Recent polling finds that health costs are a top worry for much of the American public, while Republicans in Congress are considering still more cuts to federal health spending on programs such as Medicaid and the Affordable Care Act.

Meanwhile, the Supreme Court ruled that Colorado cannot ban mental health professionals from using “conversion therapy” to treat LGBTQ+ minors, a decision that’s likely to affect other states with similar laws.

This week’s panelists are Julie Rovner of 麻豆女优 Health News, Jessie Hellmann of CQ Roll Call, Alice Miranda Ollstein of Politico, and Sandhya Raman of Bloomberg Law.

Panelists

Among the takeaways from this week’s episode:

• Republicans reportedly are weighing still more cuts to federal health spending. With the war in Iran draining military coffers, GOP leaders in Congress are eying a drop in health funding 鈥� a decision that could exacerbate problems following the passage of legislation expected to lead to major reductions in Medicaid spending, as well as the expiration of enhanced ACA premium subsidies that were not renewed by lawmakers last year. And President Donald Trump’s budget could include another sizable reduction in funding to the National Institutes of Health.
• The Supreme Court this week struck down a Colorado law prohibiting licensed professionals from practicing a form of therapy that tries to change the sexual orientation or gender identity of LGBTQ+ minors. States have long had the power to regulate medical care, with the goal of restricting treatments that can be harmful. Also, the Idaho Legislature passed a bill requiring teachers and doctors to out transgender minors to their parents.
• Meanwhile, the Department of Health and Human Services is studying whether to make private Medicare Advantage plans the default option for seniors enrolling in Medicare, a change that would seem to conflict with the Trump administration’s scrutiny of overpayments to the private insurance plans. And a tech nonprofit’s lawsuit seeks to reveal more about the administration’s pilot program testing the use of artificial intelligence in prior authorization in Medicare.

Also this week, Rovner interviews 麻豆女优 Health News’ Elisabeth Rosenthal, who wrote the last two 麻豆女优 Health News “Bill of the Month” stories. If you have a medical bill that’s outrageous, infuriating, or just inscrutable, you can submit it to us here.

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

Julie Rovner: New York Magazine’s “,” by Helaine Olen.听听

Jessie Hellmann: The Texas Tribune’s “,” by Colleen DeGuzman, Stephen Simpson, Terri Langford, and Dan Keemahill.听

Sandhya Raman: Science’s “,” by Jocelyn Kaiser.听听

Alice Miranda Ollstein: The New York Times’ “,” by Ed Augustin and Jack Nicas.听听

Also mentioned in this week’s podcast:

• 麻豆女优 Health News’ “States Pay Deloitte, Others Millions To Comply With Trump Law To Cut Medicaid Rolls,” by Samantha Liss and Rachana Pradhan.
• 麻豆女优 Health News’ “Trump’s Hunt for Undocumented Medicaid Enrollees Yields Few Violators,” by Phil Galewitz.
• The Colorado Sun’s “,” by John Ingold.
• Politico’s “,” by Alice Miranda Ollstein, Erin Doherty, Marcia Brown, and Carmen Paun.
• The New York Times Magazine’s “,” by Coralie Kraft.
• NOTUS’ “,” by Margaret Manto.
• The Dallas Morning News’ “,” by Emily Brindley.

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

Julie Rovner:听Hello, from 麻豆女优 Health News and WAMU Public Radio in Washington, D.C. Welcome to听What the Health?听I’m听Julie Rovner, chief Washington correspondent for 麻豆女优 Health News, and听I’m听joined by some of the best and smartest听health听reporters covering Washington.听We’re听taping this week on Thursday,听April 2, at 10听a.m.听As always, news happens fast, and things might have changed by the time you hear this. So here we go.听

Today, we are joined听via听video conference by Alice Miranda听Ollstein听of Politico.听

Alice Miranda听Ollstein:听Hello.听

Rovner:听Jessie Hellmann听of CQ听Roll Call.听

Jessie Hellmann:听Thanks for having me.听

Rovner:听And Sandhya听Raman,听now at Bloomberg Law.听

Sandhya Raman:听Hello, everyone.听

Rovner:听Later in this episode,听we’ll听have my interview with听麻豆女优 Health News’听Elisabeth Rosenthal, who reported and wrote the last听two听麻豆女优 Health News听“Bills of the听Month.”听One is about a patient who got caught in the crossfire over prices between insurers and drug companies. The other is about a woman who, and this is not an April Fools’听joke, got her insurance canceled for听failing to pay听a bill for听1听cent. But first,听this week’s news.听

So听Congress is on spring break, but when they come back,听health听policy will be waiting. A new Gallup poll out this week found 61% of those surveyed said they worry about the availability and affordability of health care, quote,听“a great deal.”听That was 10 percentage points more than the economy,听inflation,听and the federal budget deficit, and it topped a list of 15 domestic concerns. And while we are still waiting for final enrollment numbers for Affordable Care Act plans, we do know that the share of people paying more than $500 a month for their coverage doubled from last year to 2026.听Yet Axios this week is reporting that Republicans are considering still more cuts to the Affordable Care Act to potentially pay for a听$200 billion听war supplemental. What exactly are they thinking? And听it’s听looking more like Republicans are going to try for another budget reconciliation bill this spring. Isn’t that, right,听Jessie?听

Hellmann:听House听Budget听chair Jodey Arrington has kind of been pushing this idea听really hard听of going after what he says is fraud听in听mandatory programs like Medicare and Medicaid.听He’s听also talked about funding听cost-sharing听reductions, which is an idea that slipped out of the last reconciliation bill, and听it’s听a wonky kind of idea听鈥μ�

Rovner:听But听I think the best way to explain听it听is that it will raise premiums for many people.听That’s听how听I’ve听just been doing it.听听

Hellmann:听Yeah, exactly.听

Rovner:听Let’s听not get into the details.听

Hellmann:听It would听reduce spending for the federal government but听wouldn’t听really help people who buy insurance听on听the marketplace. He听hasn’t听been听very specific.听He’s听also talked about,听like,听site-neutral听policies听in听Medicare, but听it’s听hard to see how all of this could make a serious听dent in听a听$200 billion听Iran supplemental.听There’s听also a new development.听I think President听[Donald]听Trump threw a wrench in things yesterday when he said he wanted the reconciliation bill to focus on border spending and immigration spending to cover a three-year period, and now Senate Majority Leader John Thune is saying that there’s probably not room for much else in the bill. So,听unclear what the path forward is for all of that.听

Rovner:听Yeah, and of course, that was part of the deal to free up the Department of Homeland Security’s budget in the appropriation.听It’s听all one sort of big, tied-up mess at this point.听Alice, I see听you’re听nodding.听

Ollstein:听Yeah.听I mean, what often happens with these reconciliation bills is it starts out with a tight focus and everyone’s unified, and then, because it can often be the only legislative train leaving the station,听everybody gets desperate to get their pet issue on board, and then the more and more things get piled onto it, then they start losing votes, and people start disagreeing more. And听so听I think even though this is still in the ideas phase,听you’re听already seeing some signs of that happening. And when it comes to health care, it can be particularly fraught. And of course, you have lawmakers, especially in the听House, with wildly听different needs. Some of them need to fend off a primary from the right, and so they want to be as conservative as possible. Some are fighting to hang on in swing districts, and so they want to be more moderate. And these things are in conflict. And听so听these proposals to cut health spending, even more than the massive amount that was cut last year,听are already, you know, raising some red flags among some moderate Republican members.听And听it’s听very possible the whole thing falls apart.听

Rovner:听Well, along those lines,听we’re听supposed to get the听president’s budget on Friday, which is only two months late. It was due in February.听And while I听haven’t听seen much on it, Jessie, your colleagues at听Roll听Call听are reporting that the budget will seek a 20% cut to the National Institutes of Health.听That’s听only half the cut that the administration proposed last year. But given that Congress actually boosted the听agency’s听budget slightly this year, that feels kind of unlikely.听

Hellmann:听Yeah, I听don’t听think that the appropriators are likely to听go along with this.听They have really strong advocates, and Sen.听Susan Collins, who’s chair of the Senate Appropriations Committee.听And,听like听you听said, they rejected cuts last year.听Kind of surprised.听Twenty percent听is not as deep as the Trump administration went last year.听I was actually kind of surprised it wasn’t听a听bigger proposed cut.听But either way, I听don’t听think Congress is going to go along with that.听听

Rovner:听Meanwhile, I saw听a late headline that FDA is looking to hire back people after听DOGE [Department of Government Efficiency]听cut听thousands听of people last year. Sandhya,听HHS听[Department of Health and Human Services]听is just in this sort of personnel churn at this point, isn’t it?听

Raman:听Yeah, I think that HHS is kind of getting听bit听in the foot from, you know, we’ve had so many of these layoffs, and we’ve also had a lot of people just flee the various agencies over the past year because of some of this instability and all of these changes. And as听we’re听getting听closer and closer听to, you know, deadlines of things that they need to get done,听they’re听realizing that they do need more personnel to get some of those things done,听as听we’ve听been passing deadlines.听So听I听don’t听think听it’s听something听that’s听unique to just FDA.听But I think the way to solve this听鈥斕齣t’s听not an overnight thing for the federal government to staff up.听It’s听a longer process, but听it’s听really showing in a lot of areas right now.听

Rovner:听Yeah, I would say this is not like TSA听[Transportation Security听Administration], where you can, you know, hire new听people听and train them up in a couple of months. These are听鈥μ齧any of them scientists听who’ve听got years and years of training and experience at doing some of these jobs that,听you know,听the federal government is ordered to do by legislation.听

Raman:听Yeah, those听statutes are things that,听you know, if they听don’t听meet those听deadlines,听those听are things that are听going to be challenged, and just further tie things up in litigation.听And we already see so many of those right now that are making things more complicated.听听

Rovner:听Well, in news that is not from Congress or the administration, the Supreme Court this week said Colorado could not ban licensed mental health professionals from using so-called听conversion therapy aimed at LGBTQ individuals, at least not on minors.听What’s听the practical impact here? It goes well beyond Colorado,听I听would think.听

Ollstein:听Interesting,听because a lot of people think of this as regulating health care, restricting providers from providing health care that is not helpful and听maybe actively听harmful to the health of the patients.听

Rovner:听And that’s听鈥μ齀 would say听that’s听been a state听鈥μ�

Ollstein:听Power.听

Rovner:听鈥� power.听For generations.听听

Ollstein:听Absolutely.听Right,听I mean, you don’t want people selling sketchy snake oil pills on the street, etc. So many people view this as akin to that.听But it has morphed in the hands of conservative courts into a free speech issue, and that, you know, these laws are restricting the speech of mental health workers who are against people transitioning. And so, yes, it听definitely has听national implications. And of course, we are in a national wave right now of both state and federal entities, you know, moving in the direction of rolling back trans rights in the health care space and beyond.听

Rovner:听Yeah. In related news,听regarding听Colorado and minors and gender,听听that Children’s Hospital Colorado has not yet resumed providing gender-affirming care for transgender youth.听That’s听despite a federal judge in Oregon having struck down an HHS declaration that would have punished hospitals for providing such services.听Apparently, the听hospital in Colorado is concerned that the听judge’s听ruling听doesn’t听provide it with enough legal cover for them to resume that care.听I’m听wondering, is this the administration’s strategy here to get organizations to do what they want, even if they might lack the legal authority to do it?听Just by making them worry that they might come after them?听

Raman:听I think the chilling effect is definitely a big part of this broader issue.听I mean, we’ve seen it in other issues in the past, but just that if there is this worry that it’s a)听going to stop on the provider side, new folks taking part in providing care, and also just it’s going to make patients, even if there are opportunities,听even less likely to want to go because of the fears there. I mean, it goes broader than that.听We’ve听had FTC听[Federal Trade Commission]听complaints,听where they have gone and investigated听different places听that provide gender-affirming care or endorse it.听So听I think听it’s听broader than this, and really part of that chilling effect.听听

Rovner:听And Alice, as you were saying, I mean, the subject of transgender rights, or lack thereof,听remains听a political hot topic. The Idaho听Legislature this week passed a bill that now goes to the governor that would require teachers and doctors to out transgender minors to their parents. Parents could sue teachers, doctors,听and听child care听providers who, quote,听“facilitate the social transformation of the minor student.”听That includes using pronouns or titles that听don’t听align with their sex at birth.听I don’t know about teachers, but that definitely seems to violate patient privacy when it comes to听doctors, right?听

Ollstein:听There’s definitely patient privacy issues there. I also think, you know,听it’s听interesting that听this kind of nonmedical听transitioning听is now coming under attack. Because, you know, you would think that there would be some support for letting a kid, you know, go by a different name for a few weeks, test it out, see how it feels.听Maybe it’s a phase, then they discover that they don’t want to actually pursue taking medications and going through a medical transition.听But this is sort of shutting down that avenue as well.听You听can’t听even change your appearance, change how you present in the world, at a time when kids are really trying to figure out who they are.听So听I think the broad acceptance of hostility to medical transitioning for youth is now spilling over into this kind of social transitioning, and I wonder if听we’re听going to see more of that in the future.听

Rovner:听Yeah, I feel like we started with听minors听shouldn’t听have surgery.听They听shouldn’t听do anything听that’s听not easily reversible.听And now听we’ve听gotten down to,听in听the Idaho听law,听there’s听actually mention听of nicknames. You听can’t听鈥� a听kid听can’t听change his or her nickname. It feels like we’ve听sort of听reduced听this way, way, way down.听

Ollstein:听And I think听we’ve听seen these听laws,听laws related to bathrooms.听We’ve听seen these have negative impacts on people who are not trans at all, people who just are a tomboy or not looking like people’s stereotypes of what different genders may look like. And听so听there’s听a lot of policing of people who are not trans in any way. You know, there’s media reports of people being confronted by law enforcement for going into a bathroom that does align with their biological sex. And听so听it’s听important to keep in mind that these laws have an effect听that’s听much broader than just the听very small听percentage of people who do consider themselves trans.听

Rovner:听Yeah,听it’s听kind of the听opposite of not being听woke. All听right,听we’re听going to take a quick break. We will be right back.听听

So听while听we’ve听had lots of news out of the Department of Health and Human Services the past few weeks,听it’s听been mostly public听health-related.听But听there’s听a lot going on in the Medicare and Medicaid programs too. Item听A:听Stat News听is reporting听that HHS is studying whether to make the private Medicare Advantage program the default for seniors when they qualify for Medicare. Right now, you get the traditional fee-for-service plan that allows you to go to any doctor or hospital that accepts Medicare, which is most of them.听You have to affirmatively opt into Medicare Advantage, which often provides extra benefits but also much narrower networks.听What would it mean to make Medicare Advantage the default,听that people would go into private plans instead of the听government听plan, unless they affirmatively opted for the traditional fee-for-service?听

Hellmann:听Someone’s experience with听鈥μ齝an vary听greatly between听being on traditional Medicare and Medicare Advantage. If听you’re听in Medicare Advantage, you could be exposed to narrow networks. You can only see certain doctors that are covered by your plan. You can be exposed to higher cost sharing. A lot of people are听kind of fine听with their plans until they have a medical issue and need to go to the hospital or they need skilled nursing care.听So听making this the default could definitely be a challenge for some people, especially people that have complex health needs. Some people on the early side of their Medicare eligibility are fine with Medicare Advantage, and then they get听older听and听they’re听not fine with it anymore.听So听it’s听interesting that the administration would听kind of float听this听idea听because听they’ve听been critical听of Medicare Advantage.听

Rovner:听Thank you.听That’s听exactly what I was thinking.听

Hellmann:听Yeah,听they’ve听talked about the federal government听pays听these plans too much, and听it’s听not for better quality in a lot of cases, and听they’ve听talked about reforms in that area.听So听I was a little听surprised to see that.听

Rovner:听Yeah, Republicans have been super ambivalent. I mean, Medicare Advantage was their creation. They overpaid them at the beginning when they, you know,听sort of redid听the program in 2003.听And they purposely overpaid them to get people into Medicare Advantage. And then the Democrats pointed out that this is wasting money because听we’re听overpaying them. And now the Republicans seem to have joined a lot of their听鈥斕齛t least some Republicans听鈥斕齭eem to have joined a lot of the Democrats in saying,听Yes,听we’re听overpaying them.听We’re听paying听them too much. And you know, they talk about the big, powerful insurance companies, and yet听they’re听now听floating听this idea to make Medicare Advantage the default.听So听pick a side, guys.听

All right, well, in other Medicare news, the Electronic Frontier Foundation is suing Medicare officials to learn more about the pilot program听that’s听using artificial intelligence to oversee prior authorization requests in the traditional Medicare听fee-for-service听program.听The idea here is to cut down on,听quote,听“low-value services,”听things that doctors might be prescribing that aren’t either particularly necessary or shown to actually work.听But the fear, of course, is that needed care for patients will be delayed or denied, which is what听we’ve听seen with prior authorization in Medicare Advantage. This is the perennial push-pull of our health care system, right? If you do everything that doctors say,听it’s听going to be too expensive, and if you second-guess them,听it’s听going to be,听you know, it听might turn out to be too constraining.听

Hellmann:听Well, I was just going to say听this听is another issue that was听kind of a听little surprising to me, because听there’s听been so much criticism of the use of prior authorization and Medicare Advantage. And CMS听[Centers for Medicare & Medicaid Services]听looked at that and said,听Oh, what if we did it in traditional Medicare?听Like it was never going to go over well politically,听and听I think there听are even some Republican members of Congress who are not in support of this, but they听haven’t听really made a huge stink about it.听Yeah, this听wasn’t听something I really expected听to see.听

Rovner:听Yeah,听we’ll听see how听this one plays听out too.听Well, meanwhile,听regarding听Medicaid, two听really good听stories this week from my听麻豆女优 Health News colleagues Phil听Galewitz, Rachana Pradhan,听and Samantha Liss.听Phil’s story听found that efforts in multiple states to find enrollees who were not eligible for the program due to their immigration status turned up very few violators. While听Samantha and听Rachana听detailed听the hundreds of millions of dollars states and the federal government are spending to set up computer programs to track听Medicaid’s new work requirement, despite the fact that we already know that most people on Medicaid either already work or they are exempt from the requirements under the new law. Is it just me, or are we spending lots of time and effort on听both of these听policies that are going to听have not听a very big听return?听听

Ollstein:听Well,听that’s听what听we’ve听seen in the few states that have gone ahead and听attempted听this before,听that it costs a lot, and you insure fewer people. And听that’s听not because those people got great jobs with great health听care. You insure fewer people, and the level of employment does not meaningfully change.听

Rovner:听I would听say you insure fewer people who may well still be eligible. They just get caught in the bureaucratic red tape of all听of this.听

Ollstein:听Exactly.听These tech systems that are being set up are challenging to navigate, if people even have a means to do it, if they even have a smartphone or a computer or access to Wi-Fi.听There are not that many physical offices they can听go听to听to听work it out if they need to. And some of those are听very far听from where they live. And听so听you see some of these tech vendors,听you know, are set to make off very well out of this system, and people who need the care not so much. And then, of course, you know,听it’s听not just the patients who will feel the impact. You have these hospitals around the country that are on the brink of closure. And if they have people who used to be insured听鈥斕齮hey used to be able to bill and get reimbursed for their services, suddenly they’re uninsured听鈥斕齛nd they’re coming in for emergency care that they can’t pay for, that the hospital has to throw out-of-pocket for, that puts the strain that some of these facilities can barely cope with.听And听so听you’re听seeing a lot of state hospital associations听sounding听the alarm as well.听

Raman:听I would also say the timing is interesting. You know, we spent so much time and energy last year going through the reconciliation process to tighten these areas, to get in the work requirements, to reduce immigrant eligibility for Medicaid. And then, you know, as they’re gearing up to possibly do this again, to defer their crackdown on health care as part of that, instead of it saving money听鈥斕齮hat it’s not having as much of an effect and costing so much, in the case of the work requirements, where we’re not expected to see the return of it.听

Rovner:听Yeah, that may be, although听I guess the return听is that people will not have insurance anymore, and so the federal government,听the states,听won’t听be spending money听for听their medical care.听They’ll听be spending money on other things. All right, of course,听there’s听more news from HHS than just Medicare and Medicaid听this week.听We also have a lot of news about the Make America听Healthy听Again movement, which is a sentence听that 2023听me听would听definitely not听recognize.听听about a new poll that finds the MAHA vote听isn’t听necessarily locked in with Republicans. Tell us about it.听

Ollstein:听Yeah,听that’s听right.听So听Politico did our own polling on this, because we听hadn’t听really seen good data out there on who identifies as MAHA听and what do they even believe about the different parties and about different issues. And听so听we found that,听OK, yes, most people associate MAHA听with the Republican Party听鈥斕齧ost, but not all. But a lot of voters who identify as MAHA, and a lot of voters who voted for Trump in 2024听don’t听think that the Trump administration has done听a good job听making America healthy again.听And they rank the Democratic Party above the Republican Party on a lot of their top priority issues, like standing up to influence from the food industry and the pharmaceutical industry. They rank Democrats as caring more about health. So, you know, we found this very fascinating, and it supports what we’ve been hearing anecdotally, where Democratic candidates, a handful of them, and听Democratic electoral groups, are really seeing a lot of opportunity to go after MAHA听voters and win them over for this November. And you know, we should remember that even if you听don’t听see听a big swing of people听voting for Democrats, even if MAHA听voters are disillusioned and stay home, that alone could decide races. You know, midterms are decided by very narrow margins.听

Rovner:听Well, two other really interesting MAHA听takes this week.听.听It’s听about the tension in and among medical groups, about how to deal with HHS Secretary听[Robert听F.]听Kennedy听[Jr.]听and the MAHA movement. The American Medical Association seems to be trying to play nice, at least on things it agrees with the听secretary about, lest it risk things like its giant contract to supply the CPT billing codes to Medicare. On the other hand, the American Academy of Pediatrics and the American College of Physicians have been more confrontational to the point of going to court.听The other story,听from听听pushing MAHA.听One thing I noticed is that听all of听the teens in the story seem to suffer from physical problems that are not well understood by the mainstream medical community, and so they turned online to seek advice instead, which is understandable in each individual case. But then they turn around and try to influence others. And you can see how easily misinformation can spread. It makes me not so much wonder听鈥斕齣t makes me see how, oh, this is how this stuff sort of gets out there, because you see so much听鈥� and Alice, this听goes back to what you were saying about MAHA听is not a movement that’s allied with one particular political party.听It’s听more of sort听of a mindset that听doesn’t听trust听expertise.听

Ollstein:听I think it听spans people who identify as Democrats, identify as Republicans. And, you know,听we’re听not really interested in politics until the rise of Robert F Kennedy Jr., and so I think it does show a lot of malleability. And there is a fight for this, for this cohort right now, on the airwaves, on the internet, etc.听听

Rovner:听And,听as听The New York Times pointed out, you know,听we’ve听thought of this as being听sort of a听young men cohort.听It’s听now also a young woman cohort,听too.听So听there’s听lots of people out there to听go and get,听for these people who are pursuing votes.听听

Well, turning to reproductive health, we have a couple of follow-ups to things we covered earlier. The big one is听Title听X, the federal family planning program, whose grants were set to end as of April 1. Sandhya, it looks like the federal government is going to fund the program after all?听

Raman:听Yeah, the family planning grantees in this space have been on edge for so long, you know, waiting to see would they finally just issue the grant applications.听And then it was such a short timeline for them to get them done. And then everyone that I talked to in the听lead-up听was expecting some sort of delay, just because it was such a short听timeframe听before they were set to run out of money. And听so听I think that they听were all pleasantly surprised that HHS was able to turn things around when they confirmed that the money听is听going to go out the day before the deadline. It does take a couple听of听days to go through the process and get that done. But I think the new worry now is also that in the statements that the White House and HHS have made is just that they are still at work on getting听Title听X听rulemaking out so that a lot of these groups would be ineligible if they also听provide听abortions.听Or we also听don’t听know what will be in the rule听鈥斕齣f it will be broader than what was under the last听Trump administration, if it encompasses other restrictions.听So听a little bit of both there.听听

Rovner:听Yeah. And I also was听gonna听say, I mean, we know that anti-abortion groups are unhappy with the administration, so this would be one place where they could听presumably throw听them a bone, yes?听

Ollstein:听So听people on both sides have been a little mystified why we听haven’t听seen a new听Title听X听rule yet.听They were expecting that near the beginning of last year, especially if the administration was just planning to reimpose his 2019 version, that would be pretty straightforward and simple.听And yet, here we are, more than a year into the administration, and we听haven’t听really seen this yet. The administration did confirm to me听鈥斕齱e put this in our newsletter听鈥斕齮hat a new rule is coming.听And they said it will听align with pro-life values. And the White House’s comments to some conservative media outlets were very explicit that this will be the last time Planned Parenthood can get funding. Now I wonder if that statement will come back to bite them in court, because the rule previously was听very careful听not to name Planned Parenthood or name any specific organization. It just imposed criteria that applied to a lot of Planned Parenthood facilities, and听in order to听make them ineligible for听Title听X听funding. And听so听I wonder if that will help Planned Parenthood听sue听later on.听But听we’ll听put a pin in that and come back to it.听But we have confirmed that some sort of new rule is coming, but we don’t know when, and we don’t know what it would entail.听There’s听a lot of speculation that this could go way beyond an attempt to kick Planned Parenthood out. There’s speculation it could involve restrictions on听particular forms听of birth control. There’s speculation that it could entail restrictions on gender-affirming care. There’s speculation that it could involve rules around parental consent, stricter parental consent requirements, which are currently something that’s not part of听Title听X. And听so听we just听don’t听know, you know,听in order to听mollify the anti-abortion groups that are upset, they are saying,听Don’t听worry, new rule is coming.听But again, we don’t know when, and we don’t know what’s going to be in it.听

Rovner:听Well,听we’ll听be here when it happens. Another topic听we’ve听talked about at some length is crisis pregnancy centers, which are anti-abortion organizations that sometimes offer some medical services.听听who was told after an ultrasound at a crisis pregnancy center that she had a normal pregnancy, and three days later, ended up in emergency surgery because the pregnancy was not normal, but rather ectopic听鈥斕齣n other words, implanted in her fallopian tube rather than her uterus, which could have been fatal if not caught. This is not the first such case, but it again raises this question of whether these centers should be treated as medical facilities, which听we’ve听talked about many states听do.听听

Raman:听And I think a lot of the rationale that people have for trying to do some of these听mandatory ultrasounds, you know, encouraging people to go to this is because the talking point is that听you don’t know if you have an ectopic pregnancy, you don’t have another complication, so you should go here to instead of just taking a medication abortion. So听鈥μ齱e’re听coming full circle here, where this is also not helping the听case, if听you’re听not finding the full information there.听So听I think that听was an interesting point to me听鈥μ�

Rovner:听Yeah,听it’s听going on both听sides听basically.听It is fraught, and we will continue to cover it.听

All right, that is this week’s news. Now听we’ll听play my interview with Elisabeth Rosenthal at听麻豆女优 Health News, and then we will come back and do听our听extra credits.听

I am pleased to welcome back to the podcast听麻豆女优 Health News’听Elisabeth Rosenthal, who reported and wrote the last听two听“Bills of the听Month.”听Libby, thanks for coming back.听

Elisabeth Rosenthal:听Thanks for having me.听听

Rovner:听So听let’s听start with our drug copay card patient.听Before we get into the particulars,听what’s听a听drug copay card?听

Rosenthal:听Well, copay cards, or听copayment programs, are things that the drug companies give patients. You know,听when it says you could pay as little as $0,听where they听pay听your copayment, which is usually听pretty big听鈥斕齱hen you see a copay card, it means听the听price is big, and听they’ll听bill your insurance for the rest.听So听for patients, it sounds like a good deal, and it is a good deal when they work.听

Rovner:听So听tell us about this patient, and what drug did he need that cost so much that he听required听a copay card?听

Rosenthal:听Well, the funny thing is听鈥斕齢is name is Jayant Mishra, and he has听a psoriatic听arthritis. And the doctor told him, you know,听there’s听this drug called Otezla that would really help you.听And he was, he was a little cautious, because he knew it could be expensive, so he did wait a few months, and his symptoms, his joint pain, in particular, got worse.听He was like,听OK,听I’ll听start it.听So听he started it the first month, and it worked听really well.听听

Rovner:听“It”听the drug, or听“it”听the copay card, or both?听

Rosenthal:听Both seemed to work very well.听So听the copay card covered his copay of over $5,000 and he was like,听Oh, this is great. And then what happened was, the next month, he tried to fill听it,听and it was like,听Wait, the copay card听didn’t听work!听And really what happens is copay听cards,听they are often limited in time and in the amount of money that’s on them.听So听depending on how much the copay is,听they can run out,听basically expire. You used all the money, and you have a drug that听you’ve听used that is working听really well听for you, and then suddenly听you’re听hit with a big bill.听So听they听kind of get听people addicted to drugs,听which they then听can’t听afford.听听

Rovner:听And what happened听in this case was the insurance company charged more than expected, right?听

Rosenthal:听Well, Otezla, you know,听there’s听so many things about this, and many听“Bill of the听Month”听stories that,听you know,听are eye-rollers. Otezla听鈥斕齮here are biosimilars that were approved by the FDA in听鈥μ�2021?听鈥μ齱hich听everyone’s听talking about, faster approval of biosimilars. Well, this was approved, but the drugmaker filed multiple suits and patent infringement, and so in the U.S., it听won’t听be on the market, the听biosimilar,听until 2028,听so听that’s听a problem too.听

Rovner:听So听if you want this drug,听it’s听going to be expensive.听

Rosenthal:听It’s听going to be expensive. And the other problem is copay cards. Insurers used to say,听OK, that will count towards your deductible, right?听So听you听didn’t听really feel it,听right?听Because you got a $5,000 copay card,听and you had a $5,000 deductible if you had a high-deductible plan.听And everything was good. Now, insurers听kind of said,听Whoa,听we’re听not sure we like these things.听So听yeah, you can use them, but it听won’t听count towards your deductibles.听So听they’re听not听nearly as听useful as they might have been in the past. But patients are really stuck, because these are听really expensive听drugs that most people听couldn’t听afford without copay cards.听

Rovner:听So听what eventually happened to this patient, and how can other people avoid falling into the copay card trap?听

Rosenthal:听So basically, because he had used up the amount on the copay card, which was听$9,400 for the year,听by the second month, he tried for the third month to kind of ration his drugs to take half as much, and his symptoms came back. And then the lucky thing for him was then it was January,听right,听copay cards听are usually done for the year.听So听he got a new copay card for another $9,400 and he was good for January, and he paid with his health savings account for the first month’s听copay,听with the copay card the second month, with the copay card and his health savings account. And when this went to press, he听wasn’t听sure how he was going to pay for the rest of the year. And for him,听it’s听not a huge problem, because he has a very听well-funded听health savings account, which few of us do, but he was听really up听in the air for the rest of the year when we wrote about this.听

Rovner:听So听sort of moral of this story, be careful if you want to take an expensive drug, and the theory that when the drugmaker promises,听Oh, you can have this for as little as听$0听copay.听

Rosenthal:听Well, I听think it’s听you have to understand what a particular card does.听You have to understand what’s the limit on how much is on the copay card.听You have to understand how many months it’s good for.听You听have to听understand, from your insurer’s point of view,听if听that will count as your deductible or not. And then, man, you know,听you’re听kind of on听your own,听right?听Sometimes your copay card will work great for you, and at other times it will work for a shorter amount of time. And you听got听to figure out what to do. I think the third,听bigger lesson is getting biosimilars, which are these听very expensive听drugs approved,听is not really the big problem in our country. The problem is the patent thickets that surround so many of these drugs that prevent them from getting to the patients who need them.听听

Rovner:听In other words,听you can make a copy of this drug, but you might not be able to get it onto the market.听听

Rosenthal:听Right.听You can make a听copy听this drug听鈥斕齣t听[a generic]听was approved in 2021听鈥斕齜ut that won’t help patients until 2028,听which is really terrible. You know,听it’s听available in other countries, but not here.听

Rovner:听So听moving听on,听our March patient had insurance through the Affordable Care Act exchange and was听benefiting听from one of those zero-premium plans until she got caught in a听literally Kafkaesque听mess over a听1-cent bill that turned into a听5-cent bill. Who is she and what happened here?听

Rosenthal:听Yeah, her name in this wonderful, terrible story is听Lorena Alvarado Hill. And what happened here is she was on one of these $0 insurance plans through the Obamacare exchanges with that great subsidy, the Biden-era subsidy, and she and her mother were on the same plan, and her mother went on to Medicare,听turned 65.听So听Lorena听didn’t听need听the family听coverage and told the insurer that. And the insurance, of course, automatically recalculates your subsidy, and her premium went from being zero to听1听cent. Now,听no human would make that, you know, would say,听Oh, that makes sense. And to Lorena, it听didn’t听really make sense either. She was like,听I’m听not sure how to pay听1听cent, like, will it work on my credit card? And some of the bills said, you听know,听you understand that this could听impact听the continuation of your insurance, but, you know, she was like,听1听cent,听I听don’t听think so. And then she kept going to doctors, and the insurance still worked, and then at some point, four months later, she听got听a letter in November saying,听Oh, your insurance was canceled in July, and you owe money for all these bills.听

Rovner:听And what happened with this case?听

Rosenthal:听Well, you know, like many of our听“Bill of the听Month”听patients, I celebrate them for being real fighters, because her bill, since her premium was听1听cent a month, went from听1听cent to听2听cents to听3听cents to听4听cents to听5听cents,听when they sent her the note saying your insurance has been canceled for the last four months.听And what turns out, which is really interesting,听is this is a known glitch in the way the subsidies were calculated, were administered.听There’s听a recalculation of subsidies every time听there’s听a life event, a kid goes off the plan, you change jobs, get married, you听get divorced.听So听the recalculation听happens automatically.听And the Biden administration, understanding that this glitch could exist, they gave the insurers the听option听not to cancel insurance if the amount owed was less than $10.听And there were听apparently 180,000听people caught in this situation where their insurance could have been canceled for under $10听of a听recalculated premium. The Trump administration revoked that rule because their feeling was, you owe something, you pay something.听So听it’s听part of their听“stamp out fraud and abuse,”听and this was, in their view, abuse of a system when people听didn’t听pay what they owed.听听

Rovner:听One cent.听

Rosenthal:听One cent,听right.听So听what happened听with听her is, you know,听a听good bill-paying听citizen sending her daughter to college with loans. She wrote her insurers, she wrote to the state, she wrote to everyone. And as a last resort, of course, someone said,听Well,听there’s听this thing called听Bill of the听Month you could write to.听So听when we听looked into听this,听at first听HealthFirst, which was her insurer in Florida, said,听Oh,听she’s听not insured through us.听And I was like,听Yeah, because you canceled her insurance. And then I gave them her insurance number, and they said,听Well, yes, according to law, we did the right thing.听She听didn’t听pay,听so it was canceled. Somehow, through all of this,听word got back to the hospital and the insurer,听and they worked together, and her bills were suddenly zero on her portal. So听that’s听the good news for Lorena Alvarado听Hill. It听doesn’t听really help all those other people whose insurance may have been canceled for premiums that were under $10.听

Rovner:听So,听basically, if you get a bill for听5听cents, you should pay it.听

Rosenthal:听Yeah, you know, it was funny when this story went up, many听people were sympathetic, but other commenters said,听Well, she should have just paid $1 because you can pay that.听And听maybe there听was a way to pay听1听cent. And听I’m听kind of with听her, like, if I got a bill for听1听cent, life is busy. This is a woman who is a teacher’s aide and works on weekends at a store to help pay for her daughter’s college. Life is busy. You just听can’t听sweat over听1-cent bills and spend a lot of time figuring out how to pay them. And听I guess the lesson听is,听what’s听the worst that can happen in a very dysfunctional system where so much is automated听now?听The听worst听that can happen is always really bad. Your insurance could be canceled.听

Rovner:听So basically, stay听on top of it, I guess,听is the message for听both of these听stories this month. Elisabeth Rosenthal, thank you so much.听

Rosenthal:听Thanks,听Julie,听for having me.听

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

Hellmann:听My story is from听The Texas Tribune, from a group of reporters who I听can’t听name individually.听There’s听too many of them. But it is听听in Texas after the governor issued an executive order a few years ago requiring that hospitals check patients’听citizenship.听So听the story found that hospital visits by undocumented people dropped by about a third, and the story also got into how this is bleeding into other types of health care at other facilities, free vaccine clinics are not being attended as widely anymore. People听aren’t听attending their preventive care appointments,听like cancer screenings or prenatal care checkups. Some of these other health facilities听are required to听check citizenship status, but听it’s听definitely a听chilling effect over the broader health听care landscape in Texas.听

Rovner:听Yeah. There have been a lot of good stories about that. Sandhya.听

Raman:听My extra credit is from听Science, and听it’s听by Jocelyn Kaiser, and the story is听“.”听In her story, she talks about how last year, you know, the administration cut a lot of staff at the Agency for Healthcare Research and Quality. They’ve canceled all of the open grants, but Congress still appropriated $345 million for the agency this year, and so supporters kind of want to revive what should be going on听at听the agency, which hasn’t been issuing any of the grants since the start of the fiscal year, and just kind of make progress on some of the things that this agency does do, like running the U.S.听Preventive Services Task Force, which has been, you know, something that has been talked about this year. So thought it was an interesting piece.听听

Rovner:听Yeah,听I’m听old enough to remember when听AHRQ听was bipartisan. Alice.听

Ollstein:听So听a听very harrowing story in The New York Times titled听“.”听And I will say, since this piece ran, we have seen that an oil shipment from Russia is going through to the island, but I don’t think that will be sufficient to completely wipe away all of the upsetting conditions that this piece really gets into,听what is happening as a result of the ramped-up U.S.听embargo and blockade of the island. People听can’t听get food, they听can’t听get medicine, they听can’t听get electricity, and that is having a devastating effect on health听care. The Cuban health听care system has been听really miraculous听over the years, just the pride of the government.听It has meant,听prior to this blockade,听that their life expectancy was better than ours, and a lot of their outcomes were better. And听so听this has been really devastating. There’s, you know, harrowing scenes of people on ventilators having to be hand-pumped when the electricity cuts out,听babies听in听incubators, you know, losing power.听You know, people听having听to skip medications, etc. And听so听this is really shining a light on a foreign policy situation that this administration听is behind.听

Rovner:听Yeah,听that’s听really been an under-covered story, too,听I think, you know, right off our shores.听My extra credit this week is one I simply could not resist.听It’s听from New York Magazine, and听it’s听called听“,”听by听Helaine Olen. And as the headline听rather vividly听points out, we are听witnessing听the rise of pet medical tourism, along with human medical tourism, which has been a thing for a couple of decades听now.听It seems that veterinary medicine听is getting听nearly as听expensive as human medicine, and that one way to find cheaper care is to cross the border, which is obviously easier if you live near the border.听I’m听not sure how much cheaper veterinary care is in Canada, but as the owner of two corgis, I may have to do some investigating of my own.听听

OK, that is this week’s show.听As always, thanks to our editor,听Emmarie Huetteman,听and our producer-engineer,听Francis Ying.听A听reminder:听What the听Health?听is now available on WAMU platforms, the NPR app,听and wherever you get your podcasts听鈥斕齛s well as, of course,听kffhealthnews.org.听Also,听as always, you can email听us听your comments or questions.听We’re听at whatthehealth@kff.org.听Or you can find me still on X听, or on Bluesky听.听Where are you folks hanging these days?听Sandhya.听

Raman:听On听听and on听听.听

Rovner:听Alice.听

Ollstein:听On Bluesky听听and on X听.听

Rovner:听Jessie.听

Hellmann:听I’m听on LinkedIn under Jessie Hellmann听and on X听.听

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

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This story can be republished for free (details).

The Trump administration this week missed a deadline to nominate a new director for the Centers for Disease Control and Prevention. Without a nominee, current acting Director Jay Bhattacharya 鈥� who is also the director of the National Institutes of Health 鈥� has to give up that title, leaving no one at the helm of the nation’s primary public health agency.听

Meanwhile, a week after one federal judge blocked changes to the childhood vaccine schedule made by the Department of Health and Human Services, another blocked a proposed ban on gender-affirming care for minors.听

This week’s panelists are Julie Rovner of 麻豆女优 Health News, Rachel Cohrs Zhang of Bloomberg News, Lizzy Lawrence of Stat, and Shefali Luthra of The 19th.

Panelists

Among the takeaways from this week’s episode:

• A federal judge ruled against the Trump administration’s declaration intended to limit trans care for minors, though the ruling’s practical effects will depend on whether hospitals resume such care. And a key member of the remade federal vaccine advisory panel resigned as the panel’s activities 鈥� and even membership 鈥� remain in legal limbo.
• Two senior administration health posts remain unfilled, after President Donald Trump missed a deadline to fill the top job at the Centers for Disease Control and Prevention 鈥� and the Senate made little progress on confirming his nominee for surgeon general.
• The percentage of international graduates from foreign medical schools who match into U.S. residency positions has dropped to a five-year low. That’s notable given immigrants represent a quarter of physicians, many of them in critical but lower-paid specialties such as primary care 鈥� particularly in rural areas. Meanwhile, new surveys show that more than a quarter of labs funded by the National Institutes of Health have laid off workers and that federal research funding cuts have had a disproportionate effect on women and early-career scientists.
• And new data shows the number of abortions in the United States stayed relatively stable last year, for the second straight year 鈥� largely due to telehealth access to abortion care. And a vocal opponent of abortion in the Senate, with his eyes on a presidential run, introduced legislation to effectively rescind federal approval for the abortion pill mifepristone.

Also this week, Rovner interviews Georgetown Law Center’s Katie Keith about the state of the Affordable Care Act on its 16th anniversary.

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

Julie Rovner: Stat’s “,” by John Wilkerson.听

Shefali Luthra: NPR’s “,” by Tara Haelle.听

Lizzy Lawrence: The Atlantic’s “,” by Nicholas Florko.听

Rachel Cohrs Zhang: The Boston Globe’s “,” by Tal Kopan.听

Also mentioned in this week’s podcast:

• Stat’s “,’” by Jonathan Wosen.
• 麻豆女优 Health News’ “Rising Health Costs Push Some Middle-Aged Adults To Skip the Doc Until Medicare,” by Sam Whitehead.
• Guttmacher’s “,” by Isaac Maddow-Zimet and Kimya Forouzan.
• United for Medical Research’s “.”

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

Julie Rovner:听Hello,听from 麻豆女优 Health News and WAMU Public Radio in Washington, D.C. Welcome to听What the Health?听I’m听Julie Rovner, chief Washington correspondent for 麻豆女优 Health News, and听I’m听joined by some of the best and smartest reporters听covering听Washington.听We’re听taping this week on Thursday,听March 26,听at 10听a.m.听As always, news happens fast, and things might have changed by the time you hear this. So,听here we go.听

Today,听we are joined via video conference by Rachel听Cohrs Zhang听of Bloomberg News.听

Rachel Cohrs Zhang:听Hi,听everybody.听

Rovner:听Shefali Luthra听of听The听19th.听

Shefali Luthra:听Hello.听

Rovner:听And Lizzy Lawrence of Stat News.听

Lizzy Lawrence:听Hello.听

Rovner:听Later in this episode听we’ll听have my interview with Katie Keith of Georgetown University about the state of the Affordable Care Act as it turns 16听鈥斕齩ld enough to drive in most states. But first,听this week’s news.听

So,听it has been another busy week at the Department of Health and Human Services. Last week, a federal judge in Massachusetts blocked the department’s vaccine policy,听ruling it had violated federal administrative procedures听regarding听advisory committees. This week, a federal judge in Portland, Oregon,听ruled the department also听didn’t听follow the required process to block federal reimbursement for transgender-related medical treatment. The case was brought by 21听Democratic-led states. Where does this leave the hot-button issue of care for transgender teens? Shefali,听you’ve听been following this.听

Luthra:听I mean, I think it’s still really up in the air.听A lot of this depends on how hospitals now respond听鈥斕齱hether they feel confident in the court’s decision,听having staying听power enough to actually resume offering services.听Because a lot of them stopped.听And so that’s something we’re still waiting to actually see how this plays out in practice.听Obviously,听it’s听very symbolic, very legally meaningful, but whether this will translate into changes in practical health care access, I think, is听an open question still.听

Rovner:听Yeah, we will听definitely have听to see how听this one plays听out听鈥� and,听obviously,听if and when听the administration听appeals听it. Well, speaking of that vaccine ruling from last week听鈥斕齱hich,听apparently,听the听administration has not yet appealed, but is going to听鈥斕齩ne of the most contentious members of that very contentious Advisory Committee on Immunization Practices has resigned. Dr.听Robert Malone, a physician and听biochemist, said he听didn’t听want to be part of the听“drama,”听air quotes.听But he caused a lot of听the drama, didn’t he?听

Cohrs Zhang:听He has been听pretty outspoken, and听I think he听isn’t听like a Washington person necessarily听鈥斕齣sn’t听somebody听who’s听used to,听like,听being on a public stage and having your social media posts appear in large publications.听So听I think听it’s听questionable, like, whether he had a position to resign from.听I think his nomination听was stayed,听too.听But I think it is听鈥μ齮he back-and-forth,听I think,听there is a good point that this limbo can be frustrating for people when meetings听are canceled听at听the last minute, and people have travel plans,听and it does听鈥μ齤ust changes the calculus for kind of making it worth it to serve on one of these advisory committees.听

Rovner:听And I’m not sure whether we mentioned it last week, but the judge’s ruling not only said that the people were incorrectly appointed to ACIP, but it also stayed any meetings of the advisory committee until there is further court action, until basically, the case is done or it’s overruled by a higher court. So听鈥μ齰accine policy听definitely is听in limbo.听听

Well, meanwhile, yesterday was the deadline for the administration to nominate someone to head the Centers for Disease Control and Prevention since Susan听Monarez听was abruptly dismissed, let听go, resigned, whatever, late last summer. Now that that deadline has passed, it means that acting听Director Jay Bhattacharya, who had added that title to his day job as head of the National Institutes of Health,听can no longer听remain听acting听director of CDC.听Apparently, though听he’s听going to听sort of remain听in charge, according to HHS spokespeople, with some authorities reverting to听[Health and Human Services]听Secretary听[Robert F.]听Kennedy听[Jr.].听What’s听taking so long to find a CDC director?听听

To quote D.C.听cardiologist and frequent cable TV health policy commentator听,听“The problem here is that听there’s听no candidate听who’s听qualified, MAHA acceptable, and Senate confirmable. Those job requirements are mutually exclusive.”听That feels kind of accurate to me.听Is that actually听the听problem?听Rachel, I see you smiling.听

Cohrs Zhang:听Yeah.听I think it is tough to find somebody who checks all of those boxes.听And though it has been听210 days听since the clock听has started, I would just point out that there has been a significant leadership shake-up at HHS, like among the people who are kind of running this search, and they came in, you know, not that long ago.听It’s听only been, you know,听a听month and a half or so.听So听I think there certainly have been some听new faces听in the room who might have different opinions.听But听I think it听isn’t听a good look for them to miss this deadline when they have this much notice. But I think听there’s听also, like,听legal experts that听I’ve听spoken with听don’t听think that听there’s听going to be a huge听day-to-day听impact on the operations of the CDC. It听kind of reminds听me of that office where there’s,听like,听an听“assistant听to听the听regional听manager vibe”听going on, where, like,听Dr.听Bhattacharya is now acting in the capacity of CDC director, even though he听isn’t听acting听CDC director听anymore. So,听I think I听don’t听know that听it’ll听have a huge听day-to-day听impact, but it is听kind of hanging听over HHS at this point, as they are already struggling with the听surgeon听general nomination,听to get that through the Senate.听So听it just creates this backlog of nominations.听

Rovner:听I’ve听assumed听they’ve听floated some names, let us say, one of which is Ernie Fletcher, the former governor of Kentucky, also a former member of the House Energy and Commerce health subcommittee, with听some certainly medical chops, if not public health chops.听I think听the听head of the health department in Mississippi. There was one other who听I’ve听forgotten, who it is among the names that have been floated听鈥μ�

Cohrs Zhang:听Joseph Marine.听He’s听a cardiologist at Johns Hopkins, who has听鈥斕齣s kind of like in the kind of Vinay Prasad world of critics of the FDA and,听like,听CDC’s covid听booster strategy.听

Rovner:听And yet, apparently, none of them could pass, I guess, all three tests. Do we think it might still be one of them? Or do we think there are other names that are yet听to come?听

Cohrs Zhang:听Our understanding is that there are other candidates whose names have not become public, and I think there’s also a possibility they don’t choose any of these candidates and just drag it on for a while because,听at this point, like, I don’t know what the rush is,听now that the deadline is passed.听

Lawrence:听Yeah, is there another deadline to miss?听

Cohrs Zhang:听I听don’t听think so.听

Lawrence:听I think this听was the only one.听

Cohrs Zhang:听This was the big one that they now have.听It’s听vacant, but it was vacant before as well. Like, I think, earlier in the听administration, when听Susan听Monarez听was nominated.听

Rovner:听But she, well听鈥μ齮hat’s听right, she was the听“acting,”听and then once she was nominated, she听couldn’t听be the acting anymore.听

Cohrs Zhang:听Yeah.听

Rovner:听So听I guess听it听was vacant while she was being considered.听

Cohrs Zhang:听It was.听So听it’s听not an unprecedented situation, even in this administration.听It’s听just not a good听look, I guess. And I think there is value in having a leader that can interface with the White House and with different leaders, and just having a direction for the agency, especially because it’s in Atlanta, it’s a little bit more removed from the everyday goings-on at HHS in general.听So听I think there’s definitely a desire for some stability over there.听

Rovner:听And we have measles spreading in lots more states.听I mean, every time I听鈥μ齩pen up my news feeds, it’s like, oh, now we have measles, you know, in Utah, I think,听in Montana.听Washtenaw County, Michigan,听had its first measles case recently.听So听this is something that the CDC should be on top of, and yet there is no one on top of the CDC. Well, Rachel, you already alluded to this, but it is also apparently hard to find a surgeon general who’s both acceptable to MAHA听and Senate confirmable, which is my way of saying that the Casey听Means nomination still appears to lack the votes to move out of the Senate, Health, Education, Labor听&听Pensions Committee. Do we have any latest听update听on that?听

Cohrs Zhang:听I think the latest update, I mean, my colleagues at Bloomberg Government just听kind of had听an update this week that听they’re听still not to听“yes” 鈥斕齦ike,听there are some key senators that still听haven’t听announced their positions publicly.听So听I think a lot of the same things that听we’ve听been hearing听鈥μ齦ike听Sens.听Susan Collins and听Lisa Murkowski and Bill Cassidy obviously have not听stated听their positions publicly on the nomination.听Sen.听Thom Tillis, who you听know听is kind of in a lame-duck scenario and doesn’t really have anything to lose, has, you know, said he’s not really made a decision.听So听I think they’re kind of in this weird limbo where they, like, don’t have the votes to advance her, but they also have not made a decision to pull the nomination at this time. So either, I think,听they have to push harder on some of these senators, and I think senators see this as a leverage point that I don’t know that a lot of听鈥斕齮hat all of the complaints are about Dr.听Means specifically, but anytime that there is frustration with the wider department, then this is an opportunity for senators to have their voice heard, to听鈥μ齪otentially extract some concessions. And听so听there’s听a question right now, are they going to change course again for this position, or are they going to, you know, sit down at the bargaining听table听and really cut some deals to advance her nomination? I just听don’t听think we know the answer to that yet.听

Rovner:听Yeah,听it’s听worth reminding that,听frequently,听nominations get held up for reasons that are totally disconnected from the person involved. We went听鈥斕齀 should go back and look this up听鈥� we went, like, four years in two different administrations without a confirmed head of the Centers for Medicare听&听Medicaid听Services because members of Congress were angry about other things, not because of any of the people who had actually been nominated to fill that position. But in this case, it does seem to be, I think,听both Casey听Means and,听you know, her connection to听MAHA,听and the fact that among those who haven’t declared their positions yet,听it’s the chairman of the committee, Bill Cassidy, who’s in this very tight primary to keep his seat.听So听we will keep听on that one.听听

Also, meanwhile, HHS continues to push its听Make America听Healthy听Again priority. Secretary Kennedy hinted on the Joe Rogan podcast last month that the FDA will soon take unspecified action to make customized peptides easier to obtain from compounding pharmacies. These听mini-proteins听are part of a biohacking trend that many MAHA听adherents say can听benefit听health,听despite their not having been shown to be safe and effective in the normal FDA approval process. The FDA听has听also听formally听pulled听a proposed rule that would have banned teens from using tanning beds. We know that the听secretary is a fan of tanning salons, even though that听has听been shown to cause potential health problems,听like skin cancer. Lizzy,听is Kennedy just going to push as much MAHA听as he can until the courts or the White House stops him?听

Lawrence:听I guess so. I mean, we do have this new structure at HHS听now that’s trying to听鈥斕齝learly听鈥μ齮here are warring factions with the MAHA agenda and the White House really trying to focus more on affordability and less on听鈥μ齰accine scrutiny and the medical freedom movement that is really popular among Kennedy’s supporters.听鈥μ齀’m听very curious about听what’s听going to happen with peptides, because听it’s听a sign of Kennedy’s regulatory philosophy, where听there’s听some products that are good and some that are bad.听It’s听very atypical, of course, for听鈥μ�

Rovner:听And that he gets听to decide听rather than the scientists, because he听doesn’t听trust the scientists.听

Lawrence:听Right. Right.听But there has been, I mean, the FDA has kind of been pretty severe on GLP-1听compounders听Hims听&听Hers, so it’ll be interesting to see, you know, how much Kennedy is able to exert his will here, and how much FDA regulators will be able to push back and make their voices heard.听

Rovner:听My favorite piece of FDA听trivia听this week is that FDA is posting the jobs that are about to be vacant at the vaccine center, and one of the things that it actually says in the job description is that you don’t have to be immunized. I听don’t听know if听that’s听a signal or what.听

Lawrence:听Yeah,听I think it听said no telework, which Vinay Prasad famously was teleworking from San Francisco. So,听yeah, I听don’t听know.听But听this听was,听I think it听was for his deputy, although听I’m听sure, I mean, they do need a CBER听[Center for Biologics Evaluation and Research]听director as well.听

Rovner:听Yeah,听there’s听a lot of openings right now at HHS.听All right,听we’re听gonna听take a quick break. We will be right back.听

So听Monday was the 16th anniversary of the signing of the Affordable Care Act, which we will hear more about in my interview with Katie Keith.听But I wanted to highlight a听story by my听麻豆女优听Health听News colleague Sam Whitehead听about older Americans nearing Medicare eligibility putting off preventive and other care until they qualify for federal coverage that will let them afford it. For those who listened to my interview last week with Drew Altman, this hearkens back to one of the big problems with our health system. There are so many quote-unquote听“savings”听that are听actually just听cost-shifting, and often that cost-shifting raises costs overall. In this case, because those older people can no longer afford their insurance or their deductibles,听they put off care until it becomes more expensive to treat. At that point,听because听they’re听on Medicare, the听federal taxpayer will foot a bill听that’s听even bigger than the bill that would have been paid by the insurance company.听So听the savings taxpayers gained by Congress cutting back the Affordable Care Act subsidies are lost on the Medicare end. Is this cost-shifting the inevitable outcome of addressing everything in our health care system except the actual prices of medical care?听

Cohrs Zhang:听I think听it’s听just another example of how people’s behavior responds to these weird incentives. And I think听we’re听seeing this problem, certainly among early retirees,听exacerbated听by the听expiration听of the Affordable Care Act subsidies that听we’ve听talked about very often on this podcast, because it affects these higher earners, and it can dramatically increase costs for coverage. And听I think people听just hope that they can hold on. But again, these听statutory deadlines that lawmakers make up sometimes,听not with a lot of forethought or rational听reasoning,听they have consequences.听And obviously, the Medicare program continues to pay beyond age 65 as well.听And I think听it’s听just another symptom of what the administration talks about when they talk about emphasizing, you know, preventative care and addressing chronic conditions听鈥斕齦ike,听that is a real problem. And,听yeah, I think听we’re听going to see these problems in this population continue to get worse as more people forgo care, as it becomes more expensive on the individual markets.听

Luthra:听I think you听also make a good point, though, Julie, because the increase in costs and cost sharing is not limited to people with marketplace plans, right? Also, people with employer-sponsored health care are seeing their out-of-pocket costs听go up. Employers are seeing what they pay for insurance听go听up as well. And there absolutely is something to be said about听it’s听been 16 years since the Affordable Care Act听passed,听we听haven’t听really had meaningful intervention on the key source of health care prices, right? Hospitals, providers, physicians. And it does seem, just thinking about where the public is and the politics are, that there is possibly听appetite听around this. You see a lot of talk about affordability, but a lot of听this feels, at least as an observer,听very focused听on insurance, which makes sense. Insurance is听a very easy听villain to cast.听But I think you’ve raised a听really good point:听that addressing these really potent burdens on individuals and eventually on the public just requires something听more systemic and more serious if we actually want to yield better outcomes.听

Rovner:听Yeah, there’s just, there’s so much passing the hat that, you know,听I don’t want to do this,听so听you听have to do this.听You know, inevitably, people need health care.听Somebody has to pay for it.听And I think that’s听sort of the听bottom line that nobody really seems to want to address.听

Well, the other theme of 2026 that I feel like I keep repeating is what funding cutbacks and other changes are doing to the future of the nation’s biomedical and medical workforces. Last week was Match Day.听That’s听when graduating medical school seniors find out if and where they will do their residency training. One big headline from this year’s match is that the percentage of non-U.S.听citizen graduates of foreign medical schools matching to a U.S.听residency position fell to a five-year low of 56.4%.听That compares to a 93.5% matching rate for U.S.听citizen graduates of U.S.听medical schools. Why does that matter? Well, a quarter of the U.S.听physician workforce are immigrants, and they are disproportionately represented, both in lower-paid primary care specialties, particularly in rural areas, both of which听U.S.听doctors tend to find less desirable. This would seem to be the result of a combination of new fees for visas for foreign professionals that听we’ve听talked about, a general reduction in visa approvals,听and some people听likely not听wanting to even come to the U.S.听to practice. But that rural health fund that Republicans say will revitalize rural health care听doesn’t听seem like听it’s听really going to work without an adequate number of doctors and nurses, I would humbly suggest.听

Lawrence:听Yeah, absolutely. I mean,听it’s听patients that suffer, right? I mean, you need the people doing the work. And听so听I think that the impacts will start being felt sooner rather than later. That is something that hopefully people will start to feel the pain from.听

Rovner:听I feel like when people think about the immigrant workforce, they think about lower-skilled, lower-paid jobs that immigrants do, and they don’t think about the fact that some of the most highly skilled, highly paid jobs that we have, like being doctors, are actually filled by immigrants, and that if we cut that back, we’re just going to exacerbate shortages that we already know we have.听

Luthra:听And training doctors takes, famously,听a very long听time. And听so听if you are disincentivizing people from coming here to practice, cutting off this key source of supply,听it’s听not as if you can听immediately听go out and say,听Here,听let’s听find some new people and make them doctors. It will take years to make that tenable, make that attractive,听and make that a reality. And it just seems,听to Lizzy’s point,听that even in the scenario where that was possible听鈥斕齱hich I would be somewhat doubtful;听medicine is a hard and difficult career;听it’s not like you can make someone want to do that overnight听鈥斕齪atients will absolutely see the consequences. I听don’t听know if听it’s听enough to change how people think about immigration policy and ways in which we recruit and engage with immigrant workers, but听it’s听absolutely something that should be part of our discussion.听

Rovner:听Yeah, and I think听it’s听been left out.听Well,听meanwhile,听over at the National Institutes of Health, a听,听Lizzy,听found that more than a quarter have laid off laboratory workers. More than听2听in听5听have canceled research,听and two-thirds have counseled students to consider careers outside of academic research. A separate study published this week found that women and early-career scientists have been disproportionately affected by the NIH cuts, even though most of the money goes to men and to later-career scientists. As I keep saying,听this听isn’t听just about the听future of science. Biomedical research is a听huge piece of the U.S.听economy. Earlier this month, the group听United for听Medical听Research听,听finding听that every dollar invested produced $2.57 for the economy. Concerned members of Congress from both parties last week at an appropriations hearing got NIH Director Jay Bhattacharya to again promise to push all the money that they appropriated out the door.听But听it’s听not clear whether听it’s听going to continue to compromise the future workforce. I feel like, you know, we talk about all these missing people and nomination stuff, but听we’re听not really talking a lot about听what’s听going on at the National Institutes of Health, which is a, you know, almost听$50 billion-a-year enterprise.听

Lawrence:听Right.听In some labs, the damage has already been done. You听know, even if Dr.听Bhattacharya听[follows through],听try spending all the money that has been appropriated. There are young听researchers that have been shut out and people that have had to choose alternative career paths. And听I think this听is one of those things听that’s听difficult politically or, you know, in听the public听consciousness, because it is hard to see the immediate impacts听it’s听measured. And I think my colleague Jonathan wrote听[that]听breakthroughs听are听not听discovered听things, you know.听So听it’s听hard to know what听is being missed.听But the immediate impact of the workforce and听not missing this whole generation of scientists that has decided to go to another country or go to do something else, those impacts will be felt for years to come.听

Rovner:听Yeah, this is another one where you听can’t听just turn the spigot back on and have it听immediately听refill.听听

Finally, this week, there is always听reproductive听health听news. This week,听we got the Alan Guttmacher Institute’s听听for the year 2025,听which both sides of the debate consider the most accurate, and it found that for the second year in a row, the number of abortions in the U.S.听remained relatively stable, despite the fact that it’s outlawed or seriously restricted in nearly half the states.听Of course, that’s because of the use of telehealth, which abortion opponents are furiously trying to get stopped, either by the FDA itself or by Congress.听Last week, anti-abortion Sen.听Josh Hawley of Missouri introduced legislation that would听basically rescind听approval for the abortion pill mifepristone. But that legislation is听apparently giving听some Republicans in the Senate heartburn, as they really听don’t听want to engage this issue before the midterms.听And,听apparently,听the听Trump administration听doesn’t听either, given what we know about the FDA saying that听they’re听still studying this.听On the other hand, Republicans听can’t听afford to lose the backing of the anti-abortion activists either.听They put lots of time, effort,听and money into turning out votes, particularly in times like midterms. How big a controversy is this becoming, Shefali?听

Luthra:听This is a huge controversy, and听it’s听so interesting to watch this play out. When I saw Sen.听Hawley’s bill, I mean, that stood out to me as positioning for 2028.听He clearly wants to be a favorite among the anti-abortion听movement听heading into a future presidential primary. But at the same time, this is teasing out听really potent听and powerful dynamics among the anti-abortion movement and Republican lawmakers,听exactly what you said. Republican lawmakers know this is not popular. They do not want to talk about abortion, an issue at which they are at a huge disadvantage听with听the public. Susan B Anthony听List and other such organizations are trying to make the argument that if they are taken for granted,听as they feel as if they are, that will result in an enthusiasm gap.听Right? People will not turn out. They will not go door-knocking,听they听won’t听deploy their tremendous resources to get victories in a lot of these contested,听particularly Senate and House,听races. And obviously, the听president cares a lot about the midterms.听He’s听very concerned听about what happens听when听Democrats take control of Congress. But I think what Republicans are wagering, and听it’s听a fair thought, is that where would anti-abortion activists go? Are they going to go to Democrats,听who听largely support听abortion rights? And a lot of them seem confident that they would rather risk some people staying home and,听overall, not alienating a very large sector of the American public that does not support restrictions on abortion nationwide, especially those that many are concerned are not in keeping with the actual science.听

Rovner:听Yeah, I think the White House, as you said, would like to make this not front and center, let’s听put it that way,听for the midterms. But听yeah, and just to be clear, I mean, Sen.听Hawley introduced this bill. It听can’t听pass.听There’s听no way it gets 60 votes in the Senate.听I’d听be surprised if it could get 50 votes in the Senate.听So听he’s听obviously doing this just to turn up the heat on his colleagues, many of whom are not听very happy听about that.听

Luthra:听And anti-abortion activists are already thinking about 2028.听They are, in fact, talking to people like Sen.听Hawley, like the听vice听president, like Marco Rubio, trying to figure out who will听actually be听their champion in a post-Trump landscape. And so far, what听I’m听hearing,听is that they are听very optimistic听that anyone else could be better for them than the听president听is because they are just so dissatisfied with how little听they’ve听gotten.听

Rovner:听Although they did get the overturn of听Roe v.听Wade.听

Luthra:听That’s听true.听

Rovner:听But you know, it goes back to听sort of my听original thought for this week, which is that the number of abortions听isn’t听going down because of the听relatively easy听availability of abortion pills by mail. Well, speaking of which, in a听somewhat related听story, a woman in Georgia has been charged with murder for taking abortion pills later in pregnancy than听it’s听been approved for, and delivering a live fetus who听subsequently听died. But the judge in the case has already suggested the prosecutors have a giant hill to climb to convict her and set her bail at $1.听Are we going to see our first murder trial of a woman for inducing her own abortion?听We’ve听been听sort of flirting听with this possibility for a while.听

Luthra:听It seems possible.听I think it’s a really good question, and this moment certainly feels like a possible Rubicon, because going after people who get abortions is just so toxic for the anti-abortion movement.听They have promised they would not go after people who are pregnant, who get abortions.听And this is exactly what they are doing. And听I think what听really stands out to me about this case is so much of it depends on individual prosecutors and individual judges. You have听the law enforcement officials who decided to make this a case, and听they’re听actually using, not the abortion law, even though the language in the case,听right,听really resonates, reflects with the law in Georgia’s听six-week ban. Excuse me, with the听language听in Georgia’s听six-week ban. But then you have a judge who says this is very suspect. And what feels so significant is that your rights and your protection under abortion laws depend not only on what state you live in, but who happens to be the local prosecutor, the local cop, the local judge, and that’s just a level of micro-precision that I think a lot of Americans would be very surprised to realize they live under.听

Rovner:听Yeah, absolutely. We should point out that the woman has been charged but not yet indicted, because many, many people are watching this case very, very carefully.听And we听will听too.听

All right, that is this week’s news. Now听I’ll听play my interview with Katie Keith of Georgetown University Law Center, and then听we’ll听come back with our extra credits.听

I am pleased to welcome back to the podcast Katie Keith. Katie is the founding director of the Center for Health Policy and the听Law at the Georgetown University Law Center and a contributing editor at Health Affairs, where she keeps all of us up to date on the latest health policy, legal happenings. Katie, thanks for joining us again.听It’s听been a minute.听

Katie Keith:听Yeah.听Thanks for having me,听Julie,听and happy ACA anniversary.听

Rovner:听So听you are my听go-to for all things Affordable Care Act, which is why I wanted you this week in particular,听when the health law turned 16. How would you describe the state of the ACA today?听

Keith:听Yeah,听it’s听a great question. So,听the ACA听remains听a hugely important source of coverage for millions of people who do not have access to job-based coverage. I am thinking of听farmers,听and听self-employed people,听and small-business owners.听And you know, in 2025,听more than听24 million people听relied on the marketplaces all across the country for this coverage.听So听it听remains听a hugely听important place听where people get their health insurance. And we are already starting to see real erosion听in听the gains made under the Biden administration听as a result of, I think, three primary changes that were made in 2025.听So听the first would be Congress’听failure to extend the enhanced premium tax credits, which you have covered a ton,听Julie听and the team,听as having听a huge impact听there. The second is the changes from the听One听Big听Beautiful Bill听Act. And then the third is some of the administrative changes made by the Trump administration that听we’re听already seeing.听So听we听don’t听yet have full data to understand the impact of all three of those听things yet.听We’re听still waiting.听But the preliminary data shows that already enrollments听down听by more than a million people.听I’m听expecting that to drop further. There was some听麻豆女优听survey data out last week that about听1听in 10 people are going uninsured from the marketplace already, and that’s not even, doesn’t even account for all the people who are paying more but getting less, which their survey data shows is about, you know,听3听in 10 folks.听So听you know what makes all of this really,听really tough, as you and I have discussed before, is, I think,听2025, was really a peak year. We saw peak enrollment at the ACA. We saw peak popularity of the law, which has been more popular than not ever since 2017,听when Republicans in Congress tried to repeal it the first time.听And听鈥μ齜ut now it feels like we’re sort of on this precipice for 2026,听watching what’s going to happen with the data into this really important source of coverage for so many people.听

Rovner:听And听鈥μ齮here’s听been so much news that I think听it’s听been hard for people to absorb. You know, in 2017,听when Republicans tried to repeal the Affordable Care Act, they said听that,听We’re听trying to repeal the Affordable Care Act. Well,听the听2025 you know,听“Big,听Beautiful听Bill,”听they听didn’t听call it a repeal, but it had听pretty much the听same impact, right?听

Keith:听It had听a quite听significant impact. And I think a lot,听like,听you know, there was so much coverage about how Democrats in Congress and the White House learned,听in doing the Affordable Care Act, learned from the failed effort of the Clinton health reform in the听’90s. I think similarly here you saw Republicans in Congress, in the White House, learn from the failed effort in 2017 to be successful here. And听so听you’re exactly right. You did not hear any talk of听“repeal and replace,”听by any stretch of the imagination. I think in 2017 Republicans were judged harshly听鈥斕齛nd appropriately so, in my opinion听鈥斕齜y the听“replace”听portion听of what,听you know, what they were going to do, and it just听wasn’t听there. And听so听you did not see that kind of framing this time around. Instead, it really is an attempt to do death by听a thousand听paper cuts and impose administrative burdens and a real focus on听kind of who听鈥斕齳ou can’t see me, but air quotes,听you know听鈥斕齱ho听“deserves”听coverage and a focus on immigrant populations. So听鈥μ齮hose changes,听when you layer all of them on听鈥斕齝hanges to Medicaid coverage, Medicaid financing, paperwork burdens, all across all these different programs听鈥斕齳ou know, the听One听Big听Beautiful Bill听Act,听it really does erect new barriers that fundamentally change how Medicaid and the Affordable Care Act will work for people. And听so听it’s听not repealed. I think those programs will still be there, but they will look very different than how they have and,听you know, the CBO听[Congressional Budget Office]听at the time, the coverage losses almost听鈥μ齮hey look quite close to, you know, the skinny repeal that we all remember in the middle of the morning听鈥斕齟arly,听like,听late night,听Sen.听John McCain with his thumbs down.听The coverage losses were almost the same,听and you’ve got听the听CBO now saying,听estimating about 35 million uninsured people by 2028,听which,听you know,听is not听鈥μ齣t’s just听erasing, I think, not all, but a lot of the gains we’ve made over the past 15, now 16,听years under the Affordable Care Act.听

Rovner:听And now the Trump听administration is proposing still more changes to the law, right?听

Keith:听Yep,听that’s听right.听They’re听continuing, I think, a lot of the same.听There’s听several changes that, you know, go back to the first Trump administration that听they’re听trying to reimpose. Others are sort of听new ideas.听I’m听thinking some of the same ideas are some of the paperwork burdens. So really, in some cases, building听off of听what has been pushed in Congress.听What’s听maybe new听this time around for 2027 that听they’re听pushing is a significant expansion of catastrophic plans. So huge, huge, high-deductible plans that,听you know,听really听don’t听cover much until you hit听tens听of听thousands听of dollars in out-of-pocket costs. You get your preventive services and three primary care visits, but听that’s听it.听You’re听on the hook for anything else you might need until you hit these听really catastrophic听costs.听They’re听punting to听the states on core things like network adequacy. You know, again, some of听it’s听sort of new. Some of听it’s听a throwback to the first Trump administration, so not as surprising. And then on the legislative front, I听don’t听know what the prospects are, but you do continue to see President听[Donald]听Trump call for, you know,听health听savings听account expansions. We think, I think, you know, the idea is to send people money to buy coverage, rather than send the money to the insurers, which I think folks have interpreted as health savings accounts.听There’s听a continued focus on funding cost-sharing reductions, but that issue continues to be snarled by abortion restrictions across the country. So听that’s听something that continues to be discussed, but I听don’t听know if it will ever happen. And you know anything else that’s听kind of under听the so-called听Great听Healthcare听Plan that the White House has put out.听

Rovner:听You mentioned that 2025 was the peak not just of enrollment but of popularity.听And we have seen in poll after poll that the changes that the Trump administration听and听Congress听is听making are not popular with the public, including听the vast majority of听independents and many, many Republicans as well. Is there any chance that Congress and President Trump might relent on some of these changes between now and the midterms?听We did see a bunch of Republicans, you know, break with the rest of the party to try to extend the, you know, the enhanced premiums. Do you see any signs that听they’re听weakening听or听are听we off onto other things entirely听right now?听

Keith:听It’s听a great question.听I think you听probably need听a different analyst to ask that听question to. I听don’t听think my crystal ball covers those types of predictions. But to your point, Julie, I thought that if there would have been time for a compromise and听sort of a听path forward, it would have been around the enhanced premium tax credits. And it was remarkable, you know, given what the history of this law has been听and听the politics听surrounding it, to see 17 Republicans join all Democrats in the House to vote for a clean three-year extension of the premium tax credits. But no, I think especially thinking about where those enhanced tax credits have had the most benefit, it is states like Georgia, Florida, Texas, and I thought that听maybe would,听could have moved the needle if there was a needle to be moved.听So听I,听it seems like听there’s听much more focus on prescription drugs and other issues, but anything can happen.听So听I guess听we’ll听all听stay tuned.听

Rovner:听Well,听we’ll听do this again for the 17th anniversary. Katie Keith, thank you so much.听

Keith:听Thanks,听Julie.听

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

Lawrence:听Sure.听So听my extra credit is by听Nick听[Nicholas]听Florko, former听Stat-ian,听in听The Atlantic,听“”听I听immediately听read this听piece, because听this is something听that’s听been driving me听kind of crazy. Just seeing听鈥斕齣f听you’ve听missed it听鈥斕齮here have been听鈥μ鼿HS has been posting AI-generated videos of Secretary Kennedy wrestling a Twinkie,听wearing waterproof jeans,听all of听these things. And this has been, this is not unique to HHS听鈥斕齕the]听White House in general has really embraced AI slop as a genre, and I听can’t听look away. And听so听I thought听Nick did听a good job听just acknowledging how crazy this is, and then also what goes听unsaid in these videos.听I think I听personally am just very curious if this resonates with people, or if听it’s听kind of disconcerting听for the average American听seeing these videos like,听Oh, my government is听making听AI slop.听Like I,听you know, social media strategy is so important, so听maybe for听some听people are听really听liking听this. But听yeah,听I’m听just听kind of curious听about public sentiment.听

Rovner:听I know I would say, you know, the National Park Service and the Consumer Product Safety Commission have been听sort of famous听for their very cutesy social media posts, but听not quite to听this extent. I mean,听it’s听one thing to be cheeky and funny. This is听sort of beyond听cheeky and funny.听I agree with you. I have no idea how this is going over the public, but they keep doing it.听It’s a really good story.听Rachel.听

Cohrs Zhang:听Mine is a story in The Boston Globe, and the headline is听“”听by听Tal Kopan.听And this was a really good profile of Tony Lyons, who is Robert F.听Kennedy Jr.’s book publisher, and he’s kind of had the role of institutionalizing all the political energy behind RFK Jr.听and trying to make this into a more enduring political force.听So听I think he听is, like, mostly a behind-the-scenes guy, not really like a D.C.听fixture, more of like a New York book publishing figure.听But I think his efforts and what they’re using, all the money they’re raising for, I think,听is a really important thing to watch in the midterms, and like, whether they can actually leverage this beyond a Trump administration, or beyond however long Secretary Kennedy will be in his position.听So听I think it听was just a good overview of听all the tentacles of institutional MAHA听that are trying to, you know, find their footing here, potentially for the long term.听听

Rovner:听I had听never heard of him, so I was glad to read this story.听Shefali.听

Luthra:听My story is from NPR. It is by听Tara听Haelle. The headline is听“.”听Story says exactly what it promises, that if you have an infant, babies听under听6听months, then getting a covid vaccine while you are pregnant will听actually protect听your baby, which is great because there is no vaccine for infants that young. I love this because it’s a good reminder of something that we were starting to see, and now it just really underscores that this is true, and in the midst of so much conversation around vaccines and safety and effectiveness, it’s a reminder that really, really good research can show us that it is a very good idea to take this vaccine, especially if you听are pregnant.听

Rovner:听More fodder for the argument, I guess. All听right,听my extra credit this week is a clever story from听Stat’s John Wilkerson called听“.”听And,听spoiler,听that loophole is that听one way听companies can avoid running afoul of their promise not to charge other countries less for their products than they charge听U.S.听patients is for them to simply delay launching those drugs in those other countries that have price controls.听Already, most drugs are launched in the U.S.听first, and听apparently some听of the companies that have done deals with the administration limited their promises to three years,听anyway. That way they can charge听U.S.听consumers however much they think the market will bear before they take their smaller profits overseas. Like I said,听clever.听Maybe that’s听why so many companies were ready to do those deals.听

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

Luthra:听I am on听Bluesky听.听

Rovner:听Rachel.听

Cohrs Zhang:听On听X听, or听.听

Rovner:听Lizzy.听

Lawrence:听I’m听on听X听听and听听and听.听

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

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This story can be republished for free (details).

Millions of Americans are facing dramatically higher health insurance premium payments due to the Jan. 1 expiration of enhanced Affordable Care Act subsidies. But much of Washington appears more interested at the moment in culture war issues, including abortion and gender-affirming care.

Meanwhile, at the Department of Health and Human Services, personnel continue to be fired and rehired, and grants terminated and reinstated, leaving everyone who touches the agency uncertain about what comes next.

This week’s panelists are Julie Rovner of 麻豆女优 Health News, Anna Edney of Bloomberg News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Alice Miranda Ollstein of Politico.

Panelists

Among the takeaways from this week’s episode:

• Congress remains undecided on a deal to renew enhanced ACA premium subsidies, as it is on spending plans to keep the federal government running when the existing, short-term plan expires at the end of the month. While some of the bigger appropriations hang-ups are related to immigration and foreign affairs, there are also hurdles to passing spending for HHS.
• ACA plan enrollment is down about 1.5 million compared with last year, with states reporting that many people are switching to cheaper plans or dropping coverage. Enrollment numbers are likely to drop further in the coming months as more-expensive premium payments come due and some realize they can no longer afford the plans they’re enrolled in.
• A key Senate health committee on Wednesday hosted a hearing on the abortion pill mifepristone, focused on the safety concerns posed by abortion foes 鈥� though those concerns are unsupported by scientific research and decades of experience with the drug. Many abortion opponents are frustrated that the Trump administration has not taken aggressive action to restrict access to the abortion pill.
• As the Trump administration moved this week to rehire laid-off employees and abruptly cancel, then restore, addiction-related grants, overall government spending is up, despite the administration’s stated goal of saving money by cutting the federal government’s size and activities. It turns out the churn within the administration is costing taxpayers more. And new data, revealing that more federal workers left on their own than were laid off last year, shows that a lot of institutional memory was also lost.

Also this week, Rovner interviews 麻豆女优 Health News’ Elisabeth Rosenthal, who created the “Bill of the Month” series and wrote the latest installment, about a scorpion pepper, an ER visit, and a ghost bill. If you have a baffling, infuriating, or exorbitant bill you’d like to share with us, you can do that here.

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

Julie Rovner: The New York Times’ “,” by Maxine Joselow.

Alice Miranda Ollstein: ProPublica’s “,” by Anna Clark.

Joanne Kenen: The New Yorker’s “,” by Dhruv Khullar.

Anna Edney: MedPage Today’s “,” by Joedy McCreary.

Also mentioned in this week’s podcast:

• The Washington Post’s “,” by Paul Kane.
• HealthAffairs’ “,” by Mica Hartman, Anne B. Martin, David Lassman, and Aaron Catlin.
• Politico’s “,” by Alice Miranda Ollstein.
• JAMA’s “,” by Sophie Dilek, Joanne Rosen, Anna Levashkevich, Joshua M. Sharfstein, and G. Caleb Alexander.

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

Julie Rovner:听Hello from 麻豆女优 Health News and WAMU听public听radio in Washington, D.C., and welcome to听What the Health?听I’m听Julie Rovner, chief Washington correspondent for 麻豆女优 Health News, and听I’m听joined by some of the best and smartest health reporters in Washington.听We’re听taping this week on Thursday, Jan. 15, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go.听

Today,听we are joined via video conference by Anna Edney听of听Bloomberg News.听

Anna Edney:听Hi, everyone.听

Rovner:听Alice [Miranda]听Ollstein听of Politico.听

Alice Miranda听Ollstein:听Hello.听

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

Joanne Kenen:听Hi, everybody.听

Rovner:听Later in this episode,听we’ll听have my interview with 麻豆女优 Health News’听Elisabeth Rosenthal, who reported and wrote the latest听“Bill of the Month,”听about an ER trip, a scorpion pepper, and a ghost bill. But first,听this week’s news.听Let’s听start this week on Capitol Hill, where both houses of Congress are here and legislating. This week alone, the Senate rejected a Democratic effort to accept the House-passed bill that would renew for three听years听the Affordable Care Act’s expanded subsidies听鈥斕齮he ones that expired Jan. 1.听听

The Senate also turned back an effort to cancel the Trump administration’s regulation covering the ACA, which, although it has gotten far less attention than the subsidies, would also result in a lot of people losing or dropping health insurance coverage.听听

Meanwhile, in the House, Republicans are struggling just to keep the lights on. Between resignations, illnesses, and deaths, House Republicans are听very nearly听鈥斕齣n the words of longtime Congress watcher听听鈥斕齛听[majority]听in name only, which I guess is pronounced听“MINO.”听Their majority is now so thin that one or two votes can hand Democrats a win, as we saw earlier this week in a surprise defeat on an otherwise听fairly routine听labor bill.听Which brings us to the prospects for renewing those Affordable Care Act subsidies. When the dust cleared from last week’s House vote, 17 Republicans joined all the听House’s Democrats听to pass听the bill and send听it to the Senate.听But it seems that the bipartisan efforts in the Senate to get a deal are losing steam.听What’s the latest you guys are hearing?听

Ollstein:听Yeah, so it听wasn’t听a good sign when the person who has听sort of come听out as a leader of these bipartisan negotiations,听Ohio Sen.听Bernie听Moreno, at first came out听very strong听and said,听We’re听in the end zone.听We’re听very听close听to a deal.听We’re听going to have听bill听text.听And that was several days ago, and now听they’re听saying that听maybe听they’ll听have something by the end of the month. But the initial enthusiasm very quickly fizzled as they really got into the negotiations, and,听from what my colleagues have reported, there’s still disagreements on several fronts, you know, including this idea of having a minimum charge for all plans, no zero-premium plans anymore, which the right says is to crack down on fraud, and the left says would really deter low-income people from getting coverage. And there, of course, is, as always, a fight about abortion, as we spoke about on this podcast before.听There is听not听agreement on how Obamacare currently treats abortion, and thus there can be no agreement on how it听should听treat abortion.听

And听so听the two sides have not come to any kind of compromise. And I don’t know what compromise would be possible, because all of the anti-abortion activist groups and their allies in Congress, of which there are many, say that the only thing they’ll accept is a blanket national ban on any plan that covers abortion receiving a subsidy, and that’s a听nonstarter听for most, if not all, Democrats.听So听I听don’t听know where we听go听from here.听

Rovner:听Well, we will talk more about both abortion and the ACA in a minute, but first, lawmakers have just over two weeks to finish the remaining spending bills, or else risk yet another government shutdown. They听seem to听[be]听making some headway on many of those spending bills, but not so much on the bill that funds most of the Department of Health and Human Services. Any chance they can听come up with听a bill that can get 60 votes in the Senate and a majority in the much more conservative House?听That is a pretty narrow needle to thread.听I听don’t听think abortion is going to be a听huge issue in听Labor,听HHS,听because听that’s听where the Hyde Amendment lives, and we usually see the Hyde Amendment renewed. But, you know, I see a lot of Democrats and, frankly, Republicans in the Senate wanting to put money back for a lot of the things that HHS has cut, and the听House听[is]听probably not so excited about putting all of that money back.听I’m听just wondering if there really is a deal to be had, or if听we’re听going to see for the,听you know, however many听year[s]听in a row, another continuing resolution, at least for the Department of Health and Human Services.听

Ollstein:听Well,听you’re听hearing a lot more optimism from lawmakers about the spending bill than you are about a[n]听Obamacare subsidy deal or any of the other things that听they’re听fighting about. And I would say,听on the听spending,听I think the much bigger fights听are going to be outside the health care space. I think听they’re听going to be about immigration, with everything听we’re听seeing about foreign policy, whether and how to put restraints on the Trump administration, on both of those fronts.听On health,听yes, I think听you’ve听seen efforts to restore funding for programs that was slashed by the Trump administration, and you are seeing some Republican support for that. I mean, it听impacts听their districts and their voters too. So that makes sense.听

Kenen:听We’ve听also seen the Congress vote for spending that the administration听hasn’t听been spent.听So听Congress has just voted on a series of things about science funding and other听health-related听issues, including global health. But it remains to be seen whether this administration takes appropriations as law or听suggestion.听

Rovner:听So听while the effort to revive the听additional听ACA subsidies appears to be losing steam, there does seem to be some new hope for a bipartisan health package that almost became law at the end of 2024, so 13 months ago.听Back then, Elon Musk got it stripped from the year-end spending bill because the bill, or so Musk said, had gotten too big. That health package includes things like reforms for pharmacy benefits managers and hospital听outpatient payments,听and continued funding for community health centers. Could that finally become law? That thing that they said,听Oh,听we’ll听pass it first thing next year, meaning 2025.听

Edney:听I think听it’s听certainly looking more likely than the subsidies that听we’ve听been talking about. But I do think听we’ve听been here before several times, not just at the end of last year听鈥斕齜ut,听like with these PBM reforms, I feel like they have certainly gotten to a point where听it’s听like,听This听is happening.听It’s听gonna听happen.听And, I mean,听it’s听been years, though, that听we’ve听been talking about pharmacy benefit manager reforms in the space of drug pricing.听So basically, you听know, from听when听[President Donald]听Trump won. And so, you know, I say this with, like, a huge amount of caution:听Maybe.听

Rovner:听Yeah, we will, but听we’ll听believe it when听鈥μ齱e get to the signing ceremony.听

Ollstein:听Exactly.听

Rovner:听Well, back to the Affordable Care Act, for which enrollment in most states听end听today.听We’re getting an early idea of how many people actually are dropping coverage because of the expiration of those subsidies.听Sign-ups on the federal marketplace are down about听1.5听million from the end of last year’s enrollment period, and听that’s听before most people听have to听pay their first bill. States that run their own marketplaces are also reporting that people are dropping coverage, or else trying to shift to cheaper plans.听I’m听wondering if these early numbers听鈥斕齱hich are听actually stronger听than many predicted, with fewer people听actually dropping听coverage听鈥斕齬eflect people who signed up hoping that Congress might听actually renew听the subsidies this month. Since we kept saying that was听possible.听

Ollstein:听I would bet that most people are not following the听minutiae of听what’s听happening on Capitol Hill and have no听idea听the mess听we’re听in,听and听why,听and听who’s听responsible. I would love to be wrong about that. I would听love for听everyone to be super informed.听Hopefully听they听listen听to this podcast. But you know, I think that a lot of people just听sign up听year after year and听aren’t听sure of听what’s听going on until听they’re听hit with the giant bill.听听

Rovner:听Yeah.听

Ollstein:听One thing I will point out about the emerging numbers is it does show,听at least early indications,听that the steps a lot of states are taking to make up for the shortfalls and put their own funding into helping people and subsidizing plans,听that’s really working.听You’re听seeing听enrollment up听in some of those states, and so I wonder if听that’ll听encourage any others to get on board as well.听

Kenen:听But听鈥� I think what Julie said听is听it’s听鈥μ齮he follow-up is less than expected. But for the reasons Julie just听said听is that you haven’t gotten your bill yet.听So听either you听haven’t听been paying attention, or听you’re听an optimist and think听there’ll听be a solution.听So, and听people might even pay their first bill thinking that听there’ll听be a solution next month, or that听we’re听close. I mean, I would think听there’d听be drop-off soon, but there might be a steeper听cliff a month or two from now, when people realize this is it for the year, and not just a tough, expensive month or two. So just because听they’re听not as bad as some听people听forecast听doesn’t听say that this is going to be a robust coverage year.听

Edney:听And I think,听I mean, they are the whole picture when you’re talking about who’s signing up, but a lot of these people that I’ve read about or heard about are on the radio programs and different things are signing up,听are drastically changing their lives to be able to afford what they think might be their insurance. So how does that play out听in other aspects?听I听think听will be听..听of the economy of jobs, like, where does that lead听us? I听think听will be something to watch out for too.听

Rovner:听And by the way, in case you’re wondering why health insurance is so expensive, we got the听, and total health expenditures grew by 7.2% from the previous year to听$5.3 trillion, or 18% of the nation’s GDP听[gross domestic product],听up from 17.7% the year before. Remember, these are the numbers for 2024,听not 2025,听but it makes听it听pretty听hard听for Republicans to blame the Affordable Care Act itself for rising insurance premiums. Insurance is more expensive because听we’re听spending more on health care.听It’s not really that complicated, right?听

Kenen:听This 17%-18% of GDP has been听pretty consistent, which听doesn’t听mean听it’s听good;听it just means听it’s听been around that level for many, many, many years. Despite all the talk about听how it’s听unsustainable,听it’s听been sustained,听with pain, but sustained.听$5.7 trillion,听even if听you’ve听been doing听this听a long time听鈥μ�

Rovner:听It’s听$5.3 trillion.听

Kenen:听$5.3 trillion.听It’s听a mind-boggling听number.听It’s听a lot of dollars!听So the ACA made insurance more听鈥斕齮he out-of-pocket cost of insurance for millions of Americans, 20-ish million听鈥斕齜ut the underlying burden we’ve not solved听the 鈥� to use the word of the moment, the听“affordability”听crisis in health听care is still with us and arguably getting worse. But like, I think听we’re听sort of numb. These numbers are just so insane, and yet you say听it’s听unsustainable, but听鈥μ齀 think it听was听Uwe’s听line, right?听

Rovner:听It was, it was a famous听Uwe听Reinhardt line.听

Kenen:听No,听it’s听sustainable, if听we’re听sustaining it at a high听鈥斕齣n听economically听鈥斕齴any price.听听

Rovner:听Right.听

Kenen:听And, like, the other thing is, like, where is the money?听Right? Everybody in health听care says they听don’t听have any money, so I听can’t听figure out who has the听$5 trillion.听

Rovner:听Yeah, well, it’s not听鈥μ齣t does not seem to be the insurance companies as much as it is,听you know, if you look at these numbers听鈥斕齛nd I’ll post a link to them听鈥斕齳ou know, it’s hospitals and drug companies and doctors and all of those who are part of the health听care industrial complex, as I like to call听it.听

Kenen:听All听of them say they听don’t听have enough.听听

Rovner:听Right.听All right. So we know that the Affordable Care Act subsidies are hung up over abortion, as Alice pointed out, and we know that the big abortion demonstration, the March for Life, is coming up next week, so I guess it shouldn’t be surprising that Senate听health听committee听chairman and ardent anti-abortion听senator Bill Cassidy would hold a hearing not on changes to the vaccine schedule, which he has loudly and publicly complained about, but instead about听the reputed dangers of the abortion pill,听mifepristone.听Alice, like me, you watched yesterday’s hearing. What was your takeaway?听

Ollstein:听So, you know, in a sense, this was a show hearing. There听wasn’t听a bill under consideration. They听didn’t听have anyone from the administration to grill. And听so听this is just听sort of your听typical听each side听tries to make their point hearing. And the bigger picture here is that conservatives, including senators and the activist groups who are sort of goading them on from the outside听鈥斕齮hey’re really frustrated right now about the Trump administration and the lack of action they’ve seen in this first year of this administration on their top priority, which is restricting the abortion pill.听Their bigger goal is outlawing all abortion,听but since abortion pills comprise the majority of abortions these days, that’s what they’re targeting.听And听so听they’re听frustrated that, you know, both听[Robert听F.]听Kennedy听[Jr.]听and听[Marty]听Makary have promised some sort of review or action on the abortion pill, and they say,听We听want to see it.听Why haven’t you done it yet?听And听so听I think that pressure听is only going to mount, and this hearing was part of that.听

Rovner:听I was fascinated by the Louisiana听attorney听general saying,听basically,听the听quiet part听out loud, which is that听we banned abortion, but because of these abortion pills, abortions are still going up in our state.听That was the first time I听think听I’d听heard an official say that. I mean that,听if you wonder why听they’re听going after the abortion pill,听that’s听why听鈥斕齜ecause they听struck down听Roe听[v. Wade]听and assumed that the number of abortions would go down, and it really has not, has it?听

Ollstein:听That’s听right. And so not only are people increasingly using pills to听terminate听pregnancies, but听they’re听increasingly getting them via telemedicine.听And you know, that’s absolutely true in states with bans, but it’s also true in states where abortion is legal.听You know, a lot of people just really prefer the telemedicine option,听whether because听it’s cheaper, or they live really far away from a doctor who is willing to prescribe this, or, you know, any other reasons.听So听the right听鈥斕齳ou know, again, including senators like Cassidy, but also these activist groups听鈥斕齮hey’re听saying, at a bare minimum, we want the Trump administration to ban telemedicine for the pills and reinstate the in-person dispensing requirement. That would really roll back access across the country. But what they really want is for the pills to be taken off the market altogether. And听they’re听pretty open听about saying that.听听

Rovner:听Well, rather听convenient timing from the听, which published a peer-reviewed study of 5,000 pages of documents from the FDA that found that over the last dozen years, when it comes to the abortion pill and its availability, the agency followed the evidence-based recommendations of its scientists every single听time, except once, and that once was during the first Trump administration.听Alice,听is there anything that will convince people that the scientific evidence shows that mifepristone is both safe and effective and actually has a very low rate of serious complications?听There were,听how many, like 100,听more than 100 peer-reviewed听studies that听basically听show听this,听plus the experience of many millions of women in the United States and around the world.听

Ollstein:听Well, just like听I’m听skeptical that听there’s听any compromise that can be found on the Obamacare subsidies,听there’s听just no compromise here. You know, you have the groups that are making these arguments about the pills’听safety say very openly that, you know, the reason they oppose the pills is because they cause abortions. They say it听can’t听be health care if听it’s听designed to end a life, and that kind of rhetoric. And听so听the focus on the rate of complication听鈥μ齀 mean,听I’m听not saying听they’re听not genuinely concerned. They may be, but, you know, this is one of many tactics听they’re听using to try to curb access to the pills.听So听it’s听just one argument in their arsenal.听It’s听not听their,听like,听primary driving, overriding goal is, is the safety which, like you said, has been well听established听with many, many peer-reviewed studies over the last several years.听

Rovner:听So, in between these big, high-profile anti-abortion actions like Senate hearings, those supporting abortion rights are actually still prevailing in court, at least in the lower courts. This week, [a lawsuit filed by the American Civil Liberties Union and the National Family Planning and Reproductive Health Association against the Trump administration after the administration also quietly gave Planned Parenthood and other family planning groups] back the Title X family planning money that was appropriated to it by Congress. That was what Joanne was referring to, that Congress has been appropriating money that the administration hasn’t been spending. But this wasn’t really the big pot of federal money that Planned Parenthood is fighting to win back, right?

Ollstein:听It was one pot of money听they’re听fighting to win back. But yes, the much bigger Medicaid cuts that Congress passed over last听summer,听those are still in place. And so听that’s听an order of magnitude more than this pot of听Title听X听family planning money that they just got back. So that aside,听I’ve听seen a lot of conservatives conflate the two and accuse the Trump administration of violating the law that Congress passed and restoring funding to Planned Parenthood. This is different funding, and听it’s听a lot less than the cuts that happened. And so I talked to the organizations impacted, and it was clear that even though they’re getting this money back, for some it came too late, like they already closed their doors and shut down clinics in a lot of states, and they can’t reopen them with this chunk of money. This money is when you give a service to a听patient,听you can then听submit听for reimbursement. And听so听if the clinic’s not there,听it’s听not like they can use this money to, like, reopen the clinic, sign a lease, hire people, etc.听听

Rovner:听Yeah.听The wheels of the courts, as we have seen, have moved very slowly.听

OK,听we’re听going to take a quick break. We will be right back.听

So听while abortion gets most of the headlines,听it’s听not the only culture war issue in play. The Supreme Court this week heard oral arguments in a case challenging two of the 27 state laws barring transgender athletes from competing on women’s sports teams. Reporters covering the argument said it seemed unlikely that听a majority of听justices would strike down the laws,听which would allow all of those bans to stand. Meanwhile, the other two branches of the federal government have also weighed in on the gender issue听in recent weeks.听The House passed a bill in December, sponsored by now former Republican听congresswoman听Marjorie Taylor Greene that would make it a felony for anyone to provide gender-affirming care to minors nationwide.听And the Department of Health and Human Services issued proposed regulations just before Christmas that听wouldn’t听go quite that听far, but听would have听roughly the听same effect. The regulations would ban hospitals from providing gender-affirming care to minors or risk losing their Medicare and Medicaid听funding, and听would bar funding for gender-affirming care for minors by Medicaid or the Children’s Health Insurance Program. At the same time, Health and Human Services Secretary Kennedy issued a declaration, which is already being challenged in court, stating that gender-affirming care, quote,听“does not meet professionally recognized standards of health care,”听and therefore practitioners who deliver it can be excluded from federal health programs. I get that sports听team听exclusions have a lot of public support, but does the public really support effectively ending all gender-affirming care for minors?听That’s听what this would do.听

Edney:听Well, I think that when a lot of people hear that, they think of surgery, which is the much, much, much, much, much less likely scenario here that听we’re听even talking about. And so those who are against it have done an effective job of making that听the issue. And so there听鈥μ齱ho support gender-affirming care, who have听looked into听it, would see that a lot of this is hormone treatment, things like that, to drugs听鈥μ�

Rovner:听Puberty blockers!听

Edney:听鈥μ齮hey’re taking听鈥斕齟xactly听鈥斕齛nd so it’s not, this isn’t like a permanent under-the-knife type of thing that a lot of people are thinking about, and I think,听too,听talking about, like mental health, with being able to get some of these puberty blockers, the effect that it can have on a minor who doesn’t want to live the way they’ve been living, so it’s so helpful to them.听So听I think that there’s just a lot that has, you know, there’s been a lot of misinformation out there about this, and I feel like听that that’s kind of winning the day.听

Kenen:听I think,听like,听from the beginning, because, like, five or six years ago was the first time I wrote about this. The听playbook has been very much like the anti-abortion playbook. They talk about it in terms of protecting women’s health, and now听they’re听talking about it in protecting children’s health. And,听as Anna said,听they’re听using words like mutilation. Puberty blockers are not听mutilation. Puberty听blockers are a medication that delays the onset of puberty, and it is not irreversible.听It’s听like a听brake. You take your foot off the brake,听and puberty starts.听There’s听some controversy about what age and how long, and听there’s听some听possible bone听damage. I mean, there’s some questions that are raised that need to be answered, but the conversation that’s going on now听鈥斕齧ost of the experts in this field, who are endocrinologists and psychologists and other people who are working with these kids,听cite a lot of data saying that not only this is safe, but it’s beneficial for a kid who really feels like they’re trapped in the wrong body.听So听you know, I think it’s really important to repeat听鈥μ齮he point that Anna made, you know, 12-year-olds are not getting major surgery.听Very few minors are, and when they are,听it’s听closer听鈥� they听may be under 18,听it’s听rare. But if听you’re听under 18,听you’re听closer to 18,听it’s听later in听teens. And听it’s听not like you walk into an operating room and say, you know,听do this to me.听There’s听years of counseling and evaluation and professional teams. It really did strike a nerve in the campaign. I think Pennsylvania,听in particular.听This is something that people听don’t听understand and get听very upset听about, and the inflammatory听language,听it’s听not creating understanding.听

Rovner:听We’ll听see how听this one plays听out. Finally, this week, things at the Department of Health and Human Services听continues听to be chaotic. In the latest round of听“we’re cutting you off because you don’t agree with us,”听the Substance Abuse and Mental Health Services Administration sent hundreds of letters Tuesday to grantees听canceling听their funding听immediately.听It’s听not entirely clear how many grants or how much money was involved, but it听appeared to be听something听in the neighborhood of听$2 billion听鈥斕齮hat’s听around a fifth of SAMHSA’s听entire budget. SAMHSA, of course, funds programs that provide addiction and mental health treatment, treatment for homelessness and suicide prevention, among other things. Then,听Wednesday night, after a furious backlash from Capitol Hill and听just about every听mental health and substance abuse group in the country, from what I could tell from my email, the administration canceled the cuts.听Did they miscalculate the scope of the reaction here, or was chaos the actual goal in this?听听

Edney:听That is听a great question. I really听don’t听know the answer. I don’t know what it could serve anyone by doing this and reversing it in 24 hours, as far as the chaos angle, but it does seem, certainly,听like there was a听miscalculation of how Congress would react to this, and it was a bipartisan reaction that wanted to know why, what is it even your justification? Because these programs do seem to support the priorities of this administration and HHS.听

Rovner:听I听didn’t听count, but I got dozens of emails yesterday.听听

Edney:听Yeah.听

Rovner:听My entire email box was overflowing with people听basically freaking听out about these cuts听to SAMHSA. Joanne,听you wanted听to say something?听

Kenen:听I think that one of the shifts over听鈥斕齀’m not exactly sure how many years听鈥斕�7,听8,听9, years, whatever we’ve been dealing with this opioid crisis, the country has really changed and how we see addiction, and that we are much more likely to view addiction not as a criminal justice issue, but as a mental health issue.听It’s听not that everybody thinks that.听It’s听not that every lawmaker thinks that, but we have really turned this into, we听have seen it as, you know, a health problem and a health problem that strikes red states and blue states. You know, we are all familiar with the听“deaths of despair.”听Many of us know at least an acquaintance or an acquaintance’s family that have experienced an overdose death. This is a bipartisan shift. It is,听you know,听you’ve听had plenty of conservatives speaking out for both more money and more compassion. So I think that the backlash yesterday, I mean, we saw the public backlash, but I think there was probably a behind-the-scenes听鈥斕齭ome of the听“Opioid听Belts”听are very conservative states,听and Republican governors, you know, really saying we’ve had progress.听Right? The last couple of years, we have made progress. Fatal overdoses have gone down, and Narcan is available. And just like our inboxes, I think their听telephones, they听were bombarded.听听

Rovner:听Yeah.听Well, meanwhile, several听hundred听workers have听reportedly been听reinstated at the National Institute of Occupational Safety and Health听鈥斕齮hat’s听a听subagency of CDC听[the Centers for Disease Control and Prevention].听Except that those RIF听[reduction in force]听cancellations came nine months after the original RIFs, which were back in April. Does the administration think these folks are just sitting around waiting to be called back to work?听And in news from the National Institutes of Health,听Director Jay Bhattacharya told a podcaster last week that the DEI-related听[diversity, equity, and inclusion]听grants that were canceled and then reinstated due to court orders are likely to simply not be renewed. And at the FDA, former longtime drug regulator Richard听Pazdur听said at the J.P.听Morgan听[Healthcare] Conference in San Francisco this week that the听firewall听between the political appointees at the agency and its career听drug reviewers has been,听quote,听“breached.”听How is the rest of HHS expected to actually, you know, function with even so much uncertainty about who works there and who’s calling the shots?听

Ollstein:听Not to mention听all of听this back and forth and chaos and starting and stopping is costing more,听is costing taxpayers more.听Overall spending is up. After all of the听DOGE听[Department of Government Efficiency]听and听RIFs听and all of it, they have not cut spending at all because it’s more expensive to pay people to be on administrative leave for a long time and then try to bring them back and then shut down a lab and then reopen a lab. And all of this has not only meant, you know, programs not serving people, research not happening, but it听hasn’t听even saved the government any money, either.听

Kenen:听Like, you know, the game we played when we were kids, remember,听“Red听Light-Green听Light,”听you know, you’d听run in one direction, you run back. And if you were听8听years old, it would end with someone crying. And that’s听sort of the听way听we’re听running the government听these听days听[laughs].听The amount of people fired, put on leave. The CDC has had this incredible yo-yoing of people. You听can’t听even keep track. You听don’t听even know what email to use if听you’re听trying to听keep听in听touch听with them听anymore. The churn,听with what logic?听It’s, as Alice said,听just听more expensive, but it’s,听it’s听also just听鈥μ齦ike听you听can’t听get your job done.听Even if you want a smaller government, which many of conservatives and Trump people do,听you still want certain functions fulfilled.听But there’s still a consensus in society that we need some kind of functioning health system and health oversight and health monitoring.听I mean, the American public is not against research, and the American public is not against keeping people alive.听You know, the inconsistency is pretty mind-boggling.听

Edney:听Well, there’s a lot of rank-and-file, but we’re seeing a lot of heads of parts of the agencies where, like at the FDA, with the drug center, or many of the different institutes at NIH that really don’t have anyone in place that is leading them. And I think that that, to me, like this is just my humble opinion, is听it听kind of seems听like the message as听anybody can do this part, because听it’s听all coming from one place. There’s really just one leader, essentially, RFK, or maybe it’s Trump, or they want everyone to do it the way that they’re going to comply with the different,听like you said, everyone wants research, but I,听Joanne, but I do think they only want certain kinds of research in this case.听So听it’s听been interesting to watch how many leaders in these agencies that are going away and not being replaced.听

Rovner:听And all the institutional memory听that’s听walking out the door. I mean,听more people听鈥斕齛nd to听Alice’s point about how this听hasn’t听saved money听鈥斕齧ore people have taken early retirement than have听been actually, you听know,听RIF’d听or fired or let go. I mean, they’ve just听鈥μ齛 lot of people听have basically, including听a lot of leaders of many of these agencies, said,听We听just听don’t听want to be here under these circumstances.听Bye.听Assuming at some point this government does want to use the Department of Health and Human Services to get things done,听there might not be the personnel around to actually effectuate it.听But we will continue to watch that space.听

OK, that’s this week’s news. Now we will play my听“Bill of the听Month”听interview with Elisabeth Rosenthal, and then we will come back and do our extra credits.听

I am pleased to welcome back to the podcast Elisabeth Rosenthal, senior contributing editor at听麻豆女优听Health听News and originator of our听“Bill of the Month”听series, which in its听nearly eight听years has analyzed听nearly $7 million听in dubious, infuriating,听or inflated medical charges. Libby also wrote the latest听“Bill of the听Month,”听which听we’ll听talk about in a minute. Libby, welcome back to the podcast.听

Elisabeth Rosenthal:听Thanks for having me back.听

Rovner:听So听before we get to this month’s patient, can you reflect for a moment on the impact this series has had, and how frustrated听are you that eight years on,听it’s听as relevant as it was when we began?听

Rosenthal:听We were听worried it听wouldn’t听last a year, and here we are, eight years later, still finding plenty to write about. I mean,听we’ve听had some wins.听I think we听helped contribute to the听No听Surprises听Act being passed.听There are听states clamping down on facility fees, you know, and making sure that when you get something done in a hospital rather than an outpatient clinic,听it’s听the same cost. The听country’s听starting to address drug prices.听But,听you know, we听seem to be听the billing听police, and听that’s听not good.听We’ve听gotten a lot of bills written off for our individual patients. Suddenly, when a reporter calls,听they’re听like,听Oh, that was a mistake听or听Yeah,听we’re听going to write that off. And听I’m听like,听You’re听not writing that off;听that听shouldn’t听have been billed. So sadly, the series is still going strong, and medical billing has proved endlessly creative. And you know, I think the sad thing for me is our success is a sign of a deeply, deeply dysfunctional system听that听has听left,听as we know, you know, 100 million adult Americans with medical debt.听So听we will keep going until听it’s听solved,听I hope.听

Rovner:听Well, getting on to this month’s patient, he gives new meaning to the phrase听“It must have been something I ate.”听Tell us what it was and how he ended up in the emergency room.听

Rosenthal:听Well, Maxwell听[Kruzic]听loves eating spicy foods, but听he’s听never had a problem with it. And suddenly, one night, he had just听excruciating, crippling abdominal pain. He drove himself to the emergency room. It was so bad he had to stop three times, and when he got there, it was mostly on the right-lower quadrant. You know, the doctors were so convinced, as he was, that he had appendicitis, that they called a surgeon right away, right?听So听they were all听like,听ready to go to the operating room. And then the scan came back, and it was like,听whoops,听his appendix is normal. And then,听oh, could he have kidney stones?听And听it’s听like no sign of that either. And finally, he thought, or someone asked,听Well, what did you eat last night?听And of course, Maxwell had ordered the hottest chili peppers from a bespoke chili pepper-growing company in New Mexico. They have some chili pepper rating of 2 million听[Scoville heat units], which is,听like,听through the roof, and it was a reaction to the chili peppers.听I didn’t even know that could happen, and I trained as a doctor, but I guess your intestines don’t like really, really, really hot stuff.听

Rovner:听So听in the end, he was听OK.听And the story here isn’t even really about what kind of care he got, or how much it cost.听The $8,000 the hospital charged for his few hours in the ER听doesn’t听seem all that out of line compared to some of the bills听we’ve听seen.听What was most notable in this case was the fact that the bill didn’t actually come until two years later.听How much was he asked to pay two years after the hot pepper incident?听

Rosenthal:听Well, he was asked to pay a little over $2,000,听which was his coinsurance for the emergency room visit. And as he said, you know, $8,000听鈥μ齨ow we go,听well,听that’s听not bad.听I mean, all they did,听actually, was do a couple of scans and give him some IV fluids.听But听in this day and age,听you’re听like, wow, he got away听鈥� you know, from听a听“Bill of a听Month”听perspective, he got away cheap, right?听

Rovner:听But I would say, is it even legal to send a bill two years after the fact? Who sends a bill two years later?听

Rosenthal:听That’s听the problem,听like,听and Maxwell听鈥斕齢e’s听a pretty smart guy, so he was checking his portal repeatedly. I mean, he paid something upfront at the ER, and he kept听thinking,听I must owe something. And he checked and he听checked听and he checked and it kept saying zero. He actually called his听insurer and听to make sure that was right. And they said,听No, no, no,听it’s听right. You owe zero. And then, you know, after like, six months, he thought,听I guess I听owe zero. But then he听didn’t听think about it, and then almost two years later, this bill arrives in the mail, and听he’s听like,听What?!听And what I discovered, which is a little disturbing, is it is not, I wouldn’t say normal, but we see a bunch of these ghost bills at听“Bill of the听Month,”听and in many cases, it’s legal, because听of听what was going on in those two-year periods. And of course, I called the hospital, I called the insurer, and they were like,听Yeah, you know, someone was away on vacation, and someone left their job, and we听couldn’t听鈥μ齳ou know, the hospital听billed them听correctly. And the hospital said,听No, we听didn’t.听And they were just听kind of doing听the usual听back-end negotiations to figure out what a service is worth.听And when they finally agreed two years later听what should be paid,听that’s听when they sent Maxwell the bill. And the problem听is,听whether听it’s听legal really depends on your insurance contracts, and whether they allow this kind of late billing.听I do not know to this day if Maxwell’s did, because as soon as I called the insurer听and听the hospital, they were like,听Never听mind. He听doesn’t听owe听anything. And you know, as he said,听he’s听a geological engineer. He has lots of clients, and as he said, you know, if I called them two years later and said,听Whoops, I forgot to bill for something, they would be like,听Forget听it!听you听know.听So听I do think this is something that needs to be addressed at a policy level, as we so often discover on听“Bill of the听Month.”听

Rovner:听So听what should you do if you get one of these ghost bills? I should say听I’m听still negotiating bills from a surgery that I had six months ago.听So听I guess I should听count听myself lucky.听

Rosenthal:听Well, I think you should check with your insurer and check with the hospital. I think more听with听your insurer听鈥斕齣f the contract says this is legal to bill.听It’s听unclear听to me,听in this case, whether it was.听The hospital was very much like,听Oh, we made a mistake;听because it took so long,听we听actually听couldn’t听bill Maxwell.听So听I think in his case, it听probably was听in the contract that this was too late to听bill. But, you know, I think a lot of hospitals, I hate to say it, have this attitude.听Well,听doesn’t听hurt to try, you know,听maybe听they’ll听pay听it. And people are afraid of bills, right? They听pay听them.听听

Rovner:听I know the feeling.听

Rosenthal:听Yeah, I do think, you know, they should check with their insurer about whether there’s a statute of limitations,听essentially,听on billing, because there may well be and I would say it’s a great asymmetry, because if you submit an insurance claim more than six months late, they can say,听Well, we won’t pay this.听

Rovner:听And just to tie this one up with a bow, I assume that Maxwell has changed his pepper-eating ways, at least听modified听them?听

Rosenthal:听He said he will never eat听scorpion peppers again.听

Rovner:听Libby Rosenthal, thank you so much.听

Rosenthal:听Oh, sure.听Thanks听for having me.听

Rovner:听OK,听we’re听back, and now听it’s听time for our听extra-credit听segment.听That’s听where we each recognize a story we read this听week听we think you should read,听too.听Don’t听worry if you miss it. We will post the links in our show notes on your phone or other mobile device. Anna, why don’t you start us off this week?听

Edney:听Sure.听So听my extra credit is from听MedPage听Today:听“.”听I appreciated this article because it answered some questions that I had,听too,听after the sweeping change to the childhood vaccine schedule. There听was听just a lot of discussions I had about, you know, well, what does this really mean on the ground? And will听parents听be confused? Will pediatricians听鈥斕齢ow will they be talking about this? You know, will they stick to the schedule we knew before? And there was an article in JAMA听Perspectives听that lays out, essentially, to听clinicians, you know, that they should not fear malpractice听..听issues if听they’re听going to talk about the old schedule and not adhere to the newer schedule. And听so听it lays out some of those issues.听And I thought that was really helpful.听

Rovner:听Yeah, this was a big question that I had,听too.听Alice, why don’t you go next?听

Ollstein:听Yeah, so I have a piece from ProPublica.听It’s听called听“.”听So听this is about how听there’s听been this huge push on the right to end public water fluoridation that has succeeded in a听couple听places and could spread more. And the proponents of doing that say that听it’s听fine because there are all these other sources of fluoride. You can get听a treatment听at the听dentist,听you can get it in stuff you buy at the drugstore and take yourself. But at the same time, the people who听arepushing听for ending fluoridated public drinking water听are also pushing for restricting those other sources. There have been state and federal efforts to crack down on them, plus听all of听the just rhetoric about fluoride, which is very misleading. It misrepresents studies about its alleged听neurological impacts. But it also,听that kind of rhetoric makes people afraid to have fluoride in any form, and people are very worried about that, what听that’s听going to do to the nation’s teeth?听

Rovner:听Yeah,听it’s听like vaccines. The more you听talk听it听down,听the less people want to do it.听Joanne.听

Kenen:听This is听a piece by听Dhruv Khullar听in听The New Yorker called听“,”听and it was really great, because there’s certain things I think that we who听鈥斕齦ike, I don’t know how all of you watch it听鈥斕齜ut like, there’s certain things that didn’t even strike me, because I’m so used to writing about, like, the connection between poverty, social determinants of health, and, like, of course, people who come to the ED听[emergency department]听have, you know, homelessness problems and can’t afford food and all that. But听Dhruv听talked听about听how it听sort听of brought that home to him, how our social safety net, the holes in it, end up in our听EDs.听And he also talked about some of it is dramatized more for TV, that not everybody’s heart stops every 15 minutes. He said that sort of happens to one patient听a听day. But he talked about compassion and how that is rediscovered in this frenetic ED/ER听scene.听It’s听just a very thoughtful piece about why we all love that TV show. And听it’s听not just because of听Noah Wyle.听

Rovner:听Although that helps. My extra credit this week is from听The New York Times.听It’s听called听“,” by Maxine听Joselow.听And while it’s not about HHS, it most definitely is about health.听It seems that for the first time in literally decades, the Environmental Protection Agency will no longer calculate the cost听to听human health when setting clean air rules for ozone and fine particulate matter, quoting the story:听“That would most likely lower costs听for companies while resulting in dirtier air.”听This is just another reminder that the federal government is听charged with ensuring the help of Americans from a broad array of agencies, aside from HHS听鈥斕齩r in this case, not so much.听听

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

Ollstein:听Mostly听on听Bluesky听听and still on听X听.听

Rovner:听Joanne.听

Kenen:听I’m听mostly on听听or on听听.听

Rovner:听Anna.听

Edney:听听or听X听.听

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

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鈥� Matthew Hurley, 30 años, de Berkeley, California

Hace un par de años, Matthew Hurley recibió el tipo de mensaje de texto que muchas personas temen: “驴Cuándo fue la última vez que te hiciste una prueba de ETS (enfermedades de transmisión sexual)?”

Una persona con la que Hurley había tenido sexo sin protección recientemente acababa de recibir un diagnóstico positivo de VIH.

Hurley fue a una clínica para hacerse la prueba. “Por suerte no tenía VIH, pero fue una llamada de atención”, dijo.

Esa experiencia impulsó a Hurley a buscar información sobre PrEP, sigla para la profilaxis preexposición. Este medicamento antirretroviral reduce considerablemente la probabilidad de adquirir VIH, el virus que causa el sida. Cuando se toma tal cual se indica, la terapia es para prevenir la transmisión sexual.

Hurley comenzó a tomar PrEP y todo marchaba bien durante los primeros nueve meses, hasta que cambió su seguro médico y tuvo que ver a un nuevo doctor. “Cuando le mencioné PrEP, me dijo: 鈥樎縌ué es eso?’ Y yo pensé: esto no pinta bien”.

Hurley, quien es bibliotecario, asumió el rol de docente. Le explicó al doctor que el régimen de PrEP que seguía implicaba tomar una pastilla diaria y hacerse análisis de laboratorio cada tres meses para detectar posibles infecciones o complicaciones de salud.

Hurley se sorprendió de saber más sobre PrEP que su propio médico.

La Administración de Alimentos y Medicamentos (FDA, por sus siglas en inglés) aprobó el primer fármaco, . Además, Hurley vive en el área de la bahía de San Francisco, una de las zonas con en el país y de activismo en salud y VIH.

Amistades mayores que él y conocidos que sobrevivieron a la epidemia de sida le compartieron lo duro que fue vivir en una época sin tratamientos eficaces ni opciones preventivas. Para él, decidir tomar PrEP fue una forma de proteger su salud y también la de su comunidad.

Así que insistió, y el doctor, tras investigar por su cuenta, aceptó recetarle el medicamento.

Hurley recibió la atención necesaria, pero tuvo que asumir el papel de experto en la consulta médica.

“Es una gran carga”, señaló Beth Oller, doctora en medicina familiar y miembro de la junta de GLMA, una organización nacional de profesionales de salud LGBTQ+ y aliados centrada en la equidad en salud. “Una quiere poder ir al médico a hablar sobre su salud sin tener que estar educando ni abogando por sí misma en cada paso”.

Oller agregó que muchas personas queer han tenido en consultas. “Tengo muchos pacientes que no recibieron atención preventiva durante años debido al estigma médico”, afirmó.

Problemas con la facturación

Superar los obstáculos iniciales para acceder a medicamentos preventivos contra el VIH fue solo el comienzo. Hurley empezó a recibir una serie de facturas relacionadas con la PrEP: análisis de sangre: $271,80. Visita médica: $263.

Se sorprendió. Sabía 鈥攁unque en la oficina de facturación parecían no saberlo鈥� que, según la (ACA, por sus siglas en inglés), la mayoría de los seguros privados y programas de Medicaid ampliado y los servicios relacionados, , se cubren como atención preventiva sin costo para el paciente.

Las facturas por las visitas médicas y los análisis se acumularon.

Hurley reclamaba por las facturas y, casi siempre, recibía una negativa. Pero volvía a protestar.

Compartió una serie de cartas de reclamos por un servicio específico, en las que la oficina de facturación admitía que el análisis de sangre había sido mal codificado inicialmente como diagnóstico. Una vez corregido el error, según Hurley, el seguro cubrió el servicio.

Puede parecer que se resolvió rápido y fácilmente, pero Hurley dijo que el proceso fue eterno. Tuvo que lidiar con al menos seis facturas erróneas durante varios meses. Calcula que invirtió más de 60 horas en resolver los cobros.

Durante ese tiempo, contó, el departamento de facturación “seguía mandándome correos y facturas diciendo: estás en mora, estás en mora, estás en mora”.

Cansado de tantas complicaciones, Hurley decidió buscar un proveedor de salud (y una oficina de facturación) con más conocimiento sobre PrEP. Eligió a AIDS Healthcare Foundation. Allí, el equipo médico pudo explicarle los pros y contras de los distintos tratamientos preventivos disponibles. Sabían cómo manejar el formulario del seguro de Hurley.

Desde entonces, no ha recibido más facturas inesperadas.

Pero tener que separar la atención en salud sexual y PrEP del cuidado médico general no es lo ideal.

“Tengo que tratar con varias organizaciones distintas para que me atiendan de manera integral”, señaló.

Un proveedor no tiene que ser especialista en VIH, en enfermedades infecciosas ni siquiera un doctor para recetar PrEP. Los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés) alientan a los proveedores de atención primaria a tratar PrEP como cualquier otro .

Cómo evitar algunos de los dolores de cabeza que enfrentó Hurley:

1. Infórmate para saber si PrEP es para tí

Los CDC calculan que en Estados Unidos podrían beneficiarse del uso de medicamentos preventivos contra el VIH, pero solo poco más de una cuarta parte los recibe.

“No todo el mundo conoce la existencia de PrEP, y hay muchas personas que sí han oído hablar del medicamento pero no saben que puede beneficiarles”, explicó Jeremiah Johnson, director ejecutivo de PrEP4All, una organización dedicada al acceso universal a medicamentos y prevención del VIH.

Según las guías clínicas de los CDC, cualquier persona sexualmente activa puede considerar incluir PrEP como parte de su plan de atención preventiva.

Se recomienda especialmente para quienes no usan condones con regularidad, personas que se inyectan drogas y comparten agujas, hombres que tienen sexo con hombres y personas con parejas que viven con VIH o cuyo estado serológico es incierto.

La gran mayoría de quienes usan PrEP son hombres. Existen grandes tanto en la distribución de los casos de VIH como en el acceso a la medicina preventiva.

Por ejemplo, según los patrones de nuevas infecciones en Estados Unidos, un grupo que podría beneficiarse del medicamento son las mujeres negras cisgénero, cuya identidad de género coincide con su sexo asignado al nacer.

2. No asumas que tu doctor sabe qué es PrEP

Si tu doctor no está bien informado, . También puedes llevarle guías clínicas e información relevante. Muchas agencias estatales o locales de salud pública tienen guías específicas para profesionales. Por ejemplo, el Instituto del SIDA del Departamento de Salud del estado de Nueva York tiene materiales .

Los , pero muchos de los sitios web de esa agencia relacionados con salud LGBTQ+ están en revisión. Durante la administración Trump, algunos recursos sobre VIH/sida fueron retirados de los portales federales. Otros ahora : “Esta página no refleja la realidad biológica y por lo tanto esta administración y este Departamento la rechazan”.

3. Hazte los análisis en laboratorios dentro de la red

Johnson señaló que los errores de facturación como los de Hurley son muy comunes. “Los costos de los análisis de laboratorio en particular pueden ser complicados”, dijo.

Por ejemplo, en el consultorio podrían codificar mal el análisis requerido para PrEP como si fuera y no atención preventiva. Como resultado, pacientes como Hurley terminan con facturas que no deberían pagar.

Si el personal médico comete este tipo de errores, puedes hacerles llegar la de NASTAD, una asociación de autoridades de salud pública que administran programas de VIH y hepatitis.

Hazte los exámenes de laboratorio dentro de la red de tu seguro. Si los haces fuera de la red, advirtió Johnson, puede ser más difícil apelar.

Si las facturas siguen llegando, apela. Y si no logras resolver la disputa, Johnson recomienda presentar una queja ante la agencia reguladora del plan de salud.

4. Busca maneras de ahorrar

Hay varios tipos de PrEP. Existen versiones genéricas más económicas de Truvada, como la combinación de emtricitabina/tenofovir disoproxil fumarato, que suele abreviarse como FTC/TDF. Las versiones más nuevas como tienen precios de lista en los miles de dólares. Revisa el formulario de tu seguro y pídele a tu doctor que recete el medicamento que esté cubierto.

Con el aumento previsto de las primas de salud y millones de personas en riesgo de perder la cobertura de Medicaid, muchas podrían quedar sin seguro médico en 2026. Empresas farmacéuticas como y ofrecen programas de asistencia para pacientes que califican. Si tienes que pagar de tu bolsillo, sitios como GoodRx pueden ayudarte a encontrar las farmacias con precios más bajos.

5. Considera la telemedicina

La telemedicina se ha convertido en , especialmente para personas que no viven cerca de proveedores inclusivos o buscan una forma más privada de acceder a PrEP.

En 2024, aproximadamente 1 de cada 5 personas que tomaban PrEP lo hacían por esta vía. Farmacias en línea como y ofrecen PrEP sin necesidad de una consulta presencial, y los análisis se pueden hacer en casa.

Algunas plataformas ofrecen opciones para si no tienes seguro.

La telemedicina también amplía la cantidad de profesionales dispuestos a recetar PrEP. Y para muchos pacientes, hablar con un proveedor de manera remota puede hacerles sentir más seguros. “Están en la comodidad de su dormitorio o sala, pero pueden interactuar virtualmente con un proveedor. Eso abre muchas puertas a la honestidad y la confianza”, explicó Alex Sheldon, director ejecutivo de GLMA.

6. Busca atención inclusiva

GLMA creó el , una base de datos de profesionales de salud en todo el país que se identifican como amigables con la comunidad queer. Como descubrió Hurley, vivir en una gran ciudad no garantiza que tu doctor esté al día en temas de salud LGBTQ+.

Pregunta a personas de confianza en tu comunidad. Puede que haya buenas opciones cerca de ti.

听La Línea de Ayuda sobre Atención Médica (Health Care Helpline) te ayuda a navegar los obstáculos del sistema de salud para que puedas acceder a una buena atención. Envíanos tu pregunta más compleja y podríamos asignar una persona para investigar. Comparte tu historia y tu pregunta aquí. Este proyecto colaborativo es una producción conjunta de NPR y 麻豆女优 Health News.

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).

When Matthew Hurley was looking to take PrEP to prevent HIV, the doctor hadn’t heard of the medicine, and when he finally did prescribe PrEP, the bills sent to Hurley were expensive 鈥� and wrong. “I decided to write in because the process was really super frustrating.” At one point, Hurley asked, “Am I just going to stop this medication to stop having to deal with these coding issues and these scary bills?”

鈥� Matthew Hurley, 30, from Berkeley, California

A couple of years ago, Matthew Hurley got the kind of text people fear.

It said: “When was the last time you were STD tested?”

Someone Hurley had recently had unprotected sex with had just tested positive for HIV.

Hurley went to a clinic and got tested. “Luckily, I had not caught HIV, but it was a wake-up call,” they said.

That experience moved Hurley to seek out PrEP, shorthand for preexposure prophylaxis. The antiretroviral medication greatly reduces the chance of getting HIV, the virus that causes AIDS. The therapy is at protecting people against sexual transmission when taken as prescribed.

Hurley started PrEP and all was well for the first nine months 鈥� until their health insurance changed and they started seeing a new doctor: “When I brought PrEP up to him, he said, 鈥榃hat’s that?’ And I was like, oh boy.”

Hurley, who is a librarian, went into teaching mode. They explained that the PrEP regimen they’d been on required daily pills and lab work every three months to look out for breakthrough infections or other health issues.

Hurley was surprised they knew more about PrEP than the physician. The FDA approved the first drug, Truvada, , and Hurley lives in the San Francisco Bay Area, a place with one of the of LGBTQ+ people in the nation and a of HIV and health care activism. Hurley said older friends and acquaintances who survived the AIDS epidemic shared the horror of living through a time when there was no effective treatment or drugs for prevention. Deciding to take PrEP felt like an empowering way to protect their health and their community.

So Hurley pushed the doctor, and after the physician did his own research, he agreed to prescribe PrEP.

Hurley got the care they needed, but they had to be the expert in the exam room.

“That’s a big burden,” said Beth Oller, a family medicine physician and board member of GLMA, a national organization of LGBTQ+ and allied health care professionals focused on health equity. “You really want someone you can just go in and talk [to] about your health concerns without feeling like you are having to educate and advocate for yourself at every turn.”

Oller said many queer people have had during health care visits.

“I have a lot of patients who had not done preventive care for years because of the medical stigma,” she said.

Billing Headaches

Clearing the access hurdles to HIV prevention medicine was just the beginning. Hurley started receiving a string of bills for PrEP-related care. Blood test: $271.80. Office visit: $263.

Again, Hurley was surprised. They knew 鈥� even if the billing office didn’t 鈥� that under the most private insurance plans and Medicaid expansion programs are PrEP and ancillary services, , as preventive with no cost sharing.

The bills for doctor visits and blood draws piled up.

Hurley would appeal the bill and get a denial almost every time. Then, they would appeal again.

Hurley shared a series of appeal letters for one service, in which the billing office acknowledged that blood work had been initially incorrectly coded as diagnostic. Once that was corrected, Hurley said, the insurer paid for the service.

That might sound quick or easy to resolve, but Hurley said it took “forever to get through the process.” They dealt with at least six incorrect bills over several months. Hurley estimated they spent more than 60 hours contesting the bills.

During that time, Hurley said, the billing department “is continuing to send me emails and bills that are saying, You’re overdue. You’re overdue. You’re overdue.”

Fed up with the hassles, Hurley decided to find a health provider (and billing office) better informed about PrEP. They settled on the AIDS Healthcare Foundation. The care team there was able to discuss the pros and cons of different PrEP regimens and knew how to navigate the formulary for Hurley’s insurance.

Hurley hasn’t gotten an unexpected bill since.

But siloing sexual health care and PrEP off from primary care hasn’t been ideal.

“I have multiple organizations that I have to deal with to get my holistic health dealt with,” Hurley said.

A provider doesn’t need to be an HIV specialist, an infectious disease expert, or a physician to prescribe PrEP. The Centers for Disease Control and Prevention encourages primary care providers to treat PrEP like .

To avoid some of the headaches Hurley faced, try these tips:

1. Find out if PrEP is right for you.

The CDC estimates Americans could benefit from HIV prevention drugs, but just over a quarter of that group have been prescribed them.

“Not enough people know about PrEP, and there are a number of people who know about PrEP but do not realize it’s for them,” said Jeremiah Johnson, executive director of PrEP4All, an organization dedicated to universal access to HIV prevention and medication.

According to the CDC’s clinical guidelines, PrEP can be prescribed as part of a preventive health plan to . It’s especially recommended for people who don’t use condoms consistently, intravenous drug users who share needles, men who have sex with men, and people in relationships with partners living with HIV or whose HIV status is unclear.

The vast majority of PrEP users are men. There are big race, gender, and geographical of HIV and the populations taking the prevention medicine. For example, based on the patterns of new infection in the U.S., a group that would benefit from PrEP is cisgender Black women, whose gender identity aligns with their sex assigned at birth.

2. Don’t assume your provider knows about PrEP.

If your doctors aren’t well informed, start by . There are also clinical guidelines and information you can share with your provider. Check your state or local health department for a how-to guide for prescribing PrEP. For example, the New York State Department of Health AIDS Institute has information .

The , but many of the agency’s websites dealing with LGBTQ+ health are in flux. Under the Trump administration, some HIV/AIDS resources have been taken down from federal websites. Others now have : “This page does not reflect biological reality and therefore the Administration and this Department rejects it.”

3. Get lab work in-network.

Johnson said Hurley’s experience with billing mistakes is common. “The lab expenses in particular end up being very tricky,” Johnson said.

For example, a doctor’s office may mistakenly code the lab work required for PrEP as a instead of preventive care. Patients like Hurley can end up with a bill they shouldn’t have to pay. If your doctor’s office is making mistakes, share the from NASTAD, an association of public health officials who administer HIV and hepatitis programs.

Try to get your lab work done in-network. If the lab is out-of-network, Johnson said, it can be difficult to appeal.

If the bills keep coming, appeal them. And if you can’t resolve the dispute, Johnson said, file a complaint with the agency that regulates your insurance plan.

4. Look for ways to save.

There are different kinds of PrEP. There are lower-cost, generic versions of Truvada, for example, sold as emtricitabine/tenofovir disoproxil fumarate, often shortened to FTC/TDF. Newer PrEP drugs have list prices in the thousands of dollars. Check your insurance formulary and ask your doctor to prescribe medicine your plan will cover.

With many health care premiums dramatically increasing and millions at risk of losing Medicaid coverage, many people may go without health insurance this year. Drug manufacturers such as and have assistance programs for qualifying patients. If you have to pay out-of-pocket, prescription price comparison websites, like GoodRx, can help you find the pharmacies with the cheapest price.

5. Consider telehealth.

Telehealth is an option if you don’t live near an affirming provider or are looking for a more private way to get PrEP. In 2024, roughly 1 in 5 people on PrEP used telemedicine. Online pharmacies like and offer PrEP without an in-person appointment, and lab work can be done at home. Some telehealth options have ways to if you’re uninsured.

Telehealth can also broaden the number of doctors who are ready to prescribe PrEP. And some patients say speaking with a remote provider feels like a safer setting to talk about sexual health. “They’re in the comfort of their own bedroom or living room but can interface virtually with a provider. It can open up a lot of doors for honesty and trust,” said Alex Sheldon, executive director of GLMA.

6. Seek out affirming care.

GLMA created the , a searchable database of health care providers across the nation who identify as queer-friendly. As Hurley discovered, living in a major metro area is no guarantee your doctor is up to date on LGBTQ+ health care.

Ask locals you trust for recommendations. You might be surprised to find good options nearby.

Health Care Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out.听Share your story. The crowdsourced project is a joint production of NPR and 麻豆女优 Health News.

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In 2026, the Trump administration will require U.S. cancer registries that receive federal funding to classify patients’ sex as male, female 鈥� or not stated/unknown. That last category is for when a “patient’s sex is documented as other than male or female (e.g., non-binary, transsexual), and there is no additional information about sex assigned at birth,” the new standard says.

LGBTQ+ health advocates say that move in effect erases transgender and other patients from the data. They say the data collection change is the latest move by the Trump administration that restricts health care resources for LGBTQ+ people.

麻豆女优 Health News correspondent Rachana Pradhan appeared on WAMU’s Health Hub on Dec. 10 to explain why LGBTQ+ health advocates worry this change could hurt public health and the care patients receive.

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Weiser spoke with 麻豆女优 Health News on the evening before World AIDS Day, which the U.S. government, for the first time since 1988, didn’t acknowledge this year. That was only the latest blow to efforts to combat HIV. The Trump administration has to provide lifesaving HIV care abroad, withheld money to prevent and treat HIV in the U.S., and fired HIV experts at the Centers for Disease Control and Prevention.

Weiser was fired from the CDC during mass layoffs in April, was rehired in June, and then resigned. He continues to treat patients at Grady Memorial Hospital in Atlanta. In November, he published an against complying with presidential orders to censor data about transgender people.

The following conversation has been condensed and edited for clarity.

LISTEN: Former CDC official John Weiser speaks with 麻豆女优 Health News correspondent Amy听Maxmen听about his resignation from the agency and why听he thinks complying with听President Donald Trump’s orders to erase transgender people is bad for science and society.听

In the first weeks of his presidency, Donald Trump issued with implications for HIV programs. One directed federal employees to exclude gender identities that didn’t correspond to a person’s biological sex assigned at birth.

On how this played out at the CDC:

We were told to scrub any mention of gender or transgender people from dozens of research papers and surveillance reports that had already been published or were going to be published, and to stop collecting information from participants about their gender identity. For example, we had to recalculate our numbers on HIV among men who have sex with men, or MSM, a category that the CDC changed to “males who have sex with males.”

The CDC had no director at the time. The order came from on high. And there was no discussion about whether we wanted to comply with the directive.

On how this directive has affected his research:

Using data from the Medical Monitoring Project, we found that people with HIV who misused opioids were more likely to engage in behaviors that could pass on HIV to another person 鈥� through unprotected sex or shared injection. And we found that very few people who misused opioids were receiving treatments for substance misuse. This information could have been useful to change clinical practice and boost funding to treat people with HIV who misuse opioids.

We were getting ready to publish this study, but when I put the paper through CDC’s clearance process, I was told to remove data about the prevalence of opioid misuse among transgender people.

I thought carefully about that, and I decided not to do that, because it’s bad science to suppress data for ideologic reasons and because erasing people from the story harms actual people. I thought about my transgender patients and how I would face them, and what I would say to them while I’m sitting with them in the exam room, knowing that I had erased their existence from CDC.

I withdrew the paper. It remains unpublished.

On how removing data harms people:

Purging data about transgender people has the effect of erasing them from the real world, pretending that they don’t exist. This group of people is heavily affected by HIV, and this type of information informs improvements in treatment. My transgender patients struggle with poverty, with unstable housing, with food insecurity, with mental health disorders, with substance misuse, and face a huge amount of stigma and discrimination in their daily lives.

My transgender patients are trying to get by, day by day. They’re trying to survive. I think it’s important to realize that somebody who is transgender needs to feel comfortable in their own body to be healthy 鈥� and denying them recognition compounds their challenges.

After the executive order came down, one of my patients said she felt even more afraid of being in public and not passing, and so she was considering having additional surgical treatment to feel safer. Her concern was not about politics. It was about survival.

On why the CDC went along with orders to remove transgender data:

I think the hope was that by complying with the directive, other work at the CDC would be spared. And unfortunately, that hasn’t proved to be the case. Funding for the Medical Monitoring Project was terminated after 20 years, and the concern within CDC is that the president will eliminate all HIV prevention and surveillance funding.

One of my concerns while there was that if it’s OK to comply with a directive to remove information about gender, what if the next demand is that we don’t report about people who emigrated from other countries, or on people who are experiencing homelessness? What if there’s a directive to suppress data about a particular racial or ethnic group that’s unpopular? How far would we go?

Some HIV clinics and organizations have considered curtailing their work with transgender people and undocumented immigrants, or on equity initiatives, because they fear the loss of federal funds.

His advice on these decisions:

People making these decisions are in a really tough spot. They want to do what’s best for their programs. They want to do what’s best for their employees. They want to do what’s best for the people they’re charged with taking care of. Those are careful decisions that need to be made weighing all of the considerations. What I want these leaders to do is also consider how a decision to essentially throw one group of people under the bus undermines scientific integrity and harms everyone.

鈥夾nd I think that it’s also necessary for the rise of autocracy to go along, to compromise, to acquiesce. While all of this was going on, I heard an interview with M. Gessen, who is a Russian American journalist who writes about the rise of autocracy. Gessen explained that decisions to go along are not made because people are unethical or heartless. They’re rational choices. They’re made in order to protect something that’s important 鈥� institutions, families, jobs 鈥� even if it means sacrificing principles. Gessen’s point is that this gradual process of compromising ultimately is what solidifies an autocrat’s power.

On why he resigned from the CDC:

As a physician working at the CDC, numbers have always described individual people, people whose suffering I witness. When you know somebody, they’re no longer just a concept that you make a judgment about.

I realized that I could do more good by spending more time with my patients than I could working for the CDC under this administration.

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Dunnebacke lay still atop a folding table that was dressed as a bed, complaining that her legs hurt. Registered nurse Ana Kanellos, rolling up two small white towels, demonstrated how to elevate her ankles to ease the pain.

“鈥奙om’s legs are always swollen? Raise ’em up,” Kanellos said.

About 20 New Orleans residents listened intently, eager to learn more about how to care for loved ones at home when they’re nearing the end of their lives. Attendee Alix Vargas said she used to be terrified of dying. But about three years ago, a close cousin’s death led her to attend group writing workshops, helping her embrace her grief and conquer her fear.

“鈥奍’m feeling very called towards this work,” she said. “It’s definitely knowledge that I wanted to obtain and expand my mind in that way. And this is also something that we’re all going to encounter in our lives.”

The workshop made her think about a neighbor whose mother has dementia.

“鈥奍 was immediately thinking, 鈥極K, there’s someone in my immediate orbit that is experiencing this,’” Vargas recalled. 鈥�“Here’s a practical way to put the mutual aid in use.’”

Demand for home health care, including at-home hospice care, has skyrocketed since the onset of the covid pandemic, as has the number of family caregivers. An estimated 63 million people in the U.S. 鈥� nearly a quarter of all American adults 鈥� provided care over the previous year to another person with a medical condition or disability, usually another adult, according to by AARP and the National Alliance for Caregiving. In the past 10 years, about 20 million more people have served as caregivers.

With nearly 1 in 5 Americans expected to be 65 or older by 2030, health care experts predict the demand for at-home caregivers will continue to rise. Online resources for end-of-life care are widely available, but hands-on training to prepare people to become caregivers is not, and it can be expensive. Yet untrained family members-turned-caregivers are taking on nursing and medical tasks.

Donald Trump promised more support for caregivers during his 2024 campaign, including a pledge to create new tax credits for those caring for family members. He endorsed a bill reintroduced in Congress this year that would allow family caregivers to receive tax credits of up to $5,000, but the legislation hasn’t moved forward.

Meanwhile, the Medicaid cuts expected from Republicans’ One Big Beautiful Bill Act, which President Trump signed in July, could prompt states looking to offset their added expenses to reconsider participating in optional state Medicaid programs, such as the one that helps pay for . That would threaten to make dying at home even more unaffordable for low-income families, said advocates and researchers.

Advocates like Osha Towers are trying to help caregivers navigate the uncertainty. Towers leads LGBTQ+ engagement at , a national organization that focuses on improving end-of-life care, preparation, and education.

“It is certainly very scary, but what we know we can do right now is be able to just show up for all individuals to make sure that they know what they need to be prepared for,” Towers said.

In New Orleans, a , which focuses on supporting family caregivers providing end-of-life and death care, is one of the organizations trying to help fill the knowledge gap. Wake put on the free, three-day September workshop where Dunnebacke, the group’s founder, pretended to be a dying patient. Such workshops are aimed at preparing attendees for what to expect when loved ones are dying and how to care for them, even without costly professional help. Full-time at-home care is rare.

“You don’t have to have any special training to do this work,” Dunnebacke said. “You just need some skills and some supports to make that happen.”

In some ways, the evolution of end-of-life care in the U.S. over the past century has come full circle. It was only starting in the 1960s that people shifted from dying at home to dying in hospitals, nursing homes, and hospice facilities.

Such institutions can provide immediate advanced medical support and palliative care for patients, but they often lack the human connection that home care provides, said Laurie Dietrich, Wake’s programs manager.

Now, more people want to die in their homes, among family, but with the support and technology that comes with modern medical facilities.

In the past decade, death doulas 鈥� who support the nonmedical and emotional needs of the dying and their loved ones 鈥� have grown in popularity to help guide people through the dying process, helping to fill that gap. Douglas Simpson, executive director of the , said his organization recognizes the lack of resources for death care, so it is training doulas to be community educators. He hopes doulas can be especially useful in rural communities and lead conversations about dying.

“Making people more open, more comfortable about talking about death and considering their mortality,” Simpson said.

Death doula training varies depending on the organizer, but Simpson’s group focuses on teaching attendees about the dying process, how to maintain the autonomy of the dying person, and how to be aware of how they show up to a job and take care of themselves while caring for others.

Some people who attended Wake’s workshop had also attended some form of death doula training in the past. After Nicole Washington’s mother was killed in 2023, she considered becoming a death doula. But she thought the doula training, which can cost $800 to $3,000, was clinical and impersonal, as opposed to Wake’s community-based approach.

“I feel very energized, very uplifted,” Washington said. “It’s also really nice to be in a space with people who are familiar with death and grief.”

Ochsner Health’s Susan Nelson, who has worked as a geriatrician for 25 years, said there is a need for more specialized programs to train and prepare caregivers, like Wake’s.

“Learning caregiving skills is probably, unfortunately, more trial by fire,” Nelson said.

Compassion & Choices is another organization trying to educate caregivers. Towers said the group’s training ranges from advanced planning to acting as a health care proxy to caring for the dying.

“We’ve gone to a place in our country where we’re so removed from end-of-life care in a way that we didn’t used to be,” Towers said.

Towers said the movement to care for people at home and give them community support has roots in the AIDS epidemic, when some doctors for AIDS patients. Friends, especially in the , started coordinating food delivery, visits, bedside vigils, and even touch circles, where patients could receive comforting forms of touch such as hand-holding to ease pain and feelings of isolation.

“I like to look at it as a blueprint for what we can get back to doing now, which is again just prioritizing community care,” Towers said.

This article was produced in collaboration with . Verite News reporter Christiana Botic contributed to this report.

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Médicos y activistas por los derechos de las personas trans aseguran que esta modificación dificultará enormemente la comprensión de los diagnósticos y las tendencias del cáncer en esta población.

Algunos estudios han demostrado que entre las personas transgénero es más frecuente el consumo de tabaco y menos habitual los controles de detección del cáncer, factores que podrían aumentar su riesgo de desarrollar la enfermedad.

Investigadores del cáncer explicaron que este cambio es consecuencia de que la administración Trump solo reconoce los sexos “masculino” y “femenino”.

Los científicos opinan que la medida impactará a todos los registros de cáncer del país 鈥攅n cada estado y territorio鈥� ya que todos reciben fondos federales.

A partir de 2026, los registros financiados por los Centros para el Control y Prevención de Enfermedades (CDC) y el Instituto Nacional del Cáncer (NCI) . Y las agencias federales de salud solo recibirán datos de pacientes clasificados de esa manera.

Actualmente, los registros si el sexo de un paciente de cáncer es “hombre”, “mujer”, “otro”, ofrece diferentes opciones para “transexual”, y si el sexo no ha sido indicado o se desconoce.

En enero, el presidente Donald Trump firmó una en la que se estableció que el gobierno federal solo reconocerá los sexos masculino y femenino. Autoridades de los registros oncológicos informaron que se les ordenó modificar la manera en que recolectan los datos de pacientes con cáncer.

“En Estados Unidos, a los que estamos recibiendo fondos federales prácticamente no nos dieron otra opción”, le dijo a 麻豆女优 Health News Eric Durbin, director del Kentucky Cancer Registry y presidente de la North American Association of Central Cancer Registries (NAACCR). Esta institución, que recibe dinero federal, establece los estándares para informar casos de cáncer a lo largo de Estados Unidos y Canadá.

Según la nueva normativa, se deberá clasificar a los pacientes como “sexo desconocido” cuando esté documentado como algo distinto a masculino o femenino (por ejemplo, no binario o transexual) y no haya información adicional sobre el sexo asignado al nacer.

Una visión incompleta

Investigadores señalaron que actualmente no se cuenta con datos poblacionales de calidad sobre la incidencia de cáncer en las personas transgénero. Si bien se estaban logrando avances importantes para mejorar esta información, ese trabajo ahora corre el riesgo de quedar en la nada.

“En lo que respecta al cáncer y las desigualdades en torno a esta enfermedad, se pueden usar los registros de cáncer para ver dónde se encuentra la mayor contaminación atmosférica, ya que las tasas de cáncer de pulmón son más altas en esas zonas. Se puede observar el impacto del almacenamiento de residuos nucleares debido a los tipos de cáncer que son más frecuentes en esos códigos postales, en esas zonas del país”, explicó Shannon Kozlovich, miembro del comité ejecutivo del California Dialogue on Cancer.

“Cuantos más sectores de la población dejemos fuera de esta base de datos, menos sabremos qué está ocurriendo”, agregó. “Y eso no significa que no esté ocurriendo”.

Durante décadas, los registros de cáncer fueron la herramienta de vigilancia más completa en el país para entender la incidencia del cáncer, las tasas de supervivencia y para identificar tendencias preocupantes.

Cada año, hospitales, laboratorios de patología y otros centros de salud notifican los casos de cáncer a registros regionales y estatales. Los datos compilados documentan las tasas de incidencia y mortalidad por región, raza, sexo y edad.

Dos programas federales son las principales fuentes de estadísticas sobre cáncer, con información sobre decenas de millones de casos. El National Program of Cancer Registries de los CDC financia organizaciones en 46 estados, el Distrito de Columbia, Puerto Rico, las Islas Vírgenes y territorios del Pacífico estadounidense. Su información representa del país.

Por su parte, el programa de Vigilancia, Epidemiología y Resultados Finales del Instituto Nacional del Cáncer, conocido como SEER, recopila y publica datos de registros que cubren del país.

La información que publican los registros de cáncer ha llevado a modificaciones en el tratamiento y en la prevención, además de impulsar otras políticas diseñadas para reducir las tasas de diagnóstico y de mortalidad.

Por ejemplo, esos datos permitieron identificar el entre personas . Como resultado, ahora las guías clínicas en Estados Unidos que los adultos comiencen los chequeos a los 45 años en vez de a los 50.

Varios estados también han aprobado sus propias medidas. Lara Anton, vocera del Departamento de Servicios de Salud de Texas, dijo que en 2018 los epidemiólogos del Registro Oncológico de Texas descubrieron que el estado tenía las tasas más altas del país de carcinoma hepatocelular, un tipo de cáncer de hígado más común en hombres que en mujeres.

A raíz de esto, el Instituto de Prevención e Investigación del Cáncer de Texas para revertir el aumento de casos. El Registro Oncológico de Texas se unió a SEER en 2021.

“Cuando se ingresa a un paciente con cáncer en un registro, lo seguimos durante el resto de su vida. Porque necesitamos saber si las personas sobreviven según el tipo y la etapa del cáncer”, señaló Durbin. “Eso es crucial para la formulación de políticas públicas”.

La NAACCR imparte los estándares nacionales que definen qué tipo de datos se deben recopilar con cada diagnóstico. Estos estándares son desarrollados junto a los CDC, el Instituto Nacional del Cáncer y otras organizaciones.

Según Durbin, los registros recopilan más de 700 datos por paciente, entre ellos información demográfica, diagnóstico, tratamiento y supervivencia. Los registros financiados por los CDC y el NCI deben especificar el sexo del paciente.

Las definiciones de NAACCR y sus estándares de datos garantizan una recolección uniforme en todo el país. “Todos seguimos esencialmente los estándares que desarrolla NAACCR”, dijo Durbin. Aunque los registros pueden agregar datos específicos a nivel estatal, deben seguir estos lineamientos cuando transfieren la información al gobierno federal.

En un comunicado enviado por correo electrónico, Andrew Nixon, vocero del Departamento de Salud y Servicios Humanos, afirmó: “HHS está utilizando la ciencia biológica para guiar sus políticas, no agendas ideológicas como lo hizo la administración Biden”.

Un retroceso

NAACCR publica periódicamente actualizaciones de sus lineamientos. Pero, según Kozlovich, el cambio en la categoría de “sexo” que eliminará las opciones transgénero a partir de 2026 fue una decisión de emergencia provocada por las políticas de la administración Trump.

Kozlovich formó parte de un grupo que impulsó la inclusión de datos sobre sexo y género como variables distintas en la recolección de información oncológica.

Según un realizado por el Williams Institute de la UCLA School of Law en Los Ángeles (UCLA), 2,8 millones de personas mayores de 13 años se identifican como transgénero en el país.

Científicos y defensores de los derechos de las personas trans manifestaron en entrevistas que hay señales preocupantes de que esta población podría tener mayor riesgo de desarrollar cáncer o enfrentar peores condiciones de salud en comparación con otras.

“Sin evidencia sobre nuestras desigualdades en salud, no hay ningún incentivo para corregirlas”, afirmó Scout, director ejecutivo de la LGBTQIA+ Cancer Network.

Un estudio publicado en 2022 concluyó que las personas transgénero y de género diverso eran entre más propensas que las personas cisgénero a consumir cigarrillos, cigarrillos electrónicos o habanos. El consumo de tabaco es una de las principales causas de cáncer y de muerte por cáncer.

Un publicado en 2019 concluyó que los pacientes trans tenían menos probabilidades de recibir los controles recomendados para detectar cáncer de mama, de cuello uterino y colorrectal. Y un realizado por investigadores de la Stanford Medicine encontró que los pacientes LGBTQ+ tenían casi tres veces más probabilidades de experimentar una recurrencia del cáncer de mama en comparación con personas cisgénero heterosexuales.

Scarlett Lin Gomez, epidemióloga de la Universidad de California-San Francisco y directora del Greater Bay Area Cancer Registry explicó que desde hace al menos 10 años el Instituto Nacional del Cáncer ha buscado mejorar su capacidad para monitorear la carga de cáncer en poblaciones con diferentes orientaciones sexuales e identidades de género. Los registros oncológicos son un punto de partida lógico, explicó.

“Se había avanzado lenta pero correctamente”, señaló Gómez. “Pero ahora, desde mi punto de vista, hemos retrocedido completamente”.

La decisión de no recopilar información sobre la identidad trans de los pacientes con cáncer es solo uno de los muchos cambios que han enfrentado los registros bajo la administración Trump, según científicos encargados de tareas de vigilancia y agencias estatales de salud.

Una orden del HHS para reducir gastos en contratos provocó recortes en el financiamiento a registros del programa SEER del NCI. Aunque los fondos de los CDC para registros no se han reducido, el presupuesto que propuso la Casa Blanca para el año fiscal 2026 plantea eliminar el financiamiento del National Program of Cancer Registries.

Otras acciones de la administración Trump contra personas trans incluyen la cancelación de subvenciones para investigaciones sobre salud LGBTQ+, el desmantelamiento de la oficina de salud para minorías sexuales y de género de los Institutos Nacionales de Salud, y la suspensión de servicios especializados para jóvenes LGBTQ+ en la línea nacional de prevención del suicidio 988.

Sin datos, los investigadores no pueden justificar el financiamiento de investigaciones que puedan beneficiar a pacientes trans, lamentó Gomez. “Es una forma de borrar su existencia”.

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Scientists and advocates for trans rights say the change will make it much harder to understand cancer diagnoses and trends among the trans population. Certain studies have shown that transgender people are more likely to use tobacco products or less likely to receive routine cancer screenings 鈥� factors that could put them at higher risk of disease.

The change is a consequence of Trump administration policies recognizing only “male” and “female” sexes, according to cancer researchers.

Scientists said the change will affect all cancer registries, in every state and territory, because they receive federal funding. Starting in 2026, registries funded through the Centers for Disease Control and Prevention and the National Cancer Institute as male, female, or not stated/unknown. And federal health agencies will receive data only on cancer patients classified that way.

Registries whether a cancer patient’s sex is “male,” “female,” “other,” various options for “transsexual,” or that the patient’s sex is not stated or unknown.

President Donald Trump in January issued an stating that the government would recognize only male and female sexes. Cancer registry officials said the federal government directed them to revise how they collect data on cancer patients.

“In the U.S., if you’re receiving federal money, then we, essentially, we weren’t given any choice,” Eric Durbin, director of the Kentucky Cancer Registry and president of the North American Association of Central Cancer Registries, told 麻豆女优 Health News. NAACCR, which receives federal funds, maintains cancer reporting standards across the U.S. and Canada.

Officials will need to classify patients’ sex as unknown when a “patient’s sex is documented as other than male or female (e.g., non-binary, transsexual), and there is no additional information about sex assigned at birth,” the new standard says.

Missing the Big Picture

Researchers said they do not have high-quality population-level data on cancer incidence in transgender people but had been making inroads at improving it 鈥� work now at risk of being undone.

“When it comes to cancer and inequities around cancer, you can use the cancer registries to see where the dirtiest air pollution is, because lung cancer rates are higher in those areas. You can see the impact of nuclear waste storage because of the types of cancers that are higher in those ZIP codes, in those areas of the country,” said Shannon Kozlovich, who is on the executive committee of the California Dialogue on Cancer.

“The more parts of our population that we are excluding from this dataset means that we are not going to know what’s happening,” she said. “And that doesn’t mean that it’s not happening.”

For decades, cancer registries have been the most comprehensive U.S. surveillance tool for understanding cancer incidence and survival rates and identifying troubling disease trends. Each year, cancer cases are reported by hospitals, pathology labs, and other health facilities into regional and statewide cancer registries. The compiled data documents cancer and mortality rates among regions, races, sexes, and age groups.

Two federal programs serve as the top authorities on cancer statistics, with information on tens of millions of cases. The CDC’s National Program of Cancer Registries provides funding to organizations in 46 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Island territories. Its data represents . The National Cancer Institute’s Surveillance, Epidemiology, and End Results program, known as SEER, collects and publishes data from registries covering the U.S. population.

The information published by cancer registries has led to changes in treatment and 听prevention, and the enactment of other policies designed to reduce diagnosis rates and mortality.

For example, data collected by cancer registries was essential in identifying among people . As a result, U.S. guidelines that adults start screenings at age 45 rather than 50.

States have enacted their own measures. Lara Anton, spokesperson for the Texas Department of State Health Services, said epidemiologists with the Texas Cancer Registry in 2018 found that the state had the nation’s highest incidence rates of hepatocellular carcinoma, a liver cancer more common in men than women. aimed at reversing rising rates of liver cancer. The Texas Cancer Registry joined SEER in 2021.

“Once a cancer patient is entered into a cancer registry, we follow those patients for the rest of their lives. Because we really need to know, do patients survive for different types of cancer and different stages of cancer?” Durbin said. “That’s incredibly important for public policies.”

The North American Association of Central Cancer Registries maintains national standards outlining what kind of data registries collect for each diagnosis. It develops the list in partnership with the CDC, the National Cancer Institute, and other organizations.

For any given patient, under NAACCR’s standards, Durbin said, registries collect more than 700 pieces of information, including demographics, diagnosis, treatment, and length of survival. CDC and NCI-funded registries must specify the sex of each patient.

The NAACCR definitions and accompanying data standards are designed to ensure that registries collect case data uniformly. “Everyone essentially follows the standards” that NAACCR develops, Durbin said. Although registries can collect state-specific information, researchers said they need to follow those standards when sending cancer data to the federal government.

In an emailed statement, Department of Health and Human Services spokesperson Andrew Nixon said, “HHS is using biological science to guide policy, not ideological agendas that the Biden administration perpetrated.”

鈥楤ackwards’ Progress

NAACCR routinely publishes updated guidelines. But the change to the “sex” category to remove transgender options in 2026 was an emergency move due to Trump administration policies, Kozlovich said. She was among a group that had pushed for changes in cancer data collection to account for sex and gender identity as separate data points.

According to an by the Williams Institute at the UCLA School of Law, 2.8 million people age 13 and older identify as transgender.

Scientists and trans rights advocates said in interviews that there are troubling signs that may make transgender people more likely to develop cancer or experience worse health outcomes than others.

“Without evidence of our health disparities, you take away any impetus to fix them,” said Scout, executive director of the LGBTQIA+ Cancer Network.

A study published in 2022 found that transgender and gender-diverse populations were as likely as cisgender people to report active use of cigarettes, e-cigarettes, or cigars. Tobacco use is a leading cause of cancer and death from cancer.

A concluded in 2019 that transgender patients were less likely to receive recommended screenings for breast, cervical, and colorectal cancers. And a from researchers at Stanford Medicine found that LGBTQ+ patients were nearly three times as likely to experience breast cancer recurrence as cisgender heterosexual people.

Scarlett Lin Gomez, an epidemiologist at the University of California-San Francisco and the director of the Greater Bay Area Cancer Registry, said that for at least 10 years the NCI had been interested in improving its ability to monitor cancer burden across patient populations with different sexual orientations and gender identities. Cancer registries are a logical place to start because that is what they’re set up to do, she said.

There’s been “slow but good progress,” Gomez said. “But now we’ve completely, personally, I think, regressed backwards.”

The decision not to capture transgender identity in cancer patients is just one change registries have confronted under the Trump administration, according to scientists leading surveillance efforts and state health agencies. An HHS mandate to reduce spending on contracts led to funding cuts for cancer registries in NCI’s SEER program. Scientists said CDC funds for registries haven’t been cut; however, the White House’s proposed fiscal 2026 budget aims to eliminate funding for the National Program of Cancer Registries.

Among the Trump administration’s other actions targeting trans people are canceling research grants for studies on LGBTQ+ health, dismantling the National Institutes of Health’s office for sexual and gender minority health, and stopping specialized services for LGBTQ+ youth on the 988 national suicide prevention hotline.

Without data, researchers can’t make a case to fund research that may help trans patients, Gomez said. “It’s erasure.”

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