Agency Watch Archives - Ñî¹óåú´«Ã½Ò•îl Health News /series/agency-watch/ Ñî¹óåú´«Ã½Ò•îl Health News produces in-depth journalism on health issues and is a core operating program of KFF. Fri, 12 Jun 2026 15:24:32 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.5 /wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 Agency Watch Archives - Ñî¹óåú´«Ã½Ò•îl Health News /series/agency-watch/ 32 32 161476233 The Drip, Drip, Drip of Declining Coverage /podcast/what-the-health-450-aca-enrollment-drops-june-11-2026/ Thu, 11 Jun 2026 18:56:29 +0000 /?p=2249320&post_type=podcast&preview_id=2249320 The Host
Julie Rovner photo
Julie Rovner Ñî¹óåú´«Ã½Ò•îl Health News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of Ñî¹óåú´«Ã½Ò•îl Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

When Congress failed to extend the covid-era enhanced subsidies for the Affordable Care Act, many experts predicted millions of people would lose coverage because they would be unable to make payments toward the higher premiums. It has taken a few months, but that prediction seems to be coming true.

Meanwhile, controversy in the medical community about how — or whether  â€” to work with the Trump administration burst into the open at the annual meeting of the American Diabetes Association, as members who were handing out an editorial criticizing the administration’s cuts to biomedical research were evicted from the event, prompting a backlash.

This week’s panelists are Julie Rovner of Ñî¹óåú´«Ã½Ò•îl Health News, Lizzy Lawrence of Stat, Sandhya Raman of Bloomberg Law, and Lauren Weber of The Washington Post.

Panelists

Lizzy Lawrence photo
Lizzy Lawrence Stat
Sandhya Raman photo
Sandhya Raman Bloomberg Law
Lauren Weber photo
Lauren Weber The Washington Post

Among the takeaways from this week’s episode:

  • A from The Commonwealth Fund highlights enrollment declines in Affordable Care Act marketplaces, a trend experts predicted when Congress did not renew the enhanced ACA tax credits at the end of 2025. As consumers continue to struggle with rising costs for groceries, gas, and other expenses, individuals who lost that additional financial assistance to purchase health insurance may be facing higher premium costs and more out-of-pocket expenses.
  • Concerns over the difficulty of implementing the administration’s Medicaid work requirements, along with potential legal challenges, may mean the regulations could be delayed or even reversed. For example, doctor and patient groups contend that the requirement that physicians determine whether each individual can work the required 80 hours per month will create unintended consequences, such as paperwork and bureaucratic hassles, for patients and their doctors, rather than decrease fraud in the program.
  • On Capitol Hill, fewer days in session and more days on the midterm campaign trail, plus a lack of bipartisanship, likely mean that lawmakers may be less willing to find a path forward to strengthen the financial solvency of the Medicare and Social Security trust funds. The programs’ annual trustees’ report found that the two entitlement programs, which provide benefits to millions of people, will technically become insolvent in 2033. In recent years, lawmakers have been inclined to act only when facing an imminent deadline rather than taking action to avoid a future problem.
  • Leaders of the American Diabetes Association apologized for having security escort several doctors and researchers, including the editor-in-chief of the association’s flagship medical journal and a past president of the ADA, from the group’s annual research meeting for distributing a journal editorial criticizing the administration’s cuts to biomedical research. The incident highlighted how fearful some nonprofit leaders are of taking on the Trump administration.

Also this week, Rovner interviews KFF’s Tricia Neuman, who is retiring this month as a senior vice president and the executive director of the Program on Medicare Policy. 

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

Julie Rovner: Ñî¹óåú´«Ã½Ò•îl Health News’ “Anguished Parents. Doctors in Tears. Utah’s Long Measles Outbreak Takes a Toll,” by Amy Maxmen.

Sandhya Raman: CIDRAP’s “,” by Liz Szabo.

Lizzy Lawrence: The Chicago Tribune’s “,” by Christy Gutowski and Gregory Royal Pratt.

Lauren Weber: ProPublica’s “,” by Annie Waldman.

Also mentioned in this week’s podcast:

  • Politico’s “,” by Alice Miranda Ollstein and Robert King.
  • The New York Times’ “,” by Sheryl Gay Stolberg.
  • MedPage Today’s “,” by Kristina Fiore and Kristen Monaco.
  • Stat’s “,” by Anil Oza.
  • Fierce Healthcare’s “,” by Paige Minemyer.
  • Stat’s “, Federal Investigators Find,” by Casey Ross and Bob Herman.
Click to open the transcript Transcript: The Drip, Drip, Drip of Declining Coverage

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

Julie Rovner: Hello, from Ñî¹óåú´«Ã½Ò•îl Health News and WAMU Public Radio in Washington, D.C. Welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for Ñî¹óåú´«Ã½Ò•îl Health News. And, as always, I’m joined by some of the best and smartest health reporters covering Washington. We’re taping this week on Thursday, June 11, 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 Lauren Weber of The Washington Post. 

Lauren Weber: Hello, hello. 

Rovner: Lizzy Lawrence of Stat News. 

Lizzy Lawrence: Hi there. 

Rovner: And Sandhya Raman of Bloomberg Law. 

Sandhya Raman: Hello, everyone. 

Rovner: Later in this episode, we’ll have my interview with my colleague Tricia Neuman, who’s stepping down from her post here as KFF senior vice president and executive director of the Program on Medicare Policy, after a long and distinguished career shaping and analyzing the nation’s most prominent health insurance program. But first, this week’s news. I want to start this week with kind of a slow-motion news story that I want to make sure doesn’t get overlooked. It’s the continuing signals of declining health insurance coverage in the U.S. The Commonwealth Fund reports this week that state Affordable Care Act marketplaces are seeing the predicted shedding of policies by consumers who can’t make their premium payments. In Maryland, for example, 13% of enrollees fell off their plans between open enrollment and April of this year. That’s compared to just 3% last year. At the same time, more people are becoming underinsured because they, quote, “bought down” coverage from gold- or silver-level policies to bronze, leaving them with lower premiums but often multi-thousand-dollar deductibles. Meanwhile, three Democrat-led cities and a Democrat-led county have sued the Department of Health and Human Services over the regulation governing sign-ups for next year’s Affordable Care Act plans, charging that changes like allowing non-network plans and still higher out-of-pocket caps violate the terms of the ACA itself. So what is the outlook for the ACA, now that it’s June and it seems pretty clear that Congress is not going to extend those additional subsidies that expired at the end of last year? 

Weber: I’d say it’s not looking good, Julie, the way you just laid it out. I mean, I think the bottom line is this is a train wreck we’ve been watching in slow motion for many, many months, in the sense that you’re going to see a lot of people lose coverage. This is not exactly happening during a booming economic time, so you’ve got people cutting back because of high grocery bills, high etc., and then they see their health care go up tremendously, and they can’t cut it. And then they end up in plans that could leave them with massive bills at the end of the day. I do think this will lead to more of a groundswell of outcry, because it’s hitting folks â€” most affected, as The Commonwealth Fund pointed out, are not those in the lowest category; it’s the folks â€¦ where the subsidies ran out kind of in the mid-tier. And so you’re getting some more middle-class or lower-middle-class folks that are seeing some very, very steep health care bills. 

Rovner: Yeah, and as you point out, at the same time they’re seeing their gas bills go up, and their grocery bill’s up and basically prices for everything else. But I mean, I think there was a lot of like real sticker shock with the insurance, because you know, well, you know, gas is up $1 a gallon, and it hurts to go from paying, you know, $25 or $30 to fill your tank to $45 or $50, it’s not like saying, Hey, you’re going to go from paying $300 a month to paying $1,300 a month, which is what we saw from a lot of people.  

Meanwhile, both doctor and patient groups are up in arms over the new Medicaid work rules issued by the Trump administration last week. Rather than allowing states to automatically exempt from the work requirement people with certain conditions that would qualify them as, quote, “medically frail,” the rules stipulate that beginning in 2028 Medicaid recipients will have to prove at least twice a year not just that they have a condition, but that that condition prevents them from working. Patient groups say that will result in people who most need health insurance losing it and possibly getting sicker. Doctors, including the American Medical Association, which was conveniently having one of its meetings this week, worry that the burden of making that determination is going to fall on them, and that doctors aren’t trained for these things. They also point out that many chronic conditions fluctuate, leaving people sometimes able to maintain daily activities, like working, and sometimes not. Might this get changed due to the outcry? I think the administration, so far, seems to be saying that not doing it this way lets too many people off the hook. 

Lawrence: Yeah, I mean, I think that this is one of those things â€” again, it’s starting in January 2028. There’s sort of a year tail. I’m curious&²Ô²ú²õ±è;…&²Ô²ú²õ±è;there’s enough time that this could keep getting pushed down the road and possibly reversed, and you know, there’s also legal challenges. I know that my colleagues wrote about the Legal Action Center saying that CMS [the Centers for Medicare & Medicaid Services] is exceeding its authority here, so definitely we should be watching to see what happens with that. 

Rovner: Like many people, I was surprised at the rules as they came out. But I’m also a little bit taken aback at how broad the backlash is, particularly to this part â€” to the really, you’re going to require people with cancer to prove that they can’t meet work requirements? And how are they going to do that? And are people on Medicaid really going to be able to get doctors to, like, write them notes to say this person should be exempted? I mean, it just, it seems like a huge bureaucratic morass. 

Lawrence: Absolutely. 

Raman: Oh, I was just gonna say, from all sides, you know, if you are on Medicaid, and maybe there’s the burden of just transportation to get to that appointment, and, you know, having the time and the energy if you have a chronic illness, but then also we’ve heard time and time again how workforce issues, doctors are already overworked and don’t have the time to do so many of the things they already have to do. This is another burden for them to be able to have to eventually do this with the limited time they do have. 

Rovner: Lauren. 

Weber: It also seems incredibly subjective. I mean, I know they said that they’re trying to get to it through the codes, but, as  [Miranda Ollstein], I mean, how does one even really evaluate that? And people can work in different stretches. Also, with the flexibility many people have now to work from home, there is an opportunity for some folks maybe to be able to work, depending on what their job is. It’s just a minefield of unintended consequences, probably. So we’ll see how that goes. 

Rovner: I’ll say, this has a long way to play out. Well, along similar lines, there are also concerns that the new crackdown on fraud that’s being spearheaded by the Trump administration is threatening people’s coverage as well. In Ohio, lawmakers rushing to address home healthcare fraud tried to speed through a bill that included a provision to ban family members from qualifying as care providers for people with disabilities. That was ultimately removed from the bill when it was pointed out that such a change could result in more people having to be institutionalized, costing the state far, far more than paying family members to help people. I’m sure we’re going to see similar efforts to crack down on fraud in more states, because the federal government is threatening to take away money. Although, as administration officials continue to claim widespread fraud throughout the home health and hospice care systems, I imagine that we’re going to see more give-and-take on this one too. 

Weber: It seems like another example of shoot first, look later. I mean, in general, that clearly would have been a very bad provision to keep in the bill. If you know anything about home healthcare, you know that most of the time it is a family member giving up much of their time and effort to keep a loved one in the home. And so wild that that was even in there to start with. I think in general this goes to this long-running conversation around fraud. Again, there is a lot of healthcare fraud. I think we should all be very clear. There’s a lot of fraud that needs to be addressed. But you can say a lot of things about fraud obliquely, but then when you get to the brass tacks, you got to be careful about what you’re doing. So this is just another example of that, and how we’ve seen the Trump administration move on this that may or may not end up in problematic outcomes. 

Rovner: Yeah, Dr. [Mehmet] Oz [the CMS administrator] keeps talking about, you know, family members who are helping carry in groceries or driving people to doctors’ appointments. That’s not what these paid caregivers are doing. These are people who are basically unable to work because they need to be with this person that they are caring for 24/7, 365. I mean, there’s a lot of work involved here that’s way more than I think a lot of people who are in Washington or, I guess in this case, in Baltimore writing these rules sometimes realize. And I think that was brought home rather vividly in Ohio when they tried to do this and then were suddenly given the facts on the ground and said, Oops, maybe we should try this another way. But Lauren, you’re right, it’s not to say that there isn’t plenty of fraud to be fought. 

Well, moving on, this week we also got the annual report from the trustees of Social Security and Medicare. Not much has changed from last year as far as when the trust funds that support the programs will technically become insolvent. For Medicare’s Hospital Insurance Trust Fund, it’s still 2033, but a quarter earlier â€” so three months’ difference. Still, that’s only seven years away. In earlier times, I’ve been doing this a long time, seven years to insolvency would set off alarm bells in Congress and the administration, and would prompt action, or at least attempted action. Are we yawning our way into a very large financial crisis impacting one of the most popular health programs in the country? 

Raman: I think it’s a combination of things. A) I feel like every year we are more loose with deadlines. We address them in Congress closer and closer to them. So something that several years ago would be a big conversation ahead of time, we push it closer. And I think also the appetite in Congress to get things done right now is low, to find bipartisan agreement. And so getting something done on this would be quite difficult right now with all the other competing priorities there. 

Rovner: I think they were floating the idea of another budget reconciliation bill â€” “Reconciliation 3.0,” I guess they were calling it. And my reading of the consensus is that it is not happening. Whether there’s not enough appetite or not enough votes, or combination of those two, it doesn’t look like Congress is ready to take on something as big as Let’s make sure that Social Security and Medicare are there for the retiring baby boomers and Gen Xers, who are going to shortly follow

Raman: Especially in a midterms year where they’re not in as much as they might be at other times. 

Rovner: Yes, that’s right. They are definitely in and out. All right. Well, we’re going to take a quick break. We’ll be right back. 

Meanwhile, over at the Department of Health and Human Services, our podcast colleague  of Secretary RFK Jr. over last weekend, saying he has, quote, “shown little interest in managing the details of work in his department,” and that he, quote, “is single-mindedly focused on his top priorities, including food recommendations and pesticide exposures, and hunting for evidence to support his long-held beliefs that vaccines are harmful.” And, indeed, the big press event Kennedy had this week was to tout his effort to get medical schools to teach their students more about nutrition, something most medical schools had already been doing, I hasten to add. And, of course, there are still no confirmed, and in some cases even nominated, heads for some major HHS agencies, including the FDA, the Centers for Disease Control and Prevention, and the Administration for Strategic Preparedness and Response, which oversees things like the Ebola outbreaks. I would note that Kennedy responded to Sheryl’s story just Wednesday â€” so, like, five days after it appeared, basically saying he’s doing much more than she realizes. What are we to make of this whole thing? 

Weber: I would encourage everyone to read Kennedy’s response, and then I would also be curious if Kennedy would like to show me where his public calendars are that he talks about in his tweet, because I would love to look at them, and I’m sure Sheryl would too. But I thought Sheryl’s framing of the story was very clear-headed and accurate. I mean, look, the bottom line is the secretary has not been publicly engaged on the Ebola response at all, which is somewhat surprising. He does not have any of these people in place. I mean, take your pick. I mean, it’s all these agencies are rudderless currently, and he has very clearly expressed serious interest in his pet projects, but has not been as engaged, according to Sheryl and all of our reporting, in some of these other issues. And I think it’s a fair look at what that means for his legacy going forward, and what that will mean in the months to come. 

Rovner: Right. And you know what’s going on actually in health right now. Over at FDA, they’ve apparently begun the safety study of mifepristone, the abortion pill, that the administration has been promising anti-abortion groups for more than a year now. But it appears that study won’t be ready before the midterms, which is actually what Republican strategists had advised, so it wouldn’t further inflame the campaign season. This is up your alley. Is this FDA acting Commissioner Kyle Diamantas’ effort to win the permanent job, or is this the White House still trying to kind of placate both sides to the debate for as long as it can possibly get away with? 

Lawrence: Yeah, so Kyle Diamantas has said to many different people that he doesn’t want the job, including to me via an HHS media spokesperson, so I tend to believe him. Although it seems likely that he will be in this role for a while, because of how many leadership positions the HHS needs to fill, and how few days there are of Congress. With the mifepristone study, it seems like, yeah, I mean, I think the timing is not lost on anyone. This seems to have worked out politically pretty well for the Trump administration, where it’s a six-month study, they can kind of see what happens in the midterms, and see, because you know, [Sen. Bill] Cassidy, this is a huge issue for him. Any FDA commissioner they’re going to put in front of him, he’s going to be hammering on mifepristone, pro-life issues. So, as long as they can pursue the strategy that they have been pursuing, of sort of just waiting and seeing and saying that they’re working and pushing it out. I think that’s what they’re going to keep doing. 

Rovner: I guess there’s this continuing promise that the administration will try to sort of rein back in on the mail-order abortion drugs, which is, I guess, what’s really&²Ô²ú²õ±è;…&²Ô²ú²õ±è;I don’t think anybody thinks that they’re going to try to revoke the approval of mifepristone. I think what the anti-abortion folks are hoping now is that they’re going to revoke the mail-order ability of people to get mifepristone, which, of course, we’ve seen people using in abortion-ban states to basically evade those abortion bans. It’s obviously a big deal for both sides that the administration would like to keep under wraps as long as it possibly can. Is that a fair assessment? 

Lawrence: Absolutely. Yeah, and I mean, there’s no safety reason to do that, so&²Ô²ú²õ±è;…&²Ô²ú²õ±è;there will be huge blowback from pro-choice advocates, but also within the agency, I would imagine, this would be a huge turning point. 

Rovner: Well, that’s the FDA. Then there is the National Institutes of Health, which actually does have a Senate-confirmed leader, Jay Bhattacharya, although he’s currently doing double duty, also overseeing CDC. But apparently things aren’t so great over at NIH. Last June, 300 NIH staffers published something they called the “Bethesda Declaration,” named for the location of NIH’s main campus, in which they said that the new administration’s policies were undermining the agency’s mission, wasting public resources, and harming the health of Americans and people across the globe. Now, one year later, about 70 NIH’ers have , including one we talked about last week that would give political appointees far more say about who gets research grants and how those grantees can behave. And another policy that would strip civil service protections from many senior employees, so they could more easily be fired for not going along with the administration’s political priorities. I guess this is this week’s trend. What seemed kind of shocking last year is now kind of status quo, right? I saw very little attention to any of these stories that are enormous changes from how the nation’s science agencies have operated over Republican and Democratic administrations in the 40 years I’ve been doing this. 

Raman: I think that one thing we’ve really seen is just how much some of these science-oriented groups have mobilized over some of these issues, just, you know, kind of stating that researchers that have been doing this kind of work for 20, 30, 40 years, that this is so out of the realm of anything they’ve seen before. This would, you know, jeopardize their research and their stability and just the way that they have been doing work for so many years. And I think even with both of the rules that we, that you mentioned, that has been something that has been really amplified by them. But I think it has been, given the number of other things happening, this space not really trickled down to the broader set of folks to really, you know, tap into. We have Ebola, we have so many other things that people, I think, are a little bit more top of mind, even though this is a huge change that under normal circumstances would have more attention paid to it. 

Rovner: Yeah, I think that’s fair. This is sort of the continuing shock and awe that we see of the administration trying to make all of the changes that it wants at once, so nobody gets a chance to focus on any of them. In sort of what we would consider normal times, any one of these would be the overwhelming story of the day. 

Well, all of this brings us to what I consider the wildest story of the week. There was plenty of drama at, of all places, the annual research meeting of the American Diabetes Association in New Orleans. And props, by the way, to the website MedPage Today for breaking this within hours of its happening last Friday. I will just read the original headline: “.” So the keynote address to open the conference was supposed to be given by NIH Director Bhattacharya, but he dropped out at the last minute. While the audience was inside listening to a talk instead from NIH senior adviser Richard Wojcik, five doctors and researchers, including the editor-in-chief of the association’s flagship medical journal, as well as a past president of the ADA, were outside handing out a thousand copies of an editorial from the journal criticizing the administration’s cuts to biomedical research. At the direction of the organization, those protesters â€” can you even really call them protesters? â€” were escorted out by security and told they could not return to the conference. And from there the backlash began. Sixty-five hundred people signed a letter of complaint to the association. Two top officials resigned, and, finally, five days later, the CEO apologized to the “editorial hander-outers” via a video. But I want to pose a larger question. This was a real-world playing out of the tensions that we were just talking about are boiling within science. Should they try to work with this administration, or should they try to fight it? It would appear that the answer to that is kind of still up for grabs. Isn’t that what this demonstrates? 

Lawrence: Yeah, I mean, I think that it’s a clear tension between what the members of these major medical organizations want, which, like you said, 6,500 people signed that letter. There is a real appetite to try to fight back and push back, but there’s a real fear among leadership to do anything.&²Ô²ú²õ±è;…&²Ô²ú²õ±è;This was just mind-boggling, and my colleague Liz wrote about the backlash, and their decision to escalate the situation in this way brought so much more attention than, you know, five people handing out a journal editorial would initially. So fear can lead people to do things that ultimately don’t serve their purposes. 

Rovner: Yeah, I left out the part about the ADA leaders sort of over the weekend trying to justify the expulsion of the “editorial hander-outers,” as I will call them, by saying, Oh, it could affect our 501(c)(3) status, or they were violating the code of conduct, for, you know, for the meeting. But not only did those things not fly, they did seem to make things worse. Lauren, you wanted to add something. 

Weber: I just want to say that’s probably the most press an ADA meeting has ever gotten in its entire life. So, I mean, if they&²Ô²ú²õ±è;…&²Ô²ú²õ±è;

Rovner: Absolutely. 

Weber: At the end of the day, I mean, these, as you point out, Lizzy, I mean, this editorial guy read a lot more and got a lot more attention because of it, so we’ll see what happens from here. 

Rovner: Yeah, but I think it’s sort of a cautionary tale for leaders of these organizations who â€” do we want to fight or do we want to try to get along, and maybe you ought to ask your members first? We’ll see if this sort of comes out at other meetings. Now it’s the beginning of the summer, it’s when a lot of these scientific meetings happen. I’ll be watching more of them a little more closely. 

Well, finally, this week, it’s June, and that means it’s the season for working on the spending bills on Capitol Hill. This week we actually got a lengthy public markup of the bill that funds the majority of the Department of Health and Human Services. A reminder: FDA is funded in the Agriculture bill because food. Sandhya, how is the Labor-HHS bill shaping up? It looks like Congress isn’t going to go along with the big cuts proposed by the Trump administration, but that’s not saying there won’t be fights about funding, right? 

Raman: Yeah, so I would say you’re right. The big takeaway from this House markup is that it kind of bucked some of the White House’s suggestions on, you know, what to do with funding for this. They funded $111 billion for HHS, if this is made into law â€” so a much smaller cut&²Ô²ú²õ±è;…&²Ô²ú²õ±è;of what the White House was proposing. That included things like $100 million more for NIH, which has been something in the past worried about cuts; and funded some things that I think we’re interesting, you know, CDC’s office for smoking [Office on Smoking and Health], something that had been subject to the DOGE [Department of Government Efficiency] cuts last year; , something else that&²Ô²ú²õ±è;…&²Ô²ú²õ±è; 

Rovner: Yeah, I want to address that separate, I want to get to the amendments in a second. But I mean, just sort of in terms of funding, I mean, and we should point out that $100 million for NIH â€” NIH has a budget of like $40-some billion, so yeah, it’s not a big increase. It’s a rounding error increase, but it’s not a cut. 

Raman: Yes, not a cut. So the next step for this would be the House floor, but we might get kind of stalled there just because the issue on the Senate side is they’ve not agreed to top-line numbers for funding yet, and they need those in order to shape out the individual bills. So, without that, we’re kind of in a standstill, and it might be a little bit more like we’ve seen in some of the years past, where the House goes through, they make a bill, they vote on the bill, and then the Senate doesn’t publicly do theirs, but then we get to an agreement a little further down the line. But what Sen. Susan Collins, who heads the Senate Appropriations Committee, has been saying is that, you know, she wants more for NIH than what’s been presented here. But without those top lines, we don’t know. So, we’ll see, you know, in years past, we’ve really just, the funding year deadline has been pushed and pushed and pushed, so&²Ô²ú²õ±è;…&²Ô²ú²õ±è;

Rovner: Into the next funding year. Often. 

Raman: Yes, and I think, especially like I said, when it’s a midterms year, they’re going to be in far less than normal. It’s not clear when there’s going to be the appetite to get all of that done. 

Rovner: So, often these spending bills, when they move â€” and of course they haven’t moved when they were supposed to for the last however many years â€” but it does sometimes give a chance for lawmakers to express frustration or doubt or simply disapproval with things that the administration is doing. And one of the things that they seem to be expressing disapproval is the administration’s plan to use prior authorization, which is very controversial, in Medicare, and AI â€” in fact, an AI prior authorization in Medicare, and on a bipartisan basis. They voted to tell the administration, No, please don’t do this. I’m wondering, you know, it may not become law on this bill, but this does suggest that there is bipartisan concern in Congress about these efforts on behalf of Medicare, right? 

Weber: Well, I think this goes back to our Medicare insolvency conversation earlier. Who votes? It’s the people that are on Medicare. So, and how unpopular would it be if they were to be limited in what they can access for their health care services? So, I think at the end of the day, the reason that’s bipartisan is these lawmakers know who’s keeping them in office, and prior authorization has a very bad name. I mean, it’s very interesting, because CMS has said that this will help cut down costs, but also has, out of the other side of its mouth, in hearings and so on, Oz has decried insurers using prior authorization. So there’s a lot of “for thee but not for me” vibes going on here. But at the end of the day, it doesn’t seem like this will advance because of the bipartisan opposition. 

Rovner: And of course, Lizzy, your colleagues at Stat have talked about, you know, private companies using enhanced prior authorization, which nobody seems to think is a great idea, and now we have Medicare proposing it. 

Lawrence: Yeah, I was going to say prior authorization, already unpopular, add AI to the mix. I mean, there’s not&²Ô²ú²õ±è;…&²Ô²ú²õ±è;yeah, Bob and Casey, my colleagues, , but just, in general, there is not a lot of goodwill for the AI industry with data centers and all kinds of unpopular initiatives. So, yeah, it makes sense we’re seeing strong bipartisan disapproval of this.  

Rovner: If it doesn’t show up in this bill, I wouldn’t be surprised to see it show up in some other bill that’s more likely to make it to the finish line. All right, that is this week’s news. Now we’ll play my interview with KFF’s Tricia Neuman, and then we’ll come back and do our extra credits. 

I am pleased to welcome back to the podcast my colleague and friend Tricia Neuman, who is retiring as KFF senior vice president and executive director of the Program on Medicare Policy, after a long and distinguished career here and on Capitol Hill, shaping, analyzing, and explaining Medicare policy to people like me, as well as to the nation’s decision-makers. Tricia, thanks for taking some time as you wrap things up. 

Tricia Neuman: Julie, thank you for having me. 

Rovner: So, let’s go back to the beginning, if you can remember that. What got you interested in pursuing Medicare as your health policy specialty? 

Neuman: You know, I didn’t think about it as Medicare, but I thought about it in the context of my family. I was&²Ô²ú²õ±è;…&²Ô²ú²õ±è;I remember watching my grandfather and seeing him struggle. He had Alzheimer’s, and he was trying to tie his shoe, and he couldn’t remember, and I somehow got interested in aging. And I was interested in government, and so I came to Washington ready to do policy, and I ended up at the Senate Aging Committee, which was perfect. And I got into Medicare because I had an older colleague who said, Look, you got to choose a specialty; you can do Social Security, pensions, retirement income, or you can do health and long-term care. Figure it out and go there. And so I did. 

Rovner: Yeah, and like me, you can stay forever if you want to. 

Neuman: And I seem to have stayed forever. 

Rovner: So, what’s the biggest misperception about Medicare as it exists today? People look at Medicare, and it’s like a chameleon. They see all these different things. 

Neuman: Boy, I could give you a few answers to that. I mean, one answer is people think Medicare is going broke. Medicare cannot go broke, but Medicare faces financing challenges. Interesting, you know, we talk about that today. Today’s the day that the “Medicare Trustees Report” came out, and actually, there wasn’t much of a change, a notable change. It was a slight tweak, but it’s still 2033 for the year that Medicare will be insolvent. What that means is that there won’t be enough money to pay all benefits, but it doesn’t mean the program is going broke. To me what it means is it’s time to think about how to finance care for an aging population, and what are the policy options that can do that. It’s generally reducing spending or finding new revenues, but it’s easier to do it in advance than&²Ô²ú²õ±è;…&²Ô²ú²õ±è;to wait until we’re at the precipice of a crisis. So that’s really what it signals to me. But it cannot go broke. 

Rovner: Over the years, Congress has dealt with these periodic, you know, predictions about Medicare insolvency in various ways that they have, you know, sometimes they’ve actually acted when insolvency has seemed relatively near, and sometimes they have acted to make insolvency closer. This Congress doesn’t seem to be as plugged into Medicare as many previous ones. Is that a fair way to put it? 

Neuman: I think it’s fair. Julie, when you and I were working on the Hill, as your beat at the time at the Ways and Means Committee, Medicare was front and center. Medicare was part of budget conversations. Medicare was part of legislation that we dealt with every year. And that meant every year members of Congress worked hard to tweak the program, achieve some savings, also make some improvements. But Medicare was the big story. Really, of late, really, since the ACA, the ACA has been the story, Medicaid has been the story, but Medicare, oddly, has been sort of a stepchild off to the side. 

Rovner: I like to describe Medicare as one of the biggest paradoxes in health policy. Simultaneously, it’s incredibly popular â€” I mean, one of the most popular programs ever created by the federal government â€” and yet it’s actually pretty lacking as a really comprehensive health coverage. I think if people actually had, quote-unquote, “Medicare for All” the way we have Medicare today, they wouldn’t be very happy with it. 

Neuman: I think that’s right. I mean, people I know on Medicare, and soon that will be me, are very happy with the program. They like the fact that&²Ô²ú²õ±è;…&²Ô²ú²õ±è;it’s reliable, they can count on it. There are some issues between people in traditional Medicare and Medicare Advantage. But it’s, you know, people are pretty happy. At the same time, there’s relatively high cost sharing, premiums are going up, and Medicare doesn’t cover some of the most expensive things for people as they grow older, such as dental, which is a big one, hearing aids, vision, which is to a lesser extent not quite as expensive. And the big one that nobody really wants to address is long-term services and support, home care for people who need help at home, assisted living, nursing home coverage, all of that is super expensive, and Medicare really doesn’t cover it. And that is a big surprise to families when all of a sudden they have a family member who needs this help and Medicare won’t pay for it. 

Rovner: Yeah, I feel like about every five years, another generation of health reporters discovers, Hey, Medicare doesn’t cover long-term care. I never knew that

Neuman: And a lot of time they’re discovering it because a family member of theirs needs long-term care. 

Rovner: So, I know you’re retiring, but I also know that you’re going to continue to stay engaged, because I know you. What do you think is the biggest challenge that you hope that lawmakers will address in Medicare in the next five, 10 years? 

Neuman: Oh, I have a wish list. I do hope that they’ll continue to put affordability at the top of the list. That means looking at these expenses that are not covered by Medicare, keeping an eye on premiums. Right now, 7 million people on Medicare pay more than 10% of their income on Part B premiums. That’s a big deal. So, keeping an eye on affordability is really important. I also think there should be some attention to simplification. Medicare used to be this easy program, you turned 65, you got on Medicare. It’s not so easy anymore. The average Medicare beneficiary has a choice of dozens of plans, the Medicare Advantage, prescription drugs. It’s too complicated. And it’s not like it’s a one-and-done decision when you turn 65. You really need to think about this each year, and I think that’s a tall order. And simplifying the program would make it a lot easier for our aging population. 

Rovner: Well, you may be retiring, but I’m still going to call on you as my Medicare expert. 

Neuman: Always. 

Rovner: Tricia Neuman, thank you so much. 

Neuman: Thank you, Julie. 

Rovner: OK, we’re back. Now 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. Lauren, you snagged this week’s most popular story. Start us off. 

Weber: Hats off to Annie Waldman’s “,” which published in ProPublica. I was green with envy upon reading this story. It’s not only beautifully crafted, but it’s just an incredibly incisive takedown, really, of this raw milk farm and all of the people it’s harmed, and how the government has really not stepped in. It hits at so many themes in this MAHA [Make America Healthy Again] moment â€” of free speech and, you know, free medical access, but also the questions of: Do consumers know the amount of risks that they’re taking on? And what is regulators’ role when you have this farm led by this evangelist for raw milk that has been at least linked to over 220 people’s illnesses, some of which are very severe, and continues to produce not only raw milk but milk that it puts into raw cheese that makes people sick. And very sick. This is not just, like, slightly sick, I mean it’s likely that this has potentially sickened way more than the numbers that are captured. It’s a very well-done piece. I could not recommend reading it more. 

Rovner: Lizzy. 

Lawrence: My piece that I chose for this week was from the Chicago Tribune: “,” by Christy Gutowski and Gregory Royal Pratt. Kind of similar to what Lauren was talking about, this is a story about regulatory failure, but in this case with a plastic surgeon operating in Chicago who has killed at least eight women during procedures like tummy tucks and liposuction&²Ô²ú²õ±è;…&²Ô²ú²õ±è;all women of color. He’s operating in a predominantly Latino neighborhood. And Chicago authorities started looking into him to try to revoke his license in 2020, but more than five years later nothing has happened. This was a truly horrifying story, and just major kudos to the reporters, for really, you know, they tracked down all of these women’s families. And in one case there was a complaint that the surgeon, you know, not only allegations that he killed people, but that he had carved his initials into someone. So it’s a really insane piece that I think, yeah, everyone should read. 

Rovner: Yeah. Sandhya. 

Raman: So I picked the story “, and it’s in CIDRAP from Liz Szabo. And this piece is part of a larger series for the 20th anniversary of the HPV [human papillomavirus] vaccine. But Liz just does a beautiful job juxtaposing, you know, one sister who battles and eventually, you know, lost a heartbreaking battle with cervical cancer, and how her sister was in the first batch of folks to get the HPV vaccine 20 years ago. And then, you know, the sister is talking about the importance of wanting her sons to get it that are pretty young. And it just really does a good job of showing the trajectory of how effective the vaccine has been in reducing cervical cancer since its rollout. 

Rovner: Yeah, this is one of the great medical miracles that’s suddenly become controversial again. It’s really good. You should read the whole series. I will post links to it. My extra credit this week is from my Ñî¹óåú´«Ã½Ò•îl Health News colleague Amy Maxman. It’s called “Anguished Parents. Doctors in Tears. Utah’s Long Measles Outbreak Takes a Toll.” Amy went to Utah and found that measles is taking a stronghold there for a whole variety of reasons, including the strength of the supplement industry that teaches residents to suspect mainstream medicine. It’s a really good read that shows the challenges public health still faces in things that we thought we had overcome years, if not decades, ago, like how to prevent childhood diseases like measles. 

All right, that is this week’s show. Thanks to our editor this week, Mary Agnes Carey, and our producer-engineer, Francis Ying. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcasts — 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? Sandhya? 

Raman: I’m at  and on  @SandhyaWrites. 

Rovner: Lauren. 

Weber: I’m on  and on  as @LaurenWeberHP. The HP is for health policy. 

Rovner: Lizzy. 

Lawrence: I’m on  as @LizzyLaw_ and on  and  (Lizzy Lawrence). 

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

Credits

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Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This <a target="_blank" href="/podcast/what-the-health-450-aca-enrollment-drops-june-11-2026/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Trump Bought Tobacco Stocks and Raked In Industry Donations as FDA Eased Standards /courts/fda-tobacco-vape-vaping-ecigarette-smoking-trump-investments-maga-donations/ Thu, 11 Jun 2026 09:00:00 +0000 /?p=2249297 President Donald Trump, who once declared he had “saved” flavored vapes, grew his stock holdings this year to as much as $1.64 million in tobacco giant Philip Morris.

He also had holdings in Altria and a third leading tobacco company, though an apparent discrepancy in his disclosures clouds the extent of his investments. In 2025, tobacco interests donated $6 million to MAGA Inc., a super PAC that supports the president, and Trump’s inauguration. And, on April 30, a week before FDA guidance that provided a critical boost to the industry, Reynolds American dropped an additional $5 million into the super PAC’s coffers.

The stock trades and political contributions occurred as the Trump administration pursued a broadly pro-tobacco agenda: Its FDA piloted a fast-track program to approve nicotine pouches. It unveiled a program to allow vapes on the market more rapidly, despite resistance from career civil servants and leadership, culminating this year in guidance waving through flavored electronic cigarettes. It cut public health employees focusing on anti-tobacco policy. And it broadened enforcement against illicit e-cigarettes, competitors to the big industry players with a financial relationship to Trump.

It amounts to the most pro-tobacco, pro-nicotine presidency in some time — a remarkable policy given the tens of millions of deaths cigarettes caused during the 20th century. Even in recent years, anti-smoking groups say a half-million Americans a year die from cigarettes. Industry advocates say the toll helps justify a shift to e-cigarettes and nicotine pouches, which they say are less harmful. However, public health advocates say these products carry their own risks, such as addiction.

Lawmakers and public health leaders have criticized the recent FDA guidance and approvals as a “” that ignored scientific evidence to deliver what investment analysts have described as “very positive” steps for influential tobacco companies.

The scale of the money is “unprecedented and problematic,” said Brian King, who was pushed out of the FDA’s tobacco office last April and now works as an executive at the Campaign for Tobacco-Free Kids. He fears that steering public policy toward tobacco — still addictive and harmful to health — puts Americans at risk.

“It’s a gift on a platter with a side of public health malpractice,” he said.

The White House did not comment on the president’s investments or industry donations to MAGA Inc. Spokesperson Kush Desai said, “The only guiding factor behind the Trump administration’s health policymaking is Gold Standard Science. FDA’s regulatory treatment of nicotine pouches and vapes is rooted in recent evidence that has found that these products can help adults quit smoking.”

Philip Morris disputed any connection. Company representatives “regularly attend events and forums where we share our commitment to improving public health in the United States,” spokesperson Samuel Dashiell said, “starting with providing better options to America’s 45 million legal-age nicotine consumers.”

“We do not comment on individual engagements or on the personal financial matters or disclosures of public officials,” he added.

Other tobacco companies whose stock Trump has bought and sold during his second term or that donated to groups aligned with Trump — Juul, Reynolds American, and Altria — did not respond to requests for comment.

The financial stakes are huge. Investment analysts at Goldman Sachs say the newer products, touted as safer, make more money per sale than traditional cigarettes. Philip Morris expects Zyn pouches, for example, to make eight times the gross profits of its cigarettes, Goldman Sachs analysts said in March 2025.

When he ran for his second term, Trump promoted himself as a pro-tobacco candidate, posting that he had and that President Joe Biden and Democratic nominee Kamala Harris “want everything banned.”

Since late 2023, MAGA Inc. has received over $20 million in funding from the industry, federal campaign records show. Trump’s inauguration garnered nearly $4 million more. His ballroom project donations of an unknown amount from Altria and Reynolds American.

Recent Trump administration actions show he’s followed through with his campaign rhetoric. In May, the FDA released that allows manufacturers to market their vapes and nicotine pouches while awaiting agency approval. It also approved several vaping products. The month before, the Vapor Technology Association, which donated $1.25 million to Trump’s inauguration, it had met with the White House to discuss its concerns.

By that point, Trump had gone on a stock-purchasing spree. In March he made eight separate purchases of Philip Morris or Altria stock, worth as much as $275,000, according to a disclosure form that bears Trump’s signature.

It is difficult to be precise about Trump’s tobacco investments, because the financial disclosures show only ranges of investment amounts. They also have an apparent discrepancy. In January, the president sold $500,000 to $1,000,000 in Altria stock. But that’s confusing because previous disclosures didn’t show Trump held that much equity in Altria. The White House declined to comment on the matter.

The FDA’s May guidance and approvals drew condemnation from public health leaders, who worry that the agency is allowing products with flavors especially appealing to young people. “After years of recognizing the dangers flavored e-cigarettes pose to youth, it is deeply troubling to see FDA ignore the scientific evidence and reverse course,” American Lung Association CEO Harold Wimmer said .

“I think it’s blatantly illegal, both on its merits and also procedurally, because it was issued as a final guidance without even giving the public an opportunity to comment on it,” said Mitch Zeller, a former head of the FDA’s tobacco center.

A group of Democratic senators called the decision a “a free pass to addictive and harmful vapes” in letters to Reynolds American and Altria. It would lead to “a lucrative payday after years of unsuccessful legislative and regulatory efforts to weaken federal tobacco oversight,” they concluded.

Members of Congress are barred from insider trading, and many legislators would like to see trading of individual company stocks banned for all members. In the wake of Trump’s most recent financial disclosures, with revelations that he often traded in companies manufacturing GLP-1 drugs before his administration steered policy in a favorable direction, some members are calling for the president, too, to be barred from stock trading.

Trump’s tobacco policies have garnered favorable grades from investors. At Goldman Sachs, bankers described the May FDA guidance as “very positive” for Philip Morris and “a significant step in the FDA’s positioning toward enforcement and acceptance of nic pouch (as well as e-vapor) innovation generally.”

And Barclays analysts said the FDA’s guidance was good news for Juul, a leading vape producer. (In November, the company contributed $1 million to MAGA Inc.)

FDA resistance to speeding up approvals for these products reportedly contributed to the ouster of agency commissioner Marty Makary, who did not respond to requests for comment. According to and , the White House repeatedly intervened in the approval process.

“I served during the entire first Trump administration as center director, and there was never any pressure from any political appointee at FDA, at HHS, or the White House when it came to application review,” Zeller said.

But recent changes in FDA policy can be traced to the access tobacco firms have had to the White House, he said.

By and large, the Trump administration has delivered on industry priorities. Soon after the inauguration — which tobacco companies had donated heavily to — the administration withdrew a Biden-era proposal to ban menthol cigarettes. The administration has eased the path for nicotine pouches like Zyn, which were first approved under Biden. Investment analysts viewed government crackdowns on illicit e-cigarettes positively: Barclays wrote in January that “company commentary on enforcement has also been upbeat, suggesting that the tide could begin to turn in favour of the legal players in the market.”

What’s more, the Trump administration’s government layoffs have decimated public health’s tobacco control offices. The work of the Centers for Disease Control and Prevention’s office of smoking has been sharply curtailed; its flagship “Tips From Former Smokers” campaign, which seeks to persuade viewers not to smoke, has been off the air for months, King said.

“It’s not difficult to see that less dollars invested in prevention and control is going to lead to more tobacco product use and tobacco-related disease,” King said, especially given the government’s decades-long success in reducing cigarette usage.

The shift is particularly ironic given the administration’s focus — through its Make America Healthy Again slogan — on chronic disease. “Attempting to combat chronic disease without tobacco control is like attempting a triathlon without a bicycle: You are destined for failure before leaving the starting line,” King concluded.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This <a target="_blank" href="/courts/fda-tobacco-vape-vaping-ecigarette-smoking-trump-investments-maga-donations/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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MAHA’s Treatments for Autism: Camel’s Milk, Stem Cell Injections — And Spelling Therapy /health-industry/autism-controversial-treatment-spelling-maha-telepathy/ Mon, 08 Jun 2026 09:00:00 +0000 /?p=2240522 Elizabeth Bonker is a silent woman with a loud mission. She wants government agencies to cover the costs of training people with autism in a form of communication called assisted spelling. One problem: Leading professional organizations don’t believe it works.

“All nonspeakers above the age of 5 should be given the opportunity,” typed Bonker, who is 28 and cannot talk. Her mother, Virginia Breen, held a wireless keyboard for her. They sat on a hotel patio before an April 27 meeting with a senior aide to Health and Human Services Secretary Robert F. Kennedy Jr.

“We are misunderstood and underestimated,” Bonker typed, occasionally humming or lightly groaning as she considered where to place a slender forefinger on the keyboard.

Assisted spelling is used to help nonverbal people communicate by pointing to letters on boards or using keyboards with physical help from another person.

Supporters say assisted spelling has improved the lives of thousands of people with autism, such as Bonker, and they have powerful allies. Kennedy appointed Bonker and another autistic “speller,” as they call themselves, to a 20-member autism panel made up largely of parents with children whose autism they attribute to vaccinations.

At the reconfigured panel’s first public session on April 28, three other members said their nonspeaking adult children were learning to communicate through spelling. The panel issued a resolution with  stating that “robust” communications programs are essential for autistic people. Bonker has urged the Department of Health and Human Services to support training in assisted spelling for those who want it.

But leading for , as well as those representing and , that these methods — premised on the idea that people with autism have the normal range of cognitive powers but are imprisoned in malfunctioning bodies — are flawed or fraudulent.

Other, validated methods enable nonspeakers to communicate through digital and analog pictures and letter boards. But assisted spelling isn’t autonomous communication, critics say: Consciously or not, the board holder may be influencing or responsible for the typed or pointed-at words — as with a Ouija board.

For many parents in Kennedy’s Make America Healthy Again community, the spelling controversy is angrily ringing the same bells as the notion that vaccines cause autism — which they refuse to consider debunked. As some people see it: Established medicine damaged them with vaccines and now refuses to accept a helpful treatment.

People with autism are “trapped in bodies that have betrayed them because the medical establishment has betrayed them,” said Louis Conte, who has a child with autism, in a of a Kennedy-allied MAHA publication.

By limiting access to spelling, “you are not just limiting expression, you are erasing identity,” said Katie Sweeney, the mother of an autistic adult who is affiliated with an anti-vaccine , at the autism panel meeting.

Mainstream autism experts and advocates in March convened the Independent Autism Coordinating Committee as a counter to Kennedy’s panel. At the new group’s meeting, one member spoke out against the spelling methods.

“In this underfunded disability environment, I don’t want a single penny diverted to debunked interventions like spelling,” said , a senior lecturer in history at the University of Pennsylvania and an who described her 27-year-old son as “profoundly autistic.”

It’s not only a waste of time, she said later in an interview, but “people subjected to spelling are not given access to evidence-based education. Every interaction turns someone like my son into a puppet, and I find that very objectionable.”

A Patchwork of Perspectives

The universe of autistic people, their parents, researchers, advocates, and service providers is a broad, acrimonious spectrum. Some say that vaccines or chemical exposures caused a massive increase in autism, others that diagnostic changes account for most of the increase. Some seek mainstream or alternative treatments, some demand classroom inclusion, and others want residential treatment. Some people with autism say it’s a difference, not a disability.

“When I tell the parents of a young child they have autism, it’s a tragedy,” said Audrey Brumback, a child neurologist at Dell Medical School at the University of Texas-Austin. “When I give the same diagnosis to a teenager, it’s good news. It means, ‘There’s nothing wrong with you; you’re just autistic.’”

Scientific medicine has failed to deliver good treatments for autism. After four decades of concerted research, “the results have for the most part been very disappointing,” said David Mandell, a professor of psychiatry and pediatrics at the University of Pennsylvania.

Severely autistic children — those requiring round-the-clock care with ailments like epilepsy and generally lacking in verbal language — account for of all U.S. autism diagnoses. Caring for them may mean dropping careers and spending vast sums on therapy. “They ought to spell special education with a dollar sign,” said Tracy Simmons, whose 17-year-old son, Noah, has autism.

Many parents of autistic children have tried vitamins and diets that exclude wheat, soy, or dairy. Some have turned to hyperbaric oxygen chambers, others to pig hormones to repair damage spuriously attributed to measles-mumps-rubella vaccines, and infusions of metal-leaching chemicals to remove traces of heavy metals in childhood shots. Recent regimens include camel’s milk, broccoli extract, and stem cell injections obtained at great expense in Panama and India.

In September, the White House touted leucovorin, used in some cancer care and for an ultra-rare genetic condition. Marty Makary, then-commissioner of the FDA, said the drug could help 50% to 60% of kids with autism.

There’s little evidence behind any of these treatments, Brumback said. Many parents try multiple remedies at once; if a child’s condition improves, it’s hard to tell what worked — or whether the child simply grew out of a problem.

Noah Simmons has spent two years learning to spell and type. At a climbing center in Gaithersburg, Maryland, he communicated with the aid of his mother, Tracy Simmons, who is holding a laminated sheet with the alphabet. (Arthur Allen/Ñî¹óåú´«Ã½Ò•îl Health News)
Noah Simmons glides down the rope at a climbing center. He high-fived his instructor and then beamed as he spelled out, “Im going to crush it again!” (Arthur Allen/Ñî¹óåú´«Ã½Ò•îl Health News)

Noah the Speller

During a Zoom session in which he typed on a keyboard held by his mother, Noah Simmons wrote glowingly about the world opened to him by two years of learning to spell and type.

“Im a new person. I have friends, I write, climbing,” he typed. “Conversation. I can have one. I have a say. Im human now.”

Later, at an indoor climbing center in Gaithersburg, Maryland, Noah scrambled nearly to the top of the wall before he slipped. He glided down the rope and slapped a high five with his climbing instructor as his mother approached. She carried a laminated sheet with the alphabet on it.

Tracy Simmons held the paper while Noah stabbed at the letters one by one, ending with a flourishing swipe at the exclamation mark: “Im going to crush it again!”

There, and at a later keyboard session at home, Noah seemed in control. But when Tracy stopped offering verbal prompts and encouragement, or stopped holding the board, Noah often got lost and signaled a need for help.

Tracy Simmons acknowledges that whoever holds the board could be steering a speller’s words. Despite his climbing prowess, Noah lacks fine motor skills, is anxious, and has trouble controlling his body, she said.

“He’s working on becoming an independent typer. He can do it short amounts of time,” she said. “But at times he gets overwhelmed.”

The method used by Noah and his mother came into use in the United States in the early 1990s. At first, trainers guided the arms or hands of the spellers as they pointed to a letter board. The idea was that the intelligence or literacy of severely autistic people was trapped in bodies they couldn’t control. They needed help physically learning to spell, first with a pencil or finger pointing at stenciled or printed letters, and eventually by typing on a keyboard.

Within a few years, however, dozens of experiments had shown that the facilitators, not the autistic people, were doing the spelling. A that the spellers could identify words or objects without their facilitators.

In addition, the technique has resulted in — sometimes in the autistic person’s life skeptical of the spelling process.

Next came the Rapid Prompting Method, devised by Soma Mukhopadhyay, an Indian mother of a boy with profound autism, who brought her system to the United States in 2001. Elizabeth Vosseller, a speech pathologist in Herndon, Virginia, launched a nearly identical method, Spelling to Communicate. In both, the facilitator, not the speller, holds the letter board. But each method relies on prompts.

Mukhopadhyay and Vosseller, who did not respond to requests for comment, have each declined to submit their systems to the kind of testing that disproved facilitated communication. Bonker said calls for such tests show a lack of respect for the disabled.

Asked why, after 23 years as a speller, she couldn’t communicate alone or without her mother holding the board, Bonker typed, “I can do it in certain environments that don’t include interviews with strangers.” Severely autistic people need coaches to help control their anxiety, Breen said.

Another star of the speller world, Woody Brown, spoke through his mother with Jenna Bush Hager on the Today show on April 1. The Browns were promoting his novel, Upward Bound, which became an immediate New York Times bestseller after its March release. During the segment, Mary Brown spoke in complete sentences that she said came from Woody, but the letters he typed, as far as the program’s viewers could see, did not correspond to her words and often looked like gibberish.

This raised questions about how Woody Brown could be the author of what critics described as a brilliant, sensitive novel. They pointed out that Mary Brown has worked as a Hollywood script analyst. The Browns did not respond to efforts to reach them for comment.

“Spellers” are best known to the public through the success of The Telepathy Tapes, which briefly unseated The Joe Rogan Experience as the country’s most popular podcast early last year. In The Telepathy Tapes’ first season, people with profound autism were allegedly revealed as clairvoyant superhumans.

The evidence for their telepathic abilities was produced through spelling. The host showed spellers and facilitators two things, and the speller, with the facilitator present, typed out what the facilitator saw. Viewers had to wonder whether this was evidence of telepathy or confirmation of what critics have said all along: that the facilitator is the one controlling the words, often by feeding the speller subtle cues.

Bonker said she appreciated the Telepathy Tapes’ host for including her nonprofit group’s information on its website. As for telepathic skills, “I believe nonspeakers have many gifts,” she said. “And I believe what they say.”

The debate over spelling is playing out in boards of education and courtrooms, where parents of autistic children seek aid for their children’s spelling lessons.

In New York state in March, anti-vaccine on state Sen. Patricia Fahy, the Democratic chair of the disabilities committee, after she inserted language into a disability rights bill requiring that payments go to “verified” communication methods that assured patient autonomy.

Vikram Jaswal, a University of Virginia psychologist who works with spellers, said he’s seen people with severe autism who can type independently, though only a handful have that ability out of the couple of hundred spellers he’s met. More research is needed to figure out who can best benefit from the technique, he said.

Tracy Simmons believes in the method, and so does her son — assuming he’s in control of what he types.

On a recent morning, Tracy read aloud a beautiful escape-from-Alcatraz story she said Noah had written with her help and that of his spelling trainer. “He writes all the time in his head,” she said, but it could take years for her son to consistently type independently.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This <a target="_blank" href="/health-industry/autism-controversial-treatment-spelling-maha-telepathy/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Medicaid Work Rules Surprise States /podcast/what-the-health-449-medicaid-work-rules-exemptions-june-4-2026/ Thu, 04 Jun 2026 18:30:00 +0000 /?p=2244767&post_type=podcast&preview_id=2244767 The Host
Julie Rovner photo
Julie Rovner Ñî¹óåú´«Ã½Ò•îl Health News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of Ñî¹óåú´«Ã½Ò•îl Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

New rules out this week from the Trump administration for implementing work requirements for adult Medicaid recipients surprised many state officials. The rules make it more difficult for states to determine who should be exempt from the requirements, including by stipulating that having a serious condition such as HIV or cancer does not automatically excuse an enrollee from having to engage in 80 hours per month of paid work, volunteering, or school attendance.

Meanwhile, a separate rule would give political appointees far more power over who gets health and science grant funding, and what political activities grant recipients can participate in. This would be a dramatic change — currently most decisions are made by career scientists and outside peer reviewers and based solely on scientific merit rather than whether they advance an administration’s political agenda.

This week’s panelists are Julie Rovner of Ñî¹óåú´«Ã½Ò•îl Health News, Margot Sanger-Katz of The New York Times, Alice Miranda Ollstein of Politico, and Liz Essley Whyte of The Wall Street Journal.

Panelists

Margot Sanger-Katz photo
Margot Sanger-Katz The New York Times
Alice Miranda Ollstein photo
Alice Miranda Ollstein Politico
Liz Essley Whyte photo
Liz Essley Whyte The Wall Street Journal

Among the takeaways from this week’s episode:

  • The Medicaid work requirement was pitched as a massive money-saver for the federal government because, supporters argued, it will keep people who shouldn’t be eligible for the program from being on the rolls. But it is becoming clear that implementing the policy is going to cost states tens of millions of dollars in new hires, contracts, communication campaigns, and tech systems. State officials say this is coming when budget pressures are already high.
  • The White House has advanced long-anticipated draft regulations designed to give political appointees the final word on federal research grants. The regulations, which have been close to the heart of Office and Management and Budget Director Russell Vought and were included in Project 2025, would empower the federal branch to pull back funding if political appointees find grantees doing work at odds with the president’s agenda.
  • In a move that went somewhat unnoticed, President Donald Trump on Friday gave his official endorsement to a study by the Department of Health and Human Services that calls for cutting the number of vaccines recommended for every American child. It’s not clear what impact Trump’s action will have — the changes that Health and Human Services Secretary Robert F. Kennedy Jr. tried to make have been put on hold by federal courts.
  • A final rule issued this past week for the No Surprises Act makes changes designed to improve communication between insurers and providers. The rule does not, however, get at what’s emerged as the law’s biggest problem: When disputes between doctors and insurers reach arbitration, doctors are the overwhelming winners. And it is costing millions. Fixing the underlying issues would probably require legislative attention.

Also this week, Rovner interviews Ñî¹óåú´«Ã½Ò•îl Health News reporter Lauren Sausser, who wrote the latest “Bill of the Month,” about a patient with a temporary memory problem and a less forgettable $59,000 hospital bill. If you have an outrageous or inscrutable medical bill you’d like to share with us, you can do that here.

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

Julie Rovner: Ñî¹óåú´«Ã½Ò•îl Health News and The Associated Press’ “Festering Infections to Untreated Cancer: ICE Detainees Describe Medical Neglect Across US,” by Rae Ellen Bichell, Claire Galofaro, Maia Rosenfeld, Renuka Rayasam, Aaron Kessler, and Byron Tau.

Liz Essley Whyte: The Wall Street Journal’s “,” by Christopher Weaver and Anna Wilde Mathews.

Alice Miranda Ollstein: The New York Times’ “,” by Simar Bajaj.

Margot Sanger-Katz: ProPublica’s “,” by Alec MacGillis and Ken B. Morales.

Also mentioned in this week’s podcast:

  • Politico’s “,” by Robert King and Alice Miranda Ollstein.
  • The New York Times’ “,” by Margot Sanger-Katz and Sarah Kliff.
  • The Washington Post’s “,” by Lauren Weber.
click to open the transcript Transcript: Medicaid Work Rules Surprise States

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

Julie Rovner: Hello, from Ñî¹óåú´«Ã½Ò•îl Health News and WAMU Public Radio in Washington, D.C. Welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for Ñî¹óåú´«Ã½Ò•îl Health News. And, as always, I’m joined by some of the best and smartest health reporters covering Washington. We’re taping this week on Thursday, June 4, 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: Alice Miranda Olstein of Politico. 

Alice Miranda Ollstein: Hi, there. 

Rovner: And we welcome to our podcast panel this week Liz Essley Whyte of The Wall Street Journal. Happy to have you join us. 

Liz Essley Whyte: Thanks for having me, Julie. 

Rovner: Later in this episode, we’ll have my interview with my colleague Lauren Sausser, who wrote the latest Ñî¹óåú´«Ã½Ò•îl Health News “Bill of the Month.” It’s about a woman with a temporary memory problem who probably wishes she could forget about a $59,000 hospital bill. But first, this week’s news. 

So, it’s been almost a full year since President [Donald] Trump signed the big budget bill that would reduce Medicaid spending by nearly a trillion dollars over the next decade, and this week we got the much-anticipated regulation outlining what states have to do in order to implement the new Medicaid work requirements for low-income adults on the program by next Jan. 1. And it’s safe to say that these rules â€” which are interim final rules, by the way, so that means they technically take effect immediately â€” are not what states were expecting. I want to break this down in pieces, but first, let’s talk about what a heavy lift this was going to be for the 43 states that are required to put these rules into effect.  before the rules came out, right? 

Ollstein: Yes, this is being pitched as a massive money saver, that was how it was framed. It’s being scored that way in the original bill in order to pay for a bunch of other things: tax cuts, etc. 

Rovner: I would say it is a money saver for the federal government, right? 

Ollstein: Well, that is the promise, that it will save money by reducing the number of people covered by Medicaid. And so proponents of this frame it as cracking down on waste, fraud, and abuse, arguing that the only people who are going to get booted off of Medicaid are the people who deserve to be booted off of Medicaid, because in this piece of it they’re not working or volunteering or going to school or caring for a sick relative. We looked at, yes, this is aimed at saving federal money, but it is currently costing states millions or tens of millions of dollars to implement. It is extremely expensive to implement. States are having to hire a lot of people, they’re having to create, you know, brand-new tech systems that, or upgrade their old tech systems that they didn’t have before. And a lot of state officials told us that this is coming at really the worst time for them. They’re already losing other federal funding, they are really struggling, they’re having to make lots of cuts to social services. And so there just isn’t a lot of extra money to go around. And yet they have to spend all this money to implement these rules. And, especially, Democratic officials were telling us that, Look, we wouldn’t mind having to invest this money if it were going to lead to covering more people or offering people better, more comprehensive coverage. But they really resent having to spend this money in order to cover fewer people in the future.  

Rovner: So, let’s get to the rules themselves. As I like to explain, there are two big things that states are going to have to do here: first, to determine which Medicaid recipients are exempt from that community engagement requirement â€” to work, volunteer, or attend school 80 hours per month â€” and second, to determine if those who are not exempt are actually meeting the requirements. And these new rules make both of those harder for states, right, Margot? 

Sanger-Katz: Yeah, I think it’s been like this huge freak-out among states over these last few weeks, because there were a lot of rumors flying around, but I think there was just this concern, like, Whoa, if they make major changes right now, it’s going to be even harder for us to implement. And for states that were, as Alice said, some of these blue states that were trying to minimize the coverage losses under the Medicaid work requirement, I think they were worried, Well, they’re only going to make it stricter; they’re only going to make it harsherWhy would they be changing things now? And so, , it turns out that is, in fact, what they did, that there were a number of policy choices where they decided to apply a stricter standard than what states had been told before this week. 

So what are the biggest examples of this? I think there are two. One is that the work requirement doesn’t apply to everyone. The Republicans in Congress basically said we want people, adults without young children and without disabilities, to be engaged in their communities â€” to work, volunteer, go to school a minimum number of hours each month if they want to stay eligible for Medicaid. But we understand that there are certain people who are going to have trouble doing that, and so we want to have exceptions for those people. So not everyone has to do the work requirement, a bunch of people don’t have to. And the biggest category of this was a category that Congress called “medical frailty.” The idea was these are people who have medical problems that, like, might make it hard for them to work, or who might really suffer if they lost their health insurance. So, depending on who you talk to, that was what Congress was trying to protect with that exception. And what CMS [the Centers for Medicare & Medicaid Services] had been telling states over these last few months is: Put together a list of diagnoses of serious illnesses, and you can data match, you know, you have people in your Medicaid system already. OK, if they had cancer, if they have HIV, if they have Parkinson’s disease, that’s a serious illness. Those people are medically frail. You can just automatically exempt them, and then you don’t have to check their work hours. 

Rovner: That’s what Nebraska is already doing, right? Because they’re one of the states that have started this early. 

Sanger-Katz: Correct. Yeah, so Nebraska is already live with its work requirement. And, again, Nebraska, even more so than these other states, got tons of guidance from CMS, because they were so excited to go first, and they wanted to do everything right. They wanted to be a good example. And I think CMS wanted them to demonstrate, OK, you can like do this policy. Yeah, they had a list, I think they had like 300 pages of diagnostic codes, you know, like all these diseases. If you have these diseases, we’re gonna exempt you, then you don’t have to demonstrate work hours. If you don’t, OK, like, then you’re gonna have to prove that you’re working or volunteering or going to school. 

So what the rule said is, like, that’s not good enough. It is not good enough to have cancer â€” that in order to be exempted from having to demonstrate that you are working, you have to prove that you have cancer, and that your cancer is creating a problem that would make it hard for you to work. And the rule creates a standard where states are going to have to evaluate not just what diseases people have, which might be easy to do using medical records, for at least people who are already enrolled and who have been getting medical care, but instead that they have to make something like a disability determination, which is something that the states were really not ready for, that they don’t really have the staff to do or the training to do, and that cannot be easily automated on the back end right now. I think there’s not an easy way for them to go into the medical record and decide whether or not someone’s illness is serious enough that it would impair their ability to work. And the language that they use in the rule, the standard, is not actually really like the standard in other programs that have work requirements, so the states have no experience with the standard.  

And, as it turns out, doctors don’t really have any experience with this standard either. So, you know, when you are making a workman’s comp claim, for example, like the doctors have forms, there’s a system, they understand what it means to be too sick to work because of an injury that would preclude you from workman’s comp. And in SNAP [Supplemental Nutrition Assistance Program], it turns out, there’s also a standard if you’re unable to work, you could get out of the work requirements. But that is slightly different. And so I think there is this real concern by states that they just like actually don’t know how to do this. There might be some AI [artificial intelligence] solution where they’re data mining in the medical records and trying to figure out if they have these codes, and these codes, like, maybe there’s a way to prove that someone is sick enough. What most people that I’ve talked to said is that basically this is going to be a system that’s largely going to be achieved with doctors’ notes. Doctors have to be willing to do this thing that they’ve never done before, and they’re, you know, having to sign that someone can’t work, and that’s going to be a lot of frictions in that process. And then there’s going to have to be a caseworker on the other end who is going to have to look at those doctors’ notes and is going to have to read them and decide whether the doctor has specified the impairment such that it is in compliance with the work requirement. 

So this is just a lot of like administrative headache. I think there are reasonable arguments for wanting to have this standard given what Congress’ intent was, that they wanted to have a work requirement. The point was they wanted people who could work to work, and they wanted people to be exempted who could not work. I think not everyone in Congress agrees with that, but I think some of them do. But I think the reality of how you actually do this in real life is much, much more complicated than that. There is no, like, godlike state that can just see how sick you are and can make these determinations. And so I think that states are really worried about this. They’re worried about how they’re going to get in compliance with this, they’re worried about all the changes they’re going to have to make to the systems that they’ve already built. And I think that a lot of advocates for people with Medicaid, and a lot of disease groups, advocates for people with serious illnesses, are very worried that many, many more people are going to lose coverage, and particularly people who are medically frail. You know, if you think about, say, a person with HIV, they may be in treatment and getting their medicines, and they might even have undetectable levels of HIV in their blood, and they are perfectly capable of working right now. But if they lose their health insurance and they lose their access to their prescription drugs, they fall out of treatment, their health condition could worsen pretty substantially. And I think we can all think of lots of other diseases that are like that. I think cancer is a good example. You know, some people are living with cancer, and it’s kind of like a chronic disease, but it’s because they’re getting regular care. If they lose their treatment&²Ô²ú²õ±è;…&²Ô²ú²õ±è;they lose their treatment for many other diseases we can think of that are like this. Depression, you know, certain kinds of mental health problems, if people fall out of treatment, that actually could impair their ability to work, and that causality could run in the opposite direction. So, I think this is a big change. 

And then the other change that they made is more technical, but it was like, how are people going to prove various things under this law? And a lot of states were just expecting people would be able to sign a statement and say, I am caring for a disabled relative&²Ô²ú²õ±è;…&²Ô²ú²õ±è;you can trust me, I’m signing under penalty of perjuryThis is what I’m doing. Or I volunteered 12 hours last month, you know, I’m just going to sign this under penalty of perjury. Because there’s not a good way to check. 

Rovner: And for the first year, that’s OK, right? They’re taking these attestations&²Ô²ú²õ±è;…&²Ô²ú²õ±è;

Sanger-Katz: For the first year, they’re going to allow it. And then after the first year, they’re going to allow it for medical frailty only â€” once. So if you sign up for Medicaid in 2028 and you claim that you’re too sick to work, you can sign a form that says that, but then, within the next six months, before you renew your coverage, you’re going to have to come back with some kind of medical record with some kind of doctor’s note that proves it. So you know these are some pretty big changes, and Trump administration officials said, you know, our view is this is consistent with [what] the law is for, which is to ensure that people are working and are engaged in their communities if they’re capable of doing it. They also said that this prohibition on people just signing statements is a way to avoid fraud, because why wouldn’t people just sign a statement saying that they didn’t have to do this work requirement if they could? But I think this is going to have real implications in the real world. It’s going to create a huge administrative headache for states. It’s probably going to impair a lot of people from getting coverage who would have otherwise been covered if CMS had stayed the course with what it had been telling states before. 

Rovner: So, I know my inbox is full of reactions from groups across the medical spectrum. Alice and Liz, I assume you guys are hearing lots of feedback about this, too. 

Ollstein: Absolutely. I mean, just like Margot said, there just isn’t really a good way to do this, trying to automate it and base it on medical claims, like 1) States don’t have that built yet, the different systems don’t, quote unquote, “talk to each other” in that way. But also, you know, just because someone used a certain number or kind of health services in a year doesn’t necessarily tell you whether they can work or not. You know, lots of people who are too sick to work maybe haven’t had the medical services, and someone who had a lot of medical services maybe can work fine. But then again, leaving it up to individual doctors who are not trained to make this determination, who don’t have the time to have a bunch of extra appointments just to do this, and who are more used to doing this for â€” Margot gave a few examples, but something some doctors brought up to me was like short-term disability, like evaluating, like, this is the number of weeks someone needs to recover from X surgery. So like that’s a determination a doctor feels qualified to make. Whether someone can work any job, I mean, that’s just not really something they can confidently say. I mean, working a job in a factory is not the same as working an email job, and what kind of jobs are available in this person’s area? It’s just a huge mess. 

Rovner: So, is there any chance the administration is going to back off? There is public comment being taken now until, I think, July. Or will Congress perhaps step in and say this is not what we intended, or does somebody get to sue here? I mean, or this is what’s called an interim, I’m saying, an interim final rule, so it’s not set in concrete yet. 

Sanger-Katz: I mean, I would not be at all surprised if we see lawsuits, but I think we’ll see something else happen first, which is: The law says the states have to get ready to go by&²Ô²ú²õ±è;…&²Ô²ú²õ±è;Dec. 31, 2026, to be ready to go live in January. But it says if they encounter a hardship, if they’ve been making good-faith effort towards getting ready for the work requirement, and they’ve encountered some hardship, and they, like, can’t make the deadline, they can apply for a waiver, basically a two-year extension from CMS. The Trump administration has been extremely clear to states about this all the way along, basically saying, You are not going to get these, we are not going to grant them, like, you know, maybe if there’s like a volcano that goes off in your state and the entire mainframe that holds your Medicaid enrollment system is melted, like, we’ll talk. But I think a lot of states now, especially some of these blue states that are really concerned about this stuff, I think that they are going to apply now, which they might not have done before. And I think if they are denied, I could see some lawsuits around that waiver process to just say, Look, like, you just changed the rules very late. There’s no practical way that we can get this done in time. We have been proceeding in good faith, and, you know, we need more time. So, I think that there could be litigation. I also think they did have this temporary policy for 2027 around self-attestation, which I think does help states get out of some of these, like, really tricky technical issues in the first year. I don’t know, like maybe there could be some further extension of that. But I don’t know. I’m curious, Alice, what, or Liz, what you think. But I am not holding out much expectation that Congress is going to make major changes here. 

Ollstein: Well, and because of the January deadline, making changes could solve one problem and create another. Because states already feel like they don’t have enough time, and they already feel like the rules of the game are being changed in the middle of the game. You know, what they had been spending months preparing for now has to change because of this guidance. If it changes yet again, and they have even less time to adapt and make a new change&²Ô²ú²õ±è;…&²Ô²ú²õ±è;like you said, they’re making hires, they’re trying to make contracts based on this, and so even as advocacy groups, and even states ask for additional changes, additional changes could make it even harder to implement in time. 

Rovner: All right, well, let us move on, because there’s lots more news. Speaking of new regulations, a proposed rule from the Office of Management and Budget would basically make all grant funding from the U.S. Treasury subject to political appointee approval. Currently, most grant-level awards are determined by career scientists and peer reviewers, who make decisions based on scientific merit. Under this new policy, grants would have to, quote, “demonstrably advance the president’s policy agenda.” At the same time, the new 400-page document includes many new rules for grant recipients, including universities and other entities, including limiting their ability to engage in so-called issue advocacy and allowing the revocation of grant funds if recipients take actions that are not deemed by administration political officials to be in, quote, “the public interest.” Now, all this isn’t totally new. Office of Management and Budget Director Russell Vought has been talking about this literally for years. It was laid out in Project 2025 as well as in several executive orders that have been issued by President Trump, which is why I think it’s getting relatively little attention, given the pretty earth-shaking changes that it envisions. Still, putting it out in an actual proposed regulation raises the stakes here, doesn’t it? 

Whyte: Yeah, I would echo that. This has been on Russ Vought’s radar for many years. If you talk to folks, you know, who know him and know his thinking, this all comes down to this thinking about the executive branch and its role in the Constitution, and how there shouldn’t really be independent agencies or branches of the executive branch that aren’t doing what the president wants. And so that is manifested in this regulation that says you can’t promote anti-American values, contribute to illegal immigration, things like that, that are policy priorities of this administration, and a new filter that’s going to be applied to all federal grant-making, once this is finalized. And it’s a distillation of that theory about the executive branch that is now coming out in practice. 

Rovner: Although going back to what we were just talking about with the Medicaid work requirements, I mean, the idea of having to have a political appointee involved at this extremely micro level in the hundreds of thousands of grants that the federal government issues every year. I mean, some of it is the ideology, but some of it is just the logistics. I know that this has been part of the problem of getting money out the door at the National Institutes of Health â€” is that normally money that just sort of flowed when it was approved by career workers now has to wait for the approval of a political appointee, and there are not enough political appointees to approve all of these things, and people aren’t getting their money. So, I mean, this is a logistical logjam, as well as an ideological one, right? 

Sanger-Katz: And we’ve seen some evidence of this. The Department of Homeland Security has had an informal policy like this, where the director was personally approving any expenditure, I think, more than 100 â€”now, I’m forgetting. 

Rovner: $100,000, yeah, I think it was. 

Sanger-Katz: There was some threshold, and it did lead to this huge backlog, because you know this is a busy person who has a lot of other things to do. And it was leading to a lot of money not getting spent that had been authorized by the staff members who thought it was appropriate. And I think there’s also potential for corruption with this kind of system, where you have these bottlenecks where very few people are making all the decisions about where money goes, because then there is an obvious focus on where you send your lobbying efforts to try to get favorable outcomes in contracting and in grant-making. 

Whyte: Yeah, the concern from the science and public health organizations is that the merit of the scientific grant will no longer matter, that how good the science is won’t be the chief thing. 

Rovner: Yeah, that this is all about, you know, promoting the president’s agenda. I’m just wondering what Republicans will feel about this when Democrats, you know, take back the administration and try to do the same thing. 

Whyte: I think that’s exactly the concern that a lot of conservatives on the Hill have, which is, you know, all of this is fine and well, but you’re not going to like it when the tables turn. 

Rovner: Yeah, that was â€” that’s what I said, you know, when the Affordable Care Act passed, I said, there’s an awful lot of places where it says the secretary shall, or the secretary may, or the secretary will. I said, you know, the secretary’s not always going to be somebody who supports this. That&²Ô²ú²õ±è;…&²Ô²ú²õ±è;turned out to be a correct prediction.  

Moving on, the idea of this administration playing down its vaccine skepticism was so last month. Last Friday, President Trump issued an executive order basically endorsing Health and Human Services Secretary [Robert F.] Kennedy [Jr.]’s revamp of the childhood vaccine schedule, and ordering the CDC [Centers for Disease Control and Prevention] to review it and, quote, “take any appropriate steps to update said schedule.” What happened to “This isn’t popular, so we’re not going to push it,” or is doing this on a Friday afternoon how the administration is trying to placate the MAHA [Make America Healthy Again] movement, but not really make big headlines here? I also â€” this is another story that I think kind of flew below the radar. 

Whyte: Yeah, it’s funny because HHS can’t really say anything about this executive order due to their litigation ongoing, and so it’s just kind of out there. But it’s totally unclear to everybody why or what it’s expected to do, given that the court has put everything regarding the Advisory Committee on Immunization Practices on hold, and there currently is no ACIP. So what exactly the White House was intending with this remains pretty opaque, I think. 

Rovner: Like a lot of things, although I have started to, you know, like, pay attention on Friday afternoons again. Meanwhile, our podcast colleague  about how the anti-vax movement is trying to achieve its goal through the courts by arguing that vaccine mandates that lack religious exemptions are unconstitutional. And one of those cases is likely to reach the Supreme Court at some point in the not-too-distant future. What would it mean to public health if the court were to actually strike down the ability of states to impose vaccine mandates, which is one of the possible outcomes here? Or, as the groups claim, is this just about getting the five states that don’t have religious exemptions from vaccines into alignment with the rest of the states? 

Sanger-Katz: I think there is pretty strong evidence from the studies of state policies over the years that having really limited exemptions on mandatory vaccination really increases the number of kids who get vaccinated, that the more ways there are to kind of wiggle out of the requirement, the more parents will choose one of those options. And the narrower the exceptions, the fewer will. So, there are clearly some parents who really, really care about this issue and who do qualify for one of these exemptions. But I think there’s a larger number of parents who are maybe ambivalent or have kind of weakly held preferences not to vaccinate; if they’re not really being forced to do it, they won’t do it. If they are really being forced to go through a lot of administrative burden to prove that they need an exception, then they tend to vaccinate. And so I think this is an exception that almost every state already has, but I think that the evidence is relatively clear that opening up more exceptions in those states that don’t have them now, probably on the margin, will lead to fewer kids getting vaccinated in those states. 

Whyte: Yeah, the five states that don’t allow religious exemptions to vaccine mandates are West Virginia, California, New York, Connecticut, and Maine. So that would be, you know, an immediate effect there. But then I think we can expect from a Supreme Court precedent, if one is set, that other states, state legislatures, local school districts would perhaps expand the religious exemptions they have now, or make them easier. We’ve seen that how much friction there is when you get a religious exemption really matters. So, like, do you have to just sign a form, click a box, or do you have to go meet with someone and prove that you, you know, have sincerely held beliefs on this matter? And those kind of friction points matter a lot too. 

Rovner: Yeah, I just, I couldn’t help thinking, as I was reading this story, about going back to the Dobbs case, the abortion case, which was not originally intended or filed as one that was going to overturn Roe, and makes me wonder what the Supreme Court might do, even if the question that’s raised is, you know, about these religious exemptions, could they go on and overturn â€” I think that precedent was from 1905 that said that states can have vaccine mandates â€” and wondering whether a) that’s possible, and b) that’s likely. 

Sanger-Katz: It’s always hard to predict what the Supreme Court is going to do. 

Rovner: Always. 

Sanger-Katz: It’s really up to them. They’re an idiosyncratic group of people who get the final say on a lot of things. 

Whyte: I thought it was interesting, Lauren’s story was great, and one of the things it pointed out is that what the Supreme Court did is specifically give instructions to this lower court to go back and look at this question about religious exemptions for vaccine mandates using a case that happened in Maryland, where the Supreme Court found that the school district could not mandate that kids participate in lessons with LGBTQ content that would conflict with their parents’ religious beliefs. So in other words, the families had a religious right to not have to participate into that in school. And the Supreme Court is asking, is there a similar right that a family would have to not have to participate in vaccination to attend school? So that’ll be an interesting question, and it could, as we said, you know, have big impacts across the states and how school districts handle vaccine mandates for kindergartners. 

Rovner: Although I think this will take a while to play out. And before we leave the subject of vaccines, an update to our discussion from a couple of weeks back about the global vaccine alliance known as Gavi, which the U.S. owes some $600 million appropriated by Congress. That’s money that’s been held up by HHS Secretary RFK Jr. At a hearing of the Senate Foreign Relations Committee on Tuesday, Secretary of State Marco Rubio said his agency, which has historically been in charge of Gavi for the U.S. government, said that it is, quote, “sort of at a stage where we are going to re-engage. We need to drive this to an outcome.” Was that his polite way of saying that he plans to give Gavi the money that Congress allocated to it, and RFK Jr.’s concerns be damned? 

Whyte: I think a lot of people are reading it that way. You know, the State Department has a very practical view on these things. I also thought the way that Rubio phrased how they were giving Secretary Kennedy a large amount of deference because of his strongly held views on this matter was a very interesting insight into how the Cabinet works and how Trump has instructed his top officials to work together. And I think part of the problem here is that they’re just running into the practicalities of not having an Ebola vaccine. And so the State Department is going to have to do what it feels must be done. 

Rovner: Yeah, it was just a little peek behind the curtain of this intra-agency squabble that’s going on. We’ll wait and see if that happens. 

Whyte: I should say that they don’t have a vaccine for this newest outbreak that is going on. They, you know, the older Ebola vaccine, it was not appropriate to treat this one or to prevent this. 

Rovner: All right. We’re going to take a quick break. We will be right back. 

All right. Our theme this week seems to be federal rulemaking. So, here’s another one. The Trump administration has issued final rules attempting to fix the arbitration system created in the, quote, “No Surprises Act” â€” that it is safe to say has not worked as it was designed by Congress. Margot, remind us what went haywire with the process that’s actually in practice [to] dramatically increase what providers get paid, and will these new rules make it all better?  

Sanger-Katz: So this is a system supposed to solve the problem of surprise medical billing when you, say, go to the emergency room and some doctor treats you, and it turns out that that doctor didn’t take your insurance and sends you a huge bill. So the law did away with that, basically said no one is allowed to send you a huge bill in that situation, and then it created a system on the back end for the insurance company and the doctor to kind of fight it out and figure out what the doctor was going to get paid if they didn’t have a contract with that insurance company. And the expectation of Congress was that this is a system that would be used fairly rarely, that most of the time this would be negotiated between the parties; they would just decide on a price and work it out, but every once in a while there would be a rare case where they would need to litigate their dispute. And it would go, they set up this arbitration system where a neutral arbiter, usually a lawyer, but not always, would hear arguments from each side and decide who had the more reasonable position, and would have to choose between the two bids. They couldn’t negotiate any further, but, you know, the doctor would say, This was a very complicated case, I deserve $10,000. And the insurance company would say, No, no, no, like, normally for this kind of visit we pay $500. And the arbitrator would have to decide which is more reasonable: $10,000 or $500. 

What’s happened, I think, to the surprise of a lot of people, is that instead of 17,000 of these cases going to arbitration, which is what CMS expected when the law passed, more than a million are going through a year. There has just been an explosion of cases coming through the system. Lots and lots of medical disputes are now being decided using this process, and the doctors are winning almost all of the time. I think in the last quarter for which there is data, 88% of these arbitration claims are being decided in favor of doctors. And because of that, the doctors, in many cases, have started getting more aggressive in what they ask for. Because they keep winning, there is not really an incentive to say that price is normally $500. They’re much more likely now to ask for $10,000 than early on in the system, where maybe they were asking for $1,000. And so we’re seeing some really eye-popping awards. Not all of them; there are a fair number of awards that are, you know, within a reasonable number of multiples of what the normal price is. But there are an increasing number where doctors are just getting huge, huge, huge increases over what you would expect. And my colleague Sarah Kliff and I wrote a story a few weeks ago about a plastic surgeon in New York and New Jersey who was routinely collecting fees of hundreds of thousands of dollars for breast reduction surgeries that he had previously accepted payments of around $10,000 from the same insurer prior to this law going into place. So big problems. Lots of complaints from insurers, as you can imagine, and also from employers who, in many cases, are actually paying the bills for their workers’ health insurance directly, because they have these self-insured ERISA [Employee Retirement Income Security Act of 1974] plans. 

This rule that just came out is not getting at the real, like, meat of the system, how the arbitration works, and what&²Ô²ú²õ±è;…&²Ô²ú²õ±è;how the arbitrators make their decisions. But it’s dealing with, like, a lot of, like, technical issues about, you know, how do you submit paperwork? What kind of information do you provide? Is it all in one computer system? How can you make sure that you have identified the right insurance company? And what are the administrative fees that you pay when you want to initiate one of these claims? And so this is a very hot issue. I wrote this one story, and, like, everyone is just really worked up about it. The doctors are really worked up about it, the insurers are really worked up about it, the arbitrators are really worked, you know, everyone feels strongly about this law, and whether it’s going well or not well, or what changes or they want or don’t want. Everybody loved this rule. As far as I can tell, there have been, like, basically no complaints about this rule. The one complaint I’ve seen is that they lowered the fee to file a new case, and so I think people who feel like there are too many of these cases would like it to be a little harder to file a new case. But, in general, it seems like these were expected, helpful, technical upgrades that are just going to make the process work a little bit more smoothly and deal with some of the annoying administrative headaches. 

Rovner: But not address the deeper problem. 

Sanger-Katz: The bigger issues, I think, really do require the involvement of Congress. If Congress wants to revisit the law and change the way that this overall system is structured, they’re probably going to have to write new legislation. And I’m not sure how large the appetite is for that right now. 

Rovner: Yeah, I’m not going to hold my breath on that one. All right, that’s as much news as we have time for this week. Now, we will play my “Bill of the Month” interview with Lauren Sausser, and then we will come back and do our extra credits. 

I am pleased to welcome back to the podcast Ñî¹óåú´«Ã½Ò•îl Health News’ Lauren Sausser, who reported and wrote the latest “Bill of the Month.” Hi, Lauren. 

Lauren Sausser: Hi. 

Rovner: So, this month’s patient got caught in one of those fights between the insurance company and the hospital, and, of course, it turned out to be harder to untangle it than it should have been. Tell us who she was, what happened to her, what kind of care she needed. 

Sausser: Sure, so Jan Anderson is a 65-year-old woman who splits her time between Arizona and Washington state. And Jan was hiking with her husband about a year ago in Arizona. They were in Sedona. And later that afternoon â€” it might have even been pushing into early evening â€” she started repeating herself. So she asked her husband, Did we hike today? And he said, Yes, we hiked. And then a few seconds later she asked the exact same question, Did we hike today? And it was clear almost immediately that Jan needed to be seen. So her husband drove her to a freestanding ER in the Sedona area, and that facility assessed her but was not equipped to deal with patients who might be experiencing stroke. They didn’t know what was happening with Jan at this point, so she was airlifted to a hospital in the Phoenix area, where she was admitted. And they ran a bunch of different tests and images, and it turns out she wasn’t having a stroke, she was having, she was experiencing an episode of something that’s called temporary [transient] global amnesia â€” which, the good news is, is benign, and as the name suggests, temporary. But her hospital bill ended up being quite a lot, even though it was less of an emergency than they originally thought. 

Rovner: Well, of course, that’s what they always tell you: If you’re having symptoms, you should go to the emergency room. So, she did have insurance, right? So, why did the hospital in Phoenix think that she didn’t? And how much was the bill? 

Sausser: OK, so the total bill was $59,181. That’s just for the care she received at the hospital in the Phoenix area. She did have insurance. She was insured through Molina [Healthcare], and it was a plan that she had purchased through the federal healthcare.gov marketplace. For some reason, though, her insurance information was not transferred from that freestanding ER in Sedona to the facility where she was airlifted in the Phoenix area. So it was a mistake, but that second facility billed her as if she was a self-pay patient with no health insurance. 

Rovner: Now, once the hospital did figure out that she had insurance, why did the insurance company then still reject the claim? 

Sausser: It took a while to get some answers on this, but eventually Jan learned that Molina was not going to cover the cost of that care she received in Phoenix, because the Phoenix hospital had not sought prior authorization for her to be admitted. Now, under the federal No Surprises Act, emergency services are supposed to be paid for in-network without prior authorization. In this case, the insurer was saying Yes, we do cover emergency services without prior authorization, but in this case her care team was recommending that she be admitted. And the insurer argued that the insurance company needed to be notified before that happened. 

Rovner: So, I know I ask this question all the time: Why didn’t the No Surprises bill [Act] get the patient out of the middle of this obvious insurance company hospital dispute?  

Sausser: This&²Ô²ú²õ±è;…&²Ô²ú²õ±è;in this case, the No Surprises Act kind of worked. Jan received a bill pretty early on saying she owed about $15,000 of that $59,000 total charge. After she told the hospital that she did indeed have coverage, that bill was suspended. There was no one technically knocking on her door pressuring her to pay any amount of the charges she had accumulated in the Phoenix hospital. But every time she would log on to her patient portal, she would see these outstanding charges. The hospital didn’t understand why the insurance company wouldn’t pay. The insurance company was saying she needed to have had prior authorization, and these charges just weren’t disappearing, and so eventually she started reaching out to insurance commissioners, lawmakers, trying to get someone to pay attention, because she was worried at some point she might owe the hospital $59,000. She couldn’t get these charges resolved, and didn’t understand why. 

Rovner: And what eventually happened? 

Sausser: Well, she eventually contacted us. And, as is often the case when journalists get involved with these health insurance issues, the ball started moving. So Molina started talking to the hospital in the Phoenix area, the Phoenix-area hospital has assured Jan that she will not be billed for any of the $59,000. Even if Molina doesn’t pay, the hospital has assured her that they will write off the balance and that she will not be billed. Jan has asked for that assurance in writing. As of the last time I spoke to her, she hasn’t gotten that, but she has been told she will not have to pay any of it. 

Rovner: So, what’s the takeaway here? I mean, it sounds like, you know, she did everything right, and it seems to be resolved. 

Sausser: It seems to be resolved, although the last I heard the $59,000 in charges haven’t necessarily gone away. I spoke with a patient billing expert about this, and the advice that she gave in a situation like this, you know, when you have a hospital stay, you get all sorts of paperwork in the mail afterward. You get paperwork from the insurer, you get paperwork from the provider. This billing expert recommends that you look at the patient responsibility portion of your explanation of benefits. Now that’s a document that you will get from your insurance company. It should list the charges that the hospital has billed, but it should also list the portion of those charges that the patient is responsible for. In Jan’s case, her explanation of benefits clearly stated that she was not responsible for any of it. Now, that didn’t mean that those $59,000 in charges was automatically disappearing, as this story shows. More than a year later, it’s still not resolved. But it shows you that the insurance company is saying you are not responsible for this bill, in this case. The billing expert that I spoke to recommended that the patient mail or email the explanation of benefits from the insurer to the hospital and show that the patient responsibility is zero, in order to get that balance cleared.  

Rovner: We’ll see if this happens. Lauren Sausser, thank you so much. 

Sausser: Of course, thanks for having me. 

Rovner: 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. Alice, why don’t you start us off this week? 

Ollstein: Yeah, I have a very interesting piece from The New York Times by Simar Bajaj, and it’s called “.” And it is about the trend we’re seeing under the MAHA movement, largely, you know, expressed by Secretary Kennedy, back towards putting a lot of focus on personal responsibility, personal lifestyle choices, and less focus on policy and environmental factors. And it’s, you know, digging into the history of that on a few different fronts, both with, you know, infectious diseases, but also with things like obesity. And it is talking about basically how we’re seeing a return to a system that didn’t really work before, which is, you know, basically browbeating and shaming people into healthier behaviors that did not work in the past. And yet we are sort of attempting to revive that, and part of that is a reaction to the fact that trying to move away from that also hasn’t seemed to work either. So it really explores these, the different history of these approaches in public health. 

Rovner: That’s why public health will continue to be studied. Margot. 

Sanger-Katz: I want to suggest an article in ProPublica from Alec MacGillis called “.” I’ve been interested in the public health problem of gun deaths for many years, and I have to admit that Alec in the story has tackled an issue that I just wasn’t watching. I think it’s, like, one of these other things that has a little bit slipped beneath the radar, because the Trump administration makes so much news. But they, through the ATF [Bureau of Alcohol, Tobacco, Firearms and Explosives], which regulates firearms and firearms dealers, has really loosened up a lot of the restrictions that the Biden administration had put in place to try to prevent the trafficking of illegal guns onto the streets of American cities, where a lot of crime happens. And the story sort of looks at those policy changes and what it means for gun dealers and for people who buy guns. And I think it is too soon to tell whether these policy changes will have an effect on violence and gun deaths on the streets. I think it takes, in many cases, a long time for illegal guns to kind of get out there and be used for crimes. But we have been in this period of really merciful reduction in the crime rate and the murder rate in many American cities for the last few years, and I do think that Alec raises the question that if we are seeing more guns on the streets of the future, whether those declines can be sustained.  

Rovner: Liz. 

Whyte: My choice is from my colleagues Anna Wilde Mathews and Christopher Weaver at The Wall Street Journal, and it’s entitled “.” And it’s a really great look at how there are all these providers that have really exploited this new and growing segment of therapy for kids with autism, which is obviously a growing diagnosis, such that you have, you know, this mom in New Jersey who hears that she can get a no-out-of-pocket-cost treatment for her son and has someone come a few days a week, three or four hours of therapy, and winds up with a bill for more than $900,000, which is obviously a nightmare. So we had previously looked, The Wall Street Journal had, [at] Medicaid billing abuse with these autism therapy services, and found that it was a huge issue. And then this is a look at kind of the private insurance sector, where all these providers are charging private insurance a lot, and when an insurer says, No, we’re not going to pay that, some of these bills end up falling on the families, which is really tragic. About 40 large employers, covering 3.5 million people, their expenses for autism therapy doubled from 2021 to 2025, to $108 million. The Wall Street Journal looked at a bill that was $30,000 for one kid to get autism therapy for one day; it’s actually quite insane. So, kudos to my colleagues for writing about this.  

Sanger-Katz: Can I share one fact from this article that really struck me? 

Rovner: Sure. 

Sanger-Katz: One of the things that these reporters did that I thought was so smart is they documented the growth in the autism services workforce. So, the number of people who are providing this kind of behavioral therapy to children with autism is now larger than the workforce of the U.S. Postal Service. That’s according to a tweet from Derek Thompson, who compared the numbers. But it is kind of astonishing, the growth, not just in the Medicaid spending, not just in private insurance spending, not just in some of these unjustifiable bills that individuals have faced, but also that this is now a huge part of the American workforce is serving in this specific industry right now.  

Rovner: And if this story sounds familiar, it’s because we had a different autism therapy abuse story last week as one of our extra credits. It was written by Margot here, and Sarah Kliff. Yeah, a burgeoning source for reporters to plumb. My extra credit this week is a joint investigation between my colleagues here at Ñî¹óåú´«Ã½Ò•îl Health News and the AP. It’s called “Festering Infections to Untreated Cancer: ICE Detainees Describe Medical Neglect Across US.” The team of six reporters and analysts dug through court records to document that hundreds of immigration detainees in 33 states have filed suit, charging that they were denied adequate medical care. Quoting from the story, “Requests for help went unanswered for weeks, blood sugars rose, infections festered, cancers remained untreated, detainees collapsed and had seizures.” And there’s not even anyone to complain to. Officially, the administration shut down the office of the Immigration Detention Ombudsman earlier this year. The story is really infuriating and worth reading in its entirety. 

OK, that is this week’s news. Thanks to our editor this week, Stephanie Stapleton, and our producer-engineer, Francis Ying. We also had production help this week from Taylor Cook. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcasts — 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? Alice. 

Ollstein: I am on Bluesky , and on X . 

Rovner: Liz. 

Whyte: I am , and on X , and Signal: JournoLiz.80. 

Rovner: Margot. 

Sanger-Katz: I am @sangerkatz at , and on Signal. If you want to send me tips, I’m @sangerkatz.01. 

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

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This <a target="_blank" href="/podcast/what-the-health-449-medicaid-work-rules-exemptions-june-4-2026/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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Festering Infections to Untreated Cancer: ICE Detainees Describe Medical Neglect Across US /courts/ice-immigration-detention-medical-care-neglect-court-records-ap-investigation/ Tue, 02 Jun 2026 13:00:00 +0000 /?p=2243229 An Albanian man’s pain grew so unbearable, he said, he pulled out his own tooth as he languished for months in a New Mexico immigration detention center. A Honduran mother of two said she was hospitalized for a heart problem after she was denied blood pressure medications while held in Florida. A said his leg grew purple and swollen from flesh-eating bacteria when staffers at a Vermont facility did not bring him to a scheduled doctor appointment.

Hundreds of detainees across at least 33 states allege in federal suits that immigration detention facilities are failing to provide adequate medical care, an investigation by Ñî¹óåú´«Ã½Ò•îl Health News and The Associated Press found. Detainees say they didn’t get medications on time — or at all — for conditions including high blood pressure, diabetes, depression, epilepsy, Parkinson’s, and HIV. Requests for help went unanswered for weeks. Blood sugars rose. Infections festered. Cancers remained untreated. Detainees collapsed and had seizures.

U.S. jails and immigration detention centers have to meet the medical needs of the people in their charge. But the system is sagging under an influx of detentions since President Donald Trump returned to office: More than 75,000 immigrants were being detained by U.S. Immigration and Customs Enforcement , up from around 40,000 a year earlier.

Ñî¹óåú´«Ã½Ò•îl Health News and AP analyzed thousands of court cases filed since Trump’s second inauguration that use a legal route known as habeas corpus to argue people are being held illegally by ICE. The records offer a rare window into how those detained say, often under penalty of perjury, ICE is handling their medical needs. Reporters also interviewed more than 50 detainees, family members, and lawyers.

The investigation revealed that medical neglect is alleged across the sprawling detention system, including in offices not designed to house people, county jails, and quickly staged sites with nicknames such as “Alligator Alcatraz.”

ICE custody is deadlier than it has been in two decades, researchers wrote in April. The Department of Homeland Security reported 51 people had died in detention since the start of Trump’s second administration — with suicides .

Ñî¹óåú´«Ã½Ò•îl Health News and AP asked DHS to respond to the findings six days before publication, but it did not provide comment. The department’s acting chief medical officer, Sean Conley, has “it is both policy and longstanding practice for aliens to receive timely and appropriate medical care from the moment they enter ICE custody” and that the agency recruits healthcare professionals to maintain high standards. “This is better, more responsive healthcare than many aliens have ever received in their entire lives,” he has said.

Individual facilities and private prison companies contracting with DHS that responded to requests for comment said they follow ICE standards and detainees receive medical care when it is required. Some said they were unfamiliar with the allegations outlined in court documents; others blamed some detainees for lapses in their medical care.

“I have never seen such disregard or medical neglect like this anywhere,” Vardan Gukasian, a political dissident and former paramedic who spent years behind bars in Armenia, wrote in in March to contest his detention in Henderson, Nevada, as it stretched to 13 months despite health problems.

Madeleine Skains, a spokesperson for the city of Henderson, said medical care is always available at the facility and that the court had not ordered changes to his care.

Last June, as Gukasian experienced the symptoms of uncontrolled high blood pressure — dizziness, a nosebleed, and a headache — his cellmate banged on their door for help.

“When it did not arrive, the rest of the block banged on their doors,” he wrote. Gukasian was hospitalized that day.

‘Brazen Indifference to Really Obvious Problems’

The administration’s mass deportation effort has swept up during routine immigration check-ins, at traffic stops, at their homes, and in hospitals.

About have no criminal conviction. Their immigration proceedings are civil, not criminal.

“I couldn’t understand why they treated me so harshly,” said a father of six in Georgia. He said he was injured while shackled in custody when the vehicle transporting him to an Atlanta facility jolted, throwing him out of his seat and into a metal armrest. His wound became infected with E. coli, he said, because he had to sleep on a dirty concrete floor amid leaking toilets.

Like other detainees interviewed, he spoke on the condition of anonymity; they said they fear for their safety, for the safety of their families, or that speaking out would jeopardize their immigration cases. The AP and Ñî¹óåú´«Ã½Ò•îl Health News are not naming anyone identified in court documents without their consent.

Staffers at Stewart Detention Center in rural Lumpkin, Georgia, didn’t adequately respond to that man’s request for medical help, , until he passed out and was taken to a hospital about an hour away. There, he said, a doctor told him he’d narrowly escaped amputation of his left leg. Medical staff found no records of a case matching this description, according to Brian Todd, a spokesperson for CoreCivic, which runs the facility.

The 48-year-old, who moved to the U.S. from Guatemala more than two decades ago, was released in October and is now a legal permanent resident. But he is unsure if he’ll be able to return to his job in construction because, he said, he can no longer lift heavy things due to his injury.

A man in the Atlanta area was injured while in U.S. Immigration and Customs Enforcement custody and developed an E. coli infection. “I couldn’t understand why they treated me so harshly,” says the father of six U.S. citizens, who is now a legal permanent resident but did not want to be named to avoid potential retaliation against his family. (Brynn Anderson/AP)

Some detainees or their lawyers said even basic care was denied: gauze to protect an open foot wound, prenatal care for a high-risk pregnancy, a pillow to ease the pain of sleeping with advanced stomach cancer, sanitary pads for postpartum bleeding.

“I would like to believe the government has the best interest of those it holds in detention for whatever period of time,” Judge Benita Pearson, a federal judge in Ohio, said during a hearing in October concerning a 70-year-old who alleged the government lost her glasses during her arrest. “If one is unable to see due to the loss of glasses when detained, that should be fixed.”

, who worked for ICE and now serves as a special adviser to the American Bar Association, said case law requires the government to treat people in immigration detention with the same care it affords those in traditional jails awaiting trial. But administrators are granted discretion and medical care standards vary.

Detainees are frequently moved across the country, often without warning, interrupting treatment. A woman from El Salvador said she missed a week of HIV medication when she was transferred from Colorado to a county jail in Wyoming.

A Russian man wrote that, while detained in Texas, he saw a gastroenterologist about his painful gallstones and scheduled an appointment with a surgeon. “Unfortunately, I never got to see him, due to my being moved around various detention centers.”

Advocates say that even obvious disabilities, like legal blindness, are ignored.

A detainee who lost one eye and had severe glaucoma in the other required twice-daily drops to maintain what vision remained. But, he said, some days the drops never came.

“Now I can only see a little bit straight in front. It now often looks like I’m seeing through gauze,” the man wrote in a court declaration. “This makes me very afraid that one of these times I am going to open my eyes and not be able to see anything at all.”

He wrote that he was scared he wouldn’t be able to see his infant son grow up.

“It’s just sort of brazen indifference to really obvious problems, things you would have thought absurd a decade ago — like the fact that you can’t see,” the man’s attorney, Brian Hoffman, said. “Before, you could attempt to work with folks on the government side and maybe shame them into doing the right thing. Now, it’s sort of like anything you want done you have to go to court and sue over.”

Even court orders aren’t always enough. One California judge ordered the government to take a man showing signs of prostate cancer to a specialist for diagnosis and treatment. Records show they did not take him.

Lawyers representing ICE told the judge that officials missed the appointment because of an “internal scheduling error.” CoreCivic, which runs that facility, said it was unable to comment on active litigation.

A Surge in Cases

When immigrants file habeas corpus petitions, they exercise a right to challenge unlawful imprisonment that dates to .

More than 40,000 such petitions have been filed during Trump’s second term, fueled by decisions last year to deny bond to many people held on immigration charges. Judges are split on whether that’s legal; the question appears headed to the Supreme Court.

Many habeas claims , but judges typically cite reasons unrelated to the medical neglect described in the petitions, such as detainees’ being held too long before being deported.

The more than 300 medical neglect claims found in this investigation represent a fraction of the problem. The details of habeas corpus cases are often hidden due to a federal rule barring the public from viewing such documents online. Ñî¹óåú´«Ã½Ò•îl Health News and AP obtained some documents from courthouses and received records on 4,400 cases from , a project of the nonprofit Immigration Justice Transparency Initiative. But tens of thousands more remain largely inaccessible.

Some judges have written that the habeas process is not how to raise allegations of medical neglect and have declined to release detainees over those claims. Not every detainee who believes they experienced medical neglect files a habeas petition or cites their medical issues if they do.

Jose-Antonio Segismundo’s petition made no mention of being unable to see an oncologist for the cancer in his abdomen while detained for more than seven months at the Florida detention facility known as Alligator Alcatraz and Folkston D Ray ICE Processing Center in Georgia. Medical records in his court filings show he was arrested about five weeks before his scheduled appointment with a cancer specialist.

His wife, Maria Jose Gonzalez, said he didn’t receive any treatment even though she sent his medical records and explained his condition to officials at Folkston. When his stomach pain erupted, often suddenly and intensely, she said, they gave him Tylenol.

Geo Group, which runs Folkston, follows ICE standards and provides healthcare and access to off-site medical specialists when needed, spokesperson Christopher Ferreira said.

This spring, Segismundo, 48, was deported to Mexico, a country he left nearly 30 years ago, Gonzalez said. Now, she said, he will have to restart his search for care in the Oaxacan village where he grew up.

Maria Jose Gonzalez of Wimauma, Florida, holds a photo of her husband, Jose-Antonio Segismundo, who was detained in U.S. Immigration and Customs Enforcement custody for more than seven months in Florida and Georgia before being deported to Mexico. Medical records show he was arrested about five weeks before his scheduled appointment with a specialist to treat his abdominal cancer. (Chris O'Meara/AP)

Watching Loved Ones Deteriorate

Detainees receiving inadequate healthcare have little recourse. The Department of Homeland Security last year gutted the Office of the Immigration Detention Ombudsman. In early May, it shut the office entirely, arguing that Congress didn’t fund it.

Previously, ombudsman staffers could help facilitate medical care or look into complaints of neglect, according to Matt Boles, an immigration attorney in Georgia. Now, he said, there’s no one to call.

Meanwhile, detainees’ families said they feel helpless, making desperate calls to facilities, the government, and their legislators while watching their loved ones deteriorate.

Riya Khan saw her mother get sicker at the California City Detention Facility, which is owned by CoreCivic. When she visited a week after her mother arrived at the facility in the Mojave Desert, Riya said, the 64-year-old woman stumbled into her seat. She was shaking and her breathing was labored.

Masuma Khan came to the U.S. from Bangladesh in 1997. She has no criminal history, her records say, and was detained in October when she showed up for her regular ICE check-in.

For the month she was detained, according to her daughter, she only intermittently received her medications for conditions including high blood pressure, hypothyroidism, and prediabetes. CoreCivic treats chronic conditions in line with applicable medical standards, Todd said.

“Nothing matters more to CoreCivic than the health, safety and well-being of the people in our care,” Todd said.

Khan said she got her asthma medication for the first time two days before she was released and that her eye drops for glaucoma never arrived. Staffers told Khan she needed to buy some of her medications from the commissary but it didn’t stock them, her daughter said.

Before ICE detained Masuma Khan, she made friends with everyone, her daughter said. She had worked for years at Lucky Boy, an iconic Pasadena fast-food restaurant, and in her free time fed birds and left out fruit for bees that visited her apartment’s balcony.

Now she’s too scared to go outside. She still must regularly check in with ICE, and she’s terrified each time.

Masuma Khan (center) waits in line with her attorney Laboni Hoq (left of Khan) to enter a federal building in Los Angeles for an appointment on April 21. (Jae C. Hong/AP)
Khan (second from right in the front row) and her daughter, Riya (fourth from right in the front row), pose with supporters outside a federal building in Los Angeles on April 21. (Jae C. Hong/AP)
Khan (right) came to the U.S. from Bangladesh in 1997 and was detained for a month after she showed up for a regular check-in with U.S. Immigration and Customs Enforcement in October. Here, she hugs her daughter, Riya (left). (Jae C. Hong/AP)
A “Welcome Home” balloon that was left at the front door of Khan’s apartment in Altadena, California, after she was released from an immigration detention facility. (Jae C. Hong/AP)
Khan’s daughter says that her mother has nightmares and is scared to go outside after being held at an immigration detention facility for a month in 2025. (Jae C. Hong/AP)

    A Stroke on a Video Call

    Previously, detainees with serious medical needs would likely have been released on humanitarian parole, in part to avoid the cost of their care, Vermont attorney Andrew Pelcher said.

    In fiscal year 2023 — before the detained population soared — ICE spent more than $390 million on healthcare for detained noncitizens, according to its to Congress. In May, Todd Lyons, then acting director of ICE, said at a conference that the agency had already spent “almost half a billion dollars” on detainee healthcare this year.

    Now, under “mandatory detention,” people are staying locked up with serious — and expensive — conditions.

    A Romanian citizen underwent several heart surgeries, including an emergency triple bypass in April 2025, before he was arrested in July. As part of his recovery, the 52-year-old was required to take 16 daily medications. While at an ICE field office in Baltimore, his court filings allege, he went two days without any medication before officials moved him to a facility in New Jersey.

    He was hospitalized three times while detained, complaining of chest pains — in part, medical records and court documents say, because despite “countless requests,” the detention center did not provide all his medications. Hospital discharge papers cited by his lawyer show he received only eight of the 16 medications after his second release from the hospital.

    “Can you please talk to the ICE facility to make sure they give him his medications?” his treatment providers wrote in medical records included in his court filings. “He was admitted last week for chest pain and today he was readmitted again for chest pain secondary to non compliance for medications.”

    Several weeks later in August, he had a stroke while on a video call with his daughter, according to court filings. “He was struggling to breathe, and was pointing at his chest where he was again experiencing pain, and suddenly stopped speaking.” His daughter screamed for help through the video monitor, according to his petition. “Eventually an officer came in to assist him and cut the feed.”

    The man lost his ability to speak for four days, the document says. He was returned to detention, where he remained until a federal judge ordered his release in November.

    Khan holds medication she takes daily. While detained, she says, she only intermittently received her medications for multiple conditions including high blood pressure, hypothyroidism, and prediabetes. (Jae C. Hong/AP)

    Impossible Choices

    Cassandra Amador waits for the phone to ring every morning, desperate to ask her husband the question that’s woken her up every night for months: “Did you get your medicine?”

    Her husband, Pedro Javier Amador Gutierrez, 36, has high blood pressure and depends on the state-run facility in Florida nicknamed “Deportation Depot” to administer the prescriptions that have kept him alive for years. Many mornings, he tells his wife he did not get them.

    When she talks to him, she said, he sounds weaker and more scared every day, not like the upbeat man who would take her kids out for ice cream.

    “You can hear in his voice how he feels,” she said.

    Now, she said, he’s considering returning to Cuba, which he fled because of political persecution, out of fear that he will die in detention without his medicines. Amador and her children would go with him, she said, even though she was born in New Jersey, has never been to Cuba, and doesn’t speak much Spanish.

    But he’s already collapsed twice at the Baker Correctional Institution in Sanderson, Florida, his wife said. She’s terrified that the next time, he won’t get up.

    Methodology

    Ñî¹óåú´«Ã½Ò•îl Health News and The Associated Press sifted through thousands of immigration habeas corpus claims to find allegations of medical neglect from people detained by U.S. Immigration and Customs Enforcement during the second Trump administration.

    Without a comprehensive, publicly available dataset of medical complaints by those in ICE custody, we used immigration habeas corpus claims to identify detainees’ healthcare-related allegations raised in federal court. Although the intended purpose of habeas corpus is to challenge the legality of a petitioner’s detention — rather than conditions of their confinement — these filings sometimes include detainees’ claims of inadequate healthcare.

    But habeas corpus filings are not always publicly available. Federal rules restrict how members of the public can access habeas petitions filed by people in immigration detention. For most of these cases, court websites publish only court orders and dockets describing other filings. The initial petitions are available only through in-person visits to federal courthouses across the country. Habeas Dockets, a project of the nonprofit Immigration Justice Transparency Initiative, coordinates a nationwide network of volunteers to gather these petitions and make them available online.

    Ñî¹óåú´«Ã½Ò•îl Health News and AP analyzed the dockets of roughly 33,000 cases filed by detainees from Jan. 20, 2025, through March 2026. The vast majority of cases had only basic procedural information, like dates of court filings and rulings. Only about 4,400 included the original petitions.

    We also gathered a few dozen case files from courthouses, lawyers, and the Massachusetts federal district court website, which posts most petitions under a unique standing order.

    We ran keyword and semantic searches of court records, including petitions, motions, and orders, for terms and phrases potentially related to medical neglect, such as surgery, medications, inadequate medical care, and treatment for chronic conditions such as diabetes and high blood pressure.

    We found about 500 cases potentially alleging medical neglect. At least two reporters reviewed each case manually, yielding more than 300 cases containing specific allegations in sworn filings of delayed, denied, or deficient healthcare.

    To be conservative, we excluded dozens of cases that alleged inadequate medical care but lacked specifics, for example a petitioner writing, “I have been sick and don’t get proper treatment,” or a judge noting a petitioner “complains that ICE is ignoring his medical problems.” We also excluded cases in which petitioners claimed only that they were denied special diets, exercise, or other accommodations that they said were key to managing their health conditions, such as a petitioner writing, “I suffer from Parkinson’s and cannot properly exercise,” or claiming that the food provided was unfit for a person with diabetes.

    The cases we analyzed were neither randomly selected nor representative of immigration habeas filings nationwide. The claims were not independently verified. Many filings are not publicly available, and not all detainees raise medical concerns in court, so our account of cases represents a limited window into the landscape of claims, rather than a comprehensive picture.

    Associated Press journalists Garance Burke, Valerie Gonzalez, and Tim Sullivan as well as Ñî¹óåú´«Ã½Ò•îl Health News correspondent Kate Wells contributed to this report.

    This report is a collaboration between The Associated Press and Ñî¹óåú´«Ã½Ò•îl Health News.

    Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

    This <a target="_blank" href="/courts/ice-immigration-detention-medical-care-neglect-court-records-ap-investigation/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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    Amid Ebola, Hantavirus Outbreaks, Democrats Decry Trump’s Health Cuts /public-health/ebola-hantavirus-trump-cuts-federal-response-infectious-disease-usaid-africa/ Mon, 01 Jun 2026 09:00:00 +0000 /?p=2243231 The Trump administration’s deep cuts to federal health agencies have become a political liability after a deadly outbreak of hantavirus aboard a cruise ship and the spread of an even more fearsome disease, Ebola, in Africa.

    At least that’s the way many Democrats see it.

    They have seized on the situation to charge that the U.S. is ill prepared to respond to outbreaks — let alone a pandemic — after President Donald Trump and funding for public health infrastructure and pandemic preparedness. Infectious disease specialists have called on the White House to reverse cuts and rejoin the World Health Organization.

    The White House, meanwhile, is on the defensive, trying to reassure a pandemic-weary public that the federal government can still mount effective responses to infectious disease outbreaks.

    The FDA and the Centers for Disease Control and Prevention as part of an effort led by billionaire businessman Elon Musk and the Department of Government Efficiency, or DOGE, that also resulted in the cancellation of billions of dollars in federal contracts and grants.

    “These outbreaks are unfolding at a time when the U.S. public health infrastructure is under significant strain,” said , an emergency medicine physician and former Baltimore health commissioner. “The CDC currently lacks a director, the FDA lacks a director, there is no surgeon general, and many leaders with outbreak response management experience have left the federal government.”

    The U.S. government has and is monitoring potential exposures to hantavirus after an outbreak on a cruise ship. It is also implementing new restrictions for foreign travelers amid an Ebola outbreak in Uganda and the Democratic Republic of Congo that has grown to more than . While neither situation is seen as likely to become a global pandemic, Democrats and infectious disease leaders have seized on the outbreaks to criticize the effects of the DOGE cuts and other administration public health policies.

    The hantavirus cluster occurred on the , an expedition ship that left Argentina on April 1 for a monthlong sojourn with almost 150 people aboard. The earliest cases, including two deaths, were on May 2. infected passengers have died. Hantavirus is typically spread to people from rodents, but this version, known as the , can be passed person to person.

    The Ebola outbreak has captured public attention, though no cases have been confirmed in the U.S. The virus — a rare strain called Bundibugyo, against which there are no proven vaccines or treatments — spread undetected for weeks, prompting WHO Director-General Tedros Adhanom Ghebreyesus to say he’s concerned about the “” of the outbreak. , including a doctor exposed to the virus, were evacuated to Germany by the U.S. State Department.

    Democrats Criticize Cuts

    Some Democrats are pressing the administration to rejoin the WHO and restore funding to federal agencies. A lawsuit is ongoing over the dismantling of the U.S. Agency for International Development, the primary agency for providing foreign assistance. Core USAID activities included efforts to build local outbreak detection and prevention capacity in vulnerable regions, including in the Democratic Republic of Congo.

    Sen. Chris Murphy (D-Conn.) noted the emerging threats associated with the rising Ebola case count, posting : “We know how to stop outbreaks like this. But Trump chose not to stop it. He destroyed our global health team, deliberately exposing us.”

    Sen. Dick Durbin (D-Ill.) said May 21 on X that the Trump administration’s “sweeping and self destructive foreign aid cuts” left the U.S. and Congo struggling to contain the Ebola outbreak.

    “An utterly predictable result from the chaos of DOGE,” he said.

    And, in the wake of the hantavirus outbreak, Senate Minority Leader Chuck Schumer of New York to rehire fired outbreak-response workers, restore funding at the CDC and Department of Health and Human Services, and rejoin the WHO’s global outbreak warning network.

    “The Trump administration’s gutting of America’s public health preparedness has made the recent hantavirus outbreak even more alarming,” Schumer said May 12 on the Senate floor.

    Federal agencies pushed back on criticisms about the early response to hantavirus, with officials insisting on social media, at press events, and in TV appearances that their work was appropriate and effective.

    The federal government is conducting a coordinated, interagency response, HHS spokesperson Emily Hilliard said. Claims that federal cuts have imperiled the response or future pandemic preparedness are “completely inaccurate,” she said.

    The CDC and State Department say they are ensuring rapid viral testing is available for the Ebola outbreak and are actively deploying resources through State Department country offices in Congo and Uganda.

    “I want to assure you that CDC and our federal partners are working around the clock to ensure our information is accurate and that action plans are being implemented immediately,” Satish Pillai, who is leading the CDC’s Ebola response, said in a .

    Trouble Spots

    The criticism isn’t coming just from Democrats. Public health officials also say that Trump administration actions have hampered the response to both outbreaks and that the cuts to USAID helped set the stage for the spread of Ebola.

    The International Rescue Committee, which helps people affected by humanitarian crises, has said funding cuts by the administration in March 2025 prompted a reduction in disease surveillance systems in the epicenter of the Ebola outbreak.

    The U.S. had funded the surveillance, as well as outbreak preparedness efforts to prevent infections, with hand-washing stations, showers, latrines, and waste management. The committee said it had to cut programming.

    “Years of underinvestment and recent funding cuts have left many health facilities without adequate protective equipment, surveillance capacity, or frontline support needed to respond quickly and safely,” Heather Reoch Kerr, the committee’s country director in Congo, .

    The federal government’s overall response to the outbreak, including the decision not to fly Americans exposed to Ebola to the U.S. for treatment, stands in sharp contrast with previous responses to Ebola, some epidemiologists and former health officials say. It also could discourage other medical professionals from traveling to the region to help.

    During the 2014-15 outbreak in West Africa, the federal government eventually deployed Army and Navy technicians and other service members to process blood tests, build medical labs, and train local healthcare workers.

    USAID emergency response teams also played a key role in the on-the-ground response to that Ebola outbreak, from building treatment rooms to handling burial of the dead, Ron Klain, during the Obama administration, said on NPR.

    Michael Osterholm, the director of the Center for Infectious Disease Research and Policy at the University of Minnesota, said USAID was “a key support for programs.”

    “The infrastructure in Africa has been cut with the cuts at USAID,” he said. “It’s making it more difficult.”

    The United States’ ability to respond to a real pandemic is “a mess” because of the cuts and the administration’s stance on mRNA vaccines, the technology behind covid shots, Osterholm said. The White House last year canceled nearly for mRNA vaccine development despite a lack of evidence of any health risks.

    The rapid technology would enable faster worldwide vaccine production in the case of a pandemic compared with more traditional vaccine development, Osterholm said.

    have also over the U.S. response to hantavirus. For example, the CDC on May 8 issued a about the cluster of hantavirus cases on the cruise ship in the Atlantic, but the alert came after some passengers had already . in late April on commercial flights.

    And the agency’s on the outbreak aboard the took place May 9. The phone briefing with reporters came five days after the WHO had alerted the public about the situation.

    “The first press conference was after this was international news,” said Wen, the former Baltimore health official.

    The CDC has defended its response to hantavirus. It has required U.S. passengers of the cruise ship to remain in a quarantine facility and has assured the public that the overall health risk here at home is low.

    “The country is prepared. The CDC is focused on it,” Mehmet Oz, a physician and head of the Centers for Medicare & Medicaid Services, on May 11.

    Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

    This <a target="_blank" href="/public-health/ebola-hantavirus-trump-cuts-federal-response-infectious-disease-usaid-africa/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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    Efforts To Understand the Nation’s Drugged Driving Problem Stall Under Trump /public-health/drugged-driving-impairment-research-stalled-trump-policies/ Tue, 19 May 2026 09:00:00 +0000 /?p=2235912 GRAND JUNCTION, Colo. — Two state transportation workers were replacing a sign on the shoulder of U.S. Highway 6 in western Colorado one morning when a Jeep Grand Cherokee swerved off the road and struck them.

    The workers, Nathan Jones and Trent Umberger, died in the September 2024 crash, as did a passenger in the Jeep. Tests found that the driver, Patrick Sneddon, then 59, had oxycodone and six times Colorado’s presumed impairment threshold for THC — the psychoactive compound in cannabis — in his blood. He pleaded guilty and is serving on three counts of vehicular homicide and other charges.

    “Our four children are completely crushed without their Dad,” wrote Kristine Umberger, the wife of Trent, in a victim impact statement for the local district attorney. “We have lost our ability to live life like we used to.”

    Federal highway safety officials have long tracked the role of alcohol in fatal crashes, but they don’t track deaths that involve a driver under the influence of drugs or a combination of drugs and alcohol.

    That discrepancy is partly due to the challenges of proving impairment, since some drugs remain detectable for weeks after use. Sneddon’s attorney, Jennifer Gregory, said a driver can be presumed impaired under Colorado law if their blood contains 5 nanograms of THC or higher per liter. But that “permissible inference” threshold is different from a legal limit — such as the 0.08% blood alcohol content limit — and the level set by Colorado is not supported by published scientific studies, Gregory said.

    Such information could prove useful as the nation struggles with , the on marijuana, and more than 40 states have legalized or decriminalized some forms of cannabis and .

    “Impaired driving is a top public safety issue that extends beyond alcohol,” said Sean Rushton, a spokesperson for the federal highway safety agency, which is tackling the issue collaboratively, with resources to ensure a “comprehensive and coordinated approach.”

    But President Donald Trump’s cuts to the federal workforce since he returned to office in 2025, along with dwindling federal investments, mean that efforts to expand and improve the tracking of impaired-driving deaths nationwide have slowed.

    The gap in data can be significant. In Mesa County, Colorado, where Jones and Umberger were killed, the coroner’s office tracks various forms of impaired-driving fatalities. From 2017 through 2024, a third of traffic deaths involved alcohol alone, according to data from the county coroner’s office.

    When drugs are factored in, nearly half of Mesa County’s traffic deaths over the same period involved a driver intoxicated with alcohol, drugs, or a combination, according to the coroner’s reports.

    “If you want to solve a problem, you need to understand the problem,” National Transportation Safety Board researcher Jana Price said. “If you only know that alcohol is present, then it limits your ability to fully understand what might have been impairing a person or a population of people. It trickles into the countermeasures that we use as a society to address the problem.”

    Identifying a Hidden Issue

    NTSB researchers that, across four geographical samples of roughly 26,000 drivers, about half of those arrested for impaired driving and more than a quarter of drivers killed in crashes tested positive for more than one substance, such as cocaine, sedatives, and antidepressants. The analysis also found that only four states and the District of Columbia drug-tested more than 60% of fatally injured drivers in 2020.

    Those findings led the NTSB, an independent federal agency that investigates major incidents, to make a series of recommendations to the and states to establish a comprehensive, nationwide dataset on impaired driving.

    But hurdles remain to creating such a system. Fatality and injury reports submitted to the NHTSA database often feature missing or erroneous data, according to a .

    Varying state laws around testing arrestees and decedents for drugs make getting uniform data difficult, according to , a former employee of NHTSA’s impaired-driving division, as does a lack of proven metrics like blood alcohol content to measure drug impairment, not just the presence of a drug.

    “It’s a slow process, which is incredibly difficult when you know that each day that passes is risking a lack of safety for however many people facing the potential of a drug-impaired-driving crash,” Cash said. “But some progress is better than no progress.”

    Acknowledging how long those efforts will take, the NTSB also recommended that NHTSA build an interim surveillance system that would use data from trauma centers to create a national sample of crash-involved impaired drivers.

    The agency made some headway, reporting in 2023 that it was conducting its own study with the help of 11 trauma centers and medical examiner offices. It also helped California establish a 19-month statewide surveillance system, which NHTSA will use to evaluate the feasibility of a nationally representative system.

    Such programs are useful for public awareness and for improving the ability of police to understand drugged driving patterns that can help them tailor enforcement, said , a University of California-Davis associate professor who researches toxicology and was involved in the California program. But some trauma centers, especially in rural areas, often lack the research infrastructure necessary for round-the-clock drug testing and participation.

    Still, it’s possible, and he said the benefit is apparent in the findings from California’s surveillance system.

    “If you go out there and tell people that 44% of drivers who ended up in the ER from a car accident had at least one potentially impairing substance in their blood at the time of the accident, that gets people’s attention,” Chenoweth said.

    Shrinking Research Teams

    Since NHTSA’s update to the NTSB three years ago, however, the agency has yet to follow up on the recommendation. Staff cuts and departures at NHTSA last year paint a poor outlook for change.

    From 2021 to 2024, the agency . At the end of Trump’s first year in office, NHTSA had dropped to about 550 people due to government-wide cuts and people leaving on their own.

    Cash, who now works for the nonprofit Governors Highway Safety Association, was one of five employees who left NHTSA’s last year. That leaves just two staff members in the division, she said.

    Ian O’Dowd, a former employee in NHTSA’s , said he was part of a team of 16 people who studied, in part, impaired driving. Only three or four team members are still with the agency, he said.

    “At some point, it becomes unwieldy for a handful of people to be managing all of the research work going on,” O’Dowd said.

    NHTSA communications director Sean Rushton said the agency has “both the financial and personnel resources necessary to support its programs with multiple offices carrying out this work collaboratively, ensuring a comprehensive and coordinated approach.”

    The 2021 infrastructure law, passed under the Biden administration, increased funding for NHTSA’s state highway safety program from about $667 million in 2021 to nearly $953 million this year.

    The law included $750 million to modernize crash-data programs, but as of January over $475 million was unused. The funds expired in September unless they were obligated through a signed agreement.

    A report by the U.S. Government Accountability Office found that nearly a quarter of entities awarded grants in 2022 had not received a signed agreement when surveyed between December 2024 and March 2025. It also found that over 1 in 5 grantees reported that obtaining timely replies from Department of Transportation staff was moderately or very challenging.

    With the Biden-era infrastructure law expiring later this year, Congress could extend the unused crash-data fund or implement a new approach to impaired driving.

    In mid-April, House Transportation and Infrastructure Committee Chairman Sam Graves (R-Mo.) said proposed legislation — less than half of the current bill’s $1.2 trillion — with a more “traditional” focus on roads and bridges.

    The bill has amid negotiations for more funding, leaving future support uncertain.

    “Certainly, we are always hoping that there will be an increase in the amount of money available to do this work,” Cash said. “Whether or not that will happen this year, I don’t know.”

    Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

    This <a target="_blank" href="/public-health/drugged-driving-impairment-research-stalled-trump-policies/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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    2235912
    FDA Blocked Melanoma Drug as Confusion Reigned Under Makary /health-industry/fda-blocked-melanoma-drug-marty-makary-confusion-reigned/ Fri, 15 May 2026 09:00:00 +0000 /?p=2238195 The FDA’s to withhold approval of a new skin cancer treatment fell like a hammer on doctors who treat melanoma and patients who saw that the drug had prolonged the lives of a third of the participants in a clinical trial.

    “It was devastating news,” said Trisha Wise-Draper, a dermatologist at the University of Cincinnati who had patients enrolled in the trial.

    “This is life or death for maybe 2,000 patients,” added Eric Whitman, medical director of the Atlantic Health System’s oncology service. A assailed the ruling, noting that it “will have a chilling effect on drug development.”

    Despite the benefit to some patients, oncologists and pharmaceutical industry analysts say there were legitimate concerns about the treatment, called RP1, that may have led the FDA to reject it in any event. The company, they noted, had ignored repeated FDA suggestions that it change the design of the trial used to seek approval for the medication.

    The FDA’s decision would have raised few eyebrows before the current administration took power. But Marty Makary, who took charge as commissioner 13 months ago, altered the agency’s culture and damaged the trust it had built over decades while regulating 20% of U.S. consumer spending, said Steven Grossman, a regulatory consultant and former Health and Human Services official.

    “People have to speculate about the standards and processes by which the agency makes decisions,” he said. “And that uncertainty is bad for everybody — patients and sponsors and investors.”

    Under Makary — who resigned this week — senior officials have or some at the behest of President Donald Trump or HHS Secretary Robert F. Kennedy Jr., ignoring the advice of agency professionals. In defending his actions, Makary often eschewed the agency’s traditionally measured language about its decisions.

    In response to criticism for rejecting the melanoma treatment, for example, Makary accused its manufacturer, Replimune, of “corruption,” saying it was “engaging in corporate spin” to make the FDA look bad.

    “I don’t work for Replimune. I work for the American people,” Makary said in a May 5 interview on CNBC. Kennedy backed him up during a congressional budget hearing in which Kennedy mistakenly claimed that patients in Replimune’s clinical trial had also received chemotherapy.

    Makary did not respond to requests for comment.

    “All the norms have been thrown out the window, so we don’t know what underlines an agency decision,” said , a former FDA staffer and Senate aide to Sen. Edward Kennedy who’s now a pharmaceutical industry consultant in Boston. “Even when there are legitimate scientific and regulatory reasons why a drug will not be approved, we’re left guessing whether it’s legitimate grounds or just a political play.”

    A Doomed Cancer Drug

    Melanoma is the fifth most commonly diagnosed cancer in the United States, with about 112,000 new cases each year. The American Cancer Society projects that from melanoma this year in the U.S. If Replimune’s treatment, RP1, worked as well as it did in the clinical trial, Whitman said, as many as 2,500 of those patients could be saved.

    RP1 is a genetically engineered virus designed to destroy tumor cells and alert the immune system to swing into action against them. Replimune sought accelerated approval — a sort of shortcut that allows a product to enter the market while a larger confirmatory trial takes place — by presenting data that showed a third of 140 people in the trial had their tumors shrink or disappear. But the agency had warned Replimune in July that it risked denial unless it changed its development plans. In particular, the FDA noted that the trial had no control arm to compare RP1 to an approved melanoma treatment. Instead, all patients were given RP1 along with Opdivo, a type of immunotherapy.

    Replimune’s scientists don’t entirely understand how the drug works, but research indicates that, in addition to destroying cancer cells, it releases chemicals that revive Opdivo’s capacity to stimulate the immune system. The company argued it would be unethical to give Opdivo alone as a control arm, because all the patients entered in the trial had already stopped getting better while taking only Opdivo or other drugs in its class.

    “Having a control arm would have been unethical,” Wise-Draper said. Some of her patients responded extremely well to RP1 and no longer have evidence of melanoma, she said.

    Replimune currently has a larger trial that includes a control arm, but “the bigger question is whether the company will survive,” Whitman said. The FDA-accelerated approval would have persuaded investors to provide enough cash to finish the larger trial, he said.

    Replimune did not respond to repeated requests for comment. But it is firing more than half its staff and closing some operations in the wake of the FDA ruling.

    RP1 wouldn’t have been the first melanoma drug approved based on a single-arm trial. Keytruda, the best-selling Merck cancer drug, was approved to treat melanoma some 12 years ago based on such a trial design. But in its denial statement, the FDA said it wasn’t convinced that the positive effects of the combination regimen were all due to RP1 and not partly to Opdivo.

    Replimune arguably could have found an ethical way to set up a control arm for its treatment, Kim said. On the other hand, the FDA could have “given them a provisional yes” with accelerated approval, he said. The whole point of the three-decade-old accelerated approval program is to “take a gamble,” Kim said. The agency’s statement, stressing the company’s methodology over the result, “is a recalibration of how confident sponsors can be with similar studies,” he said.

    Vinay Prasad’s Final Days at FDA

    Much of the criticism of the FDA under Trump has focused on Vinay Prasad, who was fired then rehired last summer and held various leadership roles at the agency. Prasad, an oncologist known for critiquing the statistical bases of studies, repeatedly intervened in approval processes for drugs and vaccines normally decided by lower-ranking FDA professionals.

    Prasad, who did not respond to requests for comment, resigned for good May 1, three weeks after the Replimune decision. “There’s this lingering question of whether this was Vinay’s last stand, or an objective decision made by careful scientists,” Kim said.

    Makary ran afoul of Trump administration officials over various decisions, the last being his reluctance to approve flavored vapes for smoking cessation. Trump’s anti-abortion supporters wanted him ousted for allowing a generic form of mifepristone on the market, and for failing to speed up studies they hoped would lead to the abortion drug’s withdrawal from the market.

    But in the industries regulated by the FDA, ranging from gene therapy to vaccines and cancer, officials are frustrated by the agency’s uncertain direction. In past administrations, the agency generally swung on a narrow arc between loosening and tightening requirements for drug approvals. Under Makary, “it’s been swinging in every conceivable direction,” Grossman said.

    “It’s very inconsistent; it’s all over the place,” Whitman said. “The inconsistency is part of the concern.”

    During his tenure, Makary made a series of categorical statements that either claim credit for progress made during earlier administrations or exaggerate the agency’s ability to move forward on goals.

    For example, he set a goal of , which is considered impractical at the moment, Kim said, and moved to artificial intelligence at the FDA — prematurely, critics say. Makary and Prasad also promised to reduce the from two to one. FDA statutes require two well-controlled clinical trials for drug approvals, but exceptions to that rule are already frequent.

    “The FDA is sending signals that it wants to even further reduce the evidence needed to support drug approval,” said Aaron Kesselheim, a Harvard Medical School professor and an expert on the drug industry. “Of course, if we’re talking about vaccines, the total opposite is the case. FDA has been taking real steps to make it harder to get vaccines approved.”

    The FDA fired about 4,000 staffers at the start of the Trump administration. Makary promised to hire thousands back, but considering the upheavals at HHS and the FDA, these positions may be hard to fill. “What magic trick will get that done?” Grossman asked.

    “The unfortunate thing is that there has been so much chaos at FDA that this Replimune decision, which may have needed to happen, has gotten mired in the controversy,” said Evan Seigerman, leader of healthcare research at BMO Capital Markets.

    Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

    This <a target="_blank" href="/health-industry/fda-blocked-melanoma-drug-marty-makary-confusion-reigned/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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    2238195
    In Search of a New FDA Commissioner /podcast/what-the-health-446-fda-marty-makary-abortion-pill-may-14-2026/ Thu, 14 May 2026 18:00:00 +0000 /?p=2237552&post_type=podcast&preview_id=2237552 The Host
    Julie Rovner photo
    Julie Rovner Ñî¹óåú´«Ã½Ò•îl Health News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of Ñî¹óåú´«Ã½Ò•îl Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

    As had been rumored for weeks, Marty Makary is out as commissioner of the FDA after a chaotic 13 months presiding over drama in every corner of the agency. That leaves Robert F. Kennedy Jr.’s Department of Health and Human Services with three senior vacancies: FDA commissioner, surgeon general, and director of the Centers for Disease Control and Prevention. All must pass through the Senate committee chaired by Sen. Bill Cassidy (R-La.), who has had a troubled relationship with Kennedy and President Donald Trump.

    Meanwhile, opponents of abortion remain unhappy with the Trump administration, demanding a more robust federal crackdown on abortion in general and the abortion pill in particular. The administration, meanwhile, has been pushing policies to encourage families to have more children.

    This week’s panelists are Julie Rovner of Ñî¹óåú´«Ã½Ò•îl Health News, Rachel Cohrs Zhang of Bloomberg News, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.

    Panelists

    Rachel Cohrs Zhang photo
    Rachel Cohrs Zhang Bloomberg News
    Alice Miranda Ollstein photo
    Alice Miranda Ollstein Politico
    Lauren Weber photo
    Lauren Weber The Washington Post

    Among the takeaways from this week’s episode:

    • Makary is leaving his role as FDA commissioner after a troubled tenure. While tensions over granting approval for fruit-flavored vapes appear to have been the last straw, Makary led an agency in near-constant turmoil that cast a shadow over its employees and the industries it oversees. Kyle Diamantas, who will serve as acting director, is not a doctor but rather a lawyer with ties to the Trump family.
    • The fate of telehealth access to the abortion pill mifepristone hung in the balance this week after the Supreme Court extended its stay on a lower-court order halting that access. Should the court affirm that lower-court ruling, it would be the biggest change to abortion access nationwide since it overturned the constitutional right to an abortion in 2022.
    • And the hantavirus outbreak on a cruise ship continues to transfix the globe, with many American passengers in quarantine. The situation highlights the lack of U.S. engagement in global public health, as well as the slashing of federal resources at the CDC under the Trump administration.

    Also this week, Rovner interviews Sen. Tammy Baldwin (D-Wis.), a senior member of the Senate Health, Education, Labor, and Pensions Committee and the Senate Appropriations Committee.

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

    Julie Rovner: ProPublica’s “,” by Rob Davis. 

    Rachel Cohrs Zhang: The Wall Street Journal’s “,” by Liz Essley Whyte and Josh Dawsey.  

    Alice Miranda Ollstein: Politico’s “,” by Katherine Tully-McManus.  

    Lauren Weber: Stat’s “,” by Lev Facher and Isabella Cueto. 

    Also mentioned in this week’s podcast:

    • Bloomberg News’ “,” by Rachel Cohrs Zhang.
    • The Washington Post’s “,” by Lena H. Sun.
    Click to open the transcript Transcript: In Search of a New FDA Commissioner

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

    Julie Rovner: Hello from KFF Health News and WAMU public radio in Washington, D.C. Welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for Ñî¹óåú´«Ã½Ò•îl Health News, and, as always, I’m joined by some of the best and smartest health reporters covering Washington. We’re taping this week on Thursday, May 14, 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 videoconference by Lauren Weber of The Washington Post. 

    Lauren Weber: Hello, hello. 

    Rovner: Rachel Cohrs Zhang of Bloomberg News. 

    Rachel Cohrs Zhang: Hi, everybody. 

    Rovner: And Alice Miranda Ollstein of Politico. 

    Alice Miranda Ollstein: Hi. 

    Rovner: Later in this episode, we’ll have my interview with Wisconsin Democratic Sen. Tammy Baldwin. But first, this week’s news. 

    Well, as we foreshadowed last week, Marty Makary’s tenure as commissioner of the Food and Drug Administration has come to an end. It’s not entirely clear whether he was fired or whether he resigned or whether he was forced to resign, but what is clear is that his 13-month tenure at the helm of the agency that regulates $1 of every $5 worth of consumer products in the U.S. was chaotic, to say the least. Quoting from the excellent  on his exit, “He had upset advocates for vaping and rare-disease patients, antiabortion groups, and some drug-industry leaders â€” as well as other officials in the administration.” Rachel, you’ve been following this story very closely and breaking a lot of news on it. Who didn’t Marty Makary piss off? And tell us more about that Wall Street Journal ticktock of his last few days, since it’s your “extra credit” this week. 

    Cohrs Zhang: It is my extra credit. Truly nothing scares me more than seeing Josh Dawsey’s byline on a story on my beat. So I think the tension with Dr. Makary had been going on for months. I think there was kind of an effort that bubbled up, kind of last fall, in November, about â€” that raised some questions about his future and just his ability to cooperate. But he was able to keep his job at that point in time. But I think there have been a lot of changes at HHS [the Department of Health and Human Services] this calendar year, and I think there’s been an effort to kind of stabilize things, start to get people in place for some of these other positions, at surgeon general and at CDC [the Centers for Disease Control and Prevention]. And once those personnel searches started wrapping up, I think it shifted the focus back, I think, to FDA a little bit more, and there’s a lot of drama coming out of there. 

    And I think there is certainly a desire from the White House to get wins out of their agencies to tout, and especially ahead of the midterms, they just want people to be on message and to not have distractions. And I think the FDA, under Dr. Makary’s tenure, just continued to produce distractions. And there was personnel issues. There were certain policy issues that he was not necessarily aligned with the White House on. But there’s also just internal dynamics. When you’re leading an organization, you’re coming in after DOGE [the Department of Government Efficiency], it takes a lot of work to build trust back with career staff who saw their bosses fired, their colleagues retiring. It’s â€” there was so much turnover. 

    Rovner: And I was going to say, FDA took a big hit from DOGE, didn’t it? 

    Cohrs Zhang: It did take a big hit. 

    Rovner: This was before Makary came in. 

    Cohrs Zhang: Yes, technically before he came in. But I think we’ve seen other agencies â€” certainly not the level of turnover we saw at FDA â€” but try to build bridges and speak positively about career staff and really make an effort to value their expertise and bring them in the room. And I think we just didn’t really see that at the FDA. I think there was just mistrust and genuinely a view that we hear in public sometimes that career staff, or the “deep state,” weren’t supportive of the administration’s goals. And I think ultimately just the culture becomes toxic enough, and it’s just a difficult work environment for people doing really important work. 

    Rovner: And people, the stakeholders at FDA, are really important people, many of them. 

    Rachel Cohrs Zhang: They are. It cuts across so many different industries, like tobacco, food, medical devices, drugs, Big Pharma, small biotech. Truly, it’s a tough job to balance all the stakeholder interest. But I think if there had been a sense that he was really taking on industry and pursuing needed reforms, I think that would have been OK. But I think it was just communication issues, unpredictability. It’s just investors, companies don’t like unpredictability. They don’t like surprises, especially kind of a regulator that usually is pretty â€” has a lot of continuity from one administration to another. 

    Julie Rovner: Well, it seems like the last straw, as we discussed last week, was this fight over vaping â€” in particular, fruit-flavored vapes, which might help adults quit more-dangerous tobacco products but also might attract children to start vaping. Makary was against the fruit-flavored vapes. [President Donald] Trump had promised the vaping industry during the 2024 campaign that he would protect them. Is there going to be more fallout from this whole vaping fight? I did see that a top HHS spokesman quit this week, also citing approval of the fruit-flavored vapes. But there’s more to that story, too. Right, Rachel? 

    Cohrs Zhang: Yeah, I think personnel issues are really hard to cover, and the context that I would want to provide is that these resignations, both of Dr. Makary and the , Rich Danker, were not resignations where these individuals had the possibility of a long and robust career at these agencies. I think they both kind of reached the end of the line. And certainly, are there policy disagreements that occurred about fruity-flavored vapes? Absolutely, yes. But those dynamics have been ongoing for a long time. I think it’s also important to point out that the agency did approve these before the exit of both of these officials. And I think there’s just, the timeline, it’s a little complicated. Personnel issues are complicated, but I think, again, the Wall Street Journal story by Liz [Essley Whyte] and Josh did a really good job of trying to get that 360 view and kind of explain it in a fair and balanced way as to how that all went down. 

    Rovner: So the question that this keeps leaving in my mind is: How is tobacco not a bigger piece of MAHA? If we’re going to “Make America Healthy Again,” isn’t the first thing we want to do is get people to stop using tobacco products? Why is this out in this sort of little island by itself, when [Health and Human Services Secretary] RFK [Robert F. Kennedy] Jr. is beating up on pretty much everything else? 

    Cohrs Zhang: That is an interesting point. Calley Means at the White House also did a conversation with Harvard this morning and just kind of mentioned that they’re not trying to ban anything in the administration. That was kind of the talking point they were using: We’re not banning cigarettes. We’re not banning ultraprocessed food. We’re just trying to educate people on what’s good or bad for you. So that’s kind of the line they’re taking. 

    Rovner: So it’s like vaccines? It’s like everything should be up to your choice about what you put in your body? 

    Weber: I just wanted to add that, Julie, I feel like you’re asking a question of the MAHA movement the MAHA movement is unable to answer, which is: What is the MAHA movement? If we care so much about chronic disease, why aren’t we looking at one of the things that kills people a lot, which is tobacco? So, which leads also, and we’ll get to it later, to my extra credit, which is on Stat’s excellent series on alcohol, which the administration is also not really looking at. So I think when MAHA talks about these underlying pillars of combating the chronic disease epidemic, that’s all great. But what are they defining as the chronic disease epidemic? Because a lot of their attention has been focused on vaccines, which scientists have very clearly stated are not causing the chronic disease epidemic. So, we’ll see how this continues to unfold. 

    Rovner: And reversing the food pyramid, to emphasize things that science has shown do contribute to chronic disease, like lots of animal products. So it’s a little bit curious, let us say. Well, the person who is now installed to replace Dr. Makary, at least on an interim basis, isn’t even a doctor. He’s a former corporate lawyer at the firm Jones Day and a hunting partner of Donald Trump Jr.’s. What else do we know about Kyle Diamantas, who’s been heading up FDA’s food division? 

    Ollstein: So the anti-abortion groups that were demanding Makary’s ouster, some of them, over accusations that Makary was not doing enough to restrict access to abortion pills, are already worried about the acting replacement because records surfaced showing that he represented Planned Parenthood as a private attorney a decade ago, and so â€” 

    Rovner: In a real estate case, right? 

    Ollstein: In a real estate case, in a dispute between a clinic and its landlord. So clearly this was a concern, because within hours of his appointment as acting FDA leader, he was on the phone with anti-abortion groups, and he’s been talking to them on Tuesday, on Wednesday, on Thursday, different groups, trying to reassure them that he personally opposes abortion and will work with them going forward. But I think if he is nominated to lead the agency on a more permanent basis, that could potentially become a flash point. 

    Rovner: And of course, we do know, Rachel, I think you were breaking this morning that the idea of him replacing Makary on a more permanent basis is already not going over very well in the Senate. 

    Cohrs Zhang: Yeah, I think Sen. Bill Cassidy made some comments about Kyle. And I think there is absolutely a permanent search. I am not under the impression that they are planning to nominate Kyle Diamantas to be the permanent leader. I think they are searching for somebody with more robust expertise. But I think he’s just made a lot of allies. He’s been a pretty predictable and rational actor in the FDA. He got promoted earlier this year to be an adviser. He’s been doing public appearances, conferences, and on podcasts and television. So I think they just see him as a kind of a steady hand to guide the agency and not cause a lot of drama going into the midterms, because there’s a big backup of nominations in the Senate. So this could drag on for a while. 

    Rovner: Right. That is my next question. Who is likely to get this job permanently? And, wow, the nominations are stacking up at the Senate HELP [Health, Education, Labor, and Pensions] Committee, where chairman and troubled Trump ally Bill Cassidy now has to oversee the confirmations of a new FDA commissioner, a new CDC director, and a surgeon general. And Cassidy himself is facing a primary election this weekend in which the president has endorsed one of his opponents. Awkward much? 

    Cohrs Zhang: Yeah, it’s an interesting test of some of this proof of concept. Secretary Kennedy’s political operation has backed congresswoman Julia Letlow and so has the president. So there are these bigger macro issues of loyalty to the president and kind of where the Republican Party is headed. But there is a distinct healthcare flavor to this, given Sen. Cassidy’s influence over health policy in the Senate, and also just the involvement of a sitting Cabinet secretary’s political operation, which is pretty unusual, especially countering a sitting senator from his own party. So, yeah. It’ll be interesting to watch on Saturday. 

    Rovner: Lauren, you want to add something. 

    Weber: I want to call out again that Trump and RFK and Calley Means went pretty scorched-earth on Cassidy when they pulled Casey Means out, too. It’s not just that Trump has opposed him. It’s that this is like blow-everything-up-on-the-field oppose Bill Cassidy. So it is very curious to hear how this goes over, considering that Cassidy was the vote that got RFK his secretary post. So the weekend will be one to watch. 

    Rovner: Yeah, it will. Well, the other big story from last week that continues this week is also FDA-related. It’s the fate of the abortion pill mifepristone and whether it will continue to be available via telehealth prescribing. The Supreme Court last week put a temporary hold on a 5th Circuit Court of Appeals ruling that would have rolled back the tele-prescribing option. We were supposed to get a decision on whether or not that appeals court ruling would take effect by the end of the day Monday. But, as we so often say in Washington, that did not happen. Alice, where are we with this case? 

    Ollstein: We’re in a real hurry-up-and-wait situation. I had all my pre-writes ready to go on Monday, and I still have them ready to go for today. Look, the Supreme Court could punt again. They could say we need even more time. That’s happened before. They could say that the nationwide restrictions that the 5th Circuit put into effect that would cut off telehealth access to abortion pills and mail delivery of abortion pills and reinstate a prior rule saying patients can only get the drugs in person from a doctor, they could let that go into effect. Or they could say, Look, we’re going to maintain the status quo for now while this case makes its way through the courts. Those are sort of the three options. There could be a secret fourth thing. This is the Supreme Court. They kind of do what they want. One possibility is some parties in the case have asked the Supreme Court to leapfrog the 5th Circuit and just deal with this themselves once and for all. So that could happen, or they could send it back down to the 5th Circuit. 

    We can sort of take some clues from what they did when a different case challenging abortion pills came before them in 2023, which is: They maintained the status quo. They maintained nationwide telehealth access while sending the case back to the 5th Circuit. And then it eventually came back to the Supreme Court, and they eventually sort of dodged the heart of the issue and decided it based on standing. That could happen again here, too. We have no idea. But this is really a major case because if these nationwide restrictions on telehealth go into effect, it’ll be really the biggest rollback of access since Roe v. Wade was overturned in 2022. And it will really go after access in blue states with protections on the books for abortion access in a way that people in those states really haven’t experienced before now, which could have very big political as well as healthcare implications. 

    Rovner: And which those states have also sued. 

    Ollstein: Yes. Yes, yes, yes. 

    Rovner: The blue states. So there’s more to come. What role if any did the anti-abortion movement have in Dr. Makary’s losing his job? As we discussed last week, they blamed him for the FDA’s slow-walking of a review of mifepristone safety, even though it’s pretty clear that that delay came from the White House, not from Makary himself. And I know there was a White House meeting just last Friday with anti-abortion groups, just as the Makary-is-on-his-way-out rumors began to fly in earnest. Connected? 

    Ollstein: So the administration is definitely trying to reassure the anti-abortion movement and keep them in their good graces leading up to the midterms. But that’s not entirely been successful. The anti-abortion groups are still upset. They still want to see these policy actions. They want the FDA or the DOJ [Department of Justice] or the EPA [Environmental Protection Agency] or some agency to do something to cut off access to abortion pills. They have not gotten that yet. They’re also really upset that the current ban on Planned Parenthood receiving Medicaid funding is set to expire in July, and it’s not totally clear Congress is going to manage to extend that defunding provision at all or in time for its expiration. And so these are two big priorities of theirs that they are very upset about. And so it’s not clear that all of this access that the administration is extending to them in these meetings and these phone calls, if that’s not followed up by concrete policy action, they’re not going to be satisfied. They’re going to keep complaining, loudly, as we’ve already seen this week. 

    Rovner: Well, meanwhile the Trump administration used Mother’s Day this week to unveil a new regulation aimed at making it easier for employers to offer IVF [in vitro fertilization] coverage to their workers, though not making it free, as Trump had promised on the campaign trail in 2024. And at a maternal health event on Monday in the White House, administration officials continued to press their pro-natal push for more people to procreate. Here’s how [Centers for] Medicare & Medicaid [Services] chief Dr. Mehmet Oz put it at the event. 

    Mehmet Oz: One in 3 Americans are under-babied. What does under-babied mean? That means that you either don’t have any children or you have less children than you would normally want to have. 

    Rovner: Um, OK then. This event also featured the unveiling of a new federal website, moms.gov, which HHS says is a, quote, “user-friendly, one-stop digital hub providing new and expectant mothers with essential resources.” But it also links users to an anti-abortion group site that collects lots of sensitive personal information that can apparently be used any way the group, Heartbeat International, sees fit. Alice, this has prompted some concern in the reproductive health community. Has it not? 

    Ollstein: It has, and it’s also a good example of how the administration is both working to appeal to anti-abortion activists while also continuing to piss them off, disappoint them. And so there was just a lot of mixed reaction to the unveiling of this website, because the anti-abortion folks were thrilled that it was steering people, using government resources to steer people to these often faith-based, anti-abortion crisis pregnancy centers. But at the same time, it was promoting IVF, which many of them oppose. They see it as akin to abortion. They — some see it as even worse than abortion, because it’s creating all these embryos and discarding them. And so it’s this real sort of push and pull where they’re not happy and, as you mentioned, the pro-abortion-rights camp is really not happy, either. 

    Rovner: So we will have more of this as we go forward. All right, we’re going to take a quick break. We will be right back. 

    So back in February â€”I looked this up â€” we talked about the Trump administration threatening to withhold millions of dollars appropriated to the global childhood vaccine group called Gavi, because it wouldn’t promise to phase out the use of the preservative thimerosal, which, by the way, has long since been cleared of accusations that it causes autism. The U.S., which helped create Gavi, now owes it $600 million â€” $300 million each for the last fiscal year and the current fiscal year. And last week, a bipartisan group of senators, led by Senate Appropriations Chairwoman Susan Collins of Maine, sent a letter to Secretary of State Marco Rubio asking him to, you know, spend the money that Congress appropriated. Now, Gavi says it has specific reasons for using vaccines with preservatives, because it mostly operates in poor countries, where refrigeration can be spotty, and it has to make the best use of limited funds. My bigger question is: How does the secretary of Health and Human Services get to stop the State Department from spending money appropriated by Congress? 

    Weber: I think that’s a great question, Julie. At the end of the day, Kennedy, for years â€” this is not something he came up with overnight. This is something he’s been harping on for years. He wrote a book about thimerosal. He has linked it to autism, which is a claim that has been disproven by scientists and even folks at his own agency, before his handpicked advisory committee voted to get rid of it, in a decision that now is on ice with the federal court. But he also has railed against the sending of these vaccines abroad for years. I’ve listened to him talk about it. He really dislikes Bill Gates for his involvement in some of this. And so on. So it was a personal issue for him that he’s held tightly. I’m not sure how you get ahold of State Department funds, but I’m not sure of a lot of things these days. So, here we are. 

    Rovner: Neither is Congress, apparently. We will watch the Gavi space, too. Well, meanwhile, we are also still watching this hantavirus outbreak that apparently came from Dutch tourists in Argentina, who caught it and spread it on a cruise ship in the Atlantic. So far, there are nine confirmed cases and two more people showing symptoms. Public health experts, including what’s left of the Centers for Disease Control and Prevention here in the U.S., seem fairly united in the view that while this is an odd outbreak, since hantavirus rarely spreads from person to person, they’re still not super worried about it morphing into another pandemic. But it does underscore just how unprepared the U.S. is should another outbreak of this or something else prove more dangerous, now that the nation has basically cut public health capacity to the bone, cut ties with international public health organizations like the World Health Organization, and defunded much of the federal public health infrastructure. Although, I have to add, there is at least a little bit of karma in watching all these officials who rose to prominence criticizing the nation’s covid response trying to respond to a public health emergency of their own. What are you guys watching for? Lauren, you must be on this one. 

    Weber: Yeah, no, I had  earlier in the week about: What’s it like to be in the Nebraska national quarantine unit? Which it was kind of fascinating to me. So basically there’s this whole setup in the middle of the country â€” and as a Midwesterner, I obviously love a Midwest shout-out â€” where they repatriated all these people off the cruise ship and sent them to Nebraska. And you end up, basically, if you’re in the quarantine unit, in what’s essentially a souped-up hotel room. There’s an exercise bike. Apparently, the staff is very nice. But you can’t leave, really, unless â€” there is some talk about letting some of the people that seem to really have no symptoms potentially leave to stay at home, but it’s a little unclear what’s happening there. Staff comes in in protected masks. And you don’t get to see people for a while, so that’s kind of a tough go after you were on a cruise ship sailing the world. That really went awry. So â€” 

    Rovner: And it’s a long incubation period for this particular strain of hantavirus. 

    Weber: It’s a long â€” 42 days! That’s a long time to be stuck in a room. But again, officials â€” as you said, Julie, I think which was smart to point out â€” have said this is not covid. This does have very low risk of spreading to the general public. I do think there is some question about this question of prolonged contact and what that means â€” it seems like it’s being debated a little bit about how exactly this spreads and how exactly many people may end up coming down with it â€” that we’ll have to continue to watch as well. 

    Rovner: And of course, we’re already seeing people online, like, selling more ivermectin. And, this sort of thing does bring out the less-than-scrupulous actors in public health, shall we say? 

    Weber: Nothing like a crisis. But, in general, I think it’s a good reminder. As you pointed out, we’re watching the contrarians run the ship. I was fascinated. In the Oval Office, basically, RFK Jr. said there’s nothing to worry about, Nothing to see here kind of thing. And that is, it’s interesting, the public health messaging, which has varied from person to person in the administration, because they have litigated how covid was messaged for such a long time. Now, again, this is not covid. But it’s very fascinating to see players that had such strong opinions deal with some of the same terms, like “quarantine,” “6-feet isolation,” the uncertainty of what’s happening, and, again, deal with it in a backdrop of: We’ve withdrawn from the WHO. There have been CDC cuts. And what happens now? 

    Rovner: Yeah, and also the fact, and we talked about this a little bit last week, that the U.S. didn’t even know that some of the people who were exposed had already gotten off the ship and gone home. And those people are not in quarantine in Nebraska. Those people are apparently being watched by their individual state health departments. So the coordination effort here was not great, either. 

    Weber: Well, it does sound like the CDC was on the horn with state health officials. But yeah, I mean, some of these people kind of flew into the wind, so to speak, and they haven’t found everyone. But that said, you know, I talked to the Virginia state health official who was like, Look, we’re in talks with the patient in Virginia who&²Ô²ú²õ±è;…&²Ô²ú²õ±è;they check in for daily monitoring of temperature checks and so on. The California state health official that I listened to said, Look, these people that we’re watching were either a row behind or a row in front of, or two seats next to, for at least 15 minutes a suspected ill passenger on a plane. That’s why we’re watching them. And that’s interesting to me, too, because that speaks to the level: Is that prolonged contact? What does prolonged contact mean? is my underlying question I continue to ask. So we’ll have to continue to see what we learn more on this front. 

    Rovner: Well, at very least, they’re getting an idea that covid was not so easy to deal with â€” these people who’ve been criticizing the covid response. OK, that is this week’s news. Now we’ll play my interview with Sen. Tammy Baldwin of Wisconsin, and then we’ll come back and do our extra credits. 

    I am so pleased to welcome to the podcast U.S. Sen. Tammy Baldwin, Democrat of Wisconsin. Sen. Baldwin is a senior member of both the Health, Education, Labor, and Pensions Committee and the Senate Appropriations Committee, where she’s the top Democrat on the subcommittee that funds the Department of Health and Human Services. Sen. Baldwin, thank you so much for joining us. 

    Sen. Tammy Baldwin: Thank you for having me. 

    Rovner: So we spend a lot of time on the podcast talking about health issues that are divisive, and often divisive by party, but one feel-good story of the past few months comes from a study showing that the new 988 suicide prevention hotline has, in fact, reduced youth suicides. That was a very bipartisan effort in Congress that you were, I know, a big part of. How satisfying has it been to see that succeed, and is there a chance that you could repeat that work on other health issues, or was this kind of a one-off? 

    Baldwin: Look, I knew when we wrote the bill to establish the 988 hotline that it was going to save lives. But to have this study showing that there was 10% to 11% reduction in youth suicide and attributable to this 988 hotline â€” it’s heartwarming to know that this work matters. And it was very bipartisan legislation to establish the 988 hotline. You know, we’ve long had a mental health crisis suicide prevention hotline. It was a 10-digit number that no one would remember at a time of crisis and need. And so now people remember it and can use it, and it’s also modern in that you can also chat or text as well as call. And with the young generation, sometimes that’s their preferred way of reaching out and communicating. But again, heartwarming to hear what I always believed would be true about 988 â€” that it is saving lives and people are using it. 

    Rovner: I know that as much of a success as this has been, you’ve been critical of HHS Secretary RFK Jr. for eliminating the part of the hotline that provided a separate option for LGBTQ+ youth. What’s the status of your effort to get that restored? 

    Baldwin: Yeah, and I’ll focus on that. And there’s some other concerns that I have about the way in which we support 988. But let me start with that. There are certain populations in the United States that have higher rates of suicide. I think we all immediately think of our military veterans. And so when you call the 988 hotline, one of the first screening questions is: “Are you a military veteran? Press 1.” And if you are, you have the option then of getting your call or inquiry responded to by somebody in the VA [Department of Veterans Affairs] system who, I might say, has walked in your boots before and understands the experiences that you might have had while serving in the military. Another population with a very high rate of suicide is LGBTQ youth, and so the “Press 3” option made sure that youth who were in the LGBTQ community and reaching out for help in crisis were getting their calls and texts responded to by somebody who was specially trained and understood their situation. And you know, again, it promotes use of the line because you don’t think when you call that you’re likely to be judged. And by the way, the study that showed this was having a very positive impact on reducing suicide said that 1 in 10 calls to the 988 hotline, people utilize the “Press 3” option. But what happened there is the Trump administration last year abruptly ended the service and defended that by saying, Well, we want to treat everyone the same. We don’t want to discriminate. Well, they kept the “Press 1” option for veterans, and understanding that specialized response for veterans would be important to keep, but they eliminated the service “Press 3” for LGBTQ youth. Very unfortunate. But fortunately, there was a bipartisan pushback to that â€”on two fronts for that, one successful and the other still in progress. We wanted to make sure that the administration restored the “Press 3” option and restored the contracts with nonprofits that are able to provide the response to those calls. And that was written into our appropriations law for the fiscal year 2026. Now we’re chasing down the administration and Secretary Kennedy, saying, It’s in the law. Let’s get it done. It hasn’t happened yet, but we have his public commitment to make sure it does. And so we’re pressing him for expeditious restoration of the “Press 3” option. That said, we also want to make this permanent law. And so I have a bill that is bipartisan with Sen. Lisa Murkowski that would write into statute that a “Press 3” option has to exist and so that it doesn’t become political football in the future. 

    Rovner: Well, I’m so glad you mentioned things that have been written into the appropriations law, because one of the continuing issues that we’ve chronicled over this last year has been this administration just refusing to spend money as appropriated by Congress. Now, I’ve been covering Congress in general â€” and the Labor-HHS appropriation, in particular â€” for four decades now, and a 25-year-old or 35-year-old me could not imagine appropriators standing for any administration, ignoring their power of the purse, which this one seems to be doing. Why has there been so little pushback, and is that going to change? 

    Baldwin: Yeah, in answer to your question, I want to say that in this most recently passed bill that Donald Trump signed into law, we had to put guardrails that we’ve never had to put into our appropriations laws before to enforce our spending bills. And those laws have made it clear that we expect that they must spend what we have appropriated, and not just, you know, all of it at the end of the fiscal year, but in a timely manner throughout the year. And we also are more specific about staffing requirements, because we saw last year these incredible numbers of people fired, RIF’d, as well as really heavy pressure to get people to sign up to early retirements, etc., but just a big push to get people out of the agencies. And so we had to write into the appropriations law that they have to maintain staffing sufficient for their mission. And I can give you any number of examples where people needed to reach out to divisions within the CDC, for example, and no one was there. 

    Rovner: Is there going to be more pushback, do you think, if the administration tries this year to avoid spending money in the way that they tried to avoid spending money last year â€” and, as you kind of mentioned, dumped a lot of money out the door at the very end of the fiscal year? 

    Baldwin: Yeah, so one of the areas in which they did that in a significant way was NIH [the National Institutes of Health]. We saw thousands fewer grants awarded last fiscal year, and we’re very worried that they would continue to act in that vein. And part of that battle is still ongoing. There’s something â€” we’re going to get in the weeds here for a second â€” but there’s something they call forward funding, where instead of just annually funding one year of grant research activity, you actually fund multiyear grants all at once up-front. And the administration has wanted to move into doing that more and more and more, but if you have a finite number of dollars, that simply means fewer grants will be awarded each year. And the way I liken it, if you’re thinking about NIH and curing cancer or finding a better treatment for Alzheimer’s, these are more shots on goal. We need to not just invest in a few research endeavors to try to cure cancer, to try to treat Alzheimer’s, to deal with all of the things that NIH is trying to advance, you have to have as many shots on goal as you can. And so this forward funding is really tying up a lot of resources in fewer and fewer research endeavors. 

    Rovner: And that â€” which leads me to my last question, which is&²Ô²ú²õ±è;…&²Ô²ú²õ±è;concerns the other thing we’ve talked about a lot, is that future health care and research worker pipeline having fewer grants means fewer jobs for students and PhDs. And this administration has also made it more difficult for medical students and other health profession students to take out loans by capping the loan amount. How big a concern is this? And what can you do from your posts, either on the HELP Committee or on the Appropriations Committee, to make sure that there is a future workforce for healthcare and research? 

    Baldwin: Yes. Well, especially in research, I was proud to&²Ô²ú²õ±è;…&²Ô²ú²õ±è;lead bipartisan legislation called the Next Generation Researchers Act that passed many years ago but is definitely in threat under this administration. I represent the state of Wisconsin. We have a couple of academic research centers that are exceptional. And I remember visiting on so many occasions and seeing these bright postdocs looking forward to their opportunity to advance treatments and cures for devastating illnesses and learn about the basic mechanisms of biology. And knowing each year that the average age of the first-time grant awardee is getting older and older and older, and the opportunities for a career in research â€” which is such an investment by the individual to their education and postdoc work â€” their opportunities are shrinking and shrinking. And some are leaving research and going into private industry. Some are leaving the country and are actually being lured by other nations who want to take advantage of this neglect here in the United States. This is something we’ve got to turn around. And forward funding is one of the things that is making it harder, but also the lack of commitment to just increasing the overall research enterprise in the United States, which is something we are known for globally. You have to keep up with it. Costs increase, and so you can’t just flat-fund, that means less. You can’t forward-fund, that means less. So we’re going to have some bipartisan pushback, but we also are going to have a very limited amount of resources to deal with, especially â€” just to drop a big topic at the very end here â€” especially with a Defense Department that is seeking $1.5 trillion in funding â€” that, just the math doesn’t work out. 

    Rovner: Well, we will be watching the appropriations process closely as it moves forward. 

    Baldwin: Yes, indeed. 

    Rovner: Sen. Baldwin, thank you so much for joining us. 

    Baldwin: Thank you for having me. 

    Rovner: 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, you have already done yours. Lauren, why don’t you go next? 

    Weber: Yeah, I wanted to highlight Stat’s series, the first of which is titled “,” by Lev Facher and Isabella Cueto. And it’s just a fabulous step-back look at how this administration, in particular, which would seem to be primed to look into alcohol as an addiction, considering that Trump himself is a teetotaler and RFK Jr. has publicly spoken about his recovery from addiction to alcohol, is not seizing the moment. And this is happening at a time that ER visits for alcohol are going up, and that alcohol does, speaking of chronic diseases, contribute to quite a large amount of American healthcare costs. And it’s a real bracing look at an issue that, you know, oftentimes people don’t want to look at in this way, as alcohol is such an inherent part of America’s social fabric. So kudos to them for the look. 

    Rovner: Yeah, I would point out that both alcohol and tobacco are, you know, two of those vices that have been bipartisan over the years. Republicans and Democrats in Congress have worked on, but this administration seems to be sort of downplaying both of them. Alice. 

    Ollstein: Yes, I have a piece by my colleague Katherine Tully-McManus titled “.” Now we’ve been hearing a lot about the threats to medical privacy with everything being in these electronic records, and, you know, being shared from company to company. And turns out, even being a member of Congress does not protect you from this brave new world that we live in. And there was a data breach this week that lawmakers were informed of, and potentially their prescription history was unveiled. And so that is information I am sure they do not want out there. So it just really shows that if even they can be at risk, then, you know, what’s going to happen to the rest of us? 

    Rovner: Yeah, that was some story. And I would add that TMZ is looking for members of Congress who smoke weed. That’s a separate story. Not my extra credit. My extra credit this week is from ProPublica. It’s called “,” by Rob Davis. It’s about a state law that gave Oregon officials the power to stop mergers and acquisitions that were deemed not in the best interest of patients. The idea was to, if not stop them, then at least slow the consolidation push that was cutting access and driving up healthcare costs â€” except it hasn’t worked, at least not yet. Quoting from the story: “Of the nine healthcare deals for which regulators have done follow-up reviews, at least three had outcomes the law was meant to forestall.” As always, complicated healthcare problems defy simple solutions, but I assume they’ll keep trying. 

    OK, that’s this week’s show. As always, thanks to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcasts — 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? Lauren. 

    Weber: I am still on X  and the same thing on . 

    Rovner: Rachel. 

    Cohrs Zhang: I’m on X  and on . 

    Rovner: Alice. 

    Ollstein: I am  on Bluesky and  on X. 

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    Trump and Kennedy Seek To Relax Safeguards for AI Healthcare Tools /health-industry/ai-artificial-intelligence-ambient-scribes-ehr-electronic-health-records-hhs-deregulation/ Wed, 13 May 2026 09:00:00 +0000 /?p=2234764 Paul Boyer, a psychotherapist for Kaiser Permanente in Oakland, California, is experiencing the AI revolution firsthand. He’s a little underwhelmed.

    The health giant has rolled out a new suite of note-taking software, made by healthcare AI pioneer Abridge, intended to summarize a patient’s visit at supersonic speed. For many clinicians, the technology soothes one of the persistent headaches of their lives — administration and paperwork.

    But the AI scribe caused another headache for Boyer and his colleagues: It is “not super useful.” They end up correcting the computer-written notes.

    Abridge is “not good at picking up on clinical nuance, at picking up on the emotional tone” that can be critical in the mental health field, Boyer said. For example, for manic patients, what’s said is less important than how it’s said, Boyer said, and the software struggles with picking up on those cues.

    Note-taking software isn’t the wave of the future; it’s the wave of the present. Hospitals nationwide are implementing it. And researchers are finding some benefits. A year after installation, doctors who used these products the most saved more than half an hour of work daily, according to published in April in the Journal of the American Medical Association.

    Many doctors love the products where they’re deployed — several to the scribes.

    Nevertheless, as Boyer’s example shows, there are persistent questions about the systems’ quality. While Boyer and his colleagues spend time correcting notes, safety researchers worry clinicians might not be diligent about catching errors. That might mean future doctors rely on bad information.

    Abridge says it evaluates its scribes at every stage of deployment, including with head-to-head tests against previous versions of the software.

    “Following deployment of a model, we monitor clinician edits, star ratings, and free-text feedback from clinician users about note quality,” the company’s director of applied science, Davis Liang, told Ñî¹óåú´«Ã½Ò•îl Health News in a statement.

    Artificially intelligent scribe software is part of a swarm of AI-powered tools coming to healthcare. Clinicians and patient-safety advocates say government regulations are not well constructed to guard against the threat that the new technology will miss or obscure important details of patients’ conditions, potentially harming them.

    “There is currently no safeguard in place” to vet scribe software at the federal level, said Raj Ratwani, a researcher specializing in human factors — that is, how people interact with technology — at MedStar Health, a large hospital system based in Columbia, Maryland.

    Ratwani worries that safeguards on health software will relax even further. from the Office of the National Coordinator for Health IT — the body that regulates electronic health records, the central chronicle of care for patients — could weaken requirements to make medical records understandable, easy to use, and transparent about the use of AI, Ratwani said. And an incomprehensible record could confuse clinicians and lead to errors.

    Beginning in the Obama administration, the Health and Human Services Department’s IT office , in which developers try their products on doctors and nurses. Regulators also sought to require more transparency from companies in the surging market in AI tools.

    Both of those requirements are axed in the proposed rules from HHS Secretary Robert F. Kennedy Jr.’s health IT office.

    Doctors and other health practitioners consult records for clinical information, such as scribe notes summarizing the history of patient care and lists of drugs and therapies their patients have used. Doctors also input orders for care.

    Poor or cluttered design of a records system “might make the list of medications so complicated and confusing that the ordering provider selects the wrong medication,” Ratwani said.

    Abridge’s general counsel, Tim Hwang, said the company “broadly supports” the government’s rules as a “necessary modernization” that “accommodates the speed at which AI is evolving.”

    The old rules “put way too much burden” on electronic health record systems, said Ryan Howells, a principal at Leavitt Partners, which consults for digital health companies. Leavitt supports the proposals.

    Dropping requirements, the administration argues, will result in more innovation and competition. The electronic health record market has steadily consolidated, with hospitals and other clinicians choosing from fewer vendors.

    A 2022 study found the top two vendors, Epic and Oracle Health, of the hospital market. And Howells argued too many rules burdened providers looking for good record systems. Federal regulations, Howells said, are “the single biggest inhibitor to true clinical innovation.”

    The Trump administration proposal to remove requirements governing records is overbroad, some critics say. It removes regulations intended to keep records secure. It also eliminates privacy protections for sensitive medical data they safeguard, overhauls standards governing the formats data is sent in, and more. The rule may give clinicians “more health IT choices to meet their needs through increased competition,” the government wrote in its proposal.

    HHS’ health IT office declined comment, noting the proposal is still winding through the regulatory process. Public comment closed in February.

    But most concerning to some — even in the hospital and developer sectors — are proposals to scotch prerequisites to ensure new products are tested on actual users, and to ensure AI tech’s decisions are transparent to doctors and nurses.

    “Historically, hospitals and health systems have been challenged by the black box nature of certain AI tools and how the algorithms are developed,” the American Hospital Association’s Jennifer Holloman said. And with more AI tools flooding the market, the association , transparency is even more critical.

    Complaints about the safety of electronic health records are long-standing, even for seemingly straightforward tasks. Ratwani likes the example of ordering medication for a given condition.

    “The physician is trying to order Tylenol, and the medication list can be so confusing that there’s 30 different versions of Tylenol all at a different dose and for different purposes, when in reality that could be designed much more simply and make it easier for the physician to actually pick the right type of Tylenol that they’re ordering,” he said.

    Real-world user testing was intended to simplify record design for doctors. But the administration is ending that requirement in a confusing way, said Leigh Burchell, vice president for policy and public affairs at Altera Digital Health, an EHR developer.

    In Burchell’s interpretation of the rules, which refer to “enforcement discretion,” a principle in which the government can opt not to enforce certain rules, companies are still required to do the testing — the part that takes work — but are not mandated to report their results to the feds.

    The administration is also ending a Biden-era idea to create AI transparency “model cards.” The concept was that clinicians could explore the data used to train AI tools that advise clinicians with a simple mouse click. But few took advantage of the year-old tool, Trump’s regulators say.

    Still, hospitals and doctors are wary of removing it. The tool “provides information on how a predictive or generative AI application was designed, developed, tested, evaluated and should be used. These data are critical to foster trust in AI tools and ensure patient safety,” the AHA wrote in a comment letter to the HHS IT office. The American College of Physicians , saying a “lack of clarity could undermine clinician trust, increase liability expense, and erode the patient-physician relationship.”

    Even developers aren’t totally sure about the idea. Burchell said the electronic health records trade group she’s part of had “a lot of different perspectives” on the issue. “Normally, we tend to be a bit more aligned on our responses.”

    Still, Burchell’s group thought companies should be transparent about the data AI relies on to make decisions and how it comes up with recommendations.

    Evidence for AI tools’ effectiveness or contradictory.

    A comparing 11 AI scribes for potential use as a pilot in the Veterans Health Administration found the software performed worse than humans across five simulated scenarios. “Although ambient AI scribes can generate complete notes, the overall quality remains broadly below that of human-authored documentation,” the authors noted, with the omission of information being particularly concerning, given the potential to affect follow-up care.

    The vendors in the VA study weren’t identified, for what the authors called “contractual reasons.”

    And that’s just one type of AI tool. A wave of them is coming, each needing its own evaluation, to say nothing of tools that have already been installed.

    Boyer said he can mostly ignore his AI scribe, for the moment. But he worries that management will design his job around the expected time savings and schedule more patients — meaning he’d need to spend more time both with patients and correcting the software’s errors.

    A KP spokesperson, Vincent Staupe, said the company does not require its clinicians to use AI.

    “When I am correcting that note, I feel like this is too much work,” Boyer said. “This is definitely making this worse, and this is taking up time that I need to not be spending on correcting an AI tool.”

    Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

    This <a target="_blank" href="/health-industry/ai-artificial-intelligence-ambient-scribes-ehr-electronic-health-records-hhs-deregulation/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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