Ocurrió hace más de una década, pero el momento permanece en su memoria.

Sara Stewart conversaba con su madre, Barbara Cole, entonces de 86 años, en el comedor de su casa de Bar Harbor, en Maine. Stewart, abogada tenía en ese momento 59 años y estaba haciendo una de sus largas visitas desde fuera del estado.

Dos o tres años antes, Cole había comenzado a mostrar signos preocupantes de demencia, probablemente debido a una serie de pequeños derrames cerebrales. “No quería sacarla de su casa”, contó Stewart.

Así que, con un batallón de ayudantes —una empleada doméstica, visitas familiares frecuentes, un vecino atento y un servicio de entrega de comidas—, Cole pudo quedarse en la casa que ella y su difunto esposo habían construido 30 años atrás.

Se las arreglaba bien y solía parecer alegre y conversadora. Pero esta conversación en 2014 tuvo un dramático giro. “Me dijo: ‘¿De dónde nos conocemos? ¿de la escuela?’”, recordó su hija y primogénita. “Sentí como si me hubieran pateado”.

Stewart recuerda haber pensado: “En el curso natural de las cosas, se suponía que morirías antes que yo. Pero nunca se suponía que olvidaras quién soy”. Más tarde, sola, lloró.

Las personas con demencia avanzada suelen no reconocer a sus seres queridos, a sus parejas, hijos y hermanos. Para cuando Stewart y su hermano menor trasladaron a Cole a un centro de atención para la memoria un año después, la mujer ya había perdido casi por completo la capacidad de recordar sus nombres o vínculos.

“Es bastante común en las últimas etapas” de la enfermedad, dijo Alison Lynn, directora de trabajo social del Penn Memory Center, quien ha dirigido grupos de apoyo para cuidadores de personas con demencia por una década.

Ha escuchado muchas versiones de este relato, un momento descrito con dolor, ira, frustración, alivio o una combinación de estos sentimientos.

Estos cuidadores “ven muchas pérdidas, revierten hitos, y este es uno de esos momentos, un cambio fundamental” en una relación cercana, dijo. “Puede llevar a las personas a una crisis existencial”.

Es difícil determinar qué saben o sienten las personas con demencia —una categoría que incluye la enfermedad de Alzheimer y otros trastornos cognitivos—. “No tenemos forma de preguntarle a la persona ni de ver una resonancia magnética”, señaló Lynn. “Todo es pura deducción”.

Pero los investigadores están comenzando a investigar cómo reaccionan los familiares cuando un ser querido ya parece no reconocerlos. Un estudio cualitativo publicado recientemente en la revista Dementia analizó entrevistas en profundidad con hijos adultos que cuidaban de madres con demencia que, al menos en una ocasión, no los habían reconocido.

“Es muy desestabilizador”, dijo Kristie Wood, psicóloga clínica investigadora del Campus Médico Anschutz de la Universidad de Colorado y coautora del estudio. “El reconocimiento reafirma la identidad, y cuando desaparece, las personas sienten que han perdido parte de sí mismas”.

Aunque comprendían que no implicaba un rechazo sino un síntoma de la enfermedad de sus madres, algunos hijos adultos se culpaban a sí mismos, agregó.

“Se cuestionaban su papel. ‘¿Acaso no era lo suficientemente importante como para que me recuerde?'”, dijo Wood. Esto puede hacer que se alejen o que sus visitas se vuelvan menos frecuentes.

Pauline Boss, la terapeuta familiar que desarrolló hace décadas la teoría de la “pérdida ambigua”, señala que puede implicar ausencia física, como cuando un soldado desaparece en combate, o ausencia psicológica, incluyendo la falta de reconocimiento debido a la demencia.

La sociedad no tiene forma de reconocer la transición cuando “una persona está físicamente presente pero psicológicamente ausente”, dijo Boss. “No hay certificado de defunción, ni ritual donde amigos y vecinos vengan a sentarse contigo y te consuelen”.

“La gente se siente culpable si llora a alguien que aún está vivo”, continuó. “Pero si bien no es lo mismo que una muerte confirmada, es una pérdida real, que ocurre una y otra vez”.

La falta de reconocimiento adopta diferentes formas. Algunos familiares informan que, aunque un ser querido con demencia ya no puede recordar su nombre ni su parentesco exacto, todavía parecen felices de verlo.

“En un sentido narrativo, ya no sabe quién soy, que yo era su hija Janet”, contó Janet Keller, de 69 años, actriz de Port Townsend, Washington, hablando de su difunta madre, diagnosticada con Alzheimer en un correo electrónico. “Pero siempre supo que yo era alguien a quien apreciaba y con quien quería reír y a quien le agarraba la mano”.

A los cuidadores les reconforta seguir sintiendo una conexión. Sin embargo, una de las participantes en el estudio sobre demencia informó que ahora sentía a su madre como una extrañas, y que la relación ya no le proporcionaba ninguna recompensa emocional.

“Era como si estuviera visitando al cartero”, le dijo al entrevistador.

Larry Levine, de 67 años, administrador de atención médica jubilado de Rockville, Maryland, observó cómo la capacidad de su esposo para reconocerlo cambiaba de forma impredecible.

Levine y Arthur Windreich, pareja desde hacía 43 años, se habían casado en 2010, cuando Washington, DC, legalizó el matrimonio entre personas del mismo sexo. Al año siguiente, Windreich tuvo un diagnóstico de Alzheimer de inicio temprano.

Levine se convirtió en su cuidador hasta su fallecimiento a los 70 años, a finales de 2023.

“Su condición era zigzagueante”, dijo Levine. Windreich se había mudado a una unidad de cuidados de la memoria. “Un día, me llamaba ‘el hombre amable que viene de visita'”, dijo Levine. “Al día siguiente, me llamaba por mi nombre”.

Incluso en sus últimos años, cuando, como muchos pacientes con demencia, Windreich se volvió prácticamente silencioso, “había cierto reconocimiento”, dijo su esposo. “A veces se le veía en los ojos, ese brillo en lugar de la expresión vacía que solía tener”.

Sin embargo otras veces “no había ningún afecto”. Levine a menudo salía del centro llorando.

Buscó la ayuda de su terapeuta y sus hermanas, y recientemente se unió a un grupo de apoyo para cuidadores LGBTQ+ de personas con demencia, a pesar que su esposo ya había fallecido.

Los grupos de apoyo, en persona o por internet, “son medicina para el cuidador”, dijo Boss. “Es importante no aislarse”.

Lynn anima a los participantes de sus grupos a que también encuentren rituales personales para conmemorar la pérdida de reconocimiento y otros hitos que marcan un antes y un después. “Quizás enciendan una vela. Quizás recen una oración”, dijo.

Alguien que se sienta en shivá, parte del ritual de duelo judío, podría reunir a un pequeño grupo de amigos o familiares para recordar y compartir historias, aunque el ser querido con demencia no haya fallecido.

“Que alguien más participe puede ser muy reconfortante”, dijo Lynn. “Dice: ‘Veo el dolor que estás sintiendo'”.

De vez en cuando, la niebla de la demencia parece disiparse brevemente.

Investigadores de Penn y de otros centros han señalado un fenómeno sorprendente llamado “lucidez paradójica”. Alguien con demencia grave, luego de meses o años sin comunicarse, recupera repentinamente la lucidez y puede inventar un nombre, decir algunas palabras apropiadas, contar un chiste, hacer contacto visual o cantar con la radio.

Aunque comunes, estos episodios suelen durar solo unos segundos y no significan un cambio real en el deterioro de la persona. Los esfuerzos por recrear las experiencias tienden a fracasar.

“Es un instante”, dijo Lynn. Pero los cuidadores suelen reaccionar con sorpresa y alegría; algunos interpretan el episodio como evidencia de que, a pesar de la profundización de la demencia, no se les olvida del todo.

Stewart experimentó un pequeño incidente como esos unos meses antes de la muerte de su madre. Estaba en el apartamento de su madre cuando una enfermera le pidió que la acompañara al final del pasillo.

“Al salir de la habitación, mi madre me llamó por mi nombre”, dijo. Aunque Cole solía parecer contenta de verla, “no había usado mi nombre desde que tengo memoria”.

No volvió a ocurrir, pero eso no importó. “Fue maravilloso”, dijo Stewart.

La serie de columnas The New Old Age se producen a través de una alianza con The New York Times.

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

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North Chicago, Ill.: AbbVie has announced submission of a Biologics License Application (BLA) to the U.S. Food and Drug Administration (FDA) for trenibotulinumtoxinE (TrenibotE) for the treatment of moderate to severe glabellar lines.

"The submission provides evidence of TrenibotE's differentiated clinical profile to offer patients an opportunity to experience a faster onset and shorter treatment duration as an introduction to a neurotoxin," said Darin Messina, Ph.D., senior vice president, aesthetics R&D, AbbVie. "TrenibotE has the potential to transform the aesthetic toxin treatment landscape for new patients interested in the facial aesthetics category."

"New patients wanting to experience the aesthetic benefits of a neurotoxin cite "fear of looking unnatural" as a barrier to initiating neurotoxin use for aesthetic indications. If approved, TrenibotE will be the first serotype E neurotoxin offering patients the opportunity to experience a neurotoxin with rapid clinical effect for a shorter duration of time as a trial before getting treatment with BOTOX Cosmetic," the Cmpany stated in a recent releae.

The BLA submission is supported by data from over 2,100 patients treated with TrenibotE in the clinical program, which included two pivotal Phase 3 clinical studies evaluating TrenibotE for the treatment of moderate to severe glabellar lines (M21-500 and M21-508) and a Phase 3 open-label safety study (M21-509). All primary and secondary endpoints of the Phase 3 studies were met, with a rapid onset of action as early as 8 hours after drug administration (the earliest assessment time) and observed efficacy duration for 2-3 weeks. Treatment-emergent adverse events for TrenibotE were similar to placebo, both as a single treatment and up to three consecutive treatments. Topline data from the Phase 3 pivotal studies were previously shared.

"Concern about an unnatural outcome remains a significant barrier for many patients considering medical aesthetics treatment," said Cheryl Burgess, MD, FAAD, lead clinical investigator for one of the Phase 3 studies. "Treatment with a product offering rapid onset of effect and short duration of action could help address this barrier and empower confidence for patients exploring their aesthetics treatment journey with innovation from the makers of BOTOX Cosmetic."

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

Congress returns from spring break next week and will get to work crafting a bill that would cut taxes and boost immigration enforcement — but that also could cut at least $880 billion over the next decade from a pool of funding that includes Medicaid. Some Republicans, however, are starting to question the political wisdom of making such large cuts to a program that provides health coverage to so many of their constituents.

Meanwhile, the Supreme Court heard arguments in a case challenging the requirement that most private insurance cover certain preventive services with no out-of-pocket cost for patients.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories.

Tami Luhby
CNN

@Luhby

Read Tami's stories.

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Among the takeaways from this week’s episode:

• On the hunt for ways to pay for an extension of President Donald Trump’s tax cuts, many congressional Republicans are choosing their words carefully as they describe potential cuts to Medicaid — cuts that, considering heavy reliance on the program, especially in red states, could be politically unpopular.
• Amid the buzz over Medicaid cuts, another federal program that helps millions of Americans afford health care is also on the chopping block: the enhanced government subsidies introduced under the Biden administration that help pay premiums for Affordable Care Act plans. The subsidies expire at the end of this year, and Congress has yet to address extending them.
• One little-discussed option for achieving deep government spending cuts is Medicare Advantage, the private alternative to traditional Medicare that offers a variety of extra benefits for those over 65 — but that also costs the federal government a bundle. Even Mehmet Oz, the new head of the Centers for Medicare & Medicaid Services who once pushed Medicare Advantage plans as a TV personality, has cast sidelong glances at private insurers over how much they charge the government.
• And the Supreme Court heard oral arguments this week in a case that challenges the U.S. Preventive Services Task Force and could hold major implications for preventive care coverage nationwide. The justices’ questioning suggests the court could side with the government and preserve the task force’s authority — though that decision would also give more power over preventive care to Robert F. Kennedy Jr., the health and human services secretary.

Also this week, Rovner interviews KFF Health News’ Rae Ellen Bichell about her story on how care for transgender minors is changing in Colorado.

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

Julie Rovner: MedPage Today’s “Medical Journals Get Letters From DOJ,” by Kristina Fiore.

Sarah Karlin-Smith: The Tampa Bay Times’ “Countering DeSantis, $10M Hope Florida Donation Came From Medicaid, Draft Shows,” by Alexandra Glorioso and Lawrence Mower.

Tami Luhby: Stat’s “In Ireland, a Global Hub for the Pharma Industry, Trump Tariffs Are a Source of Deep Worry,” by Andrew Joseph.

Alice Miranda Ollstein: The New York Times’ “A Scientist Is Paid to Study Maple Syrup. He’s Also Paid to Promote It,” by Will Evans, Ellen Gabler, and Anjali Tsui.

Also mentioned in this week’s podcast:

• Stat’s “New England Journal of Medicine Gets Swept Up in U.S. Attorney Inquiry Into Alleged Bias,” by Anil Oza.
• KFF’s “KFF Tracking Poll on Health Information and Trust: The Public’s Views on Measles Outbreaks and Misinformation,” by Alex Montero, Grace Sparks, Julian Montalvo III, Ashley Kirzinger, and Liz Hamel.
• Bloomberg News’ “Food Industry Says There’s No Agreement With US Health Agency to Cut Dyes,” by Rachel Cohrs Zhang.
• Politico’s “RFK Jr. Eyes Reversing CDC’s Covid-19 Vaccine Recommendation for Children,” by Adam Cancryn.
• The New Yorker’s “The Cost of Defunding Harvard,” by Atul Gawande.
• The Wall Street Journal’s “Trump’s FDA Sends a Bullish Signal to Biotech,” by David Wainer

click to open the transcript

Transcript: Can Congress Reconcile Trump’s Wishes With Medicaid’s Needs?

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, April 24, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go. 

Today we are joined via videoconference by Alice Miranda Ollstein of Politico. 

Alice Miranda Ollstein: Hello. 

Rovner: Tami Luhby of CNN. 

Tami Luhby: Hello. 

Rovner: And Sarah Karlin-Smith of the Pink Sheet. 

Sarah Karlin-Smith: Hi, everybody. 

Rovner: Later in this episode, we’ll have my interview with my KFF Health News colleague Rae Ellen Bichell about her story about how care options are changing for trans kids in Colorado. But first, this week’s news. 

We’re going to start this week with Congress, which is still out, by the way, on spring break but does return on Monday. When members get back, it will be full speed ahead on that, quote, “big, beautiful” reconciliation bill, as the president likes to call it. But there are already some big storm clouds on the horizon, particularly when it comes to cutting Medicaid by $880 billion over the next decade. We would appear to have both moderate and conservative Republicans voicing doubts about those big Medicaid cuts. Or are they hiding behind semantics? Some of them are saying, Well, we don’t want to cut Medicaid, but it would be OK to have work requirements, which, as we’ve talked about many times, would cut a lot of people off of Medicaid. Alice, I see you nodding. 

Ollstein: Yes. So, people really need to pay attention to the specifics and press members on exactly what they mean. What do they mean by “cut”? Because some people don’t consider certain things a cut. Some people consider them efficiency or savings, or there’s a lot of different words we hear thrown around. And also, who is impacted? Who are they OK being impacted? There’s a lot of rhetoric sort of pitting the people on the Medicaid expansion, who are not parents, not people with disabilities, against people on traditional Medicaid in ways that some advocates find offensive or misleading. And so, I think when members say, I am against Medicaid cuts, I will not vote for Medicaid cuts, we really need to ask: What do you consider a cut? And who are you OK allowing to be impacted? 

Luhby: Yeah. Speaker Mike Johnson had a very telling comment on Fox News’ “Sunday Morning Futures” earlier this month where he said, “The president has made absolutely clear many times, as we have as well, that we’re going to protect Medicare, Social Security, Medicaid for people who are legally beneficiaries of those programs.” But then he goes on to say: “At the same time, we have to root out fraud, waste, and abuse. We have to eliminate on, for example, [on] Medicaid, people who are not actually eligible to be there. Able-bodied workers, for example, young men who should never be on the program at all.” 

Of course, these folks are legal beneficiaries or legal enrollees of the program thanks to the Affordable Care Act’s Medicaid expansion, which has been expanded in 40 states. But yeah as Alice was saying, they are using language like “protecting the vulnerable” or people who “really need the program.” 

The new CMS [Centers for Medicare & Medicaid Services] administrator, Mehmet Oz, has also used the same language. So he seems to be in step with them. But yeah I think we’re really going to see work requirements and other methods, such as potentially cutting the FMAP [Federal Medical Assistance Percentage] for the federal matching money for the expansion population, which is set at 90%, which is far higher than it is for the traditional population, which a lot of folks don’t think is fair. But if the federal government, if Congress, does cut that match for the expansion population, we will see a lot of people lose their coverage. 

Rovner: And for the six people that haven’t heard me say this a thousand times, there are 12 states that automatically end their Medicaid expansion if that 90% match gets cut, because they legit can’t afford to make up the difference. I’ve seen numbers this week. It’s like $620 billion that states would have to make up if Congress just reduces that 90% match to whatever the match is, because each state gets a slightly different match. Poor states get more money from the federal government. 

For a bill where the repeal of the Affordable Care Act is supposedly not on the table, it is certainly on the menu. One item that I don’t think gets talked about enough is the expiration of the expanded subsidies for ACA coverage that were implemented during the pandemic. That’s effectively doubled ACA marketplace enrollment to 24 million people. And if those subsidies end, which they do at the end of the year in the absence of congressional action — this isn’t like the Medicaid match where Congress would have to actively go in and lower it. This was temporary, and it expires unless it is renewed. If that happens, a lot of people, including a lot of Republican voters in a lot of very red states, are going to get hit with huge increases starting in 2026. 

Is that starting to dawn on some Republican members of the House and Senate? And might it change the odds that those subsidies are allowed to expire, which I think we all just assumed when [Donald] Trump got elected last November? 

Ollstein: You are not hearing as much about it as you are about Medicaid, even from Democrats. So I’m curious, when Congress returns from its recess, if that dynamic is going to change, because even advocacy groups right now are really hammering the Medicaid cuts issue in ads, TV ads, billboards, press conferences. And so I’m not sure if that same messaging will sort of expand to include the people who would be hit by these cost increases, if these supports expire, or if there will be different messaging, or if it’ll get lost in the current fight about Medicaid. 

Luhby: I was saying it had been discussed quite a bit earlier this year, but then it has completely fallen off the radar. One thing that some folks are also trying to put it now as is saying that it’s also part of the waste, fraud, and abuse, because they’re arguing that a lot of folks, because part of the expansion was that people under 150% of poverty could get pretty much no-cost, no-premium subsidy plans. They could get no-premium plans. And there have been, even during the Biden administration also, there was a lot of accusations that people were fraudulently deflating their income so that they would qualify for this, or brokers were trying to do that for them. 

Rovner: Yeah. I think the other thing, though, that where the enrollment has gone up the most are in the 10 states that didn’t expand Medicaid, because those are people who are now eligible for, as Tami was saying, these extremely low-cost and, in some cases, free plans, and those would be the people who would be either kicked off or see their costs go way up. I’ll be interested to see what happens when this starts to kind of penetrate the psyches of members as they go through this exercise, which, as I say, is just going to get underway. The big effort launches next week, so we will watch this closely. 

I wanted to talk about a related subject, Medicare Advantage. Congress could find a lot of savings in Medicare Advantage without cutting Medicaid and without cutting Medicare benefits, or at least directly cutting Medicare benefits. Instead, Medicare Advantage plans are set to get big increases next year, which has boosted insurance stock prices even as the broader stock market has kind of tanked. Yes, as we saw at the confirmation hearing last month for Mehmet Oz to lead the Centers for Medicare & Medicaid Services, some Republicans are actually questioning whether the federal government should continue to overpay those Medicare Advantage plans. Is the tide starting to turn maybe a little bit on this former Republican-favored program? 

Luhby: We’ll see. Actually, surprisingly, Dr. Oz, who long touted Medicare Advantage plans on his show and in social media, actually also during his confirmation hearing kind of cast a little shade on the insurers. And much of the increase that was announced recently was probably done, obviously, before he took office. So we’ll see what happens next year or during the course of this year. But at this point, it looks like the increase for 2026 is a step back from the Biden administration’s efforts to rein in the costs. 

Rovner: Yeah but they could, I mean, if they wanted to they could — people keep talking about Energy and Commerce, House Energy and Commerce Committee, and all the money that it needs to save, presumably from Medicaid. Well, Energy and Commerce also has jurisdiction over Medicare Advantage, and if they wanted to save some of that $880 billion, they could take it out of Medicare Advantage too if they really wanted to. I don’t know that I’m going to bet that they will. I’m just suggesting that they could. 

All right, well, turning to the Supreme Court, the justices heard oral arguments this week in the case challenging the Affordable Care Act’s no-cost coverage of preventive care. Tami, remind us what this case is about. And what would happen if the court found for the plaintiffs? 

Luhby: Well, so this is a case that’s been — it’s not as much of a threat to the Affordable Care Act as previous cases have been. This case surrounds the preventive care mandate in the ACA, which basically says that insurers have to provide no-cost care for a host of different services that are recommended by three different groups. The court case at the Supreme Court was focusing on one set of recommendations, specifically from the U.S. Preventive Services Task Force. And the plaintiffs have said basically that the task force isn’t constitutional and therefore its recommendations can’t be enforced and they shouldn’t have to provide these services at no cost. 

So it would have actually a big effect on a lot of services. The lower-court ruling was kind of strange in saying that it limited the advances to just those since the enactment of the Affordable Care Act in March of 2010 when the ACA was passed, but it would still affect a host, things like statins, increased cancer screenings for certain groups, and screenings for pregnant women. So there are a lot of things that this would really affect people. 

And so I listened to the oral arguments, and it was very interesting. A lot of the discussion — it didn’t really talk about the preventive care and what that would mean for folks — but there was a lot of discussion about whether the HHS [Department of Health and Human Services] secretary has oversight over this task force or whether the members are independent. And that’s really at the crux of the argument here. And so there were several notable comments from conservative justices, and it seemed generally that folks we spoke to as well as media coverage seemed to say that the Supreme Court was leaning in the direction of the government. And Justice Brett Kavanaugh said that members of the task force are removable at will by the HHS secretary. Truly independent agencies, he noted, typically have legal protections that require a president to show cause before firing members of a board. The— 

Rovner: Like the head of the Federal Reserve, she inserts. 

Luhby: Justice Amy Coney Barrett said, who’s another conservative, said that she described the challenger’s position as very maximalist. So it seems that potentially — we don’t know, of course — but potentially the government may prevail here. 

But interestingly, if that does happen, that will actually give HHS Secretary Robert F. Kennedy Jr. more power over preventive services requirements. And as we know, he has a different view on certain public health measures. So we could really see him putting his stamp on the recommendations. Notably, this does not focus on vaccines. That’s a different group. That’s a different group that recommends vaccines, but that is still being discussed in the lower courts. So the vaccine issue isn’t over, but it’s not part of this case, per se. 

Rovner: This particular case, though, was really about PrEP [pre-exposure prophylaxis], right? It was about HIV preventives. 

Ollstein: Well, basically, the challengers, these conservative employers in Texas, in going after PrEP specifically, also are going after all preventive services. And the piece of the case that focused specifically on PrEP, where they said that requiring them to cover this HIV prevention drug would violate their religious rights, that piece did not go to the Supreme Court. So, lower courts have allowed these specific employers to opt out of covering PrEP, but because that ruling was not applied to anybody else in the country, the Biden Justice Department did not appeal it up to the Supreme Court. Probably, I’m just reading the tea leaves, not wanting to give this Supreme Court an opportunity to go after that. 

So that piece of it was not at issue, but the experts I talked to said that PrEP would still be really vulnerable if there was a broader ruling against preventive care, because PrEP is extremely expensive. And unlike other preventive services that insurers may see as really saving them money, they may see this as costing them and would drop that coverage, which could be really devastating to the U.S. effort to end the spread of HIV. 

Rovner: So I think one of the big surprises in this case was not that the Biden administration sued but that the Trump administration continued the position of the Biden administration. And one theory of why the Trump administration is defending the USPSTF [U.S. Preventive Services Task Force] is that it wants to exercise more power over not just that advisory panel but others, too, which brings us to a report in Politico that HHS Secretary Kennedy is considering unilaterally ordering the ACIP — that’s the advisory committee on immunizations — to drop its recommendation that children continue to receive the vaccine to protect against covid. 

Now, Sarah, isn’t this exactly what Kennedy promised Sen. Bill Cassidy that he wouldn’t do during his confirmation hearings? Personally meddle with scientific recommendations? 

Karlin-Smith: Kennedy did make a very explicit promise related to the vaccine schedule, I think, and I think we’ve seen multiple times already, and I’m sure Bill Cassidy is getting tired of reporters asking him, Are you going to do something about this? But I think Kennedy has already probably walked back, really not kept the thrust of a lot of his commitments to Cassidy. And a change to the vaccine schedule for the covid vaccine for children could essentially impact insurance coverage. It might make it no longer eligible for the Vaccines for Children Program, which ensures people with lower incomes or no insurance can afford vaccines for their children. And so I think this is a particularly concerning step for people. Even though it wouldn’t necessarily take the vaccine away, it could make it really inaccessible and unaffordable. 

I did want to quickly say about the idea in [Kennedy v.] Braidwood that the government wins, RFK gets more authority. I heard a really interesting comment yesterday about that thread, and the head of the American Public Health Association was trying to emphasize, like, it’s sort of status quo. If the Braidwood case goes the way of the government, anybody can technically misuse the authority, and the thing they’ll be watching for is to see what happens there or pushing for a legislative construct so that he can’t really misuse it, because, I think, in their minds, a lot of public health associations and leaders want a win here. So I think they’re sort of pushing back on the messaging about exactly what this means for Kennedy. 

Rovner: So there are also some indications that the public is starting to buy what RFK Jr. is selling, at least when it comes to vaccines, even as measles and now whooping cough cases continue to mount. A new poll from my colleagues here at KFF finds a growing share of adults who have heard the false claims, including that the measles vaccine causes autism or that the vaccine is more dangerous than getting measles, both of which are not true. 

Sarah, you were at the World Vaccine Congress here in Washington this week. What are the folks there feeling about all of this? 

Karlin-Smith: So I overheard someone in the hallway say yesterday that everybody here is shell-shocked, and I think that is probably a good characterization of the mood in the vaccine world. The environment they operate in has sort of been turned on its head very quickly, and there is concern about the future. 

I went to one panel where lawyers were sort of very optimistic that the way the country has sort of set up our vaccine system and authorities, a lot of authority rests in the hands of the states and state laws that may protect our ability to access and get vaccines, as well as they seem to feel that this Supreme Court as well, when it comes to vaccine issues and any attempts by the federal government to encroach more power, would lean in favor of the states and having the power in the states. There was a lot of hope there. I think that does rely on the rule of law sort of being followed by this administration, which doesn’t always happen. 

The other thing that I think will be interesting to watch moving forward is those assumptions that we have systems in place to protect our vaccine infrastructure and access do rely on the vaccines actually being approved. And to get to that point, particularly with new vaccines, you have to have the federal government approve them. And that the buck could kind of stop there. And we’ve already seen some signs that FDA [Food and Drug Administration] and HHS politicals are interfering in that process. So certainly, again, the vaccine community is nervous and feeling like they have to defend something that, as somebody said, change the world from one where you didn’t know if your children would live to go to school to one where you can just sort of assume that, and that’s a really dramatic difference in our health and our lives. 

Rovner: Well, that is a perfect segue into what I wanted to talk about next, which was the continuing impact of the cuts at HHS. This week, we’ve learned of the shutting down of some major longitudinal studies, including the landmark Women’s Health Initiative, which has tracked more than 160,000 women in clinical trials and even more outside of them since the 1990s and has led to major changes in how women are diagnosed and treated for a variety of health conditions. Also, apparently being defunded is a multistate diabetes study as well as the CDC’s longitudinal study of maternal health outcomes. 

Alice, you have a story this week on how clinics are starting to close due to the cutoff of Title X family planning funding. A lot of these things are going to be difficult or even impossible to restart even if the courts eventually do say that, No, administration, you didn’t have the authority to do this and you have to restore them, right? 

Ollstein: Yeah. So in the Title X context, I’ve been talking to providers around the country who had tens of millions in funding frozen. And it was frozen indefinitely. They don’t know when or whether they’ll get it. They’re being investigated for possible violations of executive orders. They submitted evidence trying to prove they aren’t in violation, and they just have no idea what’s going to happen, and they’re really struggling to keep the lights on. And they were explaining, yeah. once you lay off staff, once you lay off doctors and nurses, and once you close clinics, you can’t just flip a switch and reopen, and even if the funding comes through again later. 

And I think that’s true in the research context as well. Once you halt research, once you close down a lab, even if the funding is restored, either as a result of a court case on the sooner side or buy a future administration, you can’t just unplug the government and plug it back in again. 

Rovner: Atul Gawande has a story in The New Yorker this week that I will link to about what’s going on at Harvard, which is, obviously, gets huge headlines because it’s Harvard. But the thing that really jumped out at me was there’s an ongoing study of a potential, a really good, vaccine for TB, which scientists have been looking for for a hundred years, and they were literally just about to do sort of the TB challenge for the macaques who have been given this vaccine, and now everything is frozen. And it seems that it’s not just that it would ruin that, but you would have to start over. It’s a waste of money. That’s what I keep trying to say. This seems like — this does not seem like it is saving money. This seems like it is just trying to basically wreck the scientific establishment. Or is that just me? 

Karlin-Smith: No, I think there’s plenty of examples of that where, again, they’ve wrapped a lot of this in the idea that they’re going after government efficiency and waste. And when you look at what is actually falling to the cutting-room floor, there’s a lot of evidence that shows it’s not waste of you think of these long-term studies like the diabetes study or the Woman’s Health Initiative they’ve been running for so many years, to then have to lose those people involved in that and to replicate it would cost, I saw one report was saying, maybe a million dollars just to kind of get it back up and running on the ground again. 

And it also conflicts with other Kennedy and health administration priorities that they’ve called for, which is to improve chronic disease treatment and management in the U.S. So there’s a lot of misalignment, it seems like, between the rhetoric and what they’re saying and what’s actually happening on the ground. 

Rovner: Well, Secretary Kennedy does continue to make news himself after last week announcing that he planned to reveal the cause of autism by this September. This week, the secretary says, as part of that NIH [National Institutes of Health]-ordered study, the department will create a registry of people with autism. The idea is to bring together such diverse databases as pharmacy, medication records, private insurance claims, lab tests, and other data from the VA [Department of Veterans Affairs] and the Indian Health Service, even data from smartwatches and fitness trackers. What could possibly go wrong here? 

Ollstein: There’s a lot of anxiety in the autism community and just among people who are concerned about privacy and concerned about this administration in particular having access to all of these records. There’s concern about people being included or excluded in such a registry in error, since we’ve seen, I think, a lot of what the administration has been doing has been relying on artificial intelligence to make decisions and comb through records. And there have been some very notable errors on that front so far. So, yes, a lot of skepticism, and I think there will be some interesting pushback on this. 

Rovner: Yeah. I just, I think anytime somebody talks about making registries of people, it does set off alarm bells in a lot of communities. 

Well, meanwhile, the secretary held a press conference Tuesday to announce that he’s reached an agreement with food-makers to phase out petroleum-based food dyes by next year. Except our podcast pal Rachel Cohrs Zhang over at Bloomberg reports that no agreement has actually been reached, and The Wall Street Journal is reporting that biotech is warming up to the new leadership at the FDA that’s promising to streamline approval in a number of ways. So, Sarah, which is it? Is this HHS cracking down on manufacturers or cozying up to them? 

Karlin-Smith: I think it’s a complicated story. I think the food dye announcement is interesting because, again, they sort of suggested they had this big accomplishment, and then you look at the details, and they’re really just asking industry to do something, which I find ironic because Kennedy’s criticism of the FDA and the food industry’s relationship and the fact that we have these ingredients in our food in the first place has been that FDA has been too reliant on the food industry to self-police itself, and they really aren’t starting the regulatory process that would actually ban the products. 

And again, I think there’s sort of mixed research on how much, if any, harm comes from these products to begin with, so that picture isn’t really great. But there’s, again, these incredible ironies of the reports also coming out this week that they’re not inspecting milk the way they should and other parts of our food system and them touting this as this big health achievement. But at the same time, it does seem like the food industry is somewhat willing to work with them. 

I think on the biotech side, I maybe take slight disagreement with The Wall Street Journal. I think there are some positive signs for companies in that space from Commissioner [Martin] Makary in terms of his thinking about how to maybe make some products in the rare disease space go through the approval of process faster. I would just caution that Makary was very vague in how he described it, and it’s not even clear if he’s really thinking about something that would be new or what he would implement. 

And at the same time, again, you have to count all of that with the other elements coming out of the administration, including for Makary, that are kind of concerning about how they view vaccines. Makary also made some comments at the food dye event that are very reminiscent of RFK’s remarks, where he was very critical about the pharmaceutical industry and our use of drugs for treating obesity, depression, and other things that just repeats this sort of thread that kind of undermines the value of pharmaceuticals. So I think people are very hopeful in the industry about Makary and that he’d be a kind of counterbalance to Kennedy, but I think it’s too soon to really say whether he’s going to be a positive for that industry. 

Rovner: In other words, watch what they say and what they do. All right. Well, finally this week, I’m going to do my extra credit early because I want to let you guys comment on it, too. The story’s from MedPage Today. It’s by Kristina Fiore, and it’s called “Medical Journals Get Letters From DOJ,” and the story is a lot more dramatic than that. 

It seems that the interim U.S. attorney here in Washington, D.C., is writing to medical journals — yes, medical journals — accusing them of partisanship and failing to take into account, quote, “competing viewpoints.” And breaking just this morning, the prestigious New England Journal of Medicine has apparently gotten one of these letters, too. Now, none of these are so-called pay-to-play journals, which have their own issues. Rather, these are journals whose articles are peer-reviewed and based on scientific evidence. 

This strikes me as more than a little bit chilling and not at all in keeping with the radical transparency that this administration has promised. I honestly don’t know what to make of this. I’m curious as to what your guys’ take is. Is this one rogue U.S. attorney or the tip of the spear of an administration that really does want to go after the entire scientific establishment? 

Ollstein: I think we can see a pattern of the administration going after many entities and institutions that they perceive as providing a check on their power and rhetoric. So we’re seeing that with universities. We’re seeing that with news organizations. We are seeing that with quasi-independent government agencies and nonprofits. Now we’re seeing it with these medical journals. 

I’m not sure what their jurisdiction is here. These are not federally run or supported entities. These are private entities that theoretically have the right to set their own criteria for publication. But this may be intimidating and, like you said, chilling to some. So we’ll have to see what the response is. 

Rovner: Sarah, what are you hearing? 

Karlin-Smith: I think that it is interesting to me that they’re going after medical journals, because I’ve noticed a lot of the parts of the health industry are not willing to speak out and go after [President] Trump, even though probably privately behind the scenes a lot of people are very nervous about some of the activities. And the medical journals have been one place where I think you’ve seen a bit more freedom and seen the editorials and the viewpoints that have been harsher. 

So I wouldn’t be surprised if these are the entities that are willing to sort of cave to this kind of pressure, but I do think we’re in a very difficult environment. Again, being at this vaccine conference and talking to people about what you are doing to try and preserve your products that are so valuable to society, people don’t know what to do. They don’t know when pushing back will end up with them being in a worse situation. They don’t know when doing nothing will end up with them being in the worse situation. And it’s a really difficult place for all different kinds of groups, whether it’s a medical journal or a university or a drug company, to navigate. 

Rovner: We’ll add this to the list of stories that we are watching. All right, that is this week’s news. Now, we’ll play my interview with KFF Health News’ Rae Ellen Bichell. Then we will come back and do our extra credits. 

I am so pleased to welcome back to the podcast my KFF Health News colleague Rae Ellen Bichell, who’s here to talk to us about a story she did on how services are changing for transgender youth and their families in Colorado. Hi, Rae. 

Rae Ellen Bichell: Hi. Thanks for having me. 

Rovner: So, Colorado has long been considered a haven for gender-affirming care, but even there, health care for transgender youth temporarily flickered as hospitals responded to executive orders from the Trump administration trying to limit what kinds of care can be provided to minors. Let’s start with, what kind of health care are we talking about? 

Bichell: There’s a lot of different things that count as gender-affirming care. It can really be anything from talk therapy or a haircut all the way to medications and surgery. 

For medical interventions, on that side of things, the process for getting those is long and thorough. To give you an idea, the guidelines for this typically come from the World Professional Association for Transgender Health, and the latest document is 260 pages long. So this was very thorough. 

With medications, there’s puberty blockers that pause puberty and are reversible, and then the ones that are less reversible are testosterone and estrogen. So patients who need and want them will get puberty blockers first as puberty is setting in — so the timing matters, just to put everything on the ice — and then would start hormones later on. It is important to note, lots of trans kids don’t get these medications. Researchers found that transgender youth are not likely to get them, and politicians like to talk about surgery, of course, but it’s really rare for teens to get surgery. So for every 100,000 trans minors, fewer than three undergo surgery. 

Rovner: So when we talk about transgender care, as you said, particularly the Trump administration presents this as go to school one gender and come home another. That’s not what this is. 

Bichell: It is not an easy or fast process by any measure. 

Rovner: So, remind us what the president’s executive order said. 

Bichell: There were two of them. So one, right out of the gate on his first day in office, said it is a, quote, “false claim that males can identify as and thus become women and vice versa.” And then a second one called puberty blockers and hormones, for anyone under age 19, a form of chemical, quote, “mutilation” and a, quote, “a stain on our Nation’s history.” And that one directed agencies to take steps to ensure that recipients of federal research or education grants stop providing that care. 

Rovner: And that’s where the hospitals got involved in this, right? 

Bichell: Right. That’s where we started to see changes in Colorado and in other states as well. Here, there were three major health care organizations — so that’s Children’s Hospital Colorado, Denver Health, and UCHealth — and they all announced changes to the gender-affirming care that they provide to patients under 19. So this is in direct response to the executive order. 

Those changes were effective immediately and included no new hormone or puberty blocker prescriptions for patients who hadn’t had them before, limited or no renewals for those who had had such prescriptions before, and no surgeries. Some of that care has since resumed, and that happened after Colorado joined a U.S. District Court lawsuit in Washington state. And the situation there is there’s a preliminary injunction that’s blocking the orders from taking effect but only applies to the four states that are involved in the lawsuit. 

But even though the care has been restored, even though Colorado joined that Washington lawsuit, it was still enough to shake people’s confidence in this state. 

Here’s Louise. We’re using her middle name. She’s the mom of a trans teenager. 

Louise: I mean, Colorado, as a state, was supposed to be a safe haven, right? We have a law that makes it a right for trans people to have health care, and yet our health care systems are taking that away and not making sure that our trans people can have health care, especially our trans kids. 

Rovner: So what kind of impact did that have on patients, even if it was just temporary? 

Bichell: Pretty profound. One family I spoke to with a 14-year-old, they predicted this might happen. They started stockpiling testosterone, the mom said, as soon as the election happened. And what that means is kind of just saving anything that was left over in the vial after the teen took his dose so they could stretch it for as long as possible. 

That teen also had a kind of surprise moment where even his birth control came into question. And that’s because his birth control suppresses his period, which is considered part of his gender-affirming care. So his doctor had to have this special meeting just to make sure that he could keep getting that prescription, too. 

And then one part of this health care that has not turned back on is surgery. And so, even though it’s rare, for the patients who want and need it, that’s a significant gap. 

Rovner: And what does that mean for patients? 

Bichell: So, Louise’s son, David — that’s his middle name, too. He’s 18 years old. And I visited him in his dorm room in Gunnison. That’s a mountain town here. He told me that testosterone has helped him a lot. 

David: I don’t know if you noticed, but there are no mirrors in here. 

Bichell: I did not notice that. 

David: Yeah. 

Bichell: You’re right. 

David: My sister and best friend will come up and stay the weekend or something like that. And every time they come up, they complain that I don’t have a mirror. And I’m like, I don’t want to look at myself, because, I don’t know, for the longest time I just had so much body dysphoria and dysmorphia that it can be kind of hard to look in the mirror. But when I do, most of the time I see something that I really like. 

Bichell: So his confidence and mental health has really improved with the testosterone, but he also would really like to get a mastectomy and thought that he could do it this summer so that he’d have enough recovery time before the new school year started in the fall. But he’s not aware of anyone now in Colorado who will do this surgery for 18-year-old patients, so he has to wait until he turns 19. He has taken a significant mental health hit because of having to wait. 

The irony here is that he could easily get surgery to enhance his breasts but can’t reduce or remove them. And the other irony here is that cisgender men and boys can still get gender-affirming breast reduction surgeries and do. In fact, they’re more likely to get that kind of surgery than transgender men and boys. 

Rovner: So what do things look like going forward in Colorado? 

Bichell: There is a bill making its way through the state capitol right now. It’s about protecting access to gender-affirming care. So let’s see where that lands. But in the meantime, the families that I’ve been speaking with, a moment that really stood out to them was, in early April, the Trump administration came out with a proclamation that said, quote, “One of the most prevalent forms of child abuse facing our country today is the sinister threat of gender ideology,” end quote. So they’re still feeling pretty apprehensive about the future. 

Rovner: Well, we’ll watch this as it goes forward. Rae Ellen Bichell, thank you so much. 

Bichell: Thanks again. 

Rovner: OK, we’re back. Now it’s time for our extra-credit segment. That’s where we each recognize the story we read this week we think you should read, too. Don’t worry if you miss it. We will put the links in our show notes on your phone or other mobile device. I’ve already done mine. Alice, you’ve got a lighter story this week. Why don’t you go next? 

Ollstein: A sweeter story, you might say. So I have a piece from The New York Times that is about — it’s a great exposé of a researcher who is in the pocket of Big Maple Syrup, according to this reporting. The article is “A Scientist Is Paid to Study Maple Syrup. He’s Also Paid to Promote It.” This is a great piece of how he exaggerated the health benefits of maple syrup. He cherry-picked findings that appeared to make this a health-promotion food more than the findings really showed. 

But it all really, on a serious note, made me think about the current federal cuts to research and how, in the absence of that taxpayer public support, more and more scientists may need to turn to industry support for their work. And that brings all of these ethical problems that you really see in this article. Pressure to come to certain findings. Pressure to not release certain findings if they don’t fit with the agenda, etc. So I think this is a little bit silly but also serious. 

Rovner: I was personally disappointed to read this story because maple is my favorite sweetener. 

Ollstein: Well— 

Rovner: And I was really happy when I started seeing the research that said it’s really good for you. It will still be my favorite sweetener. Sarah. 

Karlin-Smith: I took a look at a story from Alexandra Glorioso and Lawrence Mower of the Miami Herald/[Tampa Bay] Times [“Countering DeSantis, $10M Hope Florida Donation Came From Medicaid, Draft Shows”] that documents how it appears that Gov. [Ron] DeSantis in Florida steered about $10 million that the state got back through a settlement with one of their Medicaid contractors to a nonprofit run by his wife, and then seeming to having to kept steering the money to political committees that are supporting Republicans. 

And as Julie mentioned, this is probably one of those things that would’ve gotten tons of attention, much slower news time, but it’s a fascinating story and just very interesting to watch just how they were able to figure out and document how all this money was being transferred. And that even the, in some of the stories you see, even the Republican lawmakers and Congress and their state legislature are pretty frustrated about it. 

Rovner: Local journalism still matters. Tami. 

Luhby: I looked at a story out of Stat News by Andrew Joseph titled “In Ireland, a Global Hub for the Pharma Industry, Trump Tariffs Are a Source of Deep Worry.” So, many of us, including me, have been writing about the potential for tariffs on pharmaceutical imports since Trump, unlike his first term, has been promising to impose them on the drug industry. 

Well what I liked about this story was that it focused on drug manufacturing in Ireland, with Joseph reporting from Dublin and County Cork. I’d like to get that assignment myself. But he shows how America pharma companies, how important they are to the Irish economy. Ireland has lured them with low taxes and concerted efforts to build its manufacturing workforce. And interestingly, the country started to move foreign investment in the 1950s. It mentions, interestingly, that President Trump had specifically called out pharma operations in Ireland, criticizing the U.S. trade balance while meeting with the Irish prime minister for St. Patrick’s Day. 

But there were a lot of good details in the piece. Of the 72.6 billion euros’ worth of exports that Ireland sent to the U.S. last year, 58.3 billion were classified as chemical and related products, the bulk of them pharmaceutical goods. The biopharma industry now employs 50,000 people in Ireland. 

And, another little tidbit that I liked, the National Institute for Bioprocessing Research and Training in Dublin actually has a mock plant where thousands of workers have been trained for careers in the industry. And it talks about, even getting down to the county and local levels, how Ireland is concerned that tariffs could prompt American drugmakers to invest less in the country in the future, which will hurt Ireland’s export business, its corporate tax base, the jobs, and the economy overall. 

Rovner: Yeah, globalization’s a real thing, and you can’t just turn it off by turning a switch. It was a really interesting story. 

All right, that is this week’s show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcast. We’d appreciate it if you left us a review. That helps other people find us, too. Thanks, as always, to our editor, Emmarie Huetteman, and our producer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner, and at Bluesky, @julierovner. Where are you guys hanging these days? Sarah. 

Karlin-Smith: I feel like I’m trying to be everywhere on social media. So you can find me, @SarahKarlin or @sarahkarlin-smith on Bluesky, LinkedIn, all those fun places. 

Rovner: Alice? 

Ollstein: Mainly on Bluesky, @alicemiranda. Still on X, @AliceOllstein. 

Rovner: Tami. 

Luhby: Mostly at CNN at cnn.com. 

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

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