Cuando Su Wang estudiaba medicina, donó sangre. Fue entonces cuando se enteró de que estaba infectada con hepatitis B, un virus que ataca el hígado y que puede causar cáncer y la muerte décadas más tarde.

“Tenía 18 años, estaba sana, en la universidad”, contó. “Y de repente tenía una enfermedad crónica de la que ni siquiera sabía”.

Wang nació en Florida en 1975, antes de que se aplicara de manera rutinaria la vacuna contra la hepatitis B a los recién nacidos.

Durante años, supuso que se había contagiado por su madre, pero más adelante descubrió que sus padres no tenían el virus. “Resulta que probablemente fueron mis abuelos, quienes me cuidaron después de nacer, quienes me lo transmitieron”, dijo.

“Así de fácil se contagia este virus: no por algún factor de riesgo exótico, sino en el entorno familiar”, agregó.

Hoy, Wang es directora médica de los programas de hepatitis viral en RWJBarnabas Health en Nueva Jersey. Su historia está en el centro de un punto de inflexión histórico en la salud pública.

El 5 de diciembre, el Comité Asesor sobre Prácticas de Vacunación (ACIP, por sus siglas en inglés) de los Centros para el Control y Prevención de Enfermedades (CDC, por sus siglas en inglés) votó para poner fin a la recomendación universal de aplicar la vacuna contra la hepatitis B a los recién nacidos, adoptando en su lugar una política basada en decisiones individuales.

Con este nuevo enfoque, solo los bebés cuyas madres den positivo para la hepatitis B recibirán automáticamente una dosis de la vacuna y anticuerpos contra el virus poco después de nacer. En los demás casos, si los padres deciden vacunar, la primera dosis se puede postergar hasta los 2 meses de edad.

Todos los miembros del comité fueron nombrados por el secretario de Salud y Servicios Humanos, Robert F. Kennedy Jr., un conocido activista antivacunas.

En una votación de 8-3, el panel decidió que, dado que la mayoría de las mujeres embarazadas actualmente se someten a pruebas para detectar hepatitis B, la aplicación de la vacuna al nacer debería reservarse para los bebés cuyas madres den positivo.

Los miembros del panel presentaron el cambio como una forma de reducir intervenciones innecesarias, alinear la vacunación con los resultados de las pruebas y darles a los padres más control sobre el momento de la aplicación.

Quienes apoyaron la decisión la describieron como una medida que promueve la elección de los padres, más que como un reflejo de un cambio en la epidemiología.

Pero para muchos profesionales clínicos y epidemiólogos, este cambio representa un retroceso peligroso que podría revertir tres décadas de avances hacia la eliminación de una enfermedad que aún infecta a unos 2,4 millones de personas en el país y que provoca decenas de miles de muertes cada año.

Perciben ecos de los años 80, cuando un enfoque basado en factores de riesgo dejó a generaciones sin protección, y temen que el país esté por repetir ese error.

Además, la decisión del panel sobre la hepatitis podría ser uno de varios cambios que podrían desestabilizar el calendario nacional de vacunación infantil, una piedra angular de la salud pública.

“No están tratando de cambiar una sola vacuna”, dijo Angela Rasmussen, viróloga y editora de la revista científica Vaccine. “Están tratando de desmantelar la manera en que se establece la política de vacunación”.

La vocera del Departamento de Salud y Servicios Humanos, Emily Hilliard, respondió: “El ACIP revisa toda la evidencia presentada y emite recomendaciones basadas en pruebas y buen juicio, con el fin de proteger de la mejor manera posible a los niños en Estados Unidos”.

Los autores de una nueva revisión independiente del Vaccine Integrity Project, que evaluó más de 400 estudios e informes, advirtieron en un comentario público que retrasar la dosis al nacer “reduciría la protección de los bebés y aumentaría el riesgo de infecciones evitables por el virus de la hepatitis B (VHB), lesionando décadas de avances” hacia su eliminación.

La revisión fue dirigida por investigadores del Centro de Investigación y Políticas de Enfermedades Infecciosas de la Universidad de Minnesota, que creó el Vaccine Integrity Project en respuesta a lo que considera acciones del gobierno de Trump que “pusieron en riesgo el panorama federal de vacunación”.

La revisión fue evaluada por expertos externos.

“Luchamos mucho para lograr esa dosis universal al nacer”, dijo Wang. “Sabemos lo que pasa cuando uno espera”.

El debate gira en torno a algunas preguntas clave: si las pruebas son lo suficientemente confiables como para reemplazar las protecciones universales, qué tan contagiosa es realmente la hepatitis B, por qué fracasaron las estrategias del pasado y qué significan los cambios internos en los CDC para la política de vacunación en general.

Los límites de las pruebas

Las pruebas de hepatitis B están en el centro de la nueva recomendación del ACIP, pero incluso los CDC reconocen que las pruebas por sí solas no garantizan protección.

Las mujeres embarazadas pueden dar negativo si contraen el virus al final del embarazo o durante el “período de ventana”, antes de que los antígenos de la hepatitis B sean detectables. También hay falsos negativos. Ningún sistema de pruebas, por bien diseñado que esté, puede detectar todas las infecciones.

Por eso se creó la vacunación universal.

Si se desconoce el estado de la madre en el momento del parto, los hospitales deben aplicar la vacuna al bebé dentro de las 12 horas y agregar anticuerpos contra la hepatitis B en el caso de los bebés prematuros o si la madre da positivo más tarde. Pero en la práctica clínica real, estas medidas de seguridad suelen fallar. Los resultados tardan en llegar. Algunas enfermeras omiten o interpretan mal los análisis. Las farmacias retrasan las entregas. Se pierde la documentación.

“Cada paso adicional aumenta la posibilidad de que algo se pase por alto”, dijo Wang. “Retrasar la vacuna simplemente agrega otro paso”.

La votación del ACIP demuestra cómo se está cuestionando esa lógica.

Algunos miembros del comité sugirieron eliminar la tercera dosis de la vacuna si los niveles de anticuerpos se ven elevados después de la segunda.

Pero Brian McMahon, especialista en enfermedades hepáticas que ha tratado hepatitis B durante décadas, dijo al panel que los datos no respaldan esa idea. “Solo entre el 20% y el 30% de los bebés presentan niveles adecuados de anticuerpos después de la primera dosis”, señaló.

“Se necesitan dos dosis para lograr una protección alta”, dijo, y agregó que la tercera proporciona una respuesta más fuerte y duradera.

McMahon dijo que el mensaje general del comité parecía estar orientado a “desalentar la dosis al nacer”.

“Están poniendo cada vez más trabas”, dijo McMahon.

En una segunda votación, el ACIP también alentó a los padres y profesionales a solicitar pruebas serológicas después de la segunda o tercera dosis —análisis de sangre que miden los niveles de anticuerpos protectores—. Según el comité, estas pruebas deberían estar cubiertas por el seguro médico.

Más contagiosa que el VIH o la hepatitis C

El virus de la hepatitis B puede sobrevivir hasta una semana en cepillos de dientes, rasuradoras y superficies del hogar. Se transmite no solo de madre a hijo, sino también mediante el contacto familiar cotidiano: objetos compartidos, heridas abiertas, pequeñas exposiciones a sangre. En los años 80, investigadores descubrieron que cerca de la mitad de las infecciones en niños estadounidenses no provenían de la madre, sino de otros miembros del hogar.

Por eso, los departamentos de salud estatales siguen insistiendo en que se vacune a todos los recién nacidos dentro de las primeras 24 horas, sin importar el estado de salud de la madre.

“Retrasar la vacunación implica perder un período clave de posible exposición”, advirtió una guía de Nueva York este año. La vacuna, señaló, tiene una efectividad de entre 80% y 100% cuando se aplica a tiempo.

El informe del Vaccine Integrity Project destaca lo que está en juego. Desde que se introdujo la dosis universal al nacer en 1991, las infecciones pediátricas por hepatitis B en Estados Unidos han disminuido más del 99%.

Un análisis de los CDC de 2024 estimó que el calendario actual ha prevenido más de 6 millones de infecciones por hepatitis B y cerca de 1 millón de hospitalizaciones.

Los beneficios duran toda la vida. Los bebés vacunados al nacer están protegidos no solo de la hepatitis B, sino también de la insuficiencia hepática y el cáncer que puede causar décadas más tarde.

Sin embargo, como la enfermedad avanza lentamente, las consecuencias de los cambios en la política podrían tardar 20 o 30 años en manifestarse.

Trieu Pham, médico de California, no necesita imaginar esas consecuencias. Nacido en Vietnam en 1976, probablemente contrajo el virus al nacer. “Si la vacuna hubiera existido entonces, no habría pasado por todo lo que pasé”, dijo. Le diagnosticaron hepatitis B en sus 20, desarrolló cirrosis a los 40. A los 47, tosía sangre por la ruptura de venas esofágicas. Finalmente, necesitó un trasplante de hígado para sobrevivir.

“Uno vive con un cansancio constante y con miedo”, contó. “Y lo más triste es que era prevenible”.

Sus tres hijos, vacunados a las pocas horas de nacer, no tienen hepatitis B. “Esa es la diferencia que puede hacer un solo día”, dijo Pham.

Una lección aprendida

En 1982, el ACIP recomendó la nueva vacuna contra la hepatitis B solo para adultos con alto riesgo: trabajadores de salud, personas que usan drogas inyectables y hombres que tienen relaciones sexuales con hombres.

Pero a finales de los años 80, quedó claro que la vacunación basada en factores de riesgo no lograba contener la transmisión. Muchos adultos recién infectados no pertenecían a los grupos definidos como de alto riesgo. Identificarlos resultó imperfecto, estigmatizante y, al final, ineficaz.

Mientras tanto, los bebés infectados durante o poco después del parto tenían un 90% de probabilidad de desarrollar infección crónica, en comparación con menos del 5% en adultos. Sin embargo, las autoridades de salud pública repitieron la misma estrategia focalizada, esta vez con recién nacidos.

En 1988, los CDC recomendaron pruebas prenatales universales y vincularon la vacunación del bebé al resultado de la madre, basando de nuevo la protección en un marcador de riesgo en lugar de vacunar a todos los bebés.

Como antes, la estrategia fracasó.

Muchas madres infectadas no fueron identificadas correctamente. Algunas no se hicieron la prueba, otras la hicieron demasiado temprano, y hubo casos en que los resultados se interpretaron mal o nunca se comunicaron. Demasiados bebés quedaron sin protección, una prueba más de que el enfoque dirigido no era confiable.

En 1991, los CDC emitieron una guía histórica que recomendaba vacunar a todos los recién nacidos, sin importar el estado de infección de la madre, y aplicar dos dosis adicionales durante la infancia.

Para 2005, la política estaba completamente integrada en el calendario de vacunación rutinaria y fue ratificada nuevamente en 2018.

Esta evolución se basó en datos que demostraban que una estrategia universal era más efectiva para prevenir infecciones que una basada en riesgos.

Una cuestión de confianza

La nueva política sobre la hepatitis B de los CDC parte del supuesto de que trasladar la decisión a los padres fortalecerá la confianza en el sistema de vacunación. Quienes la apoyan la presentan como un cambio que empodera, una manera de darles más control a las familias.

En 1999, cuando se recomendó por última vez postergar la primera dosis de la vacuna contra la hepatitis B en bebés cuyas madres no estaban infectadas, también disminuyeron las tasas de vacunación entre los bebés de madres que sí lo estaban.

“Las políticas de consentimiento suenan centradas en el paciente, pero en la práctica no son equitativas. Dejan fuera justamente a las familias que más necesitan protección”, dijo Wang. Es decir, a aquellas que probablemente no acceden a atención prenatal ni a pruebas, que tienen infecciones no detectadas o adquiridas después de las pruebas, así como a bebés que pueden estar expuestos a cuidadores u otros miembros del hogar.

Con frecuencia, se trata de familias inmigrantes, incluyendo comunidades asiáticas y de las islas del Pacífico, donde la hepatitis B sigue siendo endémica. “Ya diagnosticamos y tratamos poco a estas poblaciones”, dijo Wang. “Este cambio solo profundizaría esa brecha”.

Estados Unidos es ahora el único país que ha abandonado la recomendación de una dosis universal al nacer contra la hepatitis B. Aunque tomará décadas reunir datos sobre los resultados, algunos investigadores predicen que retrasar la primera dosis hasta los 2 meses podría resultar en más de 1.400 infecciones evitables y unos 300 casos de cáncer de hígado por año.

“No elegimos lo que heredamos”, dijo Wang. “Pero sí podemos elegir lo que dejamos a las próximas generaciones”.

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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As health insurance premiums skyrocket in both employer-based plans and Affordable Care Act marketplaces, millions face worse choices than ever during this open enrollment.

The team behind “An Arm and a Leg” examines their own limited options, walking through how they approached reading the fine print to weed out the worst choices — and potentially save thousands of dollars.

Plus, KFF Health News senior correspondent Julie Appleby explains what could happen if Congress changes course and extends the enhanced premium tax credits for Obamacare enrollees that are due to expire at the end of the year. And a listener wonders: Is paying for health insurance even worth it at this point?

Dan Weissmann @danweissmann Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.

Credits

Emily Pisacreta Producer Claire Davenport Producer Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: How to pick health insurance — in the worst year ever

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan hosting: Hey there. As we started writing up this episode, the U.S. government was starting to re-open, after the longest shutdown ever. ?Eight Democratic Senators had made a deal.

News anchor: But this deal has Democrats divided. It does not include an extension for Obamacare subsidies, which is what the party was holding out for.

Dan hosting: And people were pissed. Here’s a couple examples from our social-media feeds… 

TikTok user hunteralexanderpowell: eight Democrats caved and betrayed the American people tonight

TikTok user shaneechchi: The Democrats caved. The Democrats caved! What? I have tried to calm down so many times to record this video, but Senate Democrats…

Dan hosting: Those Democrats did extract one sliver of a concession: A promise from Republican Senate Majority Leader John Thune to schedule a vote on extending the subsidies for early December. Which lots of people found… unsatisfying. One more from our feed here. There’s some strong language in this one: 

TikTok user 2rawtooreel: After 40 days of fighting for our subsidies, we got a pinky promise. What a gut punch. The eight Dems caved and then they fucked our families. And that’s the way they all became the bitch-ass bunch. The bitch-ass bunch.

Dan hosting: Yeah. News reports pretty much all say: That vote will fail.

But even if they’re wrong, even if some unexpected deal gets made, expect nightmares. Logistical nightmares. Tech nightmares. Julie Appleby is a reporter with our pals at KFF Health News.

She talked to folks who run the Obamacare exchanges in a bunch of states and asked them: Hey, if Congress makes a deal, what happens next?

They were like: Well, we’d have to take our websites down to plug in the new numbers. 

Julie Appleby: And that could take maybe up to a week.

Dan: Yeah, a week. Julie says that took her by surprise.

Julie Appleby: I guess I mistakenly assumed, naively assumed that, oh, it’d be pretty easy. Let’s just, you know, program these numbers in. It might take a couple hours or whatever, but no, it’s not just a simple let’s throw a switch and change all this stuff…

Dan hosting: And there’s a ticking clock: If you want an Obamacare plan that starts covering you on January first, you have to sign up by… December 15. And again, IF there’s a vote to do any of this, it’s not supposed to happen until December. Tick-tock… 

So look: Nobody can predict the future, but if you’re looking at Obamacare for 2026: Don’t count on those extra subsidies being there.

Meanwhile, premiums are going up — both for Obamacare plans and for employer-based insurance.

We’re gonna spend the rest of this episode looking at: OK, now what? It’s the worst ever year to choose insurance. What do you do? We’ll hear from a listener who wrote to us asking for advice, and we’ll look at what next year looks like for ourselves — for me and my colleague Emily Pisacreta. 

There are folks who have it worse than we do. Millions of people just won’t be able to afford insurance at all for next year. But our stories give a sketch, a little sample — and some lessons and tools that I hope will come in handy for anyone asking the same questions we are.

Like a lot of our stories — like our whole beat– there’s no happy ending here. This absolutely sucks.

We’re talking about choosing the LEAST crappy option here. Which, even when all the options are crap, is STILL WORTH DOING. Because some options are so much crappier than others. But sorting out which ones means learning to read some fine print. So let’s get to it.

This is An Arm and a Leg, a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So the job we’ve chosen here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you a show that’s entertaining, empowering, and useful.

Let’s pick up where we left off a couple of months ago: With this show’s senior producer, Emily Pisacreta. 

Dan hosting: Hey Emily.

Emily hosting: Hey Dan.

Dan hosting: So, let’s recap… 

Emily hosting: Yeah, so before… I had insurance from another part-time job. But that job ended over the summer.

Dan hosting: And An Arm and a Leg has always been so tiny, I never thought about budgeting for anybody else’s health insurance.

Emily hosting: So I had to look for Obamacare. And I ended up getting help from the absolute best person: Elisabeth Benjamin. She’s Vice President of Health Initiatives at the Community Service Society of New York. 

Dan hosting: She has been one of our go-to sources for years–  because her fights to protect New Yorkers from medical debt are epic.

Emily hosting : And as it happens, she’s also a navigator for Obamacare — she helps people choose and sign up. She invited me over to look at my options.

Elisabeth Benjamin: Ok, so ready?…

Emily hosting: The good news: I qualified for a subsidy.

The bad news: That was gonna come to a screeching halt come January. She suggested we meet again in November to look at my 2026 options.

So, last week, we did– just a couple days after those Senate Democrats had folded on the enhanced subsidies. 

Elisabeth Benjamin: It’s quite clear that the enhanced premium tax credits are gonna sunset. Right?

Emily: Yeah.

Elisabeth Benjamin: Yeah. Which is really horrible for patients.

Emily: Are you surprised or did you sort of see the writing on the wall?

Elisabeth Benjamin: I find understanding Congress and the federal government and what they’re gonna do really challenging. I would’ve thought people would’ve wanted to do something, but it’s, it’s hard when people aren’t getting SNAP benefits and planes aren’t flying. And for me I would’ve thought that they would’ve been able to come up with a compromise, but they didn’t. So…

Emily: Yeah. 

Elisabeth Benjamin: So, you know, I don’t know. All right. Lemme show you your thing. 

Emily: You wanna share your screen? 

Elisabeth Benjamin: Okay. Um, so here’s your account. Here’s your eligibility. You know, this is what you have right now. Your tax credit is $385 a month. Your income, if it’s unchanged, means you will be eligible for no tax credit next year.

Emily hosting: So we kinda knew this was coming. I make a little more than 400 percent of the federal poverty level, which means I don’t qualify for that enhanced premium tax credit anymore. 

Elisabeth Benjamin: You are being impacted by the expiration, like you are going from. Spending whatever it was, 400, $400 a month to $800 a month.

Emily hosting: Actually it’s going from $496 to $867. And all this for what’s called a Silver Plan. You know, not platinum, not gold. 

Elisabeth Benjamin: You’re not talking about Cadillac coverage here. You have a big deductible.

Emily hosting: Yeah… that’s $2500 before I can afford to see a doctor in person. A doctor who’s in-network. In an itty bitty network. I kinda wondered what I would get if I leveled up. 

Elisabeth Benjamin: So you wanna do the cheapest gold or like a mid price

Emily: Yeah. Let’s just see what the cheapest golds look like.

Elisabeth Benjamin: So the cheapest is 1100. $1,100. So that’s a lot. 

Emily hosting: Yeah so that was out of the question. And we looked at a slightly cheaper silver plan, too. But the deductible was a lot higher and the ER coverage was pitiful.

Elisabeth Benjamin: Just walking into an emergency room in New York City is like $10,000. So you’d be basically paying your whole emergency room visit. Whereas right now you have real protection, you only have $500…

Emily hosting: And anyway for all its holes, my current plan — like of these New York state marketplace plans — does actually have a big advantage over every other health insurance plan I’ve ever had. Zero dollar copays for my absolute do or die stuff — my insulin and my continuous glucose monitor.

Dan hosting: Yeah. That’s just one way where you live really matters.

Emily hosting: Yeah and I’m never leaving, I’m like the worst kind of New York chauvinist. But the cost of living here means this premium increase is gonna really hurt. I’m gonna need another job.

Dan hosting: Yeah, but I wanna keep you in this one. And we are working on a plan there. We’ll come back to it later. 

Emily hosting: Mmhm.

Dan hosting: Meanwhile, you’ve given us a snapshot of Obamacare.

Obamacare plans aren’t the only place where costs are going up. According to a survey of 1,700 businesses, the rate hikes on employer plans are the biggest in 15 years.

And you know who’s on an employer plan? My family. My wife and I both have small little businesses, and we’ve been able to buy small-group coverage for ourselves that way — which means we do get to choose from plans that aren’t on the Obamacare exchange. 

So, here’s a little heartwarming scene from my house — me showing my wife Devorah what our health insurance is going to cost for next year.

Devo: All right.

Dan: Make sure we’re recording. Let’s see. Yep. Here we go. Alright, so let me just show you what I have been looking at. 

Devo: Alright.

Dan:  And be aware that it super sucks. 

Devo: Alright.

Dan hosting: And here’s what I showed her: Our insurance plan is going up by 500 dollars a month in January. Six thousand dollars a year. 

Devo: I’m not allowed to say bad words, right? 

Dan: You’re totally allowed to say, are you kidding me? Bad words are very appropriate. 

Devo: Bad words are forming in the thought bubble over my head. 

Dan: You can say them all you want 

Devo: Okay. Fuck. 

Dan hosting: Absolutely fair. The new total for our plan is terrifying.. And — for reasons I’ll get to — that plan still looks like our best option.

Meanwhile, we’d heard from a listener — Jess lives in Indiana. She asked us to just use her first name, to protect her family’s privacy.

And she wrote to ask: Have you ever done a show about whether having health insurance is even worth it? A perfectly understandable question. We talked in early November.

Jess: Does it ever make sense to just, if you feel relatively healthy, like if I take what I’m paying for a premium and put into the bank account is, does that make more sense than just giving over this huge percentage of money? It feels like there’s not an answer.

Dan hosting: In her case, it looked like insurance for her and her husband would go up a couple hundred bucks a month, for the same crummy, bare-bones plan they already have. That could still leave them on the hook for like 17 thousand dollars in medical bills.

Jess: Obviously I feel really lucky that like we don’t work through the federal government or any number of folks who are dealing with much more this year than we are. But then at the end of the day, it’s really hard to press the button, and sign up for something that you’re like, well, I know I’m not gonna get great care because the one plan I chose like really limits the amount of doctors I can go to.

Dan hosting: And she says that limited list of doctors, it’s got a lot of turnover.

Jess: So like, we’ve been through how many doctors in the past five years? Then I know that if anything bad does actually happen, I still gotta come up with like $17,000 to like pay those bills, on top of everything else. So sometimes I’m just wondering like where, like with a system that doesn’t make any sense, where’s the line where for… I just feel like a lot of people are gonna be thinking about this, this year. Like, what? I’m gonna keep the money, I’m gonna put it in the bank and with people losing their jobs and stuff too, like maybe it’s time to just bulk up your savings. I don’t know.

Dan hosting: Jess and her husband run a small business. It hasn’t been a great year, and next year could be kind of dicey. On the other hand, her dad survived a major bout with cancer earlier this year. That experience had already been noodging her toward pressing the button: paying the extra for insurance. And then a little after she wrote to me.  

Jess: I was like visiting dad, this fall, So it had been long enough that he actually got the like ex– like I think it’s probably the explanation of benefits or whatever…

Dan hosting: Yep, explanation of benefits: That’s the insurance paperwork that shows the total chargesfor all that cancer treatment, and what the insurance company paid.

Jess: And he’s like, do you wanna know how much that cost? it was a million dollars. And I was like, okay, I guess I’m getting health insurance again this year. 

Dan: Oh my God. Wow.

Dan hosting: She and her husband *can* find the extra couple hundred dollars a month. And they will. But it still feels unresolved. 

Jess: I really love, like really trying to understand a problem I’m trying to solve and making sure I’ve like, I feel like that’s the, that’s the hard thing with this is that like every year I’m like, have I thought of everything?

Have I considered all the parameters? Have I I done the right research?

And just kind of feeling like on your own with it, even though, you know, everyone’s going through the same thing.

Dan: For sure. For sure.

Jess: It sucks.

Dan hosting: Here’s what’s coming next: 

We’re gonna come back to Emily’s story– and mine. There’s a POSSIBLE less-sucky option for Emily — it’s gonna take some doing — and in every case: 

We’re looking closely at the options we DO have. Going through all that paperwork is not fun, but the details we found buried there are gonna make a HUGE difference  

We knew where to find them because we’ve been doing this — looking at the puzzle of shopping for health insurance — for a lot of years now. 

We’ll walk you through some of what we did, and recap some of what we’ve learned over all this time.

That’s coming right up.

This episode of An Arm and a Leg is produced in partnership with KFF Health News — that’s a nonprofit newsroom covering health issues in America. These folks are incredible journalists — their work wins all kinds of awards, every year. We are honored to work with them.

Let’s go back to my house for starters. As you may recall, our plan for next year is gonna cost about 500 dollars more every month. That’s 6 thousand dollars for the year.

And Devorah and I were processing.

Devo: I mean… 

Dan: It’s a lot.

Devo: That’s a lot of money. 

Dan: It’s a lot of money. 

Devo: And that’s just like additional money. Like we’re already hemorrhaging money on health insurance, like before it goes up $6,000. 

Dan: Right? Right. We’re already paying a lot. We’re already paying a lot, and so we’re looking at adding $6,000 to that and… 

Devo: Can I have a different timeline?

Dan: Yeah, we’d all like that. Right now there are alternatives. Um, they’re not great. 

Devo: Okay. 

Dan hosting: Our broker had sent us a couple other plans to look at. And they were a little less: Instead of 2600 dollars a month,

Dan: …They take it down to about 2300.

Devo: Okay. 

Dan: But by paying $300 less, we pay more for things like office visits, which we use a fair amount of, um, to see therapists and stuff like that.

Dan hosting: I mean, look: ?You think I could make a show like this without some serious support for my mental health?

One reason we’re looking at these super-expensive plans is: our therapists accept them. The co-pays to see them for the “less-expensive” plans were much higher — it ate up all the savings. I had a whole little spreadsheet.

And I was hoping Devorah would be like, “Wow, you’re so good at math!” But she was looking at those totals for the full year and doing her own math.

We’ve got a kid who’ll be applying to college next year, and Devorah’s been using a tool called the “net price calculator” — looks at a bunch of factors, and gives an estimate of what we’d probably pay after any financial aid. 

Devorah was mentally comparing what she’d seen there to what my spreadsheet said we’d be paying for health care next year.

Devo: Do you know that this looks exactly like what the net price calculator says we might pay for college in a year? No, I’m serious. 

Dan: I know you’re serious. 

Devo: I’m like writing the net price calculator with our income and it’s coming out with like almost the exact number you’re saying we could pay on healthcare.

Dan: Yes, that’s right. And this is… 

Devo: that’s insane. 

Dan: And this, right. Well, and this is, the big number to look at next is deductible. And that’s where things get very different. 

Dan hosting: Especially because all of these plans — the “cheaper” ones and our current one–had a feature I’d never noticed before: *family* deductibles. A kind of safety valve where if one person’s expenses passes a certain point, insurance kicks in for the whole family. 

On the quote-unquote “cheaper” plans, those family deductibles were five thousand, even ten thousand dollars more.

I mean, I hope we don’t end up in that kind of territory. The deductibles on our current plan are already in the thousands of dollars. But if we ever got there, I’d sure want to stop the bleeding five thousand dollars sooner.

Devo: I kind of am leaning towards 

Dan: Yeah. Keeping what we have. 

Devo: Keeping what we have.

Dan: Right? Yeah. It’s weird because I’m like, wow, but that’s 

Devo: $6,000 more a year. Okay. Okay. I’m gonna go take some deep breaths now. 

Dan: Yeah, 

Devo: I don’t like it. 

Dan: No, me either. Sorry. Thank you for joining me with this. I’m sorry. Super sucks.

Dan hosting: It does — and six thousand dollars is a LOT of money for us. But it turns out, those “alternative” plans don’t save us any money, and they leave us potentially on the hook for thousands and thousands of dollars more.

So I am taking this as a win. And it’s the lesson: If there’s ANY way to look beyond the monthly premium, you gotta do it. 

Read the fine print! If you’ve got ongoing health care stuff — or stuff you’re GONNA do next year, like, I dunno, have a kid? — price it out for any plan you’re considering.

Learn the stupid vocabulary: Deductible. Out of pocket max. This time around, I actually learned a new one: FAMILY deductible.

And then we get back to Emily’s case. Which actually has a happier side to it. Especially after we read some fine print.

Emily, we left you with Elisabeth Benjamin. She had a couple of options for you.

Emily hosting:  Yeah. I could either re-enroll in what I have now for 867 dollars a month. Or get a plan with a slightly cheaper premium with even crummier coverage. No matter what, I’m looking at paying a way bigger percentage of my income on health insurance.

Dan hosting: Yeah, because you’d lose the subsidy you have now. But my guy Kurt, my insurance broker, 

Emily hosting: Kurt! 

Dan hosting: He says there’s another way: If I can bring you on at 30 hours a week — versus now you’re at 20 hours — then Blue Cross of Illinois would consider you a full-time employee, eligible for ben efits with An Arm and a Leg. And.. you, know, I’m working on it…

Emily hosting: I know. I know you are.

Dan hosting:  Yeah so, toward that end, Kurt has sent me a couple of plans that you could enroll in. And like even if you had to pay the whole premium, they’re less than these New York plans. One’s like six hundred, the other is about six-ninety.

But the question is: Does that really save you money? It depends on what they  cover. I dug up the spreadsheet Kurt had sent me.? And we looked at it together on Zoom last week. 

I’ll put it in the chat.

Emily: Okay

Dan: so the first number is, let’s just look

Emily: Wait I’m putting I gotta put Zoom on, uh, 200% here.

Dan: Yeah, yeah. You for sure. 

Emily: …cuz they’re little. Okay, okay. 

Dan: So. This number really pops out at me, what is the overall deductible? It seems to say $850 deductible. 

Emily: Mm-hmm Mm-hmm .

Dan: Sounds pretty good. Sounds a little like, is that a typo?

Emily hosting: OK- lower premium, lower deductible. What about my copays? Remember – my New York marketplace options have zero dollar copays for insulin and diabetes supplies. 

Dan: This would be one where we would like, have to do a little more digging to figure out what your out OFP pocket would be.Let me see what I can find out. Lemme see what I can… 

Emily: Yeah I mean like the advice that we were giving people like— contact your HR department. It’s like, Dan are you the HR department? 

Dan: I am, I am. So I’m like, yeah, let’s do this. Let me, this is gonna take a 

Emily: Yeah yeah.

Dan hosting: Honestly, it took forever. We spent another twenty minutes on that call, trying to get information from my Blue Cross website, and then from Google. Which ended up sending us to Facebook group discussions and Reddit threads. 

Emily, you took some time on her own– OK a lot of time– you called your insurance, and your pharmacy, and I forget who else– and ultimately, with your incredible Google skills, you found the document we needed: The 2026 formulary for Illinois Blue Cross plans.

Emily hosting: Yes, the formulary. That’s an insurance company’s list of ALL THE DRUGS they cover–  and what you’d pay for each one. If you’re a First Aid Kit newsletter subscriber, you know we just wrote about them last week. Ok, so we started off looking for my continuous glucose monitor supplies.

At first, it looked like: They were gonna be kind of expensive. $60 a month. But there were little letters off to the side– one was CW, which seemed to stand for “cost waived.” We hit Control-F…

Dan: Okay. So that’s here. It says, uh, cost waived – CW –Medicines marked with a CW in the coverage requirements and limits column are mandated in the state of Illinois to have $0 member cost.

Emily: Hey.

Dan: Yeah, right. Yeah.

Emily hosting: Next… we looked up my insulins.And I do have a copay there – $85 a month, which is unfortunately pretty normal. And so this plan was still looking like a winner. Because of that lower deductible. And then — after we did one more round of due diligence — we figured out — it was even better than we initially thought.

Dan hosting: Yeah, we downloaded another set of paperwork. Every plan has a document called the Summary of Benefits and Coverage, so we grabbed those. With the New York plans, those documents confirmed: you would have to pay out that whole deductible before seeing a doctor. Then we looked at that same document for this Illinois plan. And found THIS:

Dan: If you visit a healthcare provider’s office, primary care to treat an injury or illness, deductible does not apply.

Emily: Hell yeah.

Dan: Yeah. Whew. All right. That seems like a good deal.

Emily: Yeah. Yep. Exactly.

Dan: All right, cool. This is excellent. Okay. So I think what we’ve found through our sleuthing, your sleuthing is, yeah, this is a better deal and it’s all in the fine, it’s all in the fine print.

Emily: It is, yeah.

Dan: Yeah. Alright. All right. Well this is good. I feel like we are like, now all you gotta do is raise money to bring you on for the extra hours and you know, but like we’ve done the hard part.

Emily: Yeah, yeah, exactly. Exactly. We’ve deciphered, um, insurance lingo…

Dan: Oh my God.

Emily: …and now we just have to pass a hat around, so.

Dan: Let’s do it. 

Dan hosting: So, OK, we have modeled some stuff for you here:

If there’s medical stuff you know you’re gonna need: Look beyond the monthly premium.

Look at that Summary of Benefits and Coverage. Look for the drug formulary. Read the fine print. Use Control-F. Make calls. 

And we have a ton of resources to help you keep the whole thing straight: We’ve covered this stuff before, in depth, in our First Aid Kit newsletter, and on the podcast — and we’ve collected the most-important, most-useful stuff, and organized it into a Starter Pack on our website.You’ll find a link wherever you’re listening to this.

And look: there are people for whom NONE of this gets you to something workable. The spikes in health insurance premiums, and the lower subsidies, they mean a lot of people are just stuck.

The folks at NPR talked with a woman last week who’s in the middle of cancer treatment. Her health insurance is scheduled to jump from three hundred some dollars a month to like 12 hundred dollars. Which she absolutely cannot afford.

There will be people looking to take advantage of this whole crunch: Pitching junk insurance plans and other “bargains” that don’t actually cover enough.

And there will be a lot of people facing bills they just cannot pay. Medical debt — and aggressive debt collections — all of that is gonna hit even more people.

Which, honestly, is why it’s so important for us to keep doing this work. Together. So many people are going to be in so much need in the coming year — years.

Everything we can learn about fighting unfair bills, applying for financial assistance, avoiding ripoffs, and HELPING EACH OTHER. We’ve gotta keep spreading it around.

And to do all of that: We need your support. For example: yes I want Emily to have more hours so she can have insurance, but I need more of her time because we’ve got so much work to do. 

So yeah, we need your help.

And this is the ABSOLUTE best time to help us. Through the end of the year, the NewsMatch campaign from the Institute for Nonprofit News is matching donations of up to a thousand dollars.

And if you’re catching this in November, well: Through the end of the month, because of a special matching fund from the Jonathan Logan Family Foundation, those donations are DOUBLE-matched. 

You give us a hundred dollars, and in November, it gets turned into three hundred dollars. 

And lots of you have been taking advantage of this opportunity in the last few weeks. It’s amazing.

And some of you have been adding notes. Kimberly from Texas wrote: “Thank you for all your hard work! I feel surrounded by support knowing you, your (tiny) team, and all your listeners are out there, caring so much.”

Kimberly, thank YOU so much.

OK: The place to go is arm and a leg show dot com, slash support.

Arm and a leg show dot com, slash, support.

We’ll have a link wherever you’re listening. Everything you give gets matched. Let’s do this now.

Thank you SO much. Arm and a Leg show dot com, slash, support.

We’ll be back with another episode soon. Till then, take care of yourself.

This episode of An Arm and a Leg was produced by Emily Pisacreta and me, Dan Weissmann, with help from Claire Davenport — and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Sarah Ballema is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

 Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news station.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially.

You can join in any time at arm and a leg show, dot com, slash: support.

And in fact:  Here are the names of a few people who have pitched in for this year’s NewsMatch campaign. 

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. You can also follow the show on FacebookInstagramLinkedIn, and Bluesky. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

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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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KFF Health News chief Washington correspondent Julie Rovner discussed Affordable Care Act subsidies on Crooked Media’s What a Day on Dec. 10 and on Slate’s What Next on Dec. 9.

KFF Health News Washington health policy reporter Amanda Seitz discussed the cost of insurance on Illinois Public Media’s The 21st Show on Dec. 10.

KFF Health News Nevada correspondent Jazmin Orozco Rodriguez discussed Native Americans and the Rural Health Transformation Program on The Daily Yonder’s The Yonder Report on Dec. 3.

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David Garza a veces siente que no tiene seguro médico, por lo caro que le cuesta tratar su diabetes tipo 2.

Su prima mensual de $435 por la cobertura familiar es casi igual a la del seguro de su trabajo anterior. Pero el plan de salud de su empleo actual tiene un deducible anual de $4.000, que debe pagar de su bolsillo antes de que el seguro comience a cubrir los gastos médicos de su familia cada año.

“Ahora todo es el precio total”, dijo este hombre de 53 años, que trabaja en un almacén al sur del área de Dallas-Fort Worth. “Ha sido un poco difícil”.

Para reducir sus gastos, Garza cambió su medicamento para la diabetes por otro más económico y dejó de usar el monitor continuo de glucosa que controlaba sus niveles de azúcar en sangre. Desde que empezó en este trabajo hace casi dos años, comentó, su nivel de hemoglobina A1c ha ido subiendo: pasó del 7% o menos —el objetivo recomendado— a un 14% en su visita médica más reciente, en noviembre.

“Mi A1c está por las nubes porque técnicamente ya no estoy usando el medicamento correcto como antes”, lamentó Garza. “Estoy tomando lo que puedo pagar”.

Los planes con deducibles altos —es decir, la cantidad que los pacientes deben abonar por la mayoría de los servicios médicos antes de que el seguro se haga cargo— se han vuelto cada vez más comunes.

En 2024, la mitad de los empleadores ofreció este tipo de cobertura, comparado con el 38% en 2015, según datos federales. Estos planes también están disponibles a través del mercado de seguros de la Ley de Cuidado de Salud a Bajo Precio (ACA).

Con los aumentos en las primas del mercado de ACA para el próximo año y la posible finalización de varios subsidios a fin de 2025, más personas enfrentan decisiones difíciles al comparar el costo mensual de las primas con los deducibles. Para poder pagar un seguro, algunas personas optan por planes con primas bajas pero deducibles altos, apostando a que no tendrán crisis médicas.

Pero estos planes representan un reto particular para quienes viven con enfermedades crónicas, como los 38 millones de personas que tienen diabetes tipo 1 o tipo 2 en Estados Unidos.

Según un estudio publicado en 2024, los adultos con diabetes que, involuntariamente, pasan a un plan con deducible alto enfrentan un 11% más de riesgo de hospitalización por infarto que quienes tienen otro tipo de cobertura. También tienen un 15% más de peligro de derrame cerebral y más del doble de probabilidad de quedar ciegos o desarrollar enfermedad renal en etapa terminal.

“Todas estas complicaciones son prevenibles”, señaló Rozalina McCoy, autora principal del estudio.

Atención vs. costo

El objetivo inicial de los planes con deducibles altos era fomentar mejores decisiones al buscar atención médica, explicó McCoy, profesora asociada en la University of Maryland School of Medicine, en College Park.

Pero mientras que alguien con un dolor de oído insoportable buscará atención médica, dijo, quienes tienen niveles de azúcar en sangre fuera de control tal vez no sientan la misma urgencia —a pesar del posible daño a largo plazo— debido al fuerte impacto financiero.

“No hay síntomas hasta que ya es demasiado tarde”, dijo. “Y en ese punto, el daño es irreversible”.

En promedio, la atención médica para personas con diabetes cuesta $12.022  al año, según un análisis de datos de 2022. La diabetes tipo 2, que es la forma más común, se diagnostica cuando el cuerpo deja de producir suficiente insulina o no la utiliza de forma adecuada, lo que dificulta controlar el nivel de azúcar en la sangre.

En la diabetes tipo 1, el cuerpo no produce insulina. Las personas con esta enfermedad deben cubrir no solo el costo de la insulina y otros medicamentos, sino también el de los equipos necesarios para su atención.

Mallory Rogers calcula que gasta unos $1.200 al mes en el tratamiento de su hija Adeline, de 6 años, que tiene diabetes tipo 1. Ese monto incluye insulina, una bomba de insulina y un monitor continuo de glucosa. No están contemplados los suministros de emergencia que se requieren si alguno de estos dispositivos falla: otro tipo de insulina, tiras para medir la glucosa en sangre y dos frascos de un aerosol nasal que cuesta casi $600 y debe reponerse al menos una vez al año.

“Si no tuviera insulina, estaría en una situación de emergencia en menos de dos horas”, explicó Rogers, consultora en tecnología que vive en Sanford, Florida. La mujer ha estado ahorrando para cuando su hija tenga que usar el plan de salud con deducible alto que ofrece su empleador, que alcanza los $3.300 para la cobertura familiar.

Decisiones impositivas

Muchos planes de seguro vienen con deducibles cada vez más altos. Pero para que un plan se considere oficialmente de “deducible alto” —y así pueda ofrecer una cuenta de ahorros para gastos médicos (HSA)— el deducible en 2026 tiene que ser de al menos $1.700 para cobertura individual y $3.400 para cobertura familiar, según las reglas del IRS.

En 2026, quienes tienen acceso a una cuenta de ahorros para la salud (HSA) a través de su plan o de su empleador pueden obtener beneficios fiscales aportando hasta $8.750 por familia o $4.400 por persona, si es que pueden pagarlo. El empleador de Rogers aporta $2.000 a lo largo del año, y el de Garza contribuye con $1.200.

Rogers reconoce que ha tenido suerte: ha logrado ahorrar $7.000 en su cuenta HSA para cuando el seguro de su hija se transfiera a su plan.

“Agregar una carga financiera a una condición médica ya de por sí estresante, me parte el corazón”, dijo al pensar en quienes no pueden ahorrar lo mismo. “Nadie pide tener diabetes, ya sea tipo 1 o tipo 2”.

En 2024, el deducible promedio en los planes de empleadores fue de $2.750, pero pueden superar los $5.000, según George Huntley, director ejecutivo del Diabetes Leadership Council y de la Diabetes Patient Advocacy Coalition.

Cuando los deducibles son demasiado altos, aseguró Huntley, lo primero que la gente empieza a recortar es el tratamiento básico: “No toman el medicamento que deberían tomar para controlar la glucosa. Racionan la insulina, si ese es su caso. Toman las pastillas día por medio”.

Garza sabe que debería hacer más para controlar su diabetes, pero su situación económica no se lo permite. Su seguro anterior cubría un tipo más novedoso de medicamentos para la diabetes, conocidos como agonistas de GLP-1, por $25 mensuales. También cubría sin costo sus otros medicamentos, como los de la presión arterial y el colesterol, y su monitor continuo de glucosa.

Con su nuevo seguro, paga $125 mensuales por la insulina y otros medicamentos. Solo ve a su endocrinólogo dos veces al año.

“Quiere verme cada tres meses”, comentó Garza. “Pero le dije que no es posible a $150 la consulta”.

Además, generalmente necesita exámenes de laboratorio antes de cada visita, los que le cuestan otros $111.

El año próximo, el deducible promedio de un plan Plata en el mercado de ACA será de $5.304, sin reducciones de costos compartidos, según un análisis de KFF. Para un plan Bronce, el promedio será de $7.476.

Una visita médica anual y algunos exámenes preventivos, como una mamografía, estarán cubiertos sin costo para el paciente.

Además, quienes comparan planes —ya sea a través de su empleador o del mercado de seguros— deben tener en cuenta cuál es su gasto máximo de bolsillo anual, que se sigue aplicando incluso después de cubrir el deducible, explicó Huntley.

Por ejemplo, el plan familiar de Garza requiere que él pague el 20% de los costos hasta llegar a los $10.000.

Dado que sus niveles de azúcar están tan elevados, el doctor le recetó una insulina de acción rápida para usar con las comidas, que cuesta $79 adicionales al mes. Garza planeaba surtir esa receta en diciembre, cuando solo debería pagar el 20% del costo: ya cumplió su deducible pero aún no alcanzó su máximo de bolsillo.

A Garza le gusta su trabajo a pesar del plan de salud, y dijo que nunca ha faltado ni un día, ni siquiera recientemente, cuando tuvo un virus estomacal. Hacia finales de 2025, seguía sin decidir si inscribirse o no en el seguro médico cuando llegue el período de afiliación de su compañía, a mediados de 2026.

Le preocupa que dejar el seguro ponga en riesgo a su familia si se presenta una emergencia médica. Sin embargo, comentó, podría usar el dinero que ahora paga en primas mensuales para cubrir directamente su atención médica y así controlar mejor su diabetes.

“Para serle honesto, me siento atrapado”, concluyó.

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When Su Wang was in medical school, she donated blood. That’s when she learned she was infected with hepatitis B, a virus that attacks the liver and can lead to cancer and death decades later.

“I was 18, healthy, in college,” she said. “And suddenly I had a chronic illness I didn’t even know about.”

Born in Florida in 1975, Wang grew up before the hepatitis B vaccine was routinely given to newborns. For years, she assumed she had been infected by her mother, only to discover later that both her parents were negative. “It turns out my grandparents, who cared for me after birth, probably passed it to me,” she said. “That’s how easy this virus spreads — not from some exotic risk factor, just family.”

Today, Wang is the medical director for viral hepatitis programs at RWJBarnabas Health in New Jersey. Her story now sits at the center of a historic turning point in public health.

On Dec. 5, the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices voted to end the universal U.S. recommendation for the newborn dose of the hepatitis B vaccine, instead adopting a policy urging individual-based decision-making.

Under the new approach, only infants born to mothers who test positive for hepatitis B will automatically receive a dose of the vaccine and hepatitis B antibodies shortly after birth. For everyone else, if the parents choose to vaccinate, the birth dose can be delayed until 2 months of age.

All the committee members were appointed by Health and Human Services Secretary Robert F. Kennedy Jr., a longtime anti-vaccine activist. In an 8-to-3 vote, the panel decided that since most pregnant women now receive hepatitis B testing, administering the vaccine at birth should be reserved for infants whose mothers test positive. They framed the shift as a way to reduce interventions deemed unnecessary, align vaccination with test results, and give parents more control over timing. Supporters of the decision described it as a move toward parental choice rather than a reflection of changing epidemiology.

But to many clinicians and epidemiologists, the change represents a dangerous rollback that could reverse three decades of progress toward eliminating a disease that still infects as many as 2.4 million Americans and kills tens of thousands each year. They see echoes of the 1980s, when risk-based vaccination left entire generations unprotected, and worry the country is about to repeat that mistake.

Moreover, the panel’s move on hepatitis B — in the face of overwhelming data that shows the birth dose is effective and safe — portends further upheaval for the nation’s childhood vaccine schedule, a cornerstone of public health.

“They’re not just trying to change one vaccine,” said Angela Rasmussen, a virologist and an editor of the scientific journal Vaccine. “They’re trying to dismantle how vaccine policy is made.” 

Department of Health and Human Services spokesperson Emily Hilliard responded: “ACIP reviews all evidence presented and issues recommendations based on evidence and sound judgment to best protect America’s children.”

The authors of a new independent review by the Vaccine Integrity Project, which evaluated more than 400 studies and reports, warned in a public comment that delaying the birth dose “would reduce protection for infants and increase the risk of avoidable HBV infections, undermining decades of progress” toward eliminating the hepatitis B virus. The review was led by researchers at the University of Minnesota’s Center for Infectious Disease Research and Policy, which created the Vaccine Integrity Project in response to what it regards as Trump administration actions that “put the federal vaccine landscape at risk,” and it was vetted by outside experts.

“We fought hard for that universal birth dose because targeted approaches missed too many babies,” Wang said. “We know what happens when you wait.”

What’s unfolding now is not just a technical policy update but a fundamental test of the systems meant to protect the most vulnerable. The debate turns on a few critical questions — whether testing is reliable enough to replace universal safeguards, how infectious hepatitis B truly is, why past strategies failed, and what the CDC’s internal shake-ups mean for vaccine policy writ large.

The Limits of Testing

Hepatitis B testing sits at the center of the new ACIP recommendation, but even the CDC acknowledges that testing alone can’t guarantee protection. Pregnant women may test negative if the virus was acquired late in pregnancy or during the “window period,” before hepatitis B surface antigens become detectable. False negatives happen. No testing system, no matter how well designed, can catch every infection. That’s why universal vaccination was created in the first place.

If a mother’s status is unknown at delivery, hospitals are supposed to give the newborn a hepatitis B vaccine within 12 hours, adding hepatitis B antibodies for premature infants or if the mother later tests positive. But in real clinical settings, these safeguards routinely break down. Results take time. Nurses miss or misread labs. Pharmacies delay deliveries. Documentation gets lost.

“Every step you add increases the chance that something falls through the cracks,” Wang said. “Delaying the vaccine just adds another.”

ACIP’s vote shows how that logic is being challenged.

Some committee members suggested dropping the third hepatitis B shot if antibody levels look high after the second. 

But Brian McMahon, a liver disease specialist who has spent decades treating hepatitis B, told the panelists that the data doesn’t support that idea. “Only maybe 20% to 30%” of infants have an adequate antibody level after the first dose, he said.

“You need two doses to really reach a high level of protection,” he said, with the third shot giving a stronger, longer-lasting response.

He said the overall message coming from the committee seemed designed to “discourage the birth dose.”

“They’re making it more and more difficult,” McMahon said.

In a second vote, ACIP also encouraged parents and clinicians to order post-vaccine serology tests — blood tests that measure protective antibody levels — after the second or third dose. The tests, ACIP said, should be covered by insurance.

More Infectious Than HIV or Hepatitis C

Hepatitis B can survive on toothbrushes, razors, and household surfaces for a week. It spreads not just from mother to child but also through ordinary family contact: shared items, open sores, small blood exposures. In the 1980s, researchers found that about half of infections in American children came not from mothers but from other household members.

That’s why state health departments continue to insist that every newborn be vaccinated within 24 hours of delivery, regardless of maternal status. “Delaying vaccination misses a crucial period of potential exposure,” a New York advisory warned this year. The vaccine, it noted, is 80% to 100% effective when given on time.

The Vaccine Integrity Project report underscores the stakes. Since the universal birth dose was introduced in 1991, pediatric hepatitis B infections in the U.S. have dropped by more than 99%. A 2024 CDC analysis estimated that the current schedule has prevented more than 6 million hepatitis B infections and nearly 1 million hospitalizations.

The benefits are lifelong. Infants vaccinated at birth are shielded not just from hepatitis B but also from the liver failure and cancer it can cause decades later. Yet because the disease unfolds slowly, the consequences of policy shifts may not surface for 20 or 30 years.

Trieu Pham, a California physician, doesn’t need to imagine those consequences. Born in Vietnam in 1976, he probably contracted the virus at birth. “If the vaccine had existed then, I wouldn’t have gone through what I did,” he said. Diagnosed in his 20s, he developed cirrhosis by 40. At 47, he was coughing blood from ruptured esophageal veins. Eventually, he required a liver transplant to survive.

“You live with this constant fatigue and fear,” he said. “And the saddest part is it was preventable.”

His three children, all vaccinated within hours of birth, are free of hepatitis B. “That’s the difference a day can make,” Pham said.

A Lesson Already Learned

In 1982, ACIP recommended the new hepatitis B vaccine only for adults at high risk: health care workers, injection drug users, and men who have sex with men. But by the late 1980s, it was clear that risk-based vaccination couldn’t contain transmission. Many newly infected adults didn’t fit any defined risk group. Identifying high-risk people proved imperfect, stigmatizing, and ultimately ineffective.

Meanwhile, infants infected during or shortly after birth had a 90% chance of developing chronic infection, compared with less than 5% in adults. Yet public health officials repeated the same targeted strategy, this time with newborns. In 1988, the CDC recommended universal prenatal screening and linked an infant’s vaccination to the mother’s test result, again basing protection on a risk marker instead of vaccinating all infants.

As before, it failed. Many infected mothers weren’t correctly identified. Some were never tested, some were tested too early, and others had results that were misread or never communicated. Too many infants slipped through the cracks, proof that another targeted approach couldn’t reliably protect them.

In 1991, the CDC issued its landmark guidance recommending that all infants, regardless of their mother’s infection status, receive a hepatitis B vaccine at birth, followed by two additional doses in infancy. By 2005, the policy was fully embedded in the routine immunization schedule, then reaffirmed in 2018. This evolution was based on data showing that a universal strategy, rather than a targeted one, was the most effective in preventing infections.

A Matter of Trust

The CDC’s new hepatitis B policy rests on the premise that moving the decision to parents will strengthen trust in the vaccine system. Supporters frame it as an empowerment shift — a way to give families more control.

In 1999, when it was last recommended to postpone the first dose of hepatitis B vaccine for infants born to uninfected mothers, vaccination rates also dropped among infants born to those who were infected.

“Opt-in policies sound patient-centered,” Wang said, “but in practice they’re inequitable. They leave behind the very families who need protection most” — the ones most likely to miss prenatal care and testing, have infections that go undetected or arise after testing, or slip through gaps in hospital care, as well as infants who can be exposed and infected by other caregivers and household members.

Those are often immigrant families, including from Asian and Pacific Islander communities in which hepatitis B remains endemic. “We already underdiagnose and undertreat these populations,” Wang said. “This change would deepen that gap.”

The United States is now the only country to abandon a universal hepatitis B birth dose recommendation. Though it will take decades to gather outcomes data, some researchers predict that delaying the first dose of hepatitis B vaccine to 2 months of age could result in over 1,400 preventable infections and about 300 cases of liver cancer per year.

“We don’t get to choose what we inherit,” Wang said. “But we do get to choose what we pass on.”

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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LISTEN: “People get better care when we know who they are.” That belief is at the heart of why scientists and LGBTQ+ health advocates oppose a new rule that makes it harder to collect data on trans patients with cancer. KFF Health News correspondent Rachana Pradhan appeared on WAMU’s Health Hub on Dec. 10 about the change from the Trump administration.

In 2026, the Trump administration will require U.S. cancer registries that receive federal funding to classify patients’ sex as male, female — 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.

KFF 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.

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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Florida resident Keith Jones says his Affordable Care Act insurance plan was changed multiple times this year without his permission. Now the 52-year-old is struggling with his health problems while facing large premium bills he says he shouldn’t owe.

The third time, he sought help from an insurance agent, who got Jones on the phone with the federal healthcare.gov call center to sort things out. During that call, “literally, there was someone opening a new policy without my consent,” Jones said.

Despite new rules that went into effect in mid-2024 aimed at thwarting such unauthorized ACA changes, it’s still happening, said Florida-based agent Jason Fine, who is trying to help Jones and dozens of other clients unravel such switches.

The Government Accountability Office, an independent government watchdog, on Dec. 3 issued a sharply critical, though preliminary, report saying that years of similar GAO warnings to federal officials have not produced results needed to better protect against ACA enrollment fraud. Alarms were raised during the Obama and Biden administrations, as well as the first Trump administration.

There were more than 275,000 complaints to the Centers for Medicare & Medicaid Services about unauthorized ACA enrollments and plan-switching in 2024, according to the agency, which also administers Obamacare coverage.

“The absolute bottom line is nothing has changed in terms of risk,” Seto J. Bagdoyan, a co-author of the GAO report, said in an interview with KFF Health News. Bagdoyan is the director of audit services for the agency’s Forensic Audits and Investigative Service team.

The report landed as Congress continues to be embroiled in the issue of whether to extend the more generous tax subsidies that have given consumers extra help paying their Obamacare premiums in recent years. Some ACA critics have said the subsidies fuel enrollment fraud.

Citing fraud concerns, GOP lawmakers included measures in their One Big Beautiful Bill Act that will make it harder to enroll in ACA plans in future years, such as requiring additional eligibility verification. But lawmakers have not adopted legislation introduced by Democrats to impose criminal penalties on brokers who knowingly submit false information on ACA enrollments.

“None of the Republicans making political hay out of this report have co-sponsored that legislation or offered any similar measures,” Sen. Ron Wyden (D-Ore.) said in a statement to KFF Health News. Wyden is one of the sponsors of the legislation.

The GAO inquiry, during which investigators attempted to submit enrollments using false information, was requested more than a year ago by Republicans from three House committees: Energy and Commerce, Judiciary, and Ways and Means.

The lawmakers asked for findings that could be made public now, even though the final report and any recommendations it will contain won’t be completed until the spring or summer of 2026. A hearing to consider the findings was set by House members for Dec. 10.

The report notes that federal officials estimate that $124 billion in tax subsidies were paid in 2024 for nearly 20 million ACA enrollments.

It highlighted some stunning findings. One Social Security number, for instance, was found to have been used for 125 policies in 2023.

However, the number of policies flagged as potentially compromised by rogue sales agents was far smaller than the estimates of some of the program’s biggest critics. The GAO identified about 160,000 cases in 2024, or 1.5% of the ACA applications. Some conservative analysts have broadly estimated that unauthorized enrollments that year numbered in the millions, a finding that has drawn pushback from groups representing insurers, brokers, and hospitals.

The GAO report does not quantify how much fraud there is, Bagdoyan said: “What it’s focusing on are indicators of potential fraud.”

CMS Anti-Fraud Efforts Fall Short

By October 2024, following consumer complaints, CMS suspended about 850 insurance brokers over questions about whether they had been involved with unauthorized enrollment. All were eventually reinstated, CMS told the GAO in May. Also last October, the GAO submitted the first four of its fake applications, seeking coverage for the final months of the year.

A few months earlier, in July 2024, CMS began requiring three-way calls with consumers, the marketplace, and their agents for certain types of changes, such as plan switches. Unauthorized plan-switching nets rogue agents a sales commission, and it can also lead to problems for consumers, such as losing access to their doctors or facing tax bills if they were improperly enrolled with subsidies, as KFF Health News reported in 2024.

However, the GAO reported that many agents told them those rules had a lot of loopholes, such as the federal marketplace taking only “limited steps to verify the identity of the consumer on the three-way call,” for instance asking only for publicly available information such as a name and date of birth.

Also, new ACA applicants were exempt from the three-way call rule, which leaves open the possibility of agents saying it’s a new consumer when it isn’t.

“The three-way call is something CMS has promoted,” Bagdoyan said. “It’s better than nothing, but as we point out in the report, it could be easy to overcome by an unscrupulous broker who starts the process from scratch. Or they could impersonate.”

Fine, the agent in Florida, said he alone has filed dozens of complaints with federal and state officials, often showing clients’ records being accessed or changed by multiple agents, sometimes on the same day, even after the CMS rules on plan-switching went into effect.

In one such fraud complaint, Fine listed three marketplace applications tied to one client’s name in which other agents had changed his coverage and included false income information. The client didn’t recall talking with any of those other agents, Fine wrote.

A marketplace representative who was helping Fine restore that client’s coverage told Fine that he often hears agents pretending to be the consumer, sometimes even faking the voice of an opposite-sex person.

Rogue agents can fake it because questions asked by marketplace representatives to verify identity “are from the application: the person’s name, date of birth, and address,” Fine said. “That’s the ID proofing. It’s a joke.”

Asked about the effectiveness of the three-way call rule and about reports of impersonations, CMS spokesperson Catherine Howden said in a statement that “rooting out waste, fraud, and abuse is one of Dr. Oz’s top priorities,” referring to CMS Administrator Mehmet Oz. The agency “takes allegations of fraudulent or abusive conduct seriously and acts swiftly when concerning behaviors are identified or reported,” she added.

Ronnell Nolan, the president and CEO of the insurance broker lobbying group Health Agents for America, said: “Three-way calling is a bust. It needs to go away.”

Instead, she has long called for two-factor authentication, similar to systems used in banking and other industries, to ensure the person making the change is actually the policyholder or their agent.

That hasn’t happened on the federal marketplace, where the problems with unauthorized switching are concentrated.

In the 20 states, along with the District of Columbia, that run their own ACA marketplaces, such issues are not common. States say that’s because they require more types of authentication — and they also generally use their own websites for sign-ups.

Bagdoyan said the GAO report did not consider what the states might be doing differently.

“That was beyond our scope,” he said.

Devilish Details

The 26-page document outlines the GAO’s probe, in which investigators filed 20 fake enrollments, some through insurance brokers, spanning 2024 and 2025 coverage. Most were approved, even with counterfeit documents.

One attempted application was dropped by investigators when the broker stopped responding — the brokers did not know they were part of the investigation — and another was rejected by the federal marketplace after five months of coverage when required documents were not submitted. But 18 of the plans remain in place and subsidies are being sent to insurers to cover the fake people, according to Bagdoyan.

The investigation also included an analysis of enrollment data from 2023 and 2024 looking for things such as multiple uses of the same Social Security numbers, dead people’s numbers, and cases in which three or more agents submitted enrollment actions for the same person and start date, potentially indicating fraud.

Similar investigations using the filing of fictious enrollments were conducted by the GAO in earlier undercover work that began in 2014, at the start of the ACA.

The new report said that while CMS assessed fraud risks in 2018, it has not updated its assessment since then, even as enrollment in the ACA has grown significantly.

“We have documentary evidence that whatever it is they did, obviously it hasn’t worked,” Bagdoyan said, “because we encountered the same issues as 12 years ago, having to do with identity verification.”

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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Sarah Monroe once had a relatively comfortable middle-class life.

She and her family lived in a neatly landscaped neighborhood near Cleveland. They had a six-figure income and health insurance. Then, four years ago, when Monroe was pregnant with twin girls, something started to feel off.

“I kept having to come into the emergency room for fainting and other symptoms,” recalled Monroe, 43, who works for an insurance company.

The babies were fine. But after months of tests and hospital trips, Monroe was diagnosed with a potentially dangerous heart condition.

It would be costly. Within a year, as she juggled a serious illness and a pair of newborns, Monroe was buried under more than $13,000 in medical debt.

Part of the reason: Like tens of millions of Americans, she had a high-deductible health plan. People with these plans typically pay thousands of dollars out of their own pockets before coverage kicks in.

The plans, which have become common over the past two decades, are getting renewed attention thanks to President Donald Trump and his GOP allies in Congress.

Many Republicans are reluctant to extend government subsidies that help cover patients’ medical bills and insurance premiums through the Affordable Care Act.

And although GOP leaders have yet to coalesce around an alternative, several leading Republican lawmakers have said Americans who don’t get insurance through an employer should get cash in a special health care account, paired with a high-deductible health plan. In such an arrangement, someone could choose a plan on an ACA marketplace that costs less per month but comes with an annual deductible that can top $7,000.

“A patient makes the decision,” Sen. Bill Cassidy (R-La.) said at a recent hearing. “It empowers the patient to lower the cost.”

In a post on Truth Social last month, Trump said, “The only healthcare I will support or approve is sending the money directly back to the people.”

Conservative economists and GOP lawmakers have been making similar arguments since high-deductible health plans started to catch on two decades ago.

Back then, a backlash against the limitations of HMOs, or health maintenance organizations, propelled many employers to move workers into these plans, which were supposed to empower patients and control costs. A change in tax law allowed patients in these plans to put away money in tax-free health savings accounts to cover medical bills.

“The notion was that if a consumer has ‘skin in the game,’ they will be more likely to seek higher-quality, lower-cost care,” said Shawn Gremminger, who leads the National Alliance of Healthcare Purchaser Coalitions, a nonprofit that works with employers that offer their workers health benefits.

“The unfortunate reality is that largely has not been the case,” Gremminger said.

Today, deductibles are almost ubiquitous, with the average for a single worker with job-based coverage approaching $1,700, up from around $300 in 2006.

But even as high deductibles became widespread, medical prices in the U.S. skyrocketed. The average price of a knee replacement, for example, increased 74% from 2003 to 2016, more than double the rate of overall inflation.

At the same time, patients have been left with thousands of dollars of medical bills they can’t pay, despite having health insurance.

About 100 million people in the U.S. have some form of health care debt, a 2022 survey showed.

Most, like Monroe, are insured.

Although Monroe had a health savings account paired with her high-deductible plan, she was never able to save more than a few thousand dollars, she said. That wasn’t nearly enough to cover the big bills when her twins were born and when she got really ill.

“It’s impossible, I will tell you, impossible to pay medical bills,” she said.

There was another problem with her high-deductible plan. Although these plans are supposed to encourage patients to shop around for medical care to find the lowest prices, Monroe found this impractical when she had a complex pregnancy and heart troubles.

Instead, Monroe chose the largest health system in her area.

“I went with that one as far as medical risk,” she said. “If anything were to happen, I could then be transferred within that system.”

Federal rules that require hospitals to post more of their prices can make comparing institutions easier than it used to be.

But unlike a car or a computer, most medical services remain difficult to shop for, in part because they stem from an emergency or are complex and can stretch over numerous years.

Researchers at the nonprofit Health Care Cost Institute, for example, estimated that just 7% of total health care spending for Americans with job-based coverage was for services that realistically could be shopped for.

Fumiko Chino, an oncologist at the MD Anderson Cancer Center in Houston, said it makes no sense to expect patients with cancer or another chronic disease to go out and compare prices for complicated medical care such as surgeries, radiation, or chemotherapy after they’ve been diagnosed with a potentially deadly illness.

“You’re not going be able to actually do that effectively,” Chino said, “and certainly not within the time frame that you would need to when facing a cancer diagnosis and the imminent need to start treatment.”

Chino said patients with high deductibles are often instead slammed with a flood of huge medical bills that lead to debt and a cascade of other problems.

She and other researchers found in a study presented last year that cancer patients who had high-deductible health insurance were more likely to die than similar patients without that kind of coverage.

For her part, Monroe and her family were forced to move out of their house and into a 1,100-square-foot apartment.

She drained her savings. Her credit score sank. And her car was repossessed.

There have been other sacrifices, too. “When families get to have nice Christmases or get to go on spring break,” Monroe said, hers often does not.

She is thankful that her children are healthy. And she continues to have a job. But Monroe said she can’t imagine why anyone would want to double down on the high-deductible model for health care.

“We owe it to ourselves to do it a different way,” she said. “We can’t treat people like this.”

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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