The Host Emmarie Huetteman KFF Health News Emmarie Huetteman, senior editor, oversees a team of Washington reporters, as well as “Bill of the Month” and KFF Health News’ “What the Health?” She previously spent more than a decade reporting on the federal government, most recently covering surprise medical bills, drug pricing reform, and other health policy debates in Washington and on the campaign trail. 

The secretary of Health and Human Services, Robert F. Kennedy Jr., contradicted his agency’s researchers this week with unsubstantiated or outright false claims about autism spectrum disorder and those with the condition. His public remarks were not the only recent example of Kennedy speaking against his employees; during an introductory appearance at the FDA, Kennedy said the staff — reeling from the layoffs of 3,500 colleagues — had become beholden to the industries they regulate.

Meanwhile, President Donald Trump issued an executive order aimed at lowering drug prices as his administration signaled that tariffs on pharmaceuticals and pharmaceutical ingredients could be on deck. And new data shows that the number of abortions performed nationwide increased slightly last year, as travel and telehealth prescribing maintained access for some patients in states with abortion bans.

This week’s panelists are Emmarie Huetteman of KFF Health News, Anna Edney of Bloomberg News, Jessie Hellmann of CQ Roll Call, and Shefali Luthra of The 19th.

Panelists Anna Edney Bloomberg News @annaedney @annaedney.bsky.social Read Anna's stories. Jessie Hellmann CQ Roll Call @jessiehellmann @jessiehellmann.bsky.social Read Jessie's stories. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories.

Among the takeaways from this week’s episode:

• Kennedy’s claim that genetics do not play a role in the development of autism contradicts decades of scientific inquiry into the disorder — including the work of his agency’s own researchers, at the Centers for Disease Control and Prevention, who say there is indeed a genetic component to autism. Further, his striking remarks about the severe limitations of those with the disorder do not reflect reality for the many people living with autism.
• Trump’s executive order to lower drug prices calls for changes to the Medicare drug negotiation program that could instead increase costs for the federal government. It also calls for the FDA to make it easier for states to import drugs from other countries, including Canada — but, among other things, the introduction of tariffs on drugs and drug ingredients could negate other efforts to lower prices.
• And the picture of federal health cuts is still coming into focus, as people throughout the health care system grapple with the effects of slashing government efforts to do things like help Americans afford utility bills, monitor the spread of hepatitis, and much — much — more.

Also this week, Julie Rovner of KFF Health News interviews Krista Harrison and Robbie Zimbroff, health policy researchers at the University of California-San Francisco. They share some background on a case before the Supreme Court next week, Kennedy v. Braidwood Management, which challenges the ability of the U.S. Preventive Services Task Force to make expert recommendations for American health.

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

Emmarie Huetteman: KFF Health News’ “States Push Medicaid Work Rules, but Few Programs Help Enrollees Find Jobs,” by Sam Whitehead, Phil Galewitz, and Katheryn Houghton.

Anna Edney: ProPublica’s “Unsanitary Practices Persist at Baby Formula Factory Whose Shutdown Led to Mass Shortages, Workers Say,” by Heather Vogell.

Jessie Hellmann: The Hill’s “Military’s Use of Toxic ‘Forever Chemicals’ Leaves Lasting Scars,” by Sharon Udasin and Rachel Frazin.

Shefali Luthra: The 19th’s “Trump’s Push for ‘Beautiful Clean Coal’ Could Lead to More Premature Births,” by Jessica Kutz.

Also mentioned in this week’s podcast:

• KFF Health News’ “Trump HHS Eliminates Office That Sets Poverty Levels Tied to Benefits for at Least 80 Million People,” by Arthur Allen.
• Wired’s “HHS Systems Are in Danger of Collapsing, Workers Say,” by David Gilbert.
• Wired’s “Elon Musk’s DOGE Is Getting Audited,” by Leah Feiger and Tim Marchman.

Click to open the transcrippt Transcript: On Autism, It’s the Secretary’s Word vs. the CDC’s

[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.] 

Emmarie Huetteman: Hello, and welcome back to “What the Health?” I’m Emmarie Huetteman, a senior editor for KFF Health News filling in this week for Julie Rovner. I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, April 17, at 10 a.m. As always, and I know I don’t have to remind you, news happens fast and things might’ve changed by the time you hear this. So, here we go. 

Today we’re joined via video conference by Shefali Luthra of The 19th. 

Shefali Luthra: Hello. 

Huetteman: Jessie Hellmann of CQ Roll Call. 

Jessie Hellmann: Hi there. 

Huetteman: And Anna Edney of Bloomberg News. 

Anna Edney: Hi. 

Huetteman: Later in this episode we’ll have Julie’s interview with two health policy researchers at the University of California-San Francisco, Krista Harrison and Robbie Zimbroff. They will share some background on an important Supreme Court case being argued next week. That case challenges the ability of the U.S. Preventive Services task force to make expert recommendations for American health. 

But first, this week’s news. The secretary of Health and Human Services roiled the health community on Wednesday by claiming, without evidence, that autism is preventable. He also directly contradicted his own agency’s research on the causes of autism. Secretary Robert F. Kennedy Jr.’s comments came during a press conference about a new CDC [Centers for Disease Control and Prevention] report. That report showed that the percentage of American children estimated to have autism spectrum disorder continued to rise in 2022. CDC researchers found that the rate among 8-year-olds was 1 in 31. That’s nearly five times as high as the rate in 2000 when the CDC started keeping track. The report attributed some of the increase to more screening, but on Wednesday, Kennedy repeatedly dismissed that finding from his own agency’s researchers. Kennedy also chastised what he called “epidemic deniers” for focusing on possible genetic causes of autism. That’s despite the fact that scientists have known for decades that genetics are at least a contributing factor. Jessie, you were at Kennedy’s press conference. What else did he say, and did he discuss how HHS plans to respond to the rise in autism rates? 

Hellmann: He said they’re going to be announcing a series of studies within the next few weeks looking at dozens of what he says are potential environmental contributors to autism. He specifically mentioned mold, pesticides, foods, medicines. He didn’t specifically mention vaccines, and reporters did not get a ton of time to ask questions about that, but he kind of just made this argument that scientists have been censored or stifled in their efforts to find the true causes of autism. And, like you said, he downplayed what many scientists say, which is that they think it’s predominantly genetics. Maybe some environmental exposures can play a role here, but he seemed to argue that a big part of it is environmental toxins, and once they find out what that is, they’re going to eliminate it, and that’s going to solve the problem. 

Huetteman: Now that seems to be getting quite ahead of the notion of trying to do more research to find out the causes of autism, right? He’s kind of saying, We’re dismissing this notion and we’re only going to focus on environmental toxins. Is that right? 

Hellmann: Yeah. He also mentioned some other things, like parental age. He mentioned ultrasounds. He mentioned a whole litany of things, but, yeah, he literally said that looking at genetics is a dead end in terms of finding the causes of autism, which is something that many scientists disagree with. And he reiterated a promise he made last week that there would be answers by September, which is a timeline many scientists questioned and Kennedy hasn’t really explained. People have been looking at this for decades, and it’s been really slow work trying to find answers. So such an expedited timeline has raised a lot of questions too, and makes people worry that he kind of already has a predetermined conclusion. 

Huetteman: Actually, can anyone remind us why is it problematic to claim that autism is preventable? One of the kind of headline claims that he made at this press conference. 

Edney: Well, I feel like that puts the blame on either the mother or the child for something that no one has said is anyone’s fault, except maybe RFK Jr. It doesn’t help with treatment when you think that you can just not live near, I don’t know, an asbestos mine. I have no idea what the idea would be, but it puts the onus on the people who are suffering the most, when clearly what’s needed is more resources for people with autism for their families to access, which are also things that it seems that this administration has been trying to take away. 

Luthra: And if I can add one more point, Emmarie, I do think it’s worth flagging the extent to which RFK Jr.’s remarks suggest he doesn’t really understand what autism looks like in reality and in terms of how people with autism live in the world, which is very often quite normally as very high-functioning, productive members of society. He sort of used this language saying, Oh, if you have autism, you’ll never play baseball. You’ll never pay taxes. You’ll never go on a date. And that is just simply not true. Many people have autism and go on dates and get married and have children or pay taxes or play baseball, and I think it’s important for us to recognize that when he’s talking about this thing that he says is an epidemic with real public health harm and societal harm and is at the same time completely mischaracterizing what it actually looks like. 

Huetteman: That is such a great point. Thanks for adding that, Shefali. Well, Wednesday’s press conference is not the only recent example of Kennedy speaking out against his own employees. Last week, Kennedy visited the FDA to introduce himself to staff, not by laying out his vision for the future, but instead by talking about their alleged failings. In his remarks, Kennedy accused FDA employees of becoming a sock puppet of the industries they regulate and asserted that the “deep state” is real. 

That did not sit well with many staffers at the FDA who are reeling from the layoff of 3,500 of their colleagues in recent weeks. Several reportedly walked out while Kennedy was talking. And, well, the backlash is growing. Also last week, the American Public Health Association issued an extraordinary statement calling for Kennedy to resign. The statement cited Kennedy’s “implicit and explicit bias and complete disregard for science.” The American Public Health Association is the oldest and the largest association of public health officials in the world. In its 150-year history, the group has never called for the resignation of a health secretary. Is there any indication that the Trump administration is responding to the health community’s concerns about their actions so far? 

Edney: Not that I’ve seen. I know the APHA is a long-standing, very well-respected group. I don’t think that matters, unfortunately, in the case of speaking up for science right now. And maybe Jessie and Shefali, you’ve heard something different, but I certainly don’t think that President Trump is that concerned with what RFK Jr. is doing for the most part and seems to agree at least implicitly with the things he’s said. I mean, Trump himself has talked about a “deep state,” so I don’t think that anyone saying there’s this exodus of people, that’s a problem. I think it’s what they wanted. 

Luthra: And to add to that, Anna, I mean one thing that I think is really relevant when we think about how the president approaches health policy is that he’s never shown much interest in it. Even in his first presidency, it was largely outsourced to people who came from Mike Pence’s orbit and to members of Congress and everything that they pushed on health policy he signed off on but didn’t really spend a lot of time advocating for or pushing himself. And so I think with that in mind, it’s hard to imagine that the backlash to RFK Jr. from the health community would really resonate that much when this is never a community that’s really held much sway in his orbit. 

Huetteman: Absolutely. It seems like from the outside that Robert Kennedy is getting a lot of space to do what he’d like when it comes to health care, at least in terms of the policy changes that HHS is undergoing while Trump is taking, let’s say, more of a hands-off approach, at least from what we can look at. Although speaking of, Donald Trump has expressed some particular concern about certain health care issues the past, and one of them came up this week. As Americans weigh the day-to-day consequences of trade wars and isolationist policies, President Donald Trump revived a top pocketbook issue this week: He put out an executive order aimed at lowering drug prices. Now Trump’s order in part calls for changes to the Medicare drug negotiation program, but the changes could actually increase drug costs for the federal government by further delaying the program, which it’s worth noting is something that drugmakers have been pushing for.  

Trump’s order also directs the FDA to make it easier for states to gain approval to import drugs from other countries, including Canada. But Canada has been reticent to export drugs to the U.S. And, well, that’s before the recent cross-border tensions over tariffs and territory, of course. And there’s another complication. It also came out this week that the secretary of Commerce is investigating the national security effects of importing pharmaceuticals and pharmaceutical ingredients, suggesting that tariffs on drugs could be just around the corner. Anna, what would this executive order do to lower drug prices? 

Edney: I’m not completely sure because I felt like a lot of it was déjà vu. A lot of it was recycled ideas from the first Trump administration. We know … particularly you laid out some of the issues with importing drugs from Canada, and we know particularly that Florida tried to do this when rules were loosened previously, and they have in place the ability now but aren’t doing it. I mean, it’s just not a viable option for people. Canada doesn’t really want it, and then now we know if these tariffs are coming up, they could cost more to get them from Canada. So I don’t understand really the thinking here. It seems not unusual, to be honest, for the administration to kind of be working against itself in different ways. And for the one new thing, I mean, there were changes that the pharmaceutical industry has been asking for a while to the IRA, which would kind of … 

Huetteman: The Inflation Reduction Act. 

Edney: … yeah, with Medicare negotiation, they basically want to fix this pill loophole, that they call it, or this problem with the fact that pills are subject to this faster than biologic drugs, drugs that are kind of more complex. And so, if Trump does take that up, which he seems he’s kind of directed Congress to do something about it, then that would be something that would cost the government money. So I don’t know that that’s even anything Congress is that interested in doing at the moment because they would have to find the “pay-for.” 

Huetteman: That’s a great point. And right now they’re preoccupied with looking at ways to pay for other things, right? 

Luthra: Yeah, definitely. 

Huetteman: Tax cuts and border security, in particular, as the budget reconciliation process continues. Actually, and I think it’s really notable that we learned in the same week, that the federal government is exploring tariffs on pharmaceuticals. Could tariffs undermine these efforts to lower drug prices? 

Edney: Certainly. There are many parts of our medications, particularly active ingredients or even finished pills, particularly generics that we get from other countries. India is a very big one that’s involved in this. We even do get a lot of them and brand-name drugs from Europe. So there is concern that with tariffs, pretty much any drug is going to be touched in some way and potentially significantly enough to impose a tariff on it. So the drug companies will have to figure out, are we going to eat those increases and reduce our research and development, or are we going to raise prices even more in the country that pays the most for our drugs? 

Huetteman: There’s some theories that this could lead to even drug shortages. Is that right? 

Edney: Yeah, I think that’s absolutely possible because there will be companies and generics, this happens all the time already, that decide this isn’t worth it for us. The profit margin is just so, so low, and if it gets hit even more, then they’ll step out. And there are many generics that are so old and so unprofitable, or not unprofitable, that just they don’t make much at all. That if one thing disrupts, then we saw this with cancer drugs recently, there’s a shortage and people have to scramble to try to find it. 

Huetteman: Yeah, absolutely. We’ll be keeping an eye on that, among other things. And well, it’s been a couple of weeks since layoffs began at HHS, but the picture is still coming into focus. Continuing our coverage, here’s a very incomplete list of notable staffing cuts that have come to light. In a major blow, NIH [the National Institutes of Health] is preparing to lose the majority of its staff who work on contracts. The Trump administration laid off the entire staff of the Low-Income Home Energy Assistance Program. That program helps about 6.2 million people pay their utility bills. Also cut the entire CDC labs studying hepatitis, all full-time CDC employees who inspect cruise ships. And, by the way, fees are paid by cruise ship operators to cover those jobs, not tax dollars. 

Also cut the entire HHS office that sets poverty levels to determine who is eligible for government benefits including Medicaid. That last scoop came from my KFF Health News colleague, Arthur Allen. One laid-off employee told Arthur about the cuts: “It was random, as far as we can tell.” Meanwhile, Wired reports that cuts to staff at HHS are endangering the technological and cybersecurity infrastructure underpinning the entire health system. Is there a common thread here? Are there ways to summarize what’s been cut and why? 

Edney: I don’t know if there’s really a great way to summarize it. I think a lot of them are, what you just mentioned with the Wired story, are kind of people who create the scaffolding to hold HHS up essentially, who do IT security, who order supplies, who make sure that inspectors can safely get to their locations and have what they need. It’s people like that who seem to have just been completely decimated. And then you do have the bucket of anything that seems to indicate diversity, equity, inclusion, which we know is something that this administration does not agree with. And we have seen a lot of top people step down on their own as well, leadership disagreeing with what ways the administration has talked about different things. So I think there are at least some buckets, but it does seem pretty random, I’m sure, to a lot of the workers. But if you do even look at the people who calculate the poverty levels, that kind of goes towards the diversity, equity, inclusion, maybe lump kind of low-income in there where those are the things that they’d like to get rid of. 

Hellmann: And there have been people that has been “RIF’ed,” or received a reduction in force, and then have been asked to come back and help wind down an office, which I feel like shows that there might not have been a lot of thinking about some of these positions that they’re eliminating and how it could affect the agencies. And there’s already been a lot of stories about how things are getting really bogged down at the FDA and drug approvals are getting delayed and companies are having to delay clinical trials because they’re just not getting a lot of communication from the people that work there. And in some cases they may not work there anymore. 

Huetteman: That’s true. There was reporting out this week too, or who can even tell which week it was, that talked about how the FDA was bringing back laid-off employees or hiring contractors to cover food and drug safety that they had kind of not thought all the way through before they let go those workers. It’s just a lot of confusion, I think it’s a good way to sum it up. And Julie and I talk a lot about ways to describe this that aren’t just using the word “chaos,” but it’s true. There’s a lot of people around Washington who just have no sense of what’s going on and then the ripples out into the rest of the country and the health system from people who are trying to decide how to plan for their businesses, how to plan for their health clinic, how to order supplies. It’s an incredible sense of upheaval, I can say, in the way that it looks from here.  

All right, there’s much more to be learned, and if you’re a fan of sunshine, I do have some good news. Wired reports that the government accountability office is collecting information from Elon Musk’s DOGE effort about their work with Americans’ private data, including at HHS. That report is expected to be released this spring. In abortion news, the Guttmacher Institute is out this week with new data, which shows that the number of abortions in the United States increased slightly last year. For the second year in a row, there were more than 1 million abortions performed nationally. Shefali, what does this data tell us, and what are we seeing in states with abortion bans compared to those without? 

Luthra: I think what this shows us is that in the almost three years since Roe v. Wade was overturned, we settled into this deeply unequal state around the country in which in some states it is much easier to get abortions and others very difficult. And at the same time, people are really turning to immense workarounds to continue accessing abortion care. The data, if you look into it, shows the number of abortions really fell quite dramatically in a lot of states. For instance, Florida and South Carolina, states that enacted six-week abortion bans in the study period. And other places like Illinois, like Virginia, like New Mexico and Kansas, the number of abortions continues to go up. Virginia is interesting because it is now the only state in the South to allow abortions for much of pregnancy, and it is seeing a lot of people travel there from Florida, from South Carolina, Georgia, etc. 

I think what’s really important for us to also understand is how deeply fragile this whole ecosystem is. The Guttmacher data showed that 15% of people getting abortions are traveling out of state for that care. That is very expensive, often an inherently unplanned expense, and people are spending, in some cases, thousands of dollars to make this journey, sometimes even more. And the funds that have allowed them in many cases to pay for that travel are running out of resources and seeing declines in support even as need grows. 

Other people are accessing abortion through telehealth, getting medication mailed to them in their home states, using providers who are protected by their state shield laws. And those are also under threat — whether that comes from federal conversations on whether to change how those medications are prescribed and how they can legally be used, or bills in individual states where abortion opponents and anti-abortion lawmakers see that these workarounds are very effective and are trying to find ways to stop people from ordering medication into their state. 

I think the most important thing for us to understand right now is that people are going to immense means to get abortions. Some of them, and the data can’t fully paint this picture, are not able to do this so successfully. And there are real inequalities in terms of who can and who can’t. And even this status quo is so deeply fragile. I wouldn’t be surprised at all if it changes again or looks dramatically different in the next few years. 

Huetteman: Absolutely. Actually, to that end, I’m wondering what’s the significance of Guttmacher’s work now that the Trump administration is in place? How is that data collection going nationwide? 

Luthra: Frankly, work like this is going to be so crucial because we aren’t going to have a lot of places that will be tracking abortion or the impact of overturning Roe in a meaningful way. When we look at the HHS grants, the NIH grants that have been cut, some of that was in fact to research that would have followed people who tried to get abortions or were denied abortions and helped us illustrate the health consequences of that. So we don’t know if government-funded research will continue to help us better understand the impact of abortion bans. Organizations like Guttmacher, like the Society for Family Planning are really our only option at this point unless we see private donors step in and try and support researchers to make sure we keep getting information without which we could very well be in the dark while people’s health and economic well-being is dramatically affected. 

Huetteman: Well put. OK, that’s this week’s news. Now we’ll play Julie’s interview with UCSF researchers Krista Harrison and Robbie Zimbroff, and then we’ll come back and do our extra credits. 

Julie Rovner: I am so pleased to welcome to the podcast Krista Harrison and Robbie Zimbroff from the University of California-San Francisco, who have written about what could happen if the Supreme Court rules that the members of the U.S. Preventive Services Task Force were not constitutionally appointed and how that could impact what kind of preventive care will be covered by insurance without cost sharing. The Supreme Court is hearing the case Kennedy v. Braidwood on Monday, April 21. Drs. Harrison and Zimbroff, welcome to “What the Health?” 

Krista Harrison: Thank you so much for having us. 

Robbie Zimbroff: Thank you. 

Rovner: Let’s start by talking about what the USPSTF is and what it does. Robbie, you want to start off? 

Zimbroff: Sure. The USPSTF stands for the United States Preventive Services Task Force. It is an independent advisory board within the Department of Health and Human Services. They are volunteer physicians, experts in epidemiology, preventive care who make the best possible recommendations about which preventive services can help Americans live longer, healthier lives. 

Rovner: And they basically grade them like you do in school, right? 

Zimbroff: Yeah. So they make recommendations based on the quality of evidence and the magnitude of the net benefit of how much a preventive service might help a given individual. And they can either say, yes, that gets an A, that is strongly recommended by the USPSTF, a B, or an I, if it’s sort of not totally known yet, there’s not enough evidence to say We recommend this. Overall, there are over 90 USPSTF recommendations that span from pre and perinatal care all the way to cancer screenings and care of older adults. 

Rovner: And just to be clear, this task force has been around since the 1980s. This is not something that was created by the Affordable Care Act, right? They’ve been making these recommendations and people have been using these recommendations to decide what to cover, right? 

Zimbroff: Absolutely. 

Harrison: Absolutely. 

Rovner: So what is the issue now and here and what does it have to do with the Affordable Care Act? 

Harrison: So when the Affordable Care Act was being designed and enacted, their goal was to improve health and well-being for the most people possible by improving coverage. And of course, one of the things research has shown over time is that one of the best ways to do that is to reduce the amount that people have to pay to get preventive services. Because, of course, if you catch things before they become big problems, they’re often either cheaper or you just have people live in better health longer, which allows them to do more things and be in greater health. So when the Affordable Care Act got enacted, they said, Well, since we’re requiring all of this new coverage, we will use what is already out there, this existing task force, these existing recommendations. And if this independent task force says this is a high-quality recommendation, we will require all insurers who are participating, who are not grandfathered into a different echelon, to provide this care at no cost so that more people get preventive services. 

Rovner: Because we know that even small copays, even small requirements, can deter people. Right? 

Harrison: Exactly. That is what the research says. 

Zimbroff: The copays that deter many patients from seeking care that we know works and help people live longer is as low as $5; it’s not a copay that is $0 to $500 — $5, $10, under $100. There is data for every cut point of what price will deter people from being able to afford medication that can help keep them healthier. 

Rovner: And … going and taking time out of your day to go have a medical procedure is not always something people are really gung-ho to do. So who’s challenging it? 

Zimbroff: The challengers are a set of plaintiffs who actually are bringing a religious freedom claim against preventive services that are covered or recommended by the USPSTF and thus have a mandate to be covered by insurers and payers without any cost sharing. Those specific services initially spanned from ASIP, the committee that makes independent recommendations about vaccines for HPV vaccines, but also in this case it is strictly focused on the USPSTF’s recommendations about HIV preexposure prophylaxis, more commonly known as PrEP. The claim from the plaintiffs is that it is not in line with their religious beliefs to be providing these services and they should not be required to. The lawsuit is about whether the USPSTF is constitutionally structured as one argument against why they should not be mandated to provide this coverage to their employees. 

Rovner: So what would happen if the Supreme Court ruled that the task force members were not appropriately appointed? Would all free preventive care just stop? 

Harrison: Well, we don’t entirely know, because it hasn’t happened yet. But the guess is that a lot of insurers will decide that they don’t in fact want to cover certain types of preventive services, particularly for things that are long in the future. So if somebody is being screened for something that is likely to develop after age 65, insurers might decide, well, that’s Medicare’s problem. We don’t want to put in the money. We’ll just assume that if they get sick, we won’t have to pay for it. And so that could really result in quite a bit of coverage being dropped, 

Rovner: Although things that were pre-the ACA would continue, right? 

Zimbroff: Yes. The recommendations don’t go away and the coverage is still possible to be offered with zero cost to patients. There’s just a lot of uncertainty. I think the uncertainty both offers insurers a lot of options for trying to shift costs back to patients, but it also provides uncertainty to patients about whether they will have to pay for a colon cancer screening or a lung cancer screening. That might be another deterrent from them going, just not knowing one way or the other. 

Rovner: And there are potential health implications here, right? 

Zimbroff: Yeah. I think one of the great examples of the effect of this provision of the Affordable Care Act has been lung cancer screening. So this was initially a recommendation that was made by the United States Preventive Services Task Force in 2013, and since that was after the Affordable Care Act, its implementation for coverage by payers has been cost-free to patients. It has lowered barriers to getting lung cancer screening. And there’s research that estimates that over 80,000 life years have been added to Americans by catching cancer early or pre-malignant lesions on low-dose CT scans for millions of Americans across the board. 

Rovner: So I was a little bit surprised that the Trump administration decided to defend this case. Asking for expert medical advice doesn’t seem to be on Secretary Kennedy’s short list of priorities, or do you think he has other plans for the task force? 

Harrison: That’s a good question. I don’t know if we’ve seen much evidence, that you would think that this very much aligns with Secretary Kennedy’s focus on preventing and reducing the burden of chronic diseases. Certainly lung cancer and colorectal cancer fall in those categories. But on the other hand, we’re seeing a lot of changes to how this administration thinks about external advisory groups that were formerly independent or considered to be independent. So again, we’re just seeing — and the word “unprecedented” doesn’t really cut it anymore — but a novel amount of uncertainty and change. 

Zimbroff: Julie, I was also surprised that the administration initially decided to maintain their posture of the prior administration. Reading their most recent filings — again, with the full disclaimer that I’m not a constitutional scholar and so take my read with a grain of salt — is that the reading of the powers of the Health and Human Services secretary, who’s a political appointee overseeing this independent agency, the secretary actually has at-will removal powers for any task force member with which the secretary may disagree, may be able to delay the implementation of those recommendations and effectively veto a recommendation. The language is pretty strong by my, again, non-legal read of the reply brief from the government in this take, which I think is a different relationship or different understanding of the role of the secretary in evaluating and potentially vetoing expert recommendations that are designed to be explicitly nonpartisan and evidence-based. 

Rovner: So we will have to see what happens in this case, Dr. Krista Harrison and Dr. Robbie Zimbroff, thank you so much for joining us. 

Harrison: Our pleasure. 

Zimbroff: Thanks for having us. 

Harrison: Thank you for having us. 

Huetteman: 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 that we think you should read, too. Don’t worry if you miss it. We’ll put the links in our show notes on your phone or other mobile device. Shefali, why don’t you go first this week? 

Luthra: Absolutely. This story is from my colleague Jessica Kutz, who covers gender, climate and sustainability for The 19th. The headline is “Trump’s Push for ‘Beautiful Clean Coal’ Could Lead to More Premature Births.” The headline says what the story is about. She examines the potential implications for an executive order meant to bring what he calls “clean coal” as a more meaningful resource, again, to expand coal mining in public lands. And what I like about this story is that it reminds us who is affected and what the implications would be. I think the research that she cites about the relationship between coal mining and premature birth, which can lead to infant mortality, is really compelling and really important as we consider the talk about building a pro-family administration, a pro-life administration, and at the same time embracing these environmental policies, but could be quite harmful for people’s health, and particularly for the health of people who are already in many cases left out of what this administration’s embraced policy is around access to health care. 

Huetteman: Thanks for that. Anna, why don’t you go next? 

Edney: Sure. Mine is by Heather Vogell in ProPublica. It’s titled “Unsanitary Practices Persist at Baby Formula Factory Whose Shutdown Led to Mass Shortages, Workers Say.” This was just a brilliant follow-up to all the issues that went on with Abbott Laboratories a couple years ago that led to huge infant formula shortages across the U.S. The lab was unsanitary. The FDA had to basically tell them, You need to shut this down and fix everything. 

And they were able to work with FDA, get back open, take care of a lot of the shortages, but she talked to several workers who are concerned that they’re just back to their unsanitary practices. Again, there’s a lot of disturbing detail in here that I think is worth a read and also something really worthy of keeping an eye on for accountability because the Food and Drug Administration’s new head of food is an industry lawyer, Kyle Diamantas, who has defended Abbott in his past life, working at a big law firm. So what FDA will do here will be interesting as well, whether they’ll go back there and see if they see the same things that this reporter was told was going on. 

Huetteman: Wow. We’ll keep an eye on that. Jessie, your turn. 

Hellmann: My extra credit is from Sharon Udasin and Rachel Frazin at The Hill. It’s titled, “Military’s Use of Toxic ‘Forever Chemicals’ Leaves Lasting Scars.” It’s an excerpt from an entire book that they did called “Poisoning the Well,” focusing on how synthetic chemicals known as PFAS have been tied to health issues despite scientists knowing for decades that these products are dangerous and linked to many health problems, including cancer. So this specific excerpt looks at the military’s use of firefighting foam in military bases and how it has leached into water supplies all across the country and has made people really sick, and some people have even died. The military continued to use this foam for decades, and they’re doing evaluations now to determine which bases require cleanup, but that’s something that could take decades and communities are continuing to experience the fallout from this. And it’s just one example of the impact of PFAS in America and the kind of impact that it has on communities and something that, I think, deserves more attention even as we’re all just dealing with an onslaught of health news right now. 

Huetteman: Well, thanks for bringing attention to that one. I appreciate it. And my extra credit this week is from my KFF Health News colleagues Sam Whitehead, Phil Galewitz, and Katheryn Houghton. This headline is “States Push Medicaid Work Rules, but Few Programs Help Enrollees Find Jobs.” We all know from this podcast that Republicans in several states and in Congress are considering work requirements, which would mandate that many people have jobs in order to qualify for Medicaid coverage. So my colleagues explored what Medicaid health plans do to help people find work. They found that few Medicaid programs offer job help, and it can be transformative, but for the most part, these programs have low enrollment and they don’t collect the data to know if they work. As the story points out, there’s limited demand for employment help. And well, here’s the rub for GOP claims about the significance of work requirements: There’s limited demand because most people on Medicaid already work, just not in jobs that provide health benefits.  

OK, that’s this week’s show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review; that helps other people find us, too. Thanks as always to our producer, Francis Ying, and to Stephanie Stapleton, our substitute editor while I’m on the other side of the mic this week. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can find me on LinkedIn. Where are you guys these days? 

Edney: I’m also on LinkedIn and on Bluesky or Twitter [X] at @annaedney. 

Huetteman: Shefali? 

Luthra: I am at Bluesky, @shefali. 

Huetteman: And Jessie. 

Hellmann: I’m on LinkedIn and I’m on X and Bluesky, @jessiehellmann. 

Huetteman: Julie will be back next week. Until then, be healthy. 

Credits Francis Ying Audio producer Stephanie Stapleton Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

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The Host Emmarie Huetteman KFF Health News Emmarie Huetteman, senior editor, oversees a team of Washington reporters, as well as “Bill of the Month” and KFF Health News’ “What the Health?” She previously spent more than a decade reporting on the federal government, most recently covering surprise medical bills, drug pricing reform, and other health policy debates in Washington and on the campaign trail. 

The secretary of Health and Human Services, Robert F. Kennedy Jr., contradicted his agency’s researchers this week with unsubstantiated or outright false claims about autism spectrum disorder and those with the condition. His public remarks were not the only recent example of Kennedy speaking against his employees; during an introductory appearance at the FDA, Kennedy said the staff — reeling from the layoffs of 3,500 colleagues — had become beholden to the industries they regulate.

Meanwhile, President Donald Trump issued an executive order aimed at lowering drug prices as his administration signaled that tariffs on pharmaceuticals and pharmaceutical ingredients could be on deck. And new data shows that the number of abortions performed nationwide increased slightly last year, as travel and telehealth prescribing maintained access for some patients in states with abortion bans.

This week’s panelists are Emmarie Huetteman of KFF Health News, Anna Edney of Bloomberg News, Jessie Hellmann of CQ Roll Call, and Shefali Luthra of The 19th.

Panelists Anna Edney Bloomberg News @annaedney @annaedney.bsky.social Read Anna's stories. Jessie Hellmann CQ Roll Call @jessiehellmann @jessiehellmann.bsky.social Read Jessie's stories. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories.

Among the takeaways from this week’s episode:

• Kennedy’s claim that genetics do not play a role in the development of autism contradicts decades of scientific inquiry into the disorder — including the work of his agency’s own researchers, at the Centers for Disease Control and Prevention, who say there is indeed a genetic component to autism. Further, his striking remarks about the severe limitations of those with the disorder do not reflect reality for the many people living with autism.
• Trump’s executive order to lower drug prices calls for changes to the Medicare drug negotiation program that could instead increase costs for the federal government. It also calls for the FDA to make it easier for states to import drugs from other countries, including Canada — but, among other things, the introduction of tariffs on drugs and drug ingredients could negate other efforts to lower prices.
• And the picture of federal health cuts is still coming into focus, as people throughout the health care system grapple with the effects of slashing government efforts to do things like help Americans afford utility bills, monitor the spread of hepatitis, and much — much — more.

Also this week, Julie Rovner of KFF Health News interviews Krista Harrison and Robbie Zimbroff, health policy researchers at the University of California-San Francisco. They share some background on a case before the Supreme Court next week, Kennedy v. Braidwood Management, which challenges the ability of the U.S. Preventive Services Task Force to make expert recommendations for American health.

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

Emmarie Huetteman: KFF Health News’ “States Push Medicaid Work Rules, but Few Programs Help Enrollees Find Jobs,” by Sam Whitehead, Phil Galewitz, and Katheryn Houghton.

Anna Edney: ProPublica’s “Unsanitary Practices Persist at Baby Formula Factory Whose Shutdown Led to Mass Shortages, Workers Say,” by Heather Vogell.

Jessie Hellmann: The Hill’s “Military’s Use of Toxic ‘Forever Chemicals’ Leaves Lasting Scars,” by Sharon Udasin and Rachel Frazin.

Shefali Luthra: The 19th’s “Trump’s Push for ‘Beautiful Clean Coal’ Could Lead to More Premature Births,” by Jessica Kutz.

Also mentioned in this week’s podcast:

• KFF Health News’ “Trump HHS Eliminates Office That Sets Poverty Levels Tied to Benefits for at Least 80 Million People,” by Arthur Allen.
• Wired’s “HHS Systems Are in Danger of Collapsing, Workers Say,” by David Gilbert.
• Wired’s “Elon Musk’s DOGE Is Getting Audited,” by Leah Feiger and Tim Marchman.

Credits Francis Ying Audio producer Stephanie Stapleton Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

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The National Institutes of Health’s sweeping cuts of grants that fund scientific research are inflicting pain almost universally across the U.S., including in most states that backed President Donald Trump in the 2024 election.

A KFF Health News analysis underscores that the terminations are sparing no part of the country, politically or geographically. About 40% of organizations whose grants the NIH cut in its first month of slashing, which started Feb. 28, are in states Trump won in November.

The Trump administration has singled out Ivy League universities including Columbia and Harvard for broad federal funding cuts. But the spending reductions at the NIH, the nation’s foremost source of funding for biomedical research, go much further: Of about 220 organizations that had grants terminated, at least 94 were public universities, including flagship state schools in places such as Florida, Georgia, Ohio, Nebraska, and Texas.

The Trump administration has canceled hundreds of grants supporting research on topics such as vaccination; diversity, equity, and inclusion; and the health of LGBTQ+ populations. Some of the terminations are a result of Trump’s executive orders to abandon federal work on diversity and equity issues. Others followed the Senate confirmation of anti-vaccine activist Robert F. Kennedy Jr. to lead the Department of Health and Human Services, which oversees the NIH. Many mirror the ambitions laid out in Project 2025’s “Mandate for Leadership,” the conservative playbook for Trump’s second term.

Affected researchers say Trump administration officials are taking a cudgel to efforts to improve the lives of people who often experience worse health outcomes — ignoring a scientific reality that diseases and other conditions do not affect all Americans equally.

KFF Health News found that the NIH terminated about 780 grants or parts of grants between Feb. 28 and March 28, based on documents published by the Department of Health and Human Services and a list maintained by academic researchers. Some grants were canceled in full, while in other cases, only supplements — extra funding related to the main grant, usually for a shorter-term, related project — were terminated.

Among U.S. recipients, 96 of the institutions that lost grants in the first month are in politically conservative states including Florida, Ohio, and Indiana, where Republicans control the state government or voters reliably support the GOP in presidential campaigns, or in purple states such as North Carolina, Michigan, and Pennsylvania that were presidential battleground states. An additional 124 institutions are in blue states.

Sybil Hosek, a research professor at the University of Illinois-Chicago, helps run a network that focuses on improving care for people 13 to 24 years old who are living with or at risk for HIV. The NIH awarded Florida State University $73 million to lead the HIV project.

“We never thought they would destroy an entire network dedicated to young Americans,” said Hosek, one of the principal investigators of the Adolescent Medicine Trials Network for HIV/AIDS Interventions. The termination “doesn’t make sense to us.”

NIH official Michelle Bulls is director of the Office of Policy for Extramural Research Administration, which oversees grants policy and compliance across NIH institutes. In terminating the grant March 21, Bulls wrote that research “based primarily on artificial and nonscientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment, and ultimately do not enhance health, lengthen life, or reduce illness.”

Adolescents and young adults ages 13 to 24 accounted for 1 in 5 new HIV infections in the U.S. in 2022, according to the Centers for Disease Control and Prevention.

“It’s science in its highest form,” said Lisa Hightow-Weidman, a professor at Florida State University who co-leads the network. “I don’t think we can make America healthy again if we leave youth behind.”

HHS spokesperson Emily Hilliard said in an emailed statement that “NIH is taking action to terminate research funding that is not aligned with NIH and HHS priorities.” The NIH and the White House didn’t respond to requests for comment.

“As we begin to Make America Healthy Again, it's important to prioritize research that directly affects the health of Americans. We will leave no stone unturned in identifying the root causes of the chronic disease epidemic as part of our mission to Make America Healthy Again,” Hilliard said.

Harm to HIV, Vaccine Studies

The NIH, with its nearly $48 billion annual budget, is the largest public funder of biomedical research in the world, awarding nearly 59,000 grants in the 2023 fiscal year. The Trump administration has upended funding for projects that were already underway, stymied money for new applications, and sought to reduce how much recipients can spend on overhead expenses.

Those changes — plus the firing of 1,200 agency employees as part of mass layoffs across the government — are alarming scientists and NIH workers, who warn that they will undermine progress in combating diseases and other threats to the nation’s public health. On April 2, the American Public Health Association, Ibis Reproductive Health, and affected researchers, among others, filed a lawsuit in federal court against the NIH and HHS to halt the grant cancellations.

Two National Cancer Institute employees, who were granted anonymity because they were not authorized to speak to the press and feared retaliation, said its staff receives batches of grants to terminate almost daily. On Feb. 27, the cancer institute had more than 10,800 active projects, the highest share of the NIH’s roughly two dozen institutes and centers, according to the NIH’s website. At least 47 grants that NCI awarded were terminated in the first month.

Kennedy has said the NIH should take a years-long pause from funding infectious disease research. In November 2023, he told an anti-vaccine group, “I’m gonna say to NIH scientists, ‘God bless you all. Thank you for public service. We’re going to give infectious disease a break for about eight years,’” according to NBC News.

For years, Kennedy has peddled falsehoods about vaccines — including that “no vaccine” is “safe and effective,” and that “there are other studies out there” showing a connection between vaccines and autism, a link that has repeatedly been debunked — and claimed falsely that HIV is not the only cause of AIDS.

KFF Health News found that grants in blue states were disproportionately affected, making up roughly two-thirds of terminated grants, many of them at Columbia University. The university had more grants terminated than all organizations in politically red states combined. On April 4, Democratic attorneys general in 16 states sued HHS and the NIH to block the agency from canceling funds.

Researchers whose funding was stripped said they stopped clinical trials and other work on improving care for people with HIV, reducing vaping and smoking rates among LGBTQ+ teens and young adults, and increasing vaccination rates for young children. NIH grants routinely span several years.

For example, Hosek said that when the youth HIV/AIDS network’s funding was terminated, she and her colleagues were preparing to launch a clinical trial examining whether a particular antibiotic that is effective for men to prevent sexually transmitted infections would also work for women.

“This is a critically important health initiative focused on young women in the United States,” she said. “Without that study, women don’t have access to something that men have.”

Other scientists said they were testing how to improve health outcomes among newborns in rural areas with genetic abnormalities, or researching how to improve flu vaccination rates among Black children, who are more likely to be hospitalized and die from the virus than non-Hispanic white children.

“It's important for people to know that — if, you know, they are wondering if this is just a waste of time and money. No, no. It was a beautiful and rare thing that we did,” said Joshua Williams, a pediatric primary care doctor at Denver Health in Colorado who was researching whether sharing stories about harm experienced due to vaccine-preventable diseases — from missed birthdays to hospitalizations and job loss — might inspire caregivers to get their children vaccinated against the flu.

He and his colleagues had recruited 200 families, assembled a community advisory board to understand which vaccinations were top priorities, created short videos with people who had experienced vaccine-preventable illness, and texted those videos to half of the caregivers participating in the study.

They were just about to crack open the medical records and see if it had worked: Were the group who received the videos more likely to follow through on vaccinations for their children? That’s when he got the notice from the NIH.

“It is the policy of NIH not to prioritize research activities that focuses gaining scientific knowledge on why individuals are hesitant to be vaccinated and/or explore ways to improve vaccine interest and commitment,” the notice read.

Williams said the work was already having an impact as other institutions were using the idea to start projects related to cancer and dialysis.

A Hit to Rural Health

Congress previously tried to ensure that NIH grants also went to states that historically have had less success obtaining biomedical research funding from the government. Now those places aren’t immune to the NIH’s terminations.

Sophia Newcomer, an associate professor of public health at the University of Montana, said she had 18 months of work left on a study examining undervaccination among infants, which means they were late in receiving recommended childhood vaccines or didn’t receive the vaccines at all. Newcomer had been analyzing 10 years of CDC data about children’s vaccinations and had already found that most U.S. infants from 0 to 19 months old were not adequately vaccinated.

Her grant was terminated March 10, with the NIH letter stating the project “no longer effectuates agency priorities,” a phrase replicated in other termination letters KFF Health News has reviewed.

“States like Montana don’t get a lot of funding for health research, and health researchers in rural areas of the country are working on solutions to improve rural health care,” Newcomer said. “And so cuts like this really have an impact on the work we’re able to do.”

Montana is one of 23 states, along with Puerto Rico, that are eligible for the NIH’s Institutional Development Award program, meant to bolster NIH funding in states that historically have received less investment. Congress established the program in 1993.

The NIH’s grant terminations hit institutions in 15 of those states, more than half that qualify, plus Puerto Rico.

Researchers Can’t ‘Just Do It Again Later’

The NIH’s research funds are deeply entrenched in the U.S. health care system and academia. Rarely does an awarded grant stay within the four walls of a university that received it. One grant’s money is divvied up among other universities, hospitals, community nonprofits, and other government agencies, researchers said.

Erin Kahle, an infectious disease epidemiologist at the University of Michigan, said she was working with Emory University in Georgia and the CDC as part of her study. She was researching the impact of intimate partner violence on HIV treatment among men living with the virus. “They are relying on our funds, too,” she said.

Kahle said her top priority was to ethically and safely wind down her nationwide study, which included 418 people, half of whom were still participating when her grant was terminated in late March. Kahle said that includes providing resources to participants for whom sharing experiences of intimate partner violence may cause trauma or mental health distress.

Rachel Hess, the co-director of the Clinical & Translational Science Institute at the University of Utah, said the University of Nevada-Reno and Intermountain Health, one of the largest hospital systems in the West, had received funds from a $38 million grant that was awarded to the University of Utah and was terminated March 12.

The institute, which aims to make scientific research more efficient to speed up the availability of treatments for patients, supported over 5,000 projects last year, including 550 clinical trials with 7,000 participants. Hess said that, for example, the institute was helping design a multisite study involving people who have had heart attacks to figure out the ideal mix of medications “to keep them alive” before they get to the hospital, a challenge that’s more acute in rural communities.

After pushback from the university — the institute’s projects included work to reduce health care disparities between rural and urban areas — the NIH restored its grant March 29.

Among the people the Utah center thanked in its announcement about the reversal were the state’s congressional delegation, which consists entirely of Republican lawmakers. “We are grateful to University of Utah leadership, the University of Utah Board of Trustees, our legislative delegation, and the Utah community for their support,” it said.

Hilliard, of HHS, said that “some grants have been reinstated following the appeals process, and the agency will continue to carry out the remaining appeals as planned to determine their alignment.” She declined to say how many had been reinstated, or why the University of Utah grant was among them.

Other researchers haven’t had the same luck. Kahle, in Michigan, said projects like hers can take a dozen years from start to finish — applying for and receiving NIH funds, conducting the research, and completing follow-up work.

“Even if there are changes in the next administration, we’re looking at at least a decade of setting back the research,” Kahle said. “It’s not as easy as like, ‘OK, we’ll just do it again later.’ It doesn’t really work that way.”

Methodology

KFF Health News analyzed National Institutes of Health grant data to determine the states and organizations most affected by the Trump administration’s cuts.

We tallied the number of terminated NIH grants using two sources: a Department of Health and Human Services list of terminated grants published April 4; and a crowdsourced list maintained by Noam Ross of rOpenSci and Scott Delaney of the Harvard T.H. Chan School of Public Health, as of April 8. We focused on the first month of terminations: from Feb. 28 to March 28. We found that 780 awards were terminated in total, with 770 of them going to recipients based in U.S. states and two to recipients in Puerto Rico.

The analysis does not account for potential grant reinstatements, which we know happened in at least one instance.

Additional information on the recipients, such as location and business type, came from the USAspending.gov Award Data Archive.

There were 222 U.S. recipients in total. At least 94 of them were public higher education institutions. Forty-one percent of organizations that had NIH grants cut in the first month were in states that President Donald Trump won in the 2024 election.

Some recipients, including the University of Texas MD Anderson Cancer Center and Vanderbilt University Medical Center, are medical facilities associated with higher education institutions. We classified these as hospitals/medical centers.

We also wanted to see whether the grant cuts affected states across the political spectrum. We generally classified states as blue if Democrats control the state government or Democratic candidates won them in the last three presidential elections, and red if they followed this pattern but for Republicans. Purple states are generally presidential battleground states or those where voters regularly split their support between the two parties: Arizona, Michigan, Nevada, New Hampshire, North Carolina, Pennsylvania, Virginia, and Wisconsin. The result was 25 red states, 17 blue states, and eight purple states. The District of Columbia was also blue.

We found that, of affected U.S. institutions, 96 were in red or purple states and 124 were in blue states.

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

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If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

Overcome by worries, Lynette Isbell dialed a mental health hotline in April 2022. She wanted to talk to someone about her midlife troubles: divorce, an empty nest, and the demands of caring for aging parents with dementia.

“I did not want to keep burdening my family and friends with my problems,” Isbell said.

But she didn’t find the sympathetic ear she was hoping for on the other end. Frustrated, she hung up. Little did she know ending that call would set off events she would regret.

Police arrived at her home in Terre Haute, Indiana, handcuffed her, and had her committed to a hospital, records show, resulting in more than $12,000 in hospital charges.

“The whole thing was an absolute, utter, traumatic nightmare,” she said.

Isbell’s call for help represented the need for a new approach to crisis calls just as the nation was readying to flip the switch to a revamped response system for mental health. Using just three digits — 988 — people could call or text for help from anywhere at any time starting in July 2022. Federal officials viewed the launch of 988 “as the linchpin” to reenvision the mental health crisis system. The idea was to reduce the reliance on police and the burden on emergency rooms, while eliminating the stigma of seeking help.

But recent federal funding and staffing cuts undermine the future of the 988 program and threaten to erase progress made in Indiana and elsewhere, mental health advocates said.

The Trump administration cut staffing at the Substance Abuse and Mental Health Services Administration, the federal office that oversees 988, in recent weeks. It also ended $1 billion of its grants that a number of states relied on this year to help fund their 988 systems, said Stephanie Pasternak, state affairs director of the National Alliance on Mental Illness. While a judge temporarily paused grant cuts for 23 states that contested them, the trims to other states — including Indiana — have moved forward.

Between the SAMHSA cuts and potential reductions to Medicaid, another crucial funding stream for these services, Pasternak and others are concerned about what this means for 988’s future.

Any disruption to federal funding streams is “gravely impactful,” said Zoe Frantz, CEO of the Indiana Council of Community Mental Health Centers. “We have put a lot of time, talent, and treasure — from the state to providers — in trying to build the system,” Frantz said. “We can’t go back.”

After Isbell hung up her call, a member of the Suicide Prevention Hotline, the crisis line formerly available, phoned the Vigo County Sheriff’s Office and told a dispatcher Isbell was “thinking of committing suicide,” according to the sheriff’s report obtained by KFF Health News.

Years later, Isbell maintains she never said this. “I’ve never been actively suicidal.”

But two officers drove to Isbell’s home.

When they arrived, Isbell was sitting on her back porch on a sunny day with trees just starting to bud. The officer’s report alleged she admitted to thinking about driving her car into a tree, wanting doctor-assisted suicide, and fantasizing about a semitruck hitting her.

She contends active suicidal ideation with a plan is different than the overwhelmed feelings she had that day.

“It was like a childhood game of telephone, only not at all funny,” she said. What she said became distorted and left her no recourse.

The officers walked her to a squad car, where they handcuffed her before transporting her to Terre Haute Regional Hospital, according to dashcam video obtained from a public records request. Neighbors watched as she was taken away.

“I don’t know why I needed to be handcuffed,” she said. “It was demoralizing.”

The Vigo County Sheriff’s Office did not respond to requests for comment about Isbell’s case.

Isbell said being hospitalized against her wishes humiliated her and forced her to battle confusing medical bills for months. An itemized bill shows the hospital charged $12,772 for her overnight stay. After insurance, Isbell was on the hook for roughly $2,800. By comparison, a one-night stay in the presidential suite at the new Terre Haute Casino Resort is $2,471. Terre Haute Regional Hospital spokesperson Ann Marie Foote said Isbell’s bill was “discounted down” to $1,400.

“Our highest priority is always the safety and well-being of patients,” Foote said.

According to Isbell’s medical records, doctors there said “she was very stressed” and “just wanted to speak to someone” and reiterated “she was not suicidal.” They said her anxiety “is increased and made worse by being in here.”

She had “anxiety” and a “depressed mood,” and, according to medical records signed by a psychiatrist there, “she does not meet current criteria for involuntary hospitalization.” She was discharged the next day.

Upset by how she was treated, she contacted 988, the sheriff’s office, and the hospital.

In response to KFF Health News’ questions about Isbell’s experience, Michele Holtkamp, a spokesperson at the time for Indiana’s Family and Social Services Administration, said that before the launch of 988, “the state did not have oversight of individual crisis lines and how they responded.”

After 988 began, Isbell received a follow-up email from an executive with Mental Health America, introducing her to the director of Indiana’s 988 hotline, Kara Biro.

“I shared your story with her and we agree that we would love to get you to help with a training video,” wrote Brandi Christiansen, CEO of Mental Health America-Wabash Valley Region. She explained it would provide workers an opportunity to understand the real-life implications an “outcall can have on a human being.” The video has yet to happen, Isbell said.

The sheriff’s department also asked for her input to improve the process, she said.

Isbell saw those as signs of a turnaround. For mental health leaders in Indiana, 988 represented a “springboard to transform and build” a new response system, according to a 2022 Indiana Behavioral Health Commission report. Too often, the report said, Indiana’s “ineffective and inefficient” system had relied heavily on police and emergency rooms.

Before 988, the state hotline also relied almost entirely on volunteers, complicating efforts to standardize responses, said Jay Chaudhary, a former director of Indiana’s Division of Mental Health and Addiction, who led the state’s transition to 988.

“When somebody makes the really brave step to seek help with mental health care, that system better be ready to catch them,” he said.

Today, Indiana ranks among the 10 states with the highest 988 answer rates, a sign it can handle the demand, said Laurel Stine, chief advocacy and policy officer with the American Foundation for Suicide Prevention.

In Indiana, behavioral health professionals now lead the response via mobile crisis teams, not law enforcement, such as the officers who handcuffed Isbell.

As of July, mobile crisis teams were available to 4.8 million people living in 65 of Indiana’s 92 counties, reaching roughly 71% of residents, according to a 2024 report from the behavioral health commission. In the first half of last year, mobile crisis teams were dispatched 3,080 times for help. Law enforcement officers were involved in about 1% of those cases and roughly 10% resulted in a trip to the emergency room, according to the report.

Similar efforts have occurred nationwide since the 2022 launch. The 988 hotline received 4.8 million calls, texts, and chats during its first year, which is roughly nine times a minute, according to Substance Abuse and Mental Health Services Administration data.

But the federal government has terminated numerous grants earmarked for Indiana and other states to tackle mental health and substance use issues. Still, SAMHSA spokesperson Danielle Bennett said the 988 hotline is a “critical function” and that the federal government “will never compromise” protecting people experiencing a crisis. The hotline, Bennett said, “continues daily, life-saving work.”

The Indiana agency tasked with overseeing 988 had more than $98 million in SAMHSA grants but received 73% of that as of March 24, when the grants were terminated, according to a government list of cuts. That leaves Indiana $26 million short.

Some federal grants were passed through to local organizations, including one group that received grant money for “mobile crisis units,” according to an online grant summary. In a statement, Indiana Family and Social Services Administration spokesperson James Vaughn confirmed it received notice of the terminated SAMHSA grants but declined to provide details other than to say it is “working to minimize the impact to Hoosiers.”

Isbell hopes the 988 option doesn’t disappear for those who need a hand, not handcuffs.

She dealt with the fallout of that fateful call for a long time. After more than a year, she said, she paid the $1,400 bill to put the ordeal behind her.

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

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Michele Andrews had been seeing her internist in Northampton, Massachusetts, a small city two hours west of Boston, for about 10 years. She was happy with the care, though she started to notice it was becoming harder to get an appointment.

“You’d call and you’re talking about weeks to a month,” Andrews said.

That’s not surprising, as many workplace surveys show the supply of primary care doctors has fallen well below the demand, especially in rural areas such as western Massachusetts. But Andrews still wasn’t prepared for the letter that arrived last summer from her doctor, Christine Baker, at Pioneer Valley Internal Medicine.

“We are writing to inform you of an exciting change we will be making in our Internal Medicine Practice,” the letter read. “As of September 1st, 2024, we will be switching to Concierge Membership Practice.”

Concierge medicine is a business model in which a doctor charges patients a monthly or annual membership fee — even as the patients continue paying insurance premiums, copays, and deductibles. In exchange for the membership fee, doctors limit their number of patients.

Many physicians who’ve made the change said it resolved some of the pressures they faced in primary care, such as having too many patients to see in too short a time.

Andrews was floored when she got the letter. “The second paragraph tells me the yearly fee for joining will be $1,000 per year for existing patients. It’ll be $1,500 for new patients,” she said.

Although numbers are not tracked in any one place, the trade magazine Concierge Medicine Today estimates there are 7,000 to 22,000 concierge physicians in the U.S. Membership fees range from $1,000 to as high as $50,000 a year.

Critics say concierge medicine helps only patients who have extra money to spend on health care, while shrinking the supply of more traditional primary care practices in a community. It can particularly affect rural communities already experiencing a shortage of primary care options.

Andrews and her husband had three months to either join and pay the fee or leave the practice. They left.

“I’m insulted and I’m offended,” Andrews said. “I would never, never expect to have to pay more out of my pocket to get the kind of care that I should be getting with my insurance premiums.”

Baker, Andrews’ former physician, said fewer than half her patients opted to stay — shrinking her patient load from 1,700 to around 800, which she considers much more manageable. Baker said she had been feeling so stressed that she considered retiring.

“I knew some people would be very unhappy. I knew some would like it,” she said. “And a lot of people who didn’t sign up said, ‘I get why you’re doing it.’”

Patty Healey, another patient at Baker’s practice, said she didn’t consider leaving.

“I knew I had to pay,” Healey said. As a retired nurse, Healey knew about the shortages in primary care, and she was convinced that if she left, she’d have a very difficult time finding a new doctor. Healey was open to the idea that she might like the concierge model.

“It might be to my benefit, because maybe I’ll get earlier appointments and maybe I’ll be able to spend a longer period of time talking about my concerns,” she said.

This is the conundrum of concierge medicine, according to Michael Dill, director of workforce studies at the Association of American Medical Colleges. The quality of care may go up for those who can and do pay the fees, Dill said. “But that means fewer people have access,” he said. “So each time any physician makes that switch, it exacerbates the shortage.”

His association estimates the U.S. will face a shortage of 20,200 to 40,400 primary care doctors within the next decade.

A state analysis found that the percentage of residents in western Massachusetts who said they had a primary care provider was lower than in several other regions of the state.

Dill said the impact of concierge care is worse in rural areas, which often already experience physician shortages. “If even one or two make that switch, you’re going to feel it,” Dill said.

Rebecca Starr, an internist who specializes in geriatric care, recently started a concierge practice in Northampton.

For many years, she consulted for a medical group whose patients got only 15 minutes with a primary care doctor, “and that was hardly enough time to review medications, much less manage chronic conditions,” she said.

When Starr opened her own medical practice, she wanted to offer longer appointments — but still bring in enough revenue to make the business work.

“I did feel a little torn,” Starr said. While it was her dream to offer high-quality care in a small practice, she said, “I have to do it in a way that I have to charge people, in addition to what insurance is paying for.”

Starr said her fee is $3,600 a year, and her patient load will be capped at 200, much lower than the 1,000 or even 2,000 patients that some doctors have. But she still hasn’t hit her limit.

“Certainly there’s some people that would love to join and can’t join because they have limited income,” Starr said.

Many doctors making the switch to concierge medicine say the membership model is the only way to have the kind of personal relationships with patients that attracted them to the profession in the first place.

“It’s a way to practice self-preservation in this field that is punishing patients and doctors alike,” said internal medicine physician Shayne Taylor, who recently opened a practice offering “direct primary care” in Northampton. The direct primary care model is similar to concierge care in that it involves charging a recurring fee to patients, but direct care bypasses insurance companies altogether.

Taylor’s patients, capped at 300, pay her $225 a month for basic primary care visits — and they must have health insurance to cover care such as X-rays and medications, which her practice does not provide. But Taylor doesn’t accept insurance for any of her services, which saves her administrative costs.

“We get a lot of pushback because people are saying, ‘Oh, this is elitist, and this is only going to be accessible to people that have money,’” Taylor said.

But she said the traditional primary care model doesn’t work. “We cannot spend so much time seeing so many patients and documenting in such a way to get an extra $17 from the insurance company.”

While much of the pushback on the membership model comes from patients and policy experts, some of the resistance comes from physicians.

Paul Carlan, a primary care doctor who runs Valley Medical Group in western Massachusetts, said his practice is more stretched than ever. One reason is that the group’s clinics are absorbing some of the patients who have lost their doctor to concierge medicine.

“We all contribute through our tax dollars, which fund these training programs,” Carlan said.

“And so, to some degree, the folks who practice health care in our country are a public good,” Carlan said. “We should be worried when folks are making decisions about how to practice in ways that reduce their capacity to deliver that good back to the public.”

But Taylor, who has the direct primary care practice, said it’s not fair to demand that individual doctors take on the task of fixing a dysfunctional health care system.

“It’s either we do something like this,” Taylor said, “or we quit.”

This article is from a partnership that includes New England Public Media, NPR, and KFF Health News.

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

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HHS Secretary Kennedy will hold a press event to discuss the findings of the CDC's latest Autism and Developmental Disabilities Monitoring (ADDM) Network survey

Autism Prevalence

GRAND JUNCTION, Colorado — Un viernes después de la escuela, Esa Rodrigues, de 6 años, deshizo un ovillo de lana, asustó a su gato, preguntó a sus familiares sobre sus colores favoritos y delató a su hermano por llamarla “rata chismosa cara de trasero”.

Luego, se concentró en abrir con los dientes un brillo labial con sabor a cereza.

“¡Sí!”, exclamó, cuando logró abrir la tapa. Esa se puso el brillo en su habitación, donde colgaba en la pared una gran bandera del orgullo transgénero.

Esa dijo que la bandera la hace sentir “importante” y “feliz”. Le gustaría quitarla de la pared y usarla como capa.

Al principio, sus padres cuestionaron su identidad, pero ya no. Antes, su hija, ansiosa, temía ir a la escuela, lloraba en la barbería cuando le hacían un corte “varonil”, y se acurrucó en posición fetal en el suelo del baño cuando supo que nunca tendría la menstruación.

Ahora, esa niña vive la vida con entusiasmo, preguntándose en voz alta si las hadas viven en la casita de cerámica que encontró encaramada en una piedra.

Su madre, Brittni Packard Rodrigues, quiere que esta alegría y aceptación perduren. Dependiendo de la combinación del deseo de Esa, las recomendaciones de sus médicos y el inicio de la pubertad, esto podría requerir bloqueadores, seguidos de estrógeno, para que Esa pueda desarrollar el cuerpo que se adapte a su ser.

“A largo plazo, los bloqueadores ayudan a prevenir todas esas cirugías y procedimientos que podrían convertirse en su realidad si no recibimos esa atención”, dijo Packard Rodrigues.

Los medicamentos conocidos como bloqueadores de la pubertad se usan ampliamente para afecciones como el cáncer de próstata, la endometriosis, la infertilidad y la pubertad precoz. Ahora, la administración Trump busca limitar su uso específicamente para jóvenes transgénero.

Colorado, el estado natal de Esa, es reconocido desde hace tiempo como un refugio para la atención de afirmación de género: se considera legalmente protegida y un beneficio esencial del seguro médico.

En los últimos años, “exiliados médicos” se han mudado a Colorado para recibir este tratamiento. Ya en la década de 1970, el pueblo de Trinidad se hizo conocida como “la capital mundial del cambio de sexo” cuando Stanley Biber, un ex cirujano del ejército con sombrero de vaquero, dejó su huella realizando estas cirugías en adultos.

En su primer día en el cargo, el presidente Donald Trump firmó una orden ejecutiva que refuta la existencia de personas transgénero, argumentando que es una “afirmación falsa que los hombres puedan identificarse como mujeres y, por lo tanto, convertirse en mujeres, y viceversa”.

A la semana siguiente, emitió otra orden que calificaba los bloqueadores de la pubertad y las hormonas para menores de 19 años como una forma de “mutilación” química y “una mancha en la historia de nuestra nación”. La orden instruía a las agencias a tomar medidas para garantizar que los beneficiarios de subvenciones federales para investigación o educación dejaran de proporcionarlos.

Organizaciones de atención médica en Colorado, California, Washington, D.C. y otros lugares anunciaron que cumplirían con la orden preventivamente.

En Colorado, esto incluía a tres importantes organizaciones de atención médica: Children’s Hospital Colorado, Denver Health y UCHealth.

Entre finales de enero y principios de febrero, los tres sistemas anunciaron cambios en la atención de afirmación de género que ofrecían a pacientes menores de 19 años, con efecto inmediato.

Dijeron que ya no recetarían nuevas hormonas ni bloqueadores de la pubertad para pacientes que no los hubieran recibido previamente, se limitarían o no se renovarían las recetas para quienes sí los hubieran recibido, y no se realizarían cirugías. Esto último aunque el Children’s Hospital nunca las había ofrecido, y este tipo de cirugía es poco común en adolescentes: por cada 100.000 menores trans, menos de tres se someten a ella.

El hospital infantil y Denver Health reanudaron la oferta de bloqueadores de la pubertad y hormonas el 24 y el 19 de febrero, respectivamente, después que Colorado se uniera a una demanda presentada ante el tribunal de distrito de EE. UU. en el estado de Washington.

El tribunal concluyó que las órdenes de Trump relacionadas con el género “discriminan por motivos de condición transgénero y sexo”. Otorgó una orden judicial preliminar que impide su entrada en vigencia en los cuatro estados involucrados.

Sin embargo, las cirugías no se han reanudado. Denver Health afirmó que “mantendrá la pausa en las cirugías de afirmación de género para pacientes menores de 19 años debido a la seguridad del paciente y dada la incertidumbre del panorama legal y regulatorio”.

UCHealth no ha reanudado ni la medicación ni la cirugía para menores de 19 años. “Nuestros proveedores esperan una decisión más definitiva de los tribunales federales que pueda resolver la incertidumbre en torno a la prestación de esta atención”, escribió la vocera Kelli Christensen.

Los jóvenes trans y sus familias afirmaron que el fallo judicial y las decisiones de los dos sistemas de salud de Colorado de reanudar los tratamientos no han resuelto el problema. Les ha dado tiempo para acumular recetas, para intentar encontrar médicos privados con la formación adecuada para supervisar los análisis de sangre, y ajustar las recetas en consecuencia, y, en algunos casos, para resolver la logística de mudarse a otro estado o país.

La administración Trump ha seguido presionando a los proveedores de salud más allá de las órdenes ejecutivas iniciales, amenazando con retener o cancelar los fondos federales que se les habían otorgado. A principios de marzo, la Administración de Recursos y Servicios de Salud (RHSA) anunció que revisaría la financiación de la educación médica de posgrado en hospitales pediátricos.

KFF Health News solicitó comentarios a Kush Desai, subsecretario de prensa de la Casa Blanca, pero no recibió respuesta. La subsecretaria de prensa del Departamento de Salud y Servicios Sociales (HHS), Emily Hilliard, respondió con enlaces a dos comunicados de prensa anteriores.

Las intervenciones médicas son solo un tipo de atención de afirmación de género, y el proceso para obtener el tratamiento es largo y exhaustivo.

Investigadores han descubierto que, incluso entre quienes tienen seguro médico privado, es poco probable que los jóvenes transgénero reciban bloqueadores de la pubertad ni hormonas. Curiosamente, la mayoría de las cirugías de reducción de senos para afirmación de género realizadas en hombres y menores se practican en pacientes cisgénero, no transgénero.

Kai, de 14 años, quisiera haber podido tomar bloqueadores de la pubertad. Vive en Centennial, un suburbio de Denver. KFF Health News no divulga su nombre completo porque a su familia le preocupa que pueda sufrir acoso.

Kai tuvo su primera menstruación a los 8 años. Para el momento en el que se dio cuenta de que era transgénero, en la secundaria, ya era demasiado tarde para empezar a tomar bloqueadores de la pubertad.

Sus médicos le recetaron anticonceptivos para suprimir sus períodos, así no le recordaban cada mes su disforia de género. Luego, al cumplir los 14, empezó a tomar testosterona.

Kai dijo que si no estuviera en terapia hormonal ahora, sería un peligro para sí mismo.

“Poder decir que estoy feliz con mi cuerpo y poder ser feliz en público sin pensar que todos me miran raro, es una gran diferencia”, dijo.

Su madre, Sherry, dijo que se alegra de ver a Kai relajarse y convertirse en la persona que es.

Sherry, quien pidió usar su segundo nombre para evitar que se identificara a su familia, dijo que comenzó a guardar testosterona en cuanto Trump fue elegido, pero no había pensado en el impacto que esto tendría en la disponibilidad de anticonceptivos. Sin embargo, después de las órdenes ejecutivas, esa receta también se volvió difícil  de conseguir. Sherry dijo que el médico de Kai en UCHealth tuvo que programar una reunión especial para confirmar que podía seguir recetándosela.

Así que, por ahora, Kai tiene lo que necesita. Pero para Sherry, eso no es un gran consuelo.

“No creo que estemos muy seguros”, dijo. “Son solo prórrogas”.

La familia está ideando un plan para salir del país. Si Sherry y su esposo consiguen trabajo en Nueva Zelanda, se mudarán allí. Sherry dijo que esa posibilidad es un privilegio que muchos otros no tienen.

Por ejemplo, David, un estudiante de 18 años de la Universidad Western Colorado en Gunnison, un pueblo de las Montañas Rocallosas, pidió ser identificado solo por su segundo nombre porque le preocupa ser objeto de persecución en este pueblo rural y conservador.

David no tiene pasaporte, pero incluso si lo tuviera, no quiere irse de Gunnison, dijo. Está estudiando geología y aprendiendo a tocar el bajo.

Y tiene un buen grupo de amigos. Planea ser paleontólogo.

Los estantes de su dormitorio están llenos de sus artículos esenciales: fósiles, desodorante Old Spice, macarrones con queso para microondas. Pero no hay espejos. David dijo que se acostumbró a evitarlos.

“Durante mucho tiempo, tuve tanta disforia corporal y dismorfia que puede ser un poco difícil mirarme al espejo”, dijo David. “Pero cuando lo hago, la mayoría de las veces, veo algo que realmente me gusta”.

Lleva tres años tomando testosterona, y la hormona le ayudó a que creciera su barba. En enero, le dijeron a su médico de Denver Health que dejara de recetársela. Su madre condujo horas desde su casa hasta Gunnison para darle la noticia en persona.

La receta ya está activa de nuevo, pero la mastectomía que había planeado para este verano no. Esperaba tener un tiempo de recuperación adecuado antes de empezar el segundo año de la universidad. Pero no conoce a nadie en Colorado que lo haga antes de los 19 años. Podría operarse fácilmente para aumentar sus pechos, pero debe buscar opciones quirúrgicas en otros estados para reducirlos o extirparlos.

“Se suponía que Colorado, como estado, era un refugio”, dijo su madre, Louise, quien pidió ser identificada por su segundo nombre. “Tenemos una ley que otorga a las personas trans el derecho a la atención médica, y sin embargo, nuestros sistemas de salud se la están quitando”.

Han sido necesarios ocho años y unos diez profesionales médicos y terapeutas para que David esté tan cerca de la meta. Es un gran logro después de haber vivido tantos años de disforia y dismorfia.

“Sigo adelante, y seguiré adelante, y casi nada podrá detenerme, porque así soy”, dijo David. “Siempre ha habido personas trans y siempre las habrá”.

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

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SILVERTHORNE, Colorado. — Cuando Adolfo Román García-Ramírez camina a casa por la noche después de su turno en un mercado en este pueblo montañoso del centro de Colorado, a veces se acuerda de su infancia en Nicaragua. Los adultos, recuerda, asustaban a los niños con cuentos de la “Mona Bruja”. Si te adentras demasiado en la oscuridad, le decían, un gigantesco y monstruoso mono que vive en las sombras podría atraparte.

Ahora, cuando García-Ramírez mira por encima del hombro, no son los monos monstruosos a los que teme. Son los agentes del Servicio de Inmigración y Control de Aduanas de Estados Unidos (ICE).

“Hay un miedo constante de que vayas caminando por la calle y se te cruce un vehículo”, dijo García-Ramírez, de 57 años. “Te dicen: ‘Somos de ICE; estás arrestado’, o ‘Muéstrame tus papeles’”.

Silverthorne, una pequeña ciudad entre las mecas del esquí de Breckenridge y Vail, ha sido el hogar de García-Ramírez durante los últimos dos años. Trabaja como cajero en un supermercado y comparte un apartamento de dos habitaciones con cuatro compañeros.

La ciudad de casi 5.000 habitantes ha sido un refugio acogedor para el exiliado político, quien fue liberado de prisión en 2023 después que el gobierno autoritario de Nicaragua negociara un acuerdo con el gobierno estadounidense para transferir a más de 200 presos políticos a Estados Unidos.

A los exiliados se les ofreció residencia temporal en Estados Unidos bajo un programa de libertad condicional humanitaria (conocido como parole humanitario) de la administración Biden.

Este permiso humanitario de dos años de García-Ramírez expiró en febrero, apenas unas semanas después que el presidente Donald Trump emitiera una orden ejecutiva para poner fin al programa que había permitido la residencia legal temporal en Estados Unidos a cientos de miles de cubanos, haitianos, nicaragüenses y venezolanos. Esto lo que lo ponía en riesgo de deportación.

A García-Ramírez se le retiró la ciudadanía nicaragüense al llegar a Estados Unidos. Hace poco más de un año, solicitó asilo político. Sigue esperando una entrevista.

“No puedo decir con seguridad que estoy tranquilo o que estoy bien en este momento”, dijo García-Ramírez. “Uno se siente inseguro, pero también incapaz de hacer algo para mejorar la situación”.

Vail y Breckenridge son mundialmente famosos por sus pistas de esquí, que atraen a millones de personas cada año. Pero la vida para la fuerza laboral del sector turístico que atiende a los centros turísticos de montaña de Colorado es menos glamorosa.

Los residentes de los pueblos montañosos de Colorado experimentan altas tasas de suicidio y adicciones, impulsadas en parte por las fluctuaciones estacionales de los ingresos, que pueden causar estrés a muchos trabajadores locales.

Las comunidades latinas, que constituyen una proporción significativa de la población residente permanente en estos pueblos de montaña, son particularmente vulnerables.

Una encuesta reciente reveló que más de 4 de cada 5 latinos encuestados en la región de la Ladera Occidental, donde se encuentran muchas de las comunidades rurales de estaciones de esquí del estado, expresaron una preocupación “extrema o muy grave” por el consumo de sustancias.

Esta cifra es significativamente mayor que en el condado rural de Morgan, en el este de Colorado, que también cuenta con una considerable población latina, y en Denver y Colorado Springs.

A nivel estatal, la preocupación por la salud mental ha resurgido entre los latinos en los últimos años, pasando de menos de la mitad que la consideraba un problema extremada o muy grave en 2020 a más de tres cuartas partes en 2023.

Tanto profesionales de salud como investigadores y miembros de la comunidad afirman que factores como las diferencias lingüísticas, el estigma cultural y las barreras socioeconómicas pueden exacerbar los problemas de salud mental y limitar el acceso a la atención médica.

“No recibes atención médica regular. Trabajas muchas horas, lo que probablemente significa que no puedes cuidar de tu propia salud”, dijo Asad L. Asad, profesor adjunto de sociología de la Universidad de Stanford. “Todos estos factores agravan el estrés que todos podríamos experimentar en la vida diaria”.

Si a esto le sumamos los altísimos costos de vida y la escasez de centros de salud mental en los destinos turísticos rurales de Colorado, el problema se agrava.

Ahora, las amenazas de la administración Trump de redadas migratorias y la inminente deportación de cualquier persona sin residencia legal en el país han disparado los niveles de estrés.

Según estiman defensores, en las comunidades cercanas a Vail, la gran mayoría de los residentes latinos no tienen papeles. Las comunidades cercanas a Vail y Breckenridge no han sufrido redadas migratorias, pero en el vecino condado de Routt, donde se encuentra Steamboat Springs, al menos tres personas con antecedentes penales han sido detenidas por el ICE, según informes de prensa.

Las publicaciones en redes sociales que afirman falsamente haber visto a oficiales del ICE merodeando cerca de sus hogares han alimentado aún más la preocupación.

Yirka Díaz Platt, trabajadora social bilingüe de Silverthorne, originaria de Perú, afirmó que el temor generalizado a la deportación ha llevado a muchos trabajadores y residentes latinos a refugiarse en las sombras.

Según trabajadores de salud y defensores locales, las personas han comenzado a cancelar reuniones presenciales y a evitar solicitar servicios gubernamentales que requieren el envío de datos personales. A principios de febrero, algunos residentes locales no se presentaron a trabajar como parte de una huelga nacional convocada por el “día sin inmigrantes”. Los empleadores se preguntan si perderán empleados valiosos por las deportaciones.

Algunos inmigrantes han dejado de conducir por temor a ser detenidos por la policía. Paige Baker-Braxton, directora de salud conductual ambulatoria del sistema de salud de Vail, comentó que ha observado una disminución en las visitas de pacientes hispanohablantes en los últimos meses.

“Intentan mantenerse en casa. No socializan mucho. Si vas al supermercado, ya no ves a mucha gente de nuestra comunidad”, dijo Platt. “Existe ese miedo de: ‘No, ahora mismo no confío en nadie'”.

Juana Amaya no es ajena a la resistencia para sobrevivir. Amaya emigró a la zona de Vail desde Honduras en 1983 como madre soltera de un niño de 3 años y otro de 6 meses. Lleva más de 40 años trabajando como limpiadora de casas en condominios y residencias de lujo en los alrededores de Vail, a veces trabajando hasta 16 horas al día. Con apenas tiempo para terminar el trabajo y cuidar de una familia en casa, comentó, a menudo les cuesta a los latinos de su comunidad admitir que el estrés ya es demasiado.

“No nos gusta hablar de cómo nos sentimos”, dijo, “así que no nos damos cuenta de que estamos lidiando con un problema de salud mental”.

El clima político actual solo ha empeorado las cosas.

“Ha tenido un gran impacto”, dijo. “Hay personas que tienen niños pequeños y se preguntan qué harán si están en la escuela y se los llevan a algún lugar, pero los niños se quedan. ¿Qué hacen?”.

Asad ha estudiado el impacto de la retórica de la deportación en la salud mental de las comunidades latinas. Fue coautor de un estudio, publicado el año pasado en la revista Proceedings of the National Academy of Sciences, que concluyó que el aumento de esta retórica puede causar mayores niveles de angustia psicológica en los no ciudadanos latinos e incluso en los ciudadanos latinos.

Asad descubrió que ambos grupos pueden experimentar mayores niveles de estrés, y las investigaciones han confirmado las consecuencias negativas de la falta de documentación de los padres en la salud y el rendimiento educativo de sus hijos.

“Las desigualdades o las dificultades que imponemos hoy a sus padres son las dificultades o desigualdades que sus hijos heredarán mañana”, afirmó Asad.

A pesar de los altos niveles de miedo y ansiedad, los latinos que viven y trabajan cerca de Vail aún encuentran maneras de apoyarse mutuamente y buscar ayuda.

Grupos de apoyo en el condado de Summit, donde se encuentra Breckenridge y a menos de una hora en coche de Vail, han ofrecido talleres de salud mental para nuevos inmigrantes y mujeres latinas. Building Hope, en el condado de Summit y Olivia’s Fund en el condado de Eagle, donde se encuentra Vail, ayudan a quienes no tienen seguro médico a pagar un número determinado de sesiones de terapia.

Vail Health planea abrir un centro psiquiátrico regional para pacientes hospitalizados en mayo, y la Alianza de Recursos Interculturales Móviles ofrece servicios integrales, incluyendo recursos de salud conductual, directamente a las comunidades cercanas a Vail.

De vuelta en Silverthorne, García-Ramírez, el exiliado nicaragüense, vive el día a día.

“Si me deportan de aquí, iría directamente a Nicaragua”, dijo García-Ramírez, quien contó haber recibido una amenaza de muerte verbal de las autoridades de su país natal. “Sinceramente, no creo que aguante ni un día”.

Mientras tanto, continúa su rutinario viaje a casa desde su trabajo de cajero, a veces sorteando nieve resbaladiza y calles oscuras después de las 9 pm. Cuando surgen pensamientos de pesadilla sobre su propio destino en Estados Unidos, García-Ramírez se concentra en el suelo bajo sus pies.

“Llueva, truene o nieve”, dijo, “yo camino”.

Este artículo se publicó con el apoyo de Journalism & Women Symposium (JAWS) Health Journalism Fellowship, asistida por subvenciones de The Commonwealth Fund.

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

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SILVERTHORNE, Colo. — When Adolfo Román García-Ramírez walks home in the evening from his shift at a grocery store in this central Colorado mountain town, sometimes he thinks back on his childhood in Nicaragua. Adults, he recollects, would scare the kids with tales of the “Mona Bruja,” or “Monkey Witch.” Step too far into the dark, they told him, and you might just get snatched up by the giant monstrous monkey who lives in the shadows.

Now, when García-Ramírez looks over his shoulder, it’s not monster monkeys he is afraid of. It’s U.S. Immigration and Customs Enforcement officers.

“There’s this constant fear that you’ll be walking down the street and a vehicle rolls up,” García-Ramírez, 57, said in Spanish. “They tell you, ‘We’re from ICE; you’re arrested,’ or, ‘Show me your papers.’”

Silverthorne, a commuter town between the ski meccas of Breckenridge and Vail, has been García-Ramírez’s home for the past two years. He works as a cashier at the grocery and shares a two-bedroom apartment with four roommates.

The town of nearly 5,000 has proved a welcome haven for the political exile, who was released from prison in 2023 after Nicaragua’s authoritarian government brokered a deal with the U.S. government to transfer more than 200 political prisoners to the U.S. The exiles were offered temporary residency in the U.S. under a Biden administration humanitarian parole program.

García-Ramírez’s two-year humanitarian parole expired in February, just a few weeks after President Donald Trump issued an executive order to end the program that had permitted temporary legal residency in the U.S. for hundreds of thousands of Cubans, Haitians, Nicaraguans, and Venezuelans, putting him at risk of deportation. García-Ramírez was stripped of his Nicaraguan citizenship when he came to the U.S. Just over a year ago, he applied for political asylum. He is still waiting for an interview.

“I can’t safely say I’m calm, or I’m OK, right now,” García-Ramírez said. “You feel unsafe, but you also feel incapable of doing anything to make it better.”

Vail and Breckenridge are world famous for their ski slopes, which attract millions of people a year. But life for the tourism labor force that serves Colorado’s mountain resorts is less glamorous. Residents of Colorado’s mountain towns experience high rates of suicide and substance use disorders, fueled in part by seasonal fluctuations in income that can cause stress for many in the local workforce.

The Latino communities who make up significant proportions of year-round populations in Colorado’s mountain towns are particularly vulnerable. A recent poll found more than 4 in 5 Latino respondents in the Western Slope region, home to many of the state’s rural ski resort communities, expressed “extremely or very serious” concern about substance use. That’s significantly higher than in rural eastern Colorado’s Morgan County, which also has a sizable Latino population, and in Denver and Colorado Springs.

Statewide, concerns about mental health have surged among Latinos in recent years, rising from fewer than half calling it an extremely or very serious problem in 2020 to more than three-quarters in 2023. Health care workers, researchers, and community members all say factors such as language differences, cultural stigma, and socioeconomic barriers may exacerbate mental health issues and limit the ability to access care.

“You’re not getting regular medical care. You’re working long hours, which probably means that you can’t take care of your own health,” said Asad Asad, a Stanford University assistant professor of sociology. “All of these factors compound the stresses that we all might experience in daily life.”

Add sky-high costs of living and an inadequate supply of mental health facilities across Colorado’s rural tourist destinations, and the problem becomes acute.

Now, the Trump administration’s threats of immigration raids and imminent deportation of anyone without legal U.S. residency have caused stress levels to soar. In communities around Vail, advocates estimate, a vast majority of Latino residents do not have legal status. Communities near Vail and Breckenridge have not experienced immigration raids, but in neighboring Routt County, home to Steamboat Springs, at least three people with criminal records have been detained by ICE, according to news reports. Social media posts falsely claiming local ICE sightings have further fueled concerns.

Yirka Díaz Platt, a bilingual social worker in Silverthorne originally from Peru, said a pervasive fear of deportation has caused many Latino workers and residents to retreat into the shadows. People have begun to cancel in-person meetings and avoid applying for government services that require submitting personal data, according to local health workers and advocates. In early February, some locals didn’t show up to work as part of a nationwide “day without immigrants” strike. Employers wonder whether they will lose valuable employees to deportation.

Some immigrants have stopped driving out of fear they will be pulled over by police. Paige Baker-Braxton, director of outpatient behavioral health at the Vail Health system, said she has seen a decline in visits from Spanish-speaking patients over the last few months.

“They’re really trying to keep to themselves. They are not really socializing much. If you go to the grocery stores, you don’t see much of our community out there anymore,” Platt said. “There’s that fear of, ‘No, I’m not trusting anyone right now.’”

Juana Amaya is no stranger to digging in her heels to survive. Amaya immigrated to the Vail area from Honduras in 1983 as a single mother of a 3-year-old and a 6-month-old. She has spent more than 40 years working as a house cleaner in luxury condos and homes around Vail, sometimes working up to 16 hours a day. With barely enough time to finish work and care for a family at home, she said, it is often hard for Latinos in her community to admit when the stress has become too much.

“We don’t like to talk about how we’re feeling,” she said in Spanish, “so we don’t realize that we’re dealing with a mental health problem.”

The current political climate has only made things worse.

“It’s had a big impact,” she said. “There are people who have small children and wonder what they’ll do if they’re in school and they are taken away somewhere, but the children stay. What do you do?”

Asad has studied the mental health impacts of deportation rhetoric on Latino communities. He co-authored a study, published last year in the journal Proceedings of the National Academy of Sciences, that found escalated deportation rhetoric may cause heightened levels of psychological distress in Latino noncitizens and even in Latino citizens.

Asad found that both groups may experience increased stress levels, and research has borne out the negative consequences of a parent’s lack of documentation on the health and educational attainment of their children.

“The inequalities or the hardships we impose on their parents today are the hardships or inequalities their children inherit tomorrow,” Asad said.

Despite heightened levels of fear and anxiety, Latinos living and working near Vail still find ways to support one another and seek help. Support groups in Summit County, home to Breckenridge and less than an hour’s drive from Vail, have offered mental health workshops for new immigrants and Latina women. Building Hope Summit County and Olivia’s Fund in Eagle County, home to Vail, help those without insurance pay for a set number of therapy sessions.

Vail Health plans to open a regional inpatient psychiatric facility in May, and the Mobile Intercultural Resource Alliance provides wraparound services, including behavioral health resources, directly to communities near Vail.

Back in Silverthorne, García-Ramírez, the Nicaraguan exile, takes things one day at a time.

“If they deport me from here, I’d go directly to Nicaragua,” said García-Ramírez, who said he had received a verbal death threat from authorities in his native country. “Honestly, I don’t think I would last even a day.”

In the meantime, he continues to make the routine trek home from his cashier job, sometimes navigating slick snow and dark streets past 9 p.m. When nightmarish thoughts about his own fate in America surface, García-Ramírez focuses on the ground beneath his feet.

“Come rain, shine, or snow,” he said, “I walk.”

This article was published with the support of the Journalism & Women Symposium (JAWS) Health Journalism Fellowship, assisted by grants from The Commonwealth Fund.

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

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