fights. There’s obviously stem cells and sort of certain issues have been, you know, very hot potato. But the basic enterprise of U.S. science, health science, has been largely bipartisan. Again, not every appropriation season, not every bill. But if you look at the overall arc, it’s bipartisan. 

Rovner: It was Republicans who doubled NIH funding in the 1990s 鈥 who led it.  

Kenen: [Arlen] Specter. 

Rovner: It was Newt Gingrich, actually. I mean. 

Kenen: Yeah, Gingrich, too, was very into health tech and things like that before his time. I mean, the War on Cancer was federal, right? That was [President Richard] Nixon. So, but we’re now in a 鈥  

Rovner: Different place. 

Kenen: Yeah, frozen. 

Rovner: Yeah. Meanwhile, Mike Stobbe at the AP is at the Centers for Disease Control and Prevention 鈥 again, where money’s been appropriated, but there is literally nobody at home. At the agency’s Office on Smoking and Health, and offices on Alzheimer’s disease, epilepsy, and sickle cell data collection, funds are allocated, but all the staffers have either been laid off or are still on administrative leave. So they’re being paid, but they are banned from working. This is yet another immediate challenge for new CDC Director Erica Schwartz, who had her first meeting with CDC staff yesterday. What do we expect her to take on first? 

Luthra: I don’t envy her. It, frankly, seems very difficult to figure out what your priorities are or should be, if you perhaps don’t have staff. It does seem like, from the reporting, perhaps a priority that she has outlined might be morale. And we know that morale has been very low in a lot of government agencies and the executive 鈥 especially places like the CDC, where you have a lot of career people who are mission-oriented, really believe in doing things for public health, and have seen that really attacked. And so I don’t know if that is enough to actually translate into things that are supposed to happen actually happening. But that seems like probably a place where it makes sense to start, right?, is just to help people feel confident that they actually will be able to do the work that they signed up to do. 

Rovner: Yeah, and you know, as you say, CDC is perhaps the most mission-oriented of all the HHS agencies. And because they’re in Atlanta, and you know not in the Washington area the way most of the rest of HHS is, they do often feel cut off. So she does have 鈥 she has a lot on her plate. And speaking of the CDC, the agency put out a rather cryptic press release this week on vaccine uptake among kindergartners entering school, noting that “CDC continues to encourage parents to discuss vaccination options with their doctors.” Meanwhile, the data linked to in the press release shows a small increase in parents opting out of having their children vaccinated nationwide. But that masks a much larger increase in some states. In Idaho, for example, just 75% of kindergartners entering school have had the MMR [measles, mumps, and rubella] vaccine. That’s obviously well below the 95% needed to provide herd immunity for measles. As my friend Jonathan Cohn put it in his piece for The Bulwark. “The scientific term for that is yikes.” Yikes indeed. 

Kenen: And it’s even within states 鈥 and some rural counties 鈥 there’s a lot of variation. The trend 鈥 for a number of years now has been dropping vaccine rates. Period. So I mean, whether CDC wants to engage in this as their first issue, they’re going to be asked about it. 鈥 They track it 鈥 can’t avoid it, because they have to approve and recommend, and, you know, insurance coverage, all sorts of things are imminent. So decisions have to be made. 鈥 Back to school’s already started in some parts of the country. 

Rovner: And so 鈥 I would say new CDC Director Schwartz was rather pointedly not in the room when the president signed the executive order on vaccines, even though now-FDA nominee Heidi Overton was. 

Kenen: She cannot put her head in the sand on this one. She’s going to have to 鈥 

Rovner: “She” Schwartz?  

Kenen: Yeah. So she’s she says, I mean, what we know so far is she’s been quite, you know, she went to the CDC, and the reports are that she came out and said, you know, I’m going to stick to the science, and the science supports vaccines.  

Ollstein: I thought what was really interesting about the recent reports is that, you know, the executive order the Trump administration signed doesn’t actually change anything legally, but it’s designed to put pressure on states to change their recommendations. And it’s been fascinating to me to see that even the reddest states really aren’t going for it yet. But that doesn’t mean that everything’s fine and everyone’s getting vaccinated. What we are seeing is, you know, individual parents making these moves away from vaccination. And so even without the state officially changing its requirements, the environment is just shifting, and using the bully pulpit in this way is changing people’s behavior 鈥 building on trends that were already happening: distrust and misinformation, and all of that. And so 鈥 even a small, small decline in the vaccination rate can have huge negative effects. I mean, the difference between having 97% vaccination vs. 91% 鈥 it may not seem like a big deal, but that’s the difference between herd immunity and people really being vulnerable. 

Rovner: And lots and lots more cases of measles, as we are seeing already this year. I mean, it’s, you know, talk about things that were completely predictable. Well, meanwhile, as my 吃瓜不打烊 colleagues Amanda Seitz and Stephanie Armour point out this week, all of this public pronouncing by the president and other health officials about the supposed dangers of vaccines comes as HHS Secretary RFK Jr. blows past deadline after deadline to uncover the promised cause of the rising cases of autism. The story notes that the secretary “has looking for root causes in a research effort that’s offered no public status updates and few details about who, or even which agency, is leading the effort.” We do know that one of the people working on the project is Reyn Archer 鈥 he’s a noted vaccine critic, son of a former House Ways and Means Committee chairman, and was head of the Title X Family Planning Program during the George H.W. Bush administration in the early 1990s 鈥 even as he was publicly opposing legalized birth control, which of course is what the Title X program does. He later served as Texas’ state health commissioner under then-Gov. George W. Bush, although he was eventually fired for making racist remarks to a subordinate. I had not heard his name since, until now. But he’s going to uncover the root causes of autism, am I right? That’s the plan? 

Kenen: More power to him. I mean, autism. It’s not like there’s no research, and the conclusion is that it’s multi-causal. That there’s not one cause. That’s the current state of the science, which can always evolve. But the current belief is there’s probably a genetic component, but it’s a mix of factors that we don’t fully understand. But vaccines is not one of them. 

Rovner: Or at least so every study, every big study, we have seen continues to say. Well, moving on, lots of news about healthcare prices this week, which remain a pressing issue for both Republican and Democratic voters as the midterms draw near. One interesting story this week noted that prescription drug prices fell year over year by more than 3% 鈥 that’s the largest drop since the early 1960s 鈥 but it’s not entirely clear why. The Trump administration, of course, says it was their efforts, particularly to bring down the price of those popular but very expensive GLP-1 weight loss drugs. Analysts say it’s more likely the result of the Biden-era Medicare drug price negotiations, which involved more widely used medications. Whichever, I imagine if you’re not seeing your prices drop at the pharmacy, and those drops may well be absorbed by insurers and middlemen and all the people we talk about, will this good news even have much of an impact when people go to the polls? 

Luthra: I can’t imagine it necessarily would be that meaningful because overall the macro trends remain pretty bad. Health insurance is still getting very expensive. Employers are really struggling 鈥 those that offer it 鈥 they are largely passing more costs to consumers. And so people are getting to have to pay more for healthcare, even if their drug prices may be decreasing in the aggregate. And so it’s just hard to really suggest that this good news could really outweigh those other factors, especially when you think about the broader sort of angst that exists around costs and costs continuing to go up. 

Rovner: Yeah, well, in wonky news that could actually have a larger impact on what people pay for medical care, the Trump administration is actually going after some deep-pocketed healthcare providers. Stat News reports, in separate stories, first that the 鈥 that’s the parent of UnitedHealthcare, the insurer, and Optum, the services and tech arm 鈥 for allegedly underpaying taxes by funneling money through a foreign subsidiary. And second, the for potential antitrust violations. State attorneys general are also looking at Epic’s alleged anticompetitive practices. Cracking down on some of the monopolistic practices of the largest payers in the healthcare system actually could end up saving the system money, right? I mean, this was 鈥 something that we saw a fair bit of during the Biden administration, particularly from the Federal Trade Commission, and not so much of during the Trump administration, which has seemed to have been more favorable, if you will, to big companies. 

Luthra: I guess there’s still that question about providers, and obviously bringing down prices and addressing consolidation in payers, amongst things like electronic health record companies, can be effective, but we probably also would want to see meaningful movement in terms of provider consolidation as well, and that just seems potentially like a bigger hill to climb. 

Rovner: But this is a start. One would say, particularly this administration, going after United, which is sort of the the biggest 鈥 United’s power threatens the federal government’s bargaining power at this point. I was interested to see, you know, this story, if nothing else, made public, because obviously somebody leaked it. We will see how these all shake out. Well, finally, Costco, home of the cheap rotisserie chicken and the $1.50 hot dog and soda, is entering the Medicare market, . According to the Journal, Costco will partner with the nonprofit SCAN Group to offer Medicare Advantage plans in two states and a Medicare supplement, Medigap, plan in a third state. Could this eventually make a dent in the private Medicare market? Costco already does big business selling discount prescription drugs, eyeglasses, and hearing aids. I get my dog’s flea and tick medication at Costco. It costs half of what it does at my vet’s office. One presumes this could be, you know, a leader. We’ve not seen this before, right? 

Kenen: The head of SCAN, which is a pretty reputable insurance company 鈥 

Rovner: Nonprofit insurance company. 

Kenen: Nonprofit insurance, and I should say I know 鈥 personally the current CEO, president, whatever his post is. I mean, but you know, I’ve written a lot about aging over the years, and it’s basically considered 鈥 one of the higher-quality, more reliable elderly-focused health plans. And he has something interesting to write when he announced it or wrote about on LinkedIn about how he personally, like, is a big Costco guy. But he talked about trust, which we’re all talking all the time about how there’s a lack of trust in healthcare. There’s a lot of trust in Costco, and he talked about how branding, SCAN, and Costco, you know 鈥 obviously it’s a business decision he made, but he’s also, like, this big Costco guy and who worries 鈥 I know him through conferences on trust, actually, that’s where I met him 鈥 and he’s thinking, OK, Costco, in addition to, like, giving you way too much of whatever it is you thought you needed, it can also fix the trust crisis in America. Right? 

Rovner: Hey! 

Kenen: And they’re efficient, right? I mean, I don’t know if all four of us are Costco people, but the, you know 鈥 

Rovner: I am. 

Kenen: I saw her. I ran into her buying her veterinarian [unintelligible, through laughter] 鈥 I was in the photo section. 鈥 It is a trusted brand, and it’s an interesting 鈥 and they have national reach in there, you know. 

Rovner: And you will hear in my conversation with Mark Cuban that trust is a really big deal in healthcare right now. I mean, we obviously talk about this every week. I mean, I’m, obviously this is a very small step, but I’m really interested in where it turns out. 

Kenen: It’s a smart business move, and it’s a talker, too. Like, people are gonna see this headline and pay attention to it because it’s, like, just a thing. 

Rovner: Yeah, it is. All right, we’re going to take a quick break. We will be right back. 

So, a good bit of reproductive health news this week. Glad to have both Alice and Shefali here. We will start in Idaho, where a federal district court judge ruled that the state’s abortion ban cannot be used to prosecute doctors who perform abortions to protect the pregnant person’s health, not just her life. Of course, abortion opponents vehemently oppose health exceptions, as they’re called, because they say health includes mental health, and that becomes a loophole so big that it basically eviscerates the ban. The state’s attorney general, former congressman Raúl Labrador, said he would appeal and was confident the decision would be overturned. I would imagine that he’s probably right. Is the Supreme Court eventually going to have to spell this out? I wouldn’t be that surprised if they wanted to. 

Ollstein: I think this gets into some of the same EMTALA [Emergency Medical Treatment and Active Labor Act] territory, where we have seen the Supreme Court sort of back away from in recent years. But again, we just keep circling around and around the same question, which is, when is an abortion OK for a medical emergency purpose? How close to dying does a woman have to get before a doctor can perform an abortion? And we’ve seen again and again in Idaho that doctors are scared and confused, and even when they think that they should have the right to perform the procedure, you know, they’re still putting women on these dangerous life flights to other states in order to get care, leading to hours and hours of delays and potential complications. And so, you know, this court case and this court ruling was sort of aimed at clarifying that and giving doctors the confidence to be able to intervene when they feel it’s medically necessary. But now we’re seeing the state challenge that, and we’re just going around and around. And, you know, there have been similar cases in other states, just a whole mix of rulings, one way or the other, and that just creates more of a patchwork where, you know, some somebody’s ability to get care varies completely between states 鈥 and even within states, between hospitals, based on how much you know institutional backing doctors feel like they have. You know, will their hospital’s lawyers go to the mat for them or not? Do they work in a private practice vs. a big hospital system? All of these things come into play, 

Rovner: And, of course, we’ve also seen doctors, particularly in Idaho, leaving the state because they’re afraid that they can’t practice. I mean, they can’t adequately care for their patients. Shefali, I see you nodding. 

Luthra: Yeah, and what’s interesting about this case, other than the fact that Idaho will actually have an abortion ballot measure this November, is that we do have a federal judge here saying, in particular contexts, I see a right to an abortion. And I was talking to some abortion legal scholars about this, and they made the point that, in a way, this runs afoul of the Dobbs decision, because you do have a federal judge saying people are actually entitled to abortions, and that is a right that they have, even if it is much narrower than what Roe v. Wade guaranteed. And obviously, this is going to be appealed. This is going to continue to be litigated. We may not see immediate change for people’s ability to get healthcare in Idaho or other places with very strict bans, but it does underscore how unsettled these legal questions remain 鈥 how there remains a lot of debate over whether Dobbs was actually a correct interpretation of constitutional law. And I think it really takes us back to the argument we heard from some of the conservative majority that this would now settle every question about abortion. Obviously, it has not. Obviously, many more questions will continue to be argued and litigated in the courts. 

Rovner: Yeah. Well, meanwhile, in other breaking news, a federal judge here in Washington blocked the Trump administration’s changes to the teen pregnancy prevention program that funds classes on contraception and abstinence, among other things. But they’re still not necessarily getting the money appropriated by Congress, right, Alice? 

Ollstein: So a judge in D.C. is blocking the administration from using its very strict new guidance going forward when it doles out money for the program, but it’s not ordering the administration to give back the money that was already cut earlier this summer from all of these grantees around the country. And, by the way, the money was cut both from grantees like Planned Parenthood, where you would say, “Oh, well, that sort of makes sense that the administration would go after their money.” But they’re also cutting funding from, you know, faith-based programs, abstinence-only programs in very red states, and prompting a fair amount of backlash that I’ve been covering. You know, places like Texas and South Carolina and West Virginia have also lost funding. And, of course, all the programs in those states had to abide by state restrictions around what can be taught. And so they were already following these very conservative guidelines. But that’s not conservative enough for the administration, which put out this guidance saying, you know, while abstinence-only was an option before, now it is basically mandatory. And so that guidance is on hold, but, again, the judge said that he didn’t know if he had the authority to order them to give back the money, or if some other jurisdiction could handle that. And so, this is just a preliminary injunction, which means there’s going to be months and months of litigation going forward. 

Rovner: Finally, this week, a story from the “Who Could Ever Have Imagined This?” files: A California couple hired a surrogate in Alaska to carry their pregnancy. After the fetus was diagnosed with a life-threatening heart condition, the couple exercised their option in the surrogacy contract to terminate the pregnancy. But the surrogate refused to have an abortion, and she traveled to Texas, where abortion is illegal, and gave birth to a baby boy last week. News reports say the baby, who is now in the custody of the couple who are biologically his parents, had the first of several surgeries needed to treat the heart condition. But this is a genuinely wrenching situation. Who gets to decide what here and under which state’s laws? Bioethicist Arthur Caplan told Houston Public Media that there are so many ethical issues here, he could spend an entire semester’s course teaching it. 

Luthra: And I think what is important about this case as well is, I mean, it’s obviously just like so, so, so sad, and this poor family is just having to deal with something really heartbreaking that no one should have to navigate under the national spotlight in Texas. It is really energizing conservatives who want to ban surrogacy, and we have already heard from lawmakers in the state legislature say they will be looking at surrogacy specifically when they convene next year. I have talked to anti-abortion activists in the state who are very hopeful that this case will give them new impetus to ban, at the very least, commercial surrogacy. They would love to ban all forms of surrogacy. And it is seen by a lot of anti-abortion folks who oppose fertility treatment, including IVF [in vitro fertilization], as something maybe easier to target. And I think it’s politically really complicated, because Americans don’t know as many people who get pregnant through surrogacy as they do people who might use IVF. But when I was talking to, again, legal experts about this, one point they made is that if surrogacy restrictions do take off in a meaningful way, often, the intellectual framework and arguments being made are ultimately the ones that would be used for IVF restrictions as well. And so, there is a possibility of a real slippery slope and more of that opening the door to fertility treatment restrictions that could affect a lot of people. 

Kenen: I think there’s a lot of public misunderstanding about what a gestational carrier is. When surrogacy became, not common, but sort of emerged in the public eye, there were a couple of really high-profile court cases. This was in the late ’80s. The “Baby M” was the most famous. And these were situations, at that point, where the woman carrying the child, it was her egg. So in the Baby M case, it was a couple that couldn’t have children. She was-鈥 I don’t even know if that was 鈥 that wasn’t probably IVF. That was probably some other kind of artificial insemination. But the woman who decided she didn’t want to give up the baby after carrying it 鈥 it was, in fact, her biological child 鈥 and the practice became not to let, to separate the surrogate carrier from the egg donor. It’s not 100%. It’s not that it never happens, particularly if there’s family situations where maybe an aunt carries, etc. In this case, we’re really, based on public record, because I did a little reading on it this morning, it’s not clear, of the “biological parents,” it’s his baby. It’s not 100% clear on the public record that it’s actually her egg, the wife’s egg. But it is not the carrier’s egg. The woman suing to keep the child, saying she wants to have the baby, it is not her, it was not her egg. State law varies. Most states say that the surrogate in this kind of situation does not have maternal rights; that it’s the couple that hired her. Texas is, I believe, more blurry. There are a few states that it is more ambiguous, and also remember that this is a really tight, unusually and unexpectedly tight Senate race in Texas, where a very anti-abortion state, obviously, and also in this case the couple says they didn’t even ask for the abortion, but that’s he-said-she-said-they-said, we don’t know. I don’t know, at least, right? But abortion is a huge political driver in Texas; it’s a close race. [Ken] Paxton, who is the state attorney general, who is taking the side of the surrogate mother, is also the Senate candidate. You know, this is, you know, we’re 2陆 months out, whatever, from the election. Three, I guess, closer to three still. But it’s very political in a state that probably has more politics around abortion than probably any other state. 

Rovner: Just what we needed: another thorny issue to throw into this mix. All right, that is this week’s news, or at least as much of it as we could get to. Now we will play my in-the-car interview with Mark Cuban, and then we’ll come back and do our extra credits. 

I am so pleased to welcome businessman and entrepreneur Mark Cuban to “How Would You Fix It?” Mark is probably best known to most people as a former shark on the TV show Shark Tank and the former [co-]owner of the Dallas Mavericks NBA team. But he’s also the co-founder of the Mark Cuban Cost Plus Drugs company, which sells generic medications directly to consumers at transparent prices and big discounts. More recently, he’s been talking about even bigger reforms to the healthcare system, which is why I’m so excited to have him here. Mark Cuban, thank you so much for joining us. 

Mark Cuban: Thanks for having me. 

Rovner: I’m curious: Your background’s been mostly in tech and in sports. How did you come to make healthcare such a priority? 

Cuban: I got a cold email from my now co-founder, Dr. Alex Oshmyansky, and he wanted to build a compounding pharmacy that made sterile injectables that are on the FDA short-supply list 鈥 which it’s crazy that there is a short-supply list for generic injectables. So that was great, but it wasn’t big enough. And as I looked into it, it was right around the time that “pharma bro” [Martin Shkreli] was going to jail, and I was like, “How can this dude jack up the price of a generic medication to the detriment of so many people?” And then it became obvious that nobody knew what a medication costs, nobody knew why it cost what it costs, and nobody understood why everybody paid a different price for the same medication. That list led to us launching costplusdrugs.com in January of 2022, and it’s just been growing like a weed ever since. 

Rovner: For decades now, the big debate in health policy has been whether the system should be more run by the government or more run by the private sector. Is that even the right way to focus on this anymore? Now everything is sort of hybrid and a mess. 

Cuban: Yeah, no, it’s not, because if the government doesn’t have data, and the government can’t trust the vendors that they’re working with, it doesn’t matter that it’s the government doing all the negotiating. And you see that in other countries. For instance, we get emails from countries around the world 鈥 from Canada, England 鈥 asking to buy generics from us ’cause our prices for generics, particularly specialty generics, are less expensive than what they sell for in countries that have single-payer or universal care. And so, while I’m not opposed to single-payer or universal healthcare at all, and kind of the analogy I use is: If healthcare costs $1 per person per year 鈥 yeah, great, taxpayers would pay that. But it would be a set $1 and it’d be obviously inexpensive. But when you don’t know all the costs, when there’s no transparency, it’s impossible to determine if it’s a better solution or not. 

Rovner: Are there segments of the healthcare industry that would work better if the private sector ran them, and better if the government ran them? I’m thinking, you know, hospitals, doctors, drugs.  

Cuban: I don’t think it’s like that at all. I think it depends on how much transparency there is. The fundamental issue is transparency and trust. If you don’t know 鈥 like, there are a lot of hospitals, and you know this better than anybody, that don’t know their costs. And if you just hire the same people and just say, “Look, we’re going to pay Medicare pricing to Mayo Clinic, and Mayo Clinic doesn’t know all their costs,” or “We’re going to take an urban hospital and continue to pay them Medicare and Medicaid because that’s most of their business,” and they don’t know their cost, they just know their cash balance, it doesn’t matter who runs it. 

Rovner: So, what do you fix first? 

Cuban: Transparency. You have to be able to publish contracts so that any contract that’s signed with a federal agency, the federal government, a state agency, a city, not only are the terms of the contract published, but the prices are published, so that Tricare would be required to publish their prices. By seeing the actual contract, you can see where the city-state agency is getting ripped off. Because right now there’s confidentiality requirements, and the companies, like the big insurance conglomerates, they say, you know, we can’t do this. We can’t show this, it’s proprietary information, which is nonsense. You’ve got hundreds of thousands of companies. You’ve got hundreds of agencies and states and cities that negotiate the same contracts. So lots of people know, but they do it to make it more complicated. And so, as a result, nobody knows how the deals are structured. And if you don’t know how the deals are structured, it’s impossible to negotiate better ones. And if they’ll sue you for discussing it with their peers, then nobody 鈥 it’s like Fight Club. The No. 1 rule [of] Fight Club is you can’t talk about Fight Club. The No. 1 rule of healthcare contracts is you can’t talk about healthcare contracts. 

Rovner: Yeah, and we’ve, you know, Congress has passed laws. The president has pushed a lot of these transparency rules, and basically, the health industry has said, “Yep, sorry, we can’t do it,” or “We’re going to do it in such a way that you can’t find it out anyway.” 

Cuban: Correct. 

Rovner: “We’re going to send you reams and reams and reams of data, and you can go digging if you would like.” 

Cuban: Correct. And so you take that to the next step. The big healthcare companies 鈥 first of all, they’re vertically integrated. They have hundreds, if not thousands, of subsidiaries. People don’t even know what the subsidiaries are when they do business with them, right? And so, when that happens, there’s just no way for any of the states, cities, federal government to enforce the laws. The big healthcare companies have more lawyers, move faster, are better able to find loopholes than the government and the agencies that enforce it are able to enforce it. And so, what ends up happening. You see all these fines. This PBM, this insurance company, whatever got fined for A, B, or C, and then they just go right back to doing business with them. So when I talk to governors, one of the first things I say in terms of reform is A) publish the contracts, and B) if you are doing business with a vertically integrated healthcare company, and they are fined by any federal agency or any state government, they get one mulligan. If they are fined a second time, they can’t do business with you for five years. That will act as the enforcement mechanism to keep them in line. And then the third thing that I always push is that anybody is able to go out and make a cash purchase, whether it’s medical or pharmacy, as long as it’s less expensive than their out-of-pocket, and have it by law count towards their deductible and max out-of-pocket. When you do that, you give them the opportunity to shop. When something is shoppable 鈥 not everything is 鈥 but you give them the opportunity to shop, and that helps force down prices. 

Rovner: So, I’ve been doing this since the 1980s, and it’s always been the Democrats beating up on the big insurance companies, and the Republicans basically defending them. Now that Republicans are beating up on the big insurance companies, are we kind of inevitably going towards a government-run single-payer? 

Cuban: No. Like, if you look up, if you look at the Break Up Big Medicine bill that was introduced by Josh Hawley, a Republican, and Elizabeth Warren, to me that’s the first step. So the good news: It was introduced on a bipartisan basis. Because if you break up these big, huge conglomerates, everything changes. The price of everything drops like a rock. But the problem is, nobody else, no senators have supported it, and nobody in the House has introduced a comparable bill. Everybody just chickened out. And so that’s the first step. Put aside the economics. Put aside that we don’t know the cost. Put aside that we have no transparency. All those things are important, but making sure we have health care for everybody is more important. That’s the difference. I think that also should be an American dream. As an entrepreneur, I’m a big fan of the American dream. But being able to be healthy and not be afraid that you can’t afford what you need or your family needs, that’s wrong in our American dream. And you know, when we talk about healthcare as a right, doctors freak out because they presume that they’re going to be paid Medicare rates, and they lose control of their life, right? And they talk about opting out and not doing it, you know. And so you need to get all these stakeholders accounted for. And until you start to do that and put together a plan that people will accept, we’re not going to ever be in a position to take care of people like so many of us hope to do. 

Rovner: And yet that would require both parties to basically lay down their arms.  

 

Cuban: Yes, which I think is possible. I think it’s doable because the No. 1 thing that, in every poll, people are concerned about healthcare costs. It’s not the quality of healthcare. Nobody really complains about the quality. Our doctors are great. Our systems are great. It’s the economic side. And who defines the economic side? Those humongous healthcare conglomerates. And what’s the best way to get to a point where we have transparency at the contract level, you know, flexibility and understanding, etc., all the things I mentioned? You break up those huge conglomerates that have thousands of subsidiaries that do $150-plus billion in intercompany transfers, that game the medical loss ratio. I mean, all these things happen because those big companies have more control over the economics of our healthcare system than the government does. 

Rovner: Well, I hope we actually get to that point, and I hope you’re around to help with some of these stakeholder conversations. 

Cuban: Oh, hopefully I’m not going anywhere. 

Rovner: Thank you so much. 

OK, we’re back. It’s time for our extra-credit segment. That’s where we each recognize a story we read this week we think you should read, too. Don’t worry if you miss it. We will post the links in our show notes on your phone or other mobile device. Shefali, you picked first. Why don’t you go first this week? 

Luthra: Sure. My story is from The 19th by my colleague Barbara Rodriguez. The headline is “.” And I love this whole genre of story. The GLP-1 market is exploding because these drugs can be so expensive to get from your healthcare provider. You see advertisements everywhere, all over social media, people promising to sell you a GLP-1. And as Barbara’s story gets into, often they are not actually GLP-1s. It is something fake. It is not actually going to help you lose weight, but it is going to take your money. And I just think that this is such an exploding market. So much has changed that we can’t read enough about how the, just the growth of options, or not legitimate options, is affecting people, and I’m really glad she did this story. 

Rovner: Yeah, it was a really good story. Alice. 

Ollstein: I have a story from The Texas Observer by Mary Tuma, and it’s called “.” So this is taking a deep dive on the situation in Texas, but the article does a good job of pointing out that this is a trend across several states that implemented abortion bans, where there was, you know, efforts to pause or revamp, or obscure, or change in some way the groups in every, that exist in every state that study maternal deaths. And there is just a suspicion that this is an attempt to hide from the public the impact of the abortion ban on maternal mortality. You have a lot of experts quoted in this piece. You have the family members who have lost their wives and mothers to pregnancy-related deaths, and so this is just an ongoing fight. And, you know, doctors say we really need this data and this analysis to know how to better provide care in the future. It’s not just a political football; it’s actual medical knowledge that we need to build. 

Rovner: Yeah, I think ProPublica did this for Georgia, I think, last year, so yet another in these series. Joanne. 

Kenen: There’s a story in Politico by Owen Dahlkamp: “.” This is not unique to health law, but given how complicated health law is and how much health law Congress deals with in any given year, it’s quite relevant to health law. So staffers are using AI to actually draft legislation, not just to research something. And I mean, it’s hard to get away from AI now. It’s, like, even pops up on people’s phones, right? But drafting legislation is very precise and complicated, and AI is apparently not very good at it. So the House counsel, which is the Office of Legal Counsel, which actually has to make sure the legislative language is correct and doesn’t accidentally reveal the wrong thing, they’re having a hard time. Although they have now created their own tool to try to correct the AI slop, but they’re getting overwhelmed. There’s, you know, we’ve all seen stories, we’ve all gotten pitches about, you know, so-and-so introduced a law. What the general public doesn’t understand is introducing a law, you know, it’s good for a press release 鈥 introducing a bill, excuse me. Introducing a bill does not mean a whole hell of a lot, except that you’re satisfying some constituent or constituent group, right? But congresspeople and senators like to say they introduce this and they introduce that and they introduce the other thing. So the number of bills being introduced was already rising spectacularly, and now with the slop, there’s like the slopth degree of it. So it’s messy. 

Rovner: It is messy, and it does, I mean, it sort of prevents the real work of actually drafting legislation that’s going to become law from getting done. 

Kenen: There’s going to be something, like, really bad that comes out that somebody in the poor OLC office doesn’t catch, and it’s going to repeal, like, you know, the flag. 

Rovner: Yeah. We will see. All right my extra credit this week is from Mother Jones by Sophie Hurwitz. It’s called “.” And you may have heard that ICE [Immigration and Customs Enforcement] is spending $20 million to buy these gloves, which administer an electric shock at the touch of a button on the wrist for their officers. What makes them better than a Taser or other non-[lethal] device? Well, one Missouri police officer whose force uses them said the gloves “allow their wearer to inflict pain without leaving the sort of marks that could look bad to witnesses or leave an officer vulnerable to lawsuits.” In other words, they make it easier for people to inflict pain on others, whether warranted or not, without likely recourse. How very 2026. 

OK, that is this week’s show. Thanks to our editor, Emmarie Huetteman, and our fill-in producer-engineer this week, Zach Dyer. We also had production help from Taylor Cook. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcasts 鈥 as well as, of course, kffhealthnews.org. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me on X , and on Bluesky . Where are you guys hanging these days? Alice? 

Ollstein: on Bluesky and on X. 

Rovner: Shefali. 

Luthra: on Bluesky. 

Rovner: Joanne. 

Kenen: Mostly on and on . 

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

Credits

Zach Dyer Audio producer
Taylor Cook Audio producer
Emmarie Huetteman Editor

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吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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How Much of a Cancer Drug Is Too Much? Patients, Researchers Challenge FDA-Approved Dosages /health-industry/cancer-drug-immunotherapy-fda-approved-dosages-challenged-keytruda-opdivo/ Thu, 20 Aug 2026 09:00:00 +0000 /?p=2273114 Northwestern University economist Chuck Manski studies decision-making amid uncertainty. That prepared him better than many other cancer patients to decide whether to stay on an immunotherapy treatment that was making him very ill.

For six months in 2022, Manski received monthly infusions of nivolumab to fight advanced melanoma. The drug ruined his thyroid gland, he said, requiring him to go on a special medication for the rest of his life, and caused severe dryness in his eyes, lips, and mouth. The FDA’s protocol for the drug called for an entire year of treatment, but Manski said his oncologist couldn’t explain why. It’s FDA-approved, “so that’s what we use,” she said.

By that point, Manski showed no cancer signs or symptoms, and after reading a lot of medical journal articles, he concluded that the intense side effects probably meant the treatment had done about all it could do.

“She couldn’t tell me a year was the optimal dose. Nobody could,” he said in a June interview from Spain, where he received an award for his economics work. “So I made my own diagnosis. I took myself off.”

Manski’s decision was in line with what doctors in , , were already doing: giving lower doses of nivolumab, sold under the brand name Opdivo, and of a similar drug, pembrolizumab (Keytruda), or giving them for shorter periods or over longer intervals than the FDA recommended. In India, oncologists found that of nivolumab had a powerful impact on several cancers.

“There is incredible uncertainty in drug dosing,” Manski said.

His experience impelled him to join an informal yet determined community of researchers, doctors, and patients pushing for extra studies to help patients and doctors find the right dosage for an array of cancer drugs. They point to evidence suggesting that taking smaller doses of some cancer drugs, or remaining on them for shorter periods, could save billions of dollars and prevent some of the worst side effects.

In a , 43% of U.S. adults said they had skipped their medication in the past year because of cost. A Vanderbilt University study of Medicare enrollees released in 2022 found that went unfilled at the pharmacy.

But dose-optimization studies rarely occur after the early stages of a drug’s development, or once it’s on the market. By then, few parties in the U.S. healthcare system 鈥 beyond patients 鈥 have a stake in learning that a lower dosage could work as well while causing less harm.

Pharmaceutical companies have shown little interest in dialing back recommended dosages. Once they set the price for a drug, the more sales, the more profit. One study that examined 29 expensive cancer drugs estimated that if minimum necessary dosages had been used in 2024, the U.S. healthcare system could have saved roughly $31 billion.

“Decisions aren’t always made with the best needs of the patients in mind. The bottom line is another reason,” said Matthew Goetz, a breast cancer researcher at the Mayo Clinic Comprehensive Cancer Center.

A photo of two IV bags as someone receives immunotherapy medication for melanoma treatment. The leftmost IV bag has "nivolumab" written on it.
Doctors in other countries have been giving patients lower doses of nivolumab or giving them for shorter periods or over longer intervals than the FDA recommends. (George Frey/Bloomberg via Getty Images)

Merck last year sold nearly $32 billion worth of pembrolizumab, a drug that’s FDA-approved for more than 40 cancer conditions. It accounted for almost half of Merck’s drug sales. Bristol Myers Squibb, meanwhile, brought in $10 billion from nivolumab, which works similarly to pembrolizumab in tweaking the immune system. Three important but often toxic breast cancer drugs 鈥 Ibrance, Verzenio, and Kisqali 鈥 at Pfizer, Eli Lilly, and Novartis by $4.1 billion, $5.7 billion, and $4.8 billion, respectively.

Pembrolizumab is usually prescribed at a fixed dosage; nivolumab is sometimes prescribed at a fixed dosage, sometimes based on the patient’s weight. If the patient is dosed less than what’s on the label, drugmakers generally get less money. And they aren’t the only ones who lose out.

Through a federal program known as 340B, created in 1992 to subsidize the treatment of low-income patients, hospitals that treat a certain percentage of low-income patients can buy drugs at a steep discount, while charging insurers or patients more. For Medicare patients, doctors are paid an additional for each infusion.

From 2010 to 2024, cancer drug revenue to doctors and hospitals increased from about $9 billion to nearly $36 billion, according to research by . About half those profits came from immunotherapy drugs like pembrolizumab and nivolumab.

“Pembrolizumab is ,” said Mark Ratain, a professor of medicine and chief hospital pharmacologist at University of Chicago Medicine. “That’s why you don’t see hospitals in this country running to do trials that test lower doses.”

A man stands in a garden area outside of his home. Foliage is seen blurred in the foreground.
Mark Ratain, a University of Chicago oncologist and clinical pharmacologist, battles what he sees as unnecessarily high dosages of high-cost cancer drugs such as Keytruda and Opdivo. (Taylor Glascock for 吃瓜不打烊)

Merck spokesperson Julie Cunningham said the drug’s dosage recommendations were based on extensive testing. “In a life-threatening and challenging disease such as cancer, it is critical that the dosing for a cancer therapy is established through well-designed clinical trials,” she said. “Changes in dose or duration that have not been similarly studied may potentially compromise the therapeutic effect.”

Still, some oncologists start their patients off slowly on any of a variety of cancer drugs, although there may be concerns about lawsuits by a patient or their survivors over a prescription of lower-than-labeled dosages.

Kathy Miller, a professor of oncology at the Indiana University School of Medicine, routinely starts metastatic breast cancer patients with 400 milligrams of Kisqali daily for three weeks (with one week off), rather than the 600 milligrams recommended on the label. Sometimes patients ask for the standard dosage.

“I have to tell them, 鈥業 don’t want to kill you,’” she said.

Insurers routinely challenge her lower-dosage prescriptions, Miller said, presumably because price rebates from the drug company are set to the standard dosage. To avoid endless phone battles with insurers, she prescribes 600 milligrams but tells her patients to take only two of the 200-mg pills and save the third for the next cycle.

Follow the Cures 鈥 And the Money

On May 31, at the annual meeting of the American Society of Clinical Oncology, or ASCO, at Chicago’s McCormick Place convention center, most of the audience of 8,000 rose in a prolonged standing ovation for the experimental drug daraxonrasib. Patients with pancreatic cancer who took the drug, presented that day, lived nearly twice as long 鈥 a median of 13 months 鈥 as those receiving chemotherapy.

The next day, in a slightly smaller hall, Amol Patel, a medical oncologist from New Delhi, discussed studies in various cancers in which 20- or 40-mg doses of nivolumab biweekly 鈥 one-sixth or one-twelfth the recommended dosage 鈥 gave Indian patients several months to a year longer survival than patients who underwent chemotherapy, and with fewer side effects.

Fewer than 100 people attended Patel’s talk.

The ingenious development of daraxonrasib was big news, since pancreatic cancer has been a death sentence until now. But from a global perspective, the news out of India might be just as important.

At the ASCO meeting, “the focus is always on the shiny new drug,” said Daniel Goldstein, an oncologist and drug policy researcher at the Rabin Medical Center in Israel who has fought for a decade, with some success, to lower pembrolizumab dosages in hospitals there and in other countries. “It can be quite lonely to be us,” he said, adding that he’s seen increasing appreciation of his work.

The data from India offered a glimpse of what could be. However, the studies Patel referred to compared ultralow-dosage immunotherapy to older chemo drugs; none compared ultralow doses against standard nivolumab or pembrolizumab treatments. In India, this would be a sterile exercise, because full-dose treatments are beyond the reach of any but the very wealthy, said Vanita Noronha, an oncologist at Tata Memorial Hospital in Mumbai.

Bristol Myers Squibb, or BMS, to make its drugs available in lower-income countries. But the company hasn’t been involved in the lower-dose nivolumab trials and, in a statement to 吃瓜不打烊, said the evidence suggested that or shorter duration harmed patients.

While not all U.S. oncologists agree with BMS’ assertion, the Indian data is, to most, a mere curiosity. “Can we really give 20 milligrams as opposed to 240?” asked Jessica Bauman of the Fox Chase Cancer Center in Philadelphia. “The only way we know for sure is a randomized study between the low dose and the highest.”

And such trials are unlikely to occur. That means only poorer countries are going to host “this groundbreaking research,” said Ratain, who is also a cancer doctor at the University of Chicago Medical Center. “The Indians may have better immunotherapy than we do.”

Clinicians in Europe, where maximizing healthcare dollars has long been a priority, have taken a middle course, studying lower, but not ultralow, doses of immunotherapy.

Pulmonologist Michel van den Heuvel at Utrecht University is comparing the standard nivolumab dosage for lung cancer patients with one that is as much as 50% lower. He also considered giving the low doses half as frequently, but that would have raised ethical concerns and led to a more cumbersome research protocol, van den Heuvel said.

In the United States, researchers led by a group at the Dana-Farber Cancer Institute are taking another tack: who’ve done well on 27 weeks of pembrolizumab can stop taking it, rather than doing the additional six months per FDA protocol.

At the Veterans Health Administration, which has more leeway in testing money-saving medical procedures, doctors saved $1.5 million, about 10% of the previous pembrolizumab cost, over two years at three Veterans Affairs hospitals where they implemented a pilot program to dose patients less frequently, said Garth Strohbehn, a University of Michigan oncologist who also works at the VA.

It saves money and requires fewer visits for veterans who often live hours from the hospital, he said. “It also helps other patients because it opens more slots for infusion.”

Julie Gralow, ASCO’s executive vice president and chief medical officer, has made testing dosage a priority. She’s working with scientists in India on an ambitious clinical trial to compare standard nivolumab with four lower dosage levels.

She’s also leading an , supported by the federally funded Patient-Centered Outcomes Research Institute, to see whether breast cancer patients can be effectively started on lower doses of the drugs Kisqali and Ibrance, which, along with Verzenio, are in a class of key breast cancer drugs known as CDK4/6 inhibitors.

“We want to maintain efficacy. But we also want patients to have excellent quality of life,” she said. Especially for patients with advanced cancers, where absolute cure is unlikely, “it’s our job to make sure we’re not compromising quality of life with higher doses that are unnecessary.”

In 2021, at Ratain’s urging, Richard Pazdur, who led the FDA’s cancer drug division for many years, launched , intended to get companies to conduct dosing studies that are more precise before launching the large clinical trials they use to obtain FDA approval for new drugs.

An exterior shot of the Food and Drug Administration headquarters.
The FDA usually can’t compel a drugmaker to conduct dose-ranging studies after a drug is approved, and by law the agency does not influence drug pricing, says Emily Hilliard, a Department of Health and Human Services spokesperson. (Valerie Plesch/Bloomberg via Getty Images)

The agency issued for dosing studies in 2024 and has incorporated Project Optimus principles into the approval process for new cancer drugs, said Health and Human Services spokesperson Emily Hilliard. For example, two dosing regimens were evaluated for each of four lung cancer drugs (fam-trastuzumab deruxtecan, tarlatamab, zongertinib, sunvozertinib), and the lower dose with fewer toxicities was approved in each case, she said.

The FDA usually can’t compel a drugmaker to conduct dose-ranging studies after a drug’s approval, Hilliard noted. And by law the agency does not influence drug pricing, she said.

Future drugs should have better dosage information, Bauman said, but “newer drugs will probably be just as expensive at lower doses.”

Financial Toxicity

Verzenio’s side effects made Allegra Warfield feel so sick, tired, and bewildered, she said, that she considered suicide. She switched to Kisqali, which was tolerable until last September, when coverage of the drug stopped despite her monthly premium payment of $6,000. The cash price for Kisqali was at least $16,000 a month.

After fighting her insurer for three months, Warfield, 42, sold her house and belongings in Palm Desert, California, and moved with her fiancé to Durham, North Carolina, where they’d found what they considered a reasonable insurance plan.

The cancer, the side effects, and the unpayable bills were bad enough. The lack of good answers for her treatment made everything worse, she said.

“I was left to research these medications on Facebook and Reddit. The only people talking about the daily reality of these drugs were other patients,” she said. “But I wanted the studies. I wanted practical guidance.”

Stories like these launched a new life mission for Kelly Shanahan, who was an OB-GYN in South Lake Tahoe, California, until side effects from a breast cancer drug caused her to lose sensation in her hands. Unable to practice medicine, Shanahan became a patient advocate who works with a group called the Patient-Centered Dosing Initiative. In 2021, Shanahan developed profound fatigue (“worse than caring for a newborn baby while being on call in my solo practice”) within a few weeks of going on Ibrance. Lowering the dosage caused her worst symptoms to lift, she said.

After gathering countless anecdotes, her group has approached drug companies seeking data 鈥 so far with little success 鈥 that might indicate what percentage of patients have needed dosage reductions, and how they fare on lower doses.

“If going down two dose levels cuts effectiveness by 50%, patients need to know that while making decisions. If it doesn’t, they need to know that,” Shanahan said 鈥 even if it means “the companies won’t make as much money.”

Shanahan suggested the data could be found in clinical trials and postmarket studies. But if drug companies won’t provide the necessary studies, Manski said, governments should.

“The knowledge to be gained is a common good,” he said.

A photo of Chuck Mansku standing in his home.
Manski’s research, focused on how people deal with conditions of uncertainty, helped him decide whether to stay on a melanoma treatment after it caused severe side effects. (Taylor Glascock for 吃瓜不打烊)

Has an insurance company or pharmacy benefit manager refused to cover a drug an oncologist recommended or prescribed for you or a loved one because the cancer is unusual or rare and lacks clear guidelines? Click here to contact 吃瓜不打烊’ reporting team.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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