Por qué el sarampión, la tos ferina y otras enfermedades graves podrían resurgir con RFK Jr.

La disponibilidad de vacunas seguras y eficaces contra covid a menos de un año del inicio de la pandemia marcó un hito en los tres siglos de historia de la vacunación: comenzaba, aparentemente, una era de protección contra las enfermedades infecciosas.

Sin embargo, una reacción generalizada contra las intervenciones del estado en la salud pública permitió que el presidente electo Donald Trump nombrara a Robert F. Kennedy, el más conocido activista antivacunas del país como máximo responsable del área de Salud.

Ahora, expertos afirman que una confluencia de factores podría causar el resurgimiento de epidemias mortales de enfermedades como el sarampión, la tos ferina y la meningitis, o incluso de polio.

 “La cantidad de cosas que empezarán a desmoronarse es abrumadora”, dijo James Hodge, experto en derecho de salud pública en el Colegio de Derecho Sandra Day O’Connor de la Universidad Estatal de Arizona. “Vamos a experimentar un cambio crítico en la legislación y las políticas sobre vacunas”.

“Estas políticas harán que América vuelva a enfermarse”, afirmó Lawrence Gostin, profesor de derecho de la salud pública en la Universidad de Georgetown.

Los legisladores estatales que cuestionan la seguridad de las vacunas están preparados para presentar proyectos de ley que debiliten los requisitos de vacunación para ir a la escuela, o los eliminen por completo, señaló Northe Saunders, quien monitorea la legislación relacionada con vacunas para la SAFE Communities Coalition.

Incluso los estados que mantengan los requisitos que hoy existen podrán ser afectados por las decisiones que tome un Congreso controlado por los republicanos, Kennedy y el ex miembro de la Cámara Dave Weldon, en caso de que sean confirmados para dirigir el Departamento de Salud y Servicios Humanos (HHS) y los Centros para el Control y Prevención de Enfermedades (CDC), respectivamente.

Ambos —Kennedy como activista, Weldon como médico y congresista desde 1995 hasta 2009, y protagonista de documentales antivacunas desde entonces— han respaldado teorías ya desacreditadas que culpan a las vacunas del autismo y otras enfermedades crónicas. Los dos han acusado a los CDC de ocultar las pruebas que confirmarían sus postulados, a pesar de las docenas de estudios científicos de prestigio que demuestran lo contrario.

El equipo de Kennedy no respondió a los pedidos de comentarios o entrevistas.

En noviembre, Robert F. Kennedy Jr. declaró a NPR: “No vamos a quitarle las vacunas a nadie”.

Todavía no está claro hasta qué punto el nuevo gobierno buscaría desalentar la vacunación, pero si los niveles de inmunización caen bastante, las enfermedades y muertes prevenibles por vacunas podrían dispararse.

“Es una fantasía pensar que podemos reducir las tasas de vacunación y la inmunidad colectiva en Estados Unidos sin sufrir la reaparición de estas enfermedades”, dijo Gregory Poland, co-director de la Atria Academy of Science & Medicine. “Uno de cada 3,000 niños que desarrolla sarampión va a morir. No hay tratamiento para evitarlo. Van a morir”.

En noviembre de 2019, una epidemia de sarampión causó la muerte de 80 niños en Samoa. En esa oportunidad, Kennedy escribió al primer ministro de ese país afirmando falsamente que la vacuna contra el sarampión probablemente estaba causando esas muertes.

Scott Gottlieb, que fue el primer comisionado de la Administración de Drogas y Alimentos (FDA) bajo la administración Trump, declaró en CNBC el 29 de noviembre que Kennedy “va a costar vidas en este país” si sabotea la vacunación.

La nominación de Kennedy valida y consagra la desconfianza pública en los programas de salud del gobierno, asegura Paul Offit, director del Centro de Educación sobre Vacunas del Hospital Infantil de Philadelphia.

“La idea de que se considere para ocupar un puesto tan importante hace que la gente piense que sabe de lo que habla”, dijo Offit. “Y él apela a generar desconfianza, a la idea de que ‘hay cosas que no ves, datos que no presentan, que yo voy a averiguar para que realmente puedas tomar una decisión informada’”.

Qué quieren los grupos antivacunas

Hodge ha elaborado una lista de 20 acciones que la administración podría llevar a cabo para debilitar los programas nacionales de vacunación, desde difundir información errónea hasta retrasar las aprobaciones de la FDA sobre vacunas. O retirar el apoyo del Departamento de Justicia a las leyes de vacunación que buscan impugnar grupos como Children’s Health Defense, que Kennedy fundó y dirigió antes de postularse para la presidencia.

Kennedy podría eliminar el Comité Asesor sobre Prácticas de Inmunización de los CDC, cuyas recomendaciones sobre el uso de una vacuna determinan si el gobierno la financia a través del programa Vacunas para Niños, que se creó hace 30 años y ofrece inmunizaciones gratuitas a más de la mitad de los niños del país.

Otra opción es que Kennedy coloque en el comité a aliados suyos que se oponen a nuevas vacunas y, al menos en teoría, retire las recomendaciones para vacunas como la triple viral (sarampión, paperas y rubéola), que se usa desde hace 53 años y cuya anulación es uno de los principales objetivos del movimiento antivacunas.

Mientras tanto, siempre hay amenazas de enfermedades infecciosas. Pero en lugar de prepararse para enfrentarlas, como haría una administración entrante común, Kennedy ha amenazado con reestructurar las agencias federales de salud. En una conferencia de Children’s Health Defense en noviembre, en Georgia, declaró que, cuando asuma el cargo, les dará “un respiro a las enfermedades infecciosas” para ocuparse de las afecciones crónicas.

El virus H5N1, o gripe aviar, podría estallar y convertirse en una nueva pandemia. No solo se ha propagado entre el ganado sino que ha infectado por lo menos a 55 personas. El dengue, que se transmite por mosquitos, es otra de las enfermedades que aumenta en el país.

Las enfermedades tradicionales de la infancia también están manifestándose con mayor frecuencia, en parte debido a la baja en la vacunación. Este año hubieron 16 brotes de sarampión —el 89% de los casos en personas no vacunadas— y la epidemia de tos ferina fue la peor desde 2012.

“Así es como estamos empezando”, dijo Peter Hotez, pediatra y virólogo del Baylor College of Medicine. “Y a esta situación se suma el nombramiento a la cabeza del HHS de uno de los activistas antivacunas más contundente y visible, lo que me provoca mucha preocupación”.

Los precios de las acciones de las compañías farmacéuticas con grandes portfolios de vacunas se han desplomado desde la designación de Kennedy. Incluso antes de la victoria de Trump, la escasez de vacunas y el escepticismo habían hecho caer la demanda de las más nuevas, como las vacunas contra el Virus Respiratorio Sincitial (VSR) y el herpes zóster de GSK.

Kennedy tiene varias maneras para retrasar o directamente detener el lanzamiento de nuevas vacunas. También para reducir las ventas de vacunas existentes. Por ejemplo, puede exigir estudios adicionales después que las vacunas ya están en el mercado o difundir estudios que sugieren posibles riesgos de seguridad, aunque esa afirmación sea errónea o no esté comprobada.

Kennedy, quien ha apoyado teorías conspirativas como que el VIH no causa el sida y que los pesticidas provocan disforia de género, declaró a NPR que existen “enormes déficits” en la investigación sobre la seguridad de las vacunas. “Nos aseguraremos de que esos estudios científicos se realicen y de que las personas puedan tomar decisiones informadas”, dijo.

El nombramiento de Kennedy “es un mal pronóstico para el desarrollo de nuevas vacunas y la aplicación de las que están actualmente disponibles”, dijo Stanley Plotkin, quien desarrolló la vacuna contra la rubéola en la década de 1960 y ahora es consultor de la industria de vacunas. “El desarrollo de vacunas requiere millones de dólares. A menos que haya perspectivas de obtener beneficios, las empresas comerciales no van a interesarse en invertir en esas investigaciones”, reflexionó.

Los defensores de las vacunas, que disponen de menos recursos que los grupos antivacunas, mucho mejor financiados, consideran que será muy difícil la batalla para defender la necesidad de la inmunización en los tribunales, las legislaturas y la opinión  pública. Las personas rara vez valoran la ausencia de una enfermedad erradicada, lo que dificulta promover las vacunas, incluso cuando son altamente efectivas.

Una situación muy grave

“Para mucha gente, RFK Jr. era motivo de burla, pero él está absolutamente decidido, habla totalmente en serio”, afirmó Ernst. “Tiene mucho poder, dinero y una vasta red de padres antivacunas que aparecerán en cualquier momento”. Nada similar ha ocurrido en los grupos a favor de las vacunas, dijo Ernst.

El 22 de octubre pasado, cuando una junta sanitaria de Idaho votó a favor de dejar de suministrar vacunas contra covid en seis condados, no había defensores de las vacunas en la reunión. “Ni siquiera sabíamos que esa discusión estaba en el orden del día”, aseguró Ernst. “La movilización por nuestra parte siempre está más retrasada. Pero no me rindo”, concluyó.

Este giro multifacético e impredecible ha sido desconcertante para Walter Orenstein, quien como jefe de la división de inmunización de los CDC entre 1988 y 2004 convenció a los estados de que endurecieran los requisitos de vacunación escolares para luchar contra los brotes de sarampión.

“La gente no entiende el concepto de protección comunitaria y, si lo entiende, no parece importarle”, afirmó Orenstein. Como epidemiólogo de los CDC en la India, Orenstein fue testigo de algunos de los últimos casos de viruela en la década de 1970. También atendió con frecuencia a niños con meningitis causada por la bacteria H. influenzae tipo B, una enfermedad que ha desaparecido casi totalmente gracias a una vacuna introducida en 1987.

“Yo era muy ingenuo”, dijo. “Pensaba que la vacunación contra covid consolidaría la aceptación de las vacunas, pero sucedió todo lo contrario”.

Los legisladores que se oponen a las vacunas podrían presentar leyes para eliminar los requisitos de acceso a la escuela en casi todos los estados, explicó Saunders.

En Texas se ha presentado un proyecto de ley de estas características, donde lo que se conoce como el movimiento de elección de vacunas ha estado creciendo desde 2015 y se intensificó durante la pandemia, fusionándose con los grupos de defensa de los derechos de los padres y grupos antigubernamentales opuestos a medidas como las vacunas obligatorias y el uso de máscaras.

“El genio ya está fuera de la botella y no se puede volver a meter”, dijo Rekha Lakshmanan, directora de estrategia de Immunization Partnership en Texas. “Se ha convertido en un problema con muchos ángulos con el que tenemos que lidiar”, agregó.

En el último año escolar completo, más de 100.000 alumnos de las escuelas públicas de Texas fueron eximidos de aplicarse una o más vacunas, dijo Lakshmanan, y se cree que muchos de los 600.000 niños en el estado que reciben su educación en sus casas tampoco están vacunados.

Los planes del presidente electo Donald Trump, que se propone eliminar las protecciones del servicio civil de los trabajadores federales, podrían ser la mayor amenaza para las políticas de vacunación existentes. Una decisión de ese tipo pondría en peligro a los empleados de las agencias federales de salud cuyo trabajo diario es prepararse para luchar contra las enfermedades y epidemias.

“Si se desmantela el aparato administrativo del estado el impacto en la salud pública será a largo plazo y grave”, dijo Dorit Reiss, profesora de la Facultad de Derecho Hastings de la Universidad de California.

El multimillonario Elon Musk, una persona con gran influencia sobre el presidente electo, planea recortes de gastos que también se consideran una amenaza.

“Dañar las funciones más importantes de la FDA, es como matar a la gallina de los huevos de oro, tanto para nuestra salud como para la economía”, afirmó Jesse Goodman, director del Center on Medical Product Access, Safety and Stewardship de la Universidad de Georgetown y ex director científico de la FDA.

“Sería exactamente lo contrario de lo que Kennedy dice que quiere, que son productos médicos seguros. Si en la agencia carecemos de científicos y clínicos calificados e independientes, el riesgo de que los estadounidenses tengan alimentos y medicamentos inseguros se incrementa.”

Los brotes de enfermedades prevenibles con vacunas podrían ser alarmantes, pero ¿serían suficientes para impulsar de nuevo las tasas de  vacunación? Ernst, de Voices for Vaccines, no está convencido.

“Ya estamos teniendo brotes. Tendrían que pasar años antes de que murieran suficientes niños como para que la gente dijera: ‘Supongo que el sarampión es algo realmente peligroso’”, afirmó. “La muerte de un niño no será suficiente. La historia que contarán será: ‘A ese niño le pasaba algo. A mi hijo no le puede pasar’”.

Esta historia fue producida por KFF Health News, conocido antes como Kaiser Health News (KHN), una redacción nacional que produce periodismo en profundidad sobre temas de salud y es uno de los principales programas operativos de KFF, la fuente independiente de investigación de políticas de salud, encuestas y periodismo. 

KFF Health News’ ‘What the Health?’: A Colorful Cast Could Lead Key Health Agencies

The Host

President-elect Donald Trump has continued naming out-of-the-box choices to lead key federal health agencies. Three of those picks — Marty Makary, who would lead the FDA; Jay Bhattacharya, who would head the National Institutes of Health; and Dave Weldon, chosen to administer the Centers for Disease Control and Prevention — have something notable in common: All have proposed major changes to the organizations they would oversee.

 Meanwhile, the Supreme Court heard a case challenging Tennessee’s ban on transgender health care for minors, with the conservative justices seeming likely to support the state’s law.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Joanne Kenen of the Johns Hopkins University’s schools of public health and nursing and Politico, and Shefali Luthra of The 19th.

Among the takeaways from this week’s episode:

  • In recent weeks, Trump has named his picks to lead key federal health agencies, including the FDA, NIH, and CDC. His selections suggest big changes could be in store. For instance, Weldon — a former congressman and a practicing physician — has often advocated against scientific consensus, including on vaccines.
  • The Supreme Court this week heard arguments on Tennessee’s law barring transitional care for transgender minors, and from listening to the conservative majority’s remarks, it seems likely they will uphold the law — with implications for those living in the more than 20 states with similar measures on the books. Plus, in a separate case on vaping, the court sounded sympathetic to the FDA’s decisions to reject applications for flavored e-cigarettes that could put children at risk of addiction.
  • Meanwhile, the incoming Trump administration is poised to take custody of some health-related lawsuits it could very well drop, as well as some big policies it could end — but it remains to be seen what actions it chooses to take. Medicare drug negotiations, for example, are a Biden administration policy, though Trump and his pick for Health and Human Services secretary, Robert F. Kennedy Jr., have also advocated for cracking down on the drug industry.
  • In abortion news, a federal appeals court has cleared the way for Idaho to begin to enforce parts of its law making it a crime to help a minor obtain an abortion in another state. And officials in Texas and Georgia throttled state commissions studying maternal mortality after cases showed the states’ abortion bans were responsible for at least some women’s deaths.

Also this week, Rovner interviews KFF Health News’ Bram Sable-Smith, who reported and wrote the latest KFF Health News-Washington Post Well+Being “Bill of the Month” feature, about an emergency room bill for a visit that didn’t make it past the waiting room. If you have an outrageous or inscrutable medical bill you’d like to send us, you can do that here.

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

Julie Rovner: The New Yorker’s “The Texas OB-GYN Exodus,” by Stephania Taladrid.  

Shefali Luthra: The Washington Post’s “Post Reports” podcast’s “A Trans Teen Takes Her Case to the Supreme Court,” by Casey Parks, Emma Talkoff, Ariel Plotnick, and Bishop Sand.  

Joanne Kenen: ProPublica’s “For Decades, Calls for Reform to Idaho’s Troubled Coroner System Have Gone Unanswered,” by Audrey Dutton.  

Sarah Karlin-Smith: Stat’s “What YouTube Health Is Doing To Combat Misinformation and Promote Evidence-Based Content,” by Nicholas St. Fleur.  

Also mentioned in this week’s podcast:


To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on SpotifyApple PodcastsPocket Casts, or wherever you listen to podcasts.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

An Arm and a Leg: New Lessons in the Fight for Charity Care

Federal law requires that all nonprofit hospitals have financial assistance policies — also known as “charity care” — to reduce or expunge people’s medical bills. New research from Dollar For, an organization dedicated to helping people get access to charity care, suggests that fewer than one-third of people who qualify for charity care actually receive it. 

“An Arm and a Leg” host Dan Weissmann talks with Dollar For founder Jared Walker about its recent work, and how new state programs targeting medical debt in places like North Carolina may change the way hospitals approach charity care. 

Plus, a listener from New York shares a helpful resource for navigating charity care appeals.

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: Hey there–

Clara lives in New York City with her husband Remy and their family. And, recently, over the course of a year, they had some … medical encounters. At hospitals.

Nothing super-dramatic: Remy broke his ankle in August of last year. Hello, emergency room. Hello, ER bill.

They had a second baby in November 2023 — a boy! — who ended up needing to spend a day in neonatal intensive care. He’s fine. They named him Isaac.

And one night early this year, Isaac just… wasn’t looking good. Lethargic. Had a fever.

Clara: We decided to give him Tylenol. Um, and he spit it all back out.

Dan: They took his temp again. A hundred and three point five.

Clara: We started Googling, um, what is like dangerously high fever for a baby

Dan: And yep. For a baby that little, a hundred three point five is starting to get iffy. Like possible risk of seizure. But it was late at night. No pediatrician, no urgent care. Hello new, unwelcome questions.

Clara: The last thing you want to be thinking about is, Oh shit, this is going to be really expensive. You want to be thinking about, let’s go to the ER right now, make sure he doesn’t have a seizure.

Dan: So they went. And the folks at the ER gave Isaac more tylenol, he didn’t spit it out, his fever went down. They went home, relieved about Isaac and a little anxious about the bills.

After insurance, they were looking at more than eight thousand dollars. Clara didn’t think her family could afford anything like that.

And the billing office didn’t offer super-encouraging advice.

Clara: basically every time I’ve called, they said, why don’t you start making small payments now so it doesn’t go into collections.

Dan: However. Clara listens to An Arm and a Leg. Where we’ve been talking about something called charity care for years. This summer, we asked listeners to send us their bills – and tell us about their experience with charity care. Clara was one of the folks who responded.

Just to recap: Federal law requires all nonprofit hospitals to have charity care policies, also called financial assistance.

To reduce people’s bills, or even forgive them entirely, if their income falls below a level the hospital sets.

We’ve been super-interested in charity care here for almost four years, ever since a guy named Jared Walker blew up on TikTok spreading the word and offering to help people apply, through the nonprofit he runs, Dollar For.

Since then, we’ve learned a LOT about charity care. Dollar For has grown from an infinitesimally tiny organization — basically Jared, not getting paid much -to a small one, with 15 people on staff.

Jared says they’ve helped people with thousands of applications and helped to clear millions of dollars in hospital bills.

And in the past year, they’ve been up to a LOT and they’ve been learning alot. Before we pick up Clara’s story — which ends with her offering a new resource we can share — let’s get a big download from Jared.

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 on this show 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.

In early 2024, Dollar For put out a couple of big research reports documenting how much charity care doesn’t get awarded. And why people don’t receive it.

Jared: I feel like for a long time we have been looking around at the experts, right? Who are the experts? And where can we find them and what can we ask them?

Dan: Finally, they undertook a major research project of their own. They analyzed thousands of IRS filings from nonprofit hospitals, and compared what they found to a study from the state of Maryland based on even more precise data.

And they hired a firm to survey a sample of more than 11 hundred people. Then ran focus groups to dig in for more detail.

Jared: I think that what these reports have just revealed is like, we are the experts like dollar for actually knows more than everyone else about this.

Dan: The amount of charity care that hospitals do not give to people who qualify for it?

The data analysis produced a number: 14 billion dollars. Which Jared and his colleagues say is a conservative estimate.

The survey showed that more than half of people who qualify for charity care do not get it. About two thirds of those folks do not know that it exists. Some people who know about it just don’t apply. And some who do get rejected, even though they qualify.

Their conclusion: “We found that only 29% of patients with hospital bills they cannot afford are able to learn about, apply for, and receive charity care.” None of which surprised Jared.

Jared: It’s like, Oh, like our assumptions have been correct on this. Like people don’t know about charity care. The process sucks. Um, a lot of people that should get it, don’t get it. Um, and hospitals have put all the pain and all of the responsibility on the patient

Dan: Those topline findings put Dollar For’s accomplishments in context.

Jared: Like we have submitted over 20, 000 of these financial assistance applications.

Dan: 20, 000 people. That’s spectacular. That’s I know you’re counting the money. How much money is it that you’re talking about so far?

Jared: I think we’re closing in on 70 million, 70 million in medical debt relief. So

Dan: Right. It’s a start.

Jared: there you go.

Dan: It’s a start.

Jared: It sounds great, and then you see the 14 billion number and you’re like, oh, shoot. What are we doing? What are we doing?

Dan: laugh crying emoji.

Jared: Yeah, yeah, yeah.

Dan: And so, for most of the year, Jared and his team have been testing a strategy to take on a 14 billion dollar problem.

Jared: We have spent the year trying to work with hospitals. We came at this – how do we put a dent in the 14 billion? If it’s not going to be through TikTok, and it’s not going to be through individual patient advocacy, then what if we moved further upstream, and instead of patients finding out about us one to three months after they get a bill, what if they heard about us at the hospital?

Dan: Jared envisioned patients getting evaluated for charity care, and getting referred to Dollar For for help applying, before they check out. He thought

Jared: Maybe we could make a bigger dent into that 14 billion. And, I think that that was wishful thinking.

Dan: Wishful thinking. That’s how Jared now describes his hopes that hospitals would see that they could do better by patients, with his help, and sign right up to work with him.

Jared: Um, well they haven’t, Dan. So, we don’t have, uh, you know, we’ve got one hospital.

We’ve got one hospital. I don’t know if there’s a smaller hospital in the United States. It is Catalina Island Health. It is a small hospital on an island off the coast of California

And when patients go in there, they tell them about Dollar For, and they send them over. Um, that was what we were hoping to do with these larger systems.

Dan: Jared talked to a lot of hospitals. He went to conferences for hospital revenue-department administrators. He didn’t get a lot of traction

Jared: You know, this is one thing where I’m like, I don’t want to be totally unfair to the hospitals.

They’re huge entities that you can’t just move quickly like that.

it is going to take a lot more on their end than it would on our end, we could spin up one of these partnerships in a week.

And. They’re going to need a lot of time and it’s going to, you know, how do we implement this? Um, you know, with a small Catalina Island hospital it was easy, but if you’re talking to Ascension

Dan: Ascension Healthcare– a big Catholic hospital system. A hundred thirty-six hospitals. More than a hundred thirty thousand employees. Across 18 states, plus DC. Jared says they might get thousands of charity care applications a month. A deal to steer folks to Jared isn’t a simple handshake arrangement.

Jared: How do you, how do you do that? You know, how do you implement that? I mean, it’s a pain in the ass. And these hospitals, and more so, hospitals are not motivated to figure this out.

Dan: Yeah. Right.

Jared: Unless you’re in North Carolina,

Dan: North Carolina. In 2023, North Carolina expanded Medicaid. In July 2024, Governor Roy Cooper announced a program that would use Medicaid money to reward hospitals for forgiving Medical debt.

Gov. Roy Cooper: under this program. Hospitals can earn more by forgiving medical debt than trying to collect it. This is a win win win.

Dan: Under the program, hospitals can get more Medicaid dollars if they meet certain conditions. One, forgive a bunch of existing medical debts. Another: Make sure their charity care policies protect patients who meet income threhholds set by the state.

A third: they have to pro-actively identify patients who are eligible for charity care — and notify those patients before sending a bill, maybe even before they leave the hospital.

Jared: I’m very excited to see how that looks in the future. Because if you remember, the big four, like our shit list, is Texas, Florida, Georgia, North Carolina.

Dan: Jared’s shit list. The states where, over the years, he has heard from the greatest number of people who have difficulty getting hospital charity care. Where he often has to fight hardest to help them get it.

Jared’s shit list, the big four, were the four biggest states (by population) that had rejected the expansion of Medicaid under the Affordable Care Act.

Because of how the ACA was written, no Medicaid expansion means a lot more people who don’t have a lot of money and just don’t have ANY insurance at all.

It’s a giant problem. And North Carolina was one of those states where it was toughest.

Jared: And in, you know, the span of a year, North Carolina has expanded Medicaid, and created one of the best medical debt charity care policies in the country.

This law essentially says that they have to identify them early. So that’s like – on paper, you know, it sounds amazing.

Dan: Onpaper it sounds amazing. We’ll come back to that. But first, let’s make clear: This wasn’t a sudden transformation. The governor, Roy Cooper, who we heard in that clip? He spent like seven years pushing the state to expand Medicaid.

The legislature finally agreed in 2023. And then Cooper and his team spent months this year figuring out how to bake medical-debt relief into the plan. It took a ton of maneuvering.

Our pals at KFF Health News covered the process. Here’s Ames Alexander, who reported that story with Noam Levy, describing the process on a public radio show called “Due South.”

Cooper’s team started out by trying to quietly bounce their ideas off a few hospitals..

Ames Alexander KFF Health News: But then word got back to the hospital industry’s powerful lobbying group. That’s the North Carolina Healthcare Association. And the Association was not at all happy about it. .

Dan: They raised a stink. And claimed the whole thing would be illegal, the feds shouldn’t approve it.

Cooper and his health secretary Cody Kinsley got kept going– and they did get the feds to sign off on the plan. So it was legal.

But it wasn’t mandatory. They were offering hospitals money, but those hospitals needed to say yes. And that didn’t happen right away.

Ames Alexander KFF Health News: When Cooper and Kinsley unveiled this plan on July 1st, there wasn’t a single hospital official who would join them there for the press conference. Ultimately, though, all 99 of the state’s hospitals signed on. And it’s not, it’s not really hard to understand why they stood to lose a lot of federal money.

Dan: Lose OUT on a ton of NEW federal money. A ton. According to KFF’s reporting, a single hospital system stands to gain like 800 million dollars a year for participating.

And you know, thinking about that — how much money hospitals were considering turning down — kind of puts into perspective Jared’s experience trying to get them to work with him. He wasn’t offering anybody 800 million dollars a year.I said to Jared: Seems like this would be hard to replicate elsewhere. Other states aren’t going to be able to put that kind of new federal money on the table. And Jared said:

Jared: I think before like, Oh, can we replicate it? I’m just like, how do we make it? How do we make it work in North Carolina?

Dan: That is: How to make sure when it gets implemented, that it really works? Remember, Jared said before: This all sounds amazing ON PAPER. We’ll have some of his caveats after the break. Plus the rest of Clara’s story.

An Arm and a Leg is a co-production of Public Road Productions and KFF Health News — that’s a nonprofit newsroom covering health issues in America. KFF’s reporters do amazing work — you just heard one of them breaking down how North Carolina put that deal together. I’m honored to work with them.

Jared loves the idea behind North Carolina’s initiative on charity care: Hospitals have to screen people while they’re on site, and let them know before they leave the hospital what kind of help they may be eligible for.

Jared: Making sure that a patient knows what is available to them before they leave is very powerful. , like, that’s where the responsibility should be. Um, but how do you do it? And what happens if you don’t? Right?

Dan: In other words, Jared says, the devil is in implementation, and in systems of accountability. He’s seen what happens when those systems are pourous.

Jared: In Oregon, they had that law that was like, Oh, you can’t sue patients without first checking to see if they’re eligible for charity care. . And then you find all these people that are being sued that were never screened.

Dan: Yeah, Oregon passed a law in 2019 that required hospitals to evaluate patients for charity care before they could be sued over a bill. Jared’s colleague Eli Rushbanks analyzed a sample of hospital-bill lawsuits in one county. He could only see patient’s income in a few of them– but in almost half of those, that income was definitely low enough that the debt should’ve been forgiven.

He also took a big-picture look: In the years after the law took effect, two thirds of hospitals gave out LESS charity care than they had given before. Probably not what lawmakers had hoped for.

Hospitals in North Carolina will have two years to fully implement the screening requirement, called “presumptive eligibility.”

Some hospitals around the country already use automated systems for this: They check your credit, pull other data. Some of them use AI.

Jared says he’s seen some hospitals over-rely on the tech.

Jared: Some hospitals that are using presumptive eligibility tools will use that as a way to say, Oh, we already screened you. You can’t apply, but the patient is sitting there going, well, I’m eligible.

Your tool must have got it wrong. Cause these things are not a hundred percent accurate, or think of something like this, you lose your job, or maybe you’re at the hospital because you just gave birth to another human. So now you’re a household of four. It’s a four instead of three.

And obviously the presumptive eligibility tool isn’t going to be able to know that and calculate that. So if you go to the hospital and say, now I want to apply and they say, well, you don’t get to apply because we already screened you and you’re not eligible. That’s bullshit.

Dan: So, as North Carolina hospitals bring their systems online, Jared wants to push for a process where patients can appeal a machine-made decision. Jared: I’d love to be able to test that

how does that impact how many people are getting charity care and that 14 billion?

Dan: What do you think is your best shot for the next year of kind of moving towards 14 billion?

Jared: We are trying to figure that out. Um, obviously the election will play into that, but I think that if I had to guess where we would land, um, I think that we will double down on our patient advocacy work.

Dan: Jared says they’ll definitely also continue to work with advocates and officials on policy proposals. But…

Jared: The only reason anyone cares about what we have to say about policy is because we know what the patient experiences. So I think that if the, the more people we help, the more opportunity we will have to push policies forward that we want to see happen

Dan: So, this is a good place to note: If you or anybody you know has a hospital bill that’s scaring you, Dollar For is a great first stop. We’ll have a link to their site wherever you’re listening to this. They’ve got a tool that can help you quickly figure out if you might qualify for charity care from your hospital. Plus tons of how-tos. And they’ve got dedicated staff to help you if you get stuck.

And we just heard Jared say they’re not backing away from that work, even as they aim to influence policy.

About policy — Jared does have one other thought about their work in that area

Jared: We think that we’re going to get a little bit more feisty, uh, moving forward. So I’m, I’m excited about that.

Dan: I talked with Jared less than a week after the election. We didn’t know yet which party would take the House of Representatives, and of course there’s still a LOT we don’t know about what things look like from here. Jared had just one prediction.

Jared: I think we’re going to be needed, you know, that much more.

Dan: I think we’re all gonna need each other more than ever. Which is why I’m pleased to bring us back to Clara’s story from New York.

You might remember: Her family had three hospital adventures in the space of a year.

The first one, where her husband broke his ankle, got her started. The bill was eighteen hundred dollars, after insurance. A LOT for their family. But she had a few things going for her.

One, she knew charity care existed. Not because the hospital mentioned it.

Clara: No, I know about it from an arm and a leg,

Dan: And two, she had the skills. Because by training, she’s a librarian. And —you may already know this but — people come to libraries looking for a lot more than just books.

Clara: People all the time, will come in and bring in a form or need help navigating different systems and, and even just looking and trying to see where to start.

Dan: So, she went and found her hospital’s financial assistance policy online. Saw that her family met their income requirements. Found the form. Submitted it. Got offered a discount… that still left her family on the hook for more than they could comfortably pay.

And decided to see if she could ask for more. Was there an appeals process? There was.

But she didn’t find all of the information she needed online. The process wasn’t quick.

Clara: A lot of phone tag. And I don’t know if the bill pay phone lines are staffed better than the financial aid phone lines. But, you know, you get an answering machine a lot. You have to call back. The person doesn’t remember you. They’re not able to link your account.

All the things that I just feel like they’re really greasing the wheels of the paying for the bill option, but actually not making it especially accessible to do the financial aid and appeal process.

Dan: Clara hung in there. Here’s what she told my colleague Claire Davenport.

Clara: Being a listener of the podcast, I feel like I’m part of a community of people who are sort of maneuvering through the crazy healthcare system. And I do kind of have Dan’s voice in my head, like, this is nuts. This is not your fault. This is crazy and not right.

Dan: Also, when she was angling for more help on her husband’s ER bill, she knew anything she learned could come in handy: She was due to give birth at the same hospital pretty soon.

Her persistence paid off. In the end, the hospital reduced that 1800 dollar bill to just 500 dollars.

Two weeks later, Isaac was born. And spent an extra day in the NICU. That, plus the late-night fever that sent them to the ER left Clara’s family on the hook for about 6500 dollars.

Clara used what she’d learned the first time through as a playbook. Apply, then appeal to ask for more help. She says that made it a little simpler. But not simple, and not quick.

Isaac was born in November 2023. His ER visit was in April 2024. When Clara talked with our producer in early August 2024, she was still waiting to hear the hospital’s decision about her appeal. Was it gonna be approved?

Clara: In the event that it’s not, I think we just put it on like the longest payment plan we can. Maybe we would ask family for help.

Dan: Update: A few days after that conversation, the hospital said yes to Clara’s appeal. Her new total, 650 dollars. About a tenth of that initial amount.

Which, yes, is a nice story for Clara and her family. But the reason I’m so pleased to share her story is this:

Clara: Actually, I made a template that you can let your listeners use for making an appeal letter. I’ll share it with you.

Dan: Clara thought it might be useful because part of the application and appeal process — not all of it was just facts and figures and pay stubs. There was also an opportunity to write a letter. Which opened up questions.

Clara: I feel like It’s not totally clear what you’re supposed to put in the letter and who you’re appealing to and how emotional you’re supposed to make it versus how technical

Dan: Here’s how she approached it.

Clara: I was trying to think about if I was reading the letter, what would help paint the picture of this bill in context of everything else. trying to put myself in their shoes, reading it, what would be useful to kind of add more depth to our story than just the bill. And then also I just tried to be really grateful and express authentic gratitude for the great care we received.

Dan: She also included a realistic estimate of what her family could actually pay. Which the hospital ended up agreeing with.

And yes, Clara shared that template with us. We’ll post a link to it wherever you’re listening to this. Please copy and paste, and fill in the blanks, and please-tell us if it works for you.

A big lesson here is, don’t take no for a final answer. Don’t take “We’ll help you this much” for a final answer. Clara discovered one other thing: Don’t give up if it looks like you may have missed a deadline. She missed one.

Clara: So I called them and said, I’m really worried. ” I didn’t send it in time. It might be off by a couple days. Is this going to be a huge problem? And they said, No, don’t worry about it.

It’s totally fine. Just send it. So I’m thinking, Okay, wait. There are so many people who are going to get cut off or get their bill and realize, Oh, well, I totally missed the window. So let’s go for the payment plan option. When actually,

Dan: If you’ve got the chutzpah, and the time, and the patience to make the next call and ask… you may get a different answer.

It sucks that it’s this hard. But I appreciate every clue that it’s not impossible. And I appreciate Clara sharing her story — and her template with us.

I told Jared about it.

Jared: Yeah, that’s amazing. I mean, I love, uh, it’s so funny. it’s just the idea of you have this patient that is going through all of this stuff and is so busy trying to focus on their own health, do their own thing, and they’re out here making templates so that other people can , you know, jump through the same hoops because we know We’re all going to have to jump through the hoops, uh, is just, man, how frustrating is that?

But how amazing is it that you have, you have built a community of people that are, you know, willing to, uh, take those kind of crappy, not kind of, very terrible experiences and, um, and turn it into something that is helpful for other people. I think that’s amazing.

Dan: Me too! So this is where I ask you to help keep a good thing going. We’ve got so much to do in 2025, and your donations have always been our biggest source of support. After the credits of this episode, you’ll hear the names of some folks who have pitched in just in the last few weeks.

And this is The Time to help us build. The place to go is arm and a leg show dot com, slash, support.

That’s arm and a leg show dot com, slash, support .

We’ll have a link wherever you’re listening.

Thank you so much for pitching in if you can.

We’ll be back with a brand new episode in a few weeks.

Till then, take care of yourself.

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

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. Bea Bosco is our consulting director of operations.

Lynne Johnson is our operations manager.

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.

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.


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

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Nursing Homes Fell Behind on Vaccinating Patients for Covid

It seems no one is taking covid-19 seriously anymore, said Mollee Loveland, a nursing home aide who lives outside Pittsburgh.

Loveland has seen patients and coworkers at the nursing home where she works die from the viral disease.

Now she has a new worry: bringing home the coronavirus and unwittingly infecting her infant daughter, Maya, born in May.

Loveland’s maternity leave ended in late June, when Maya wasn’t yet 2 months old. Infants cannot be vaccinated against covid until they are 6 months old. Children younger than that suffer the highest rates of hospitalization of any age group except people 75 or older.

Between her patients’ complex medical needs and their close proximity to one another, covid continues to pose a grave threat to Loveland’s nursing home — and to the 15,000 other certified nursing homes in the U.S. where some 1.2 million people live.

Despite this risk, a CDC report published in April found that just 4 in 10 nursing home residents in the U.S. received an updated covid vaccine in the winter of 2023-24. The analysis drew on data from Oct. 16, 2023, through Feb. 11, 2024, and was conducted by the Centers for Disease Control and Prevention.

The CDC report also revealed that during January’s covid peak, the rate of hospitalizations among nursing home residents was more than eight times that of all U.S. adults, age 70 and older.

Billing Complexities and Patient Skepticism

Last winter’s low vaccination rate was partly driven by the end of the federal government’s paying for administering the shots, said Rajeev Kumar, a Chicago-based geriatrician.

While the vaccines remain free to patients, clinicians must now bill each person’s insurer separately. That makes vaccinating an entire nursing home more logistically complicated, Kumar said.

Kumar is president of the Post-Acute and Long-Term Care Medical Association, which represents clinicians who work in nursing homes and similar settings, such as post-acute care, assisted living, and hospice facilities.

“The challenges of navigating through that process and arranging vaccinations, making sure that somebody gets to bill for services and collect money, that’s what has become a little bit more tedious,” he said.

In April, after the study was released, the CDC recommended that adults 65 and older get an additional dose of an updated vaccine if it’s been more than four months since their last dose. That means most nursing home patients who have had only one shot in fall or winter are not considered up to date on the covid vaccines.

Kumar and his colleagues are encountering more skepticism of the covid vaccines, compared with their rollout.

“The long-term care population is a microcosm of what’s happening across the country and, unfortunately, covid vaccine reluctance remains persistent throughout the general public. It’s our most significant challenge,” according to an emailed statement from David Gifford, chief medical officer at AHCA/NCAL, which represents both for-profit and nonprofit nursing homes.

Nursing aide Loveland also has observed doubts and misinformation cropping up among patients at her job: “It’s the Facebook rabbit hole.”

But there are ways to push back against bad information, and states show wide variation in the proportion of nursing home residents who got vaccinated last winter.

For example, in both North and South Dakota, more than 55% of residents at nursing homes that reported data have gotten an updated covid vaccine this fall. Nationally, that share is 32%.

Building Trust Through Relationships

One major medical system operating in the Dakotas, Sanford Health, has managed more than two dozen nursing homes since a 2019 merger with the long-term care chain Good Samaritan Society.

In some of these nursing homes more than 70% of residents were vaccinated last fall and winter — at one Sanford facility in Canton, South Dakota, the rate exceeded 90%.

Sanford achieved this by leveraging the size of the health system to make delivering vaccines more efficient, said Jeremy Cauwels, Sanford’s chief medical officer. He also credited a close working relationship with a South Dakota-based pharmacy chain, Lewis Drug.

But the most crucial factor was that many of Sanford’s nursing home patients are cared for by doctors who are also employed by the health system. At most Sanford’s North and South Dakota nursing homes, these clinicians provide on-site primary care, meaning patients don’t have to leave the facilities to see doctors.

These employed doctors have been critical in persuading patients to stay up to date on their covid shots, Cauwels said. For example, a medical director who worked at the Good Samaritan nursing home in Canton was a long-serving physician with close ties to that community.

“An appropriate one-on-one conversation with someone who cares about you and has a history of doing so in the past, for us, has resulted in much better numbers than other places have been able to get to nationally,” said Cauwels, who added that Sanford still needs to work on reaching more patients.

Sanford’s success shows the onus of getting patients vaccinated extends beyond nursing homes, said Jodi Eyigor, director of nursing home quality and public policy for LeadingAge, which represents nonprofit nursing homes. She said primary care providers, hospitalists, pharmacists, and other health care stakeholders need to step up.

“What conversations have occurred before they walked into a nursing home’s doors, between them and their doctors? Because they’re probably seeing their doctors quite frequently before they come into the nursing home,” said Eyigor, who noted these other clinicians are also regulated by Medicare, the federal health insurance program for adults 65 and older.

Critics: Shot Uptake Linked to Residents’ Dissatisfaction

Nursing homes are required to educate patients — as well as staff — about the importance of the covid vaccines. Industry critics contend that one-on-one conversations, based on trusted relationships with clinicians, are the least that nursing homes should do.

But many facilities don’t seem to be doing even that, according to Richard Mollot, executive director of the Long Term Care Community Coalition, a watchdog group that monitors nursing homes. A 40% recent vaccination rate is inexcusable, he said, given the danger the virus poses to people who live in nursing homes.

A study from the Journal of Health Economics estimates that from the start of the pandemic through Aug. 15, 2021, 21% of covid deaths in the U.S. were among people living in nursing homes.

Mollot said that the alarmingly low covid vaccination rate is a symptom of larger issues throughout the industry. He hears from patients’ families about poor food quality and a general apathy that some nursing homes have toward residents’ concerns. He also cites high rates of staff turnover and substandard, even dangerous, care.

These problems intensified in the years since the start of the covid pandemic, Mollot said, causing extensive stress throughout the industry.

“That has resulted in much lower care, much more disrespectful interactions between residents and staff, and there’s just that lack of trust,” he added.

Loveland, the nursing aide outside Pittsburgh, also thinks the industry has fundamental problems when it comes to daily interactions between workers and residents. She said the managers at her job often ignore patients’ concerns.

“I feel like if the facilities did more with the patients, they would get more respect from the patients,” she said.

That means that when administrators announced it was time for residents to get one of the newest covid vaccines this year, Loveland said, residents often simply ignored the message, even if it meant putting their own health at risk.

This article is from a partnership that includes NPR and KFF Health News.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

9 States Poised To End Coverage for Millions if Trump Cuts Medicaid Funding

With Donald Trump’s return to the White House and Republicans taking full control of Congress in 2025, the Affordable Care Act’s Medicaid expansion is back on the chopping block.

More than 3 million adults in nine states would be at immediate risk of losing their health coverage should the GOP reduce the extra federal Medicaid funding that’s enabled states to widen eligibility, according to KFF, a health information nonprofit that includes KFF Health News, the publisher of California Healthline, and the Georgetown University Center for Children and Families. That’s because the states have trigger laws that would swiftly end their Medicaid expansions if federal funding falls.

The states are Arizona, Arkansas, Illinois, Indiana, Montana, New Hampshire, North Carolina, Utah, and Virginia.

The 2010 Affordable Care Act encouraged states to expand Medicaid programs to cover more low-income Americans who didn’t get health insurance through their jobs. Forty states and the District of Columbia agreed, extending health insurance since 2014 to an estimated 21 million people and helping drive the U.S. uninsured rate to record lows.

In exchange, the federal government pays 90% of the cost to cover the expanded population. That’s far higher than the federal match for other Medicaid beneficiaries, which averages about 57% nationwide.

Conservative policy groups, which generally have opposed the ACA, say the program costs too much and covers too many people. Democrats say the Medicaid expansion has saved lives and helped communities by widening coverage to people who could not afford private insurance.

If Congress cuts federal funding, Medicaid expansion would be at risk in all states that have opted into it — even those without trigger laws — because state legislatures would be forced to make up the difference, said Renuka Tipirneni, an associate professor at the University of Michigan’s School of Public Health.

Decisions to keep or roll back the expansion “would depend on the politics at the state level,” Tipirneni said.

For instance, Michigan approved a trigger as part of its Medicaid expansion in 2013, when it was controlled by a Republican governor and legislature. Last year, with the government controlled by Democrats, the state eliminated its funding trigger.

Six of the nine states with trigger laws — Arizona, Arkansas, Indiana, Montana, North Carolina, and Utah — went for Trump in the 2024 election.

Most of the nine states’ triggers kick in if federal funding falls below the 90% threshold. Arizona’s trigger would eliminate its expansion if funding falls below 80%.

Montana’s law rolls back expansion below 90% funding but allows it to continue if lawmakers identify additional funding. Under state law, Montana lawmakers must reauthorize its Medicaid expansion in 2025 or the expansion will end.

Across the states with triggers, between 3.1 million and 3.7 million people would swiftly lose their coverage, researchers at KFF and the Georgetown center estimate. The difference depends on how states treat people who were added to Medicaid before the ACA expansion; they may continue to qualify even if the expansion ends.

Three other states — Iowa, Idaho, and New Mexico— have laws that require their governments to mitigate the financial impact of losing federal Medicaid expansion funding but would not automatically end expansions. With those three states included, about 4.3 million Medicaid expansion enrollees would be at risk of losing coverage, according to KFF.

The ACA allowed Medicaid expansions to adults with incomes up to 138% of the federal poverty level, or about $20,783 for an individual in 2024.

Nearly a quarter of the 81 million people enrolled in Medicaid nationally are in the program due to expansions.

“With a reduction in the expansion match rate, it is likely that all states would need to evaluate whether to continue expansion coverage because it would require a significant increase in state spending,” said Robin Rudowitz, vice president and director of the Program on Medicaid and the Uninsured at KFF. “If states drop coverage, it is likely that there would be an increase in the number of uninsured, and that would limit access to care across red and blue states that have adopted expansion.”

States rarely cut eligibility for social programs such as Medicaid once it’s been granted.

The triggers make it politically easier for state lawmakers to end Medicaid expansion because they would not have to take any new action to cut coverage, said Edwin Park, a research professor at the Georgetown University Center for Children and Families.

To see the impact of trigger laws, consider what happened after the Supreme Court in 2022 struck down Roe v. Wade and, with it, the constitutional right to an abortion. Conservative lawmakers in 13 states had crafted trigger laws that would automatically implement bans in the event a national right to abortion were struck down. Those state laws resulted in restrictions taking effect immediately after the court ruling, or shortly thereafter.

States adopted triggers as part of Medicaid expansion to win over lawmakers skeptical of putting state dollars on the hook for a federal program unpopular with most Republicans.

It’s unclear what Trump and congressional Republicans will do with Medicaid after he takes office in January, but one indicator could be a recent recommendation from the Paragon Health Institute, a leading conservative policy organization led by former Trump health adviser Brian Blase.

Paragon has proposed that starting in 2026 the federal government would phase down the 90% federal match for expansion until 2034, when it would reach parity with each state’s federal match for its traditional enrollees. Under that plan, states could still get ACA Medicaid expansion funding but restrict coverage to enrollees with incomes up to the federal poverty level. Currently, to receive expansion funding, states must offer coverage to everyone up to 138% of the poverty level.

Daniel Derksen, director of the Center for Rural Health at the University of Arizona, said it’s unlikely Arizona would move to eliminate its trigger and make up for lost federal funds. “It would be a tough sell right now as it would put a big strain on the budget,” he said.

Medicaid has been in the crosshairs of Republicans in Washington before. Republican congressional leaders in 2017 proposed legislation to cut federal expansion funding, a move that would have shifted billions in costs to states. That plan, part of a strategy to repeal Obamacare, ultimately failed.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

How Potential Medicaid Cuts Could Play Out in California

In 2017, the Republicans who controlled Congress tried mightily to slash federal spending on Medicaid, the government-funded health program covering low-income families and individuals.

California, like other states, depends heavily on federal dollars to provide care for its poorest residents. Analyses at the time showed the GOP’s proposals would cut Medicaid funds flowing from Washington by tens of billions of dollars, perhaps even more, forcing state officials to rethink the scope of Medi-Cal.

But the GOP efforts ended in failure — iconically crystallized by Arizona Republican Sen. John McCain, sick with terminal brain cancer, issuing his decisive early-morning thumbs-down.

More than seven years later, here we go again.

With Donald Trump preparing to reenter the White House, bolstered once more by Republican majorities in both houses of Congress, expectations are high that the GOP will quickly resurrect its long-desired goal of cutting Medicaid.

Republicans want to finance large tax cuts, and the GOP platform under Trump pledges not to touch Social Security or Medicare. To be sure, that’s not set in stone. But for now, as my KFF colleagues have noted, Medicaid looks an awful lot like low-hanging fruit. (KFF is a health information nonprofit that includes KFF Health News, the publisher of California Healthline.)

Health officials in California and across the nation are on edge about the possibility of large-scale Medicaid cuts being enacted as soon as next year. Such cuts would have an outsize impact in the Golden State, whose 14.7 million Medi-Cal enrollees exceed the entire populations of all but three other U.S. states. Medi-Cal provides health coverage for over 40% of the state’s children and pays for nearly 40% of births. It is a crucial source of funding for safety net hospitals and community clinics.

And over 60% of its $161 billion budget this year comes by way of Washington.

The potential for big federal cuts to Medicaid may have been a factor in Democratic Gov. Gavin Newsom’s decision to call a special session of the state legislature this week.

California could seek to offset a sharp drop in federal dollars with higher taxes or cuts to other state programs. But both those options could be politically untenable. That’s why many health experts think leaders in Sacramento would almost certainly have to consider shrinking Medi-Cal.

That could mean cutting any number of optional benefits, such as dental services, optometry, and physical therapy. It might also mean rolling back some of the ambitious expansion Medi-Cal has undertaken in recent years. That could include some aspects of California Advancing and Innovating Medi-Cal, a $12 billion program of services that address patients’ social and economic needs in addition to their medical ones.

Some observers fear federal cuts could affect the approximately 1.5 million immigrants living in the U.S. without authorization who are enrolled in Medi-Cal at an annual cost of over $6 billion, nearly all of it funded by the state. But others say a more likely route would be to reduce payments across the board to the managed care plans that cover 94% of Medi-Cal enrollees, rather than target any specific groups of people.

“Medicaid is on the chopping block, and I don’t think that’s speculation,” says Gerald Kominski, a senior fellow at the UCLA Center for Health Policy Research. “It is widely viewed by potential members of Trump’s administration as a program that is too broad and needs to be brought under control.”

Whether they can succeed this time remains to be seen. But more on that later.

People who have followed previous GOP efforts to downsize Medicaid say a variety of previously attempted methods might be back on the table this time. They could include outright caps on federal Medicaid dollars; elimination of the core Affordable Care Act policy under which the feds pay 90% of the cost of expanding coverage to a wider swath of low-income adults; a work requirement, which could depress enrollment; and rule changes intended to make it harder for states to draw federal Medicaid dollars through the use of taxes on health care insurers known as MCOs.

The first Trump administration proposed but later dropped changes to the rules governing such taxes. If similar changes were adopted this time around, they could cause financial headaches in California, which has frequently used MCO taxes to offset Medi-Cal spending from state coffers.

Proposition 35, recently passed by California voters, could also be at risk. The initiative calls for the MCO tax to become a permanent fixture in 2027, pending federal approval, with the goal of financing billions of dollars in new Medi-Cal spending, primarily to increase funding for doctors and other providers. A federal rule change could upend those intentions.

Termination of the federal government’s 90% coverage of the ACA Medicaid expansion would put a gaping hole in the Medi-Cal budget. Medi-Cal spent over $34 billion in fiscal year 2023 covering the roughly 5 million people who enrolled as a result of the expansion, and nearly $31 billion of that amount was paid by the federal government.

If the feds’ share dropped back to its regular Medi-Cal rate of 50%, California would have to pony up nearly $14 billion more to keep the expansion enrollees covered — and that’s just for a year.

A more ambitious GOP push, including both spending caps and a rollback of federal support for the Medicaid expansion, could really send California officials scrambling.

In 2017, the state’s Department of Health Care Services issued an analysis showing that a legislative proposal filed by a group of Republican U.S. senators to cap Medicaid spending and end enhanced funding for the ACA expansion, along with some other cuts, would result in nearly $139 billion of lost federal funding to California from 2020 to 2027.

“There are almost limitless changes state leaders could make to Medi-Cal if they are forced to do that,” says David Kane, a senior attorney at the Western Center on Law & Poverty. “And we fear that burden will almost certainly hurt poor people and immigrants the most.”

But big Medicaid cuts are not a foregone conclusion. After all, when Trump was in the White House in 2017, Republicans also had House and Senate majorities and still did not achieve their goal. The political stars could be aligning differently this time, but the GOP has only a razor-thin majority in the House.

A decade into the ACA’s Medicaid expansion, some 21 million people across the country have coverage through it, embedding the program more deeply in the nation’s health care landscape. According to a 2023 study from Georgetown University, Medicaid and the related Children’s Health Insurance Program cover a higher proportion of the population in rural counties than in urban ones. And as we know, rural America leans strongly Republican.

Will GOP members of Congress, faced with a vote on cutting Medicaid, buck their own constituents?

Edwin Park, one of the authors of that Georgetown study, thinks there’s a chance big cuts can be averted. “Large numbers of Americans are either on Medicaid, have family members on Medicaid, or know somebody on Medicaid,” says Park, a research professor at Georgetown’s McCourt School of Public Policy. “Hopefully its popularity and its importance will win the day.”

Nursing Home Industry Wants Trump To Rescind Staffing Mandate

Covid’s rampage through the country’s nursing homes killed more than 172,000 residents and spurred the biggest industry reform in decades: a mandate that homes employ a minimum number of nurses.

But with President-elect Donald Trump’s return to the White House, the industry is ramping up pressure to kill that requirement before it takes effect, leaving thousands of residents in homes too short-staffed to provide proper care.

The nursing home industry has been marshaling opposition for months among congressional Republicans — and some Democrats — to overrule the Biden administration’s mandate. Two industry groups, the American Health Care Association and LeadingAge, have sued to overturn the regulation, and 20 Republican state attorneys general have filed their own challenge.

Consumer advocates, industry officials and independent researchers agree that the incoming administration is likely to rescind the rule, given the first Trump administration’s “patients over paperwork” campaign to remove “unnecessary, obsolete, or excessively burdensome health regulations on hospitals and other healthcare providers.” Among other things, Trump aided the industry by easing fines against homes that had been cited for poor care.

“The Trump administration has proven itself really eager to reverse overreaching regulations,” said Linda Couch, senior vice president for policy and advocacy at LeadingAge, which represents nonprofit elder care providers. “We think it’s got a pretty good chance of being repealed, and hope so.”

Issued in April, the staffing regulation requires nursing homes to have registered nurses on-site around the clock — something that the industry has endorsed — and to maintain minimum numbers of nurses and aides. Four in 5 homes would have to increase staffing. The requirements would be phased in, starting in May 2026.

Even before the election, many experts and activists had doubts that the rule would be effectively enforced, given the poor results in states that have imposed their own minimums. In New York, California, Rhode Island, and Massachusetts — states with the most robust requirements — many homes remain below the legal staffing levels. Governors have given many homes reprieves, and other homes have found that paying penalties costs less than the increase in payroll for additional staff.

The federal government estimates the average annual cost over a decade to meet the Biden mandate would be $4.3 billion a year, a 2% increase in expenses, though the changes do not include increases in federal Medicare or Medicaid payments.

“Staffing is everything in terms of nursing-home quality,” said R. Tamara Konetzka, a professor of public health sciences at the University of Chicago.

While the rule’s effectiveness was uncertain, she worried that repealing it would send the wrong message. “We would be losing that signal that nursing homes should try really hard to improve their staffing,” she said.

Advocate groups for nursing home residents, who had criticized the Biden administration rule for not requiring even higher staffing levels, have since pivoted and are trying to protect it.

“We’re hoping the president-elect will come in and take a look at the science and data behind it and see this really is a modest reform,” said Sam Brooks, the director for public policy for the National Consumer Voice for Quality Long-Term Care, a Washington, D.C.-based nonprofit. “We’d be devastated to see it fall.”

The Trump transition team did not respond to a request for comment. The Department of Health and Human Services did not respond to requests for comment, but in a court filing it argued that nursing homes should be able to reach the required staffing levels.

“There is more than enough time to identify, train and hire additional staff,” the Biden administration wrote.

The quality of care in the nation’s 15,000 nursing homes and the lack of adequate staffing for their 1.2 million residents has been a concern for decades. Inspection reports continue to find homes leaving residents lying in their own feces, suffering severe bedsores and falls, contracting infections, choking on food while unattended, or ending up back in a hospital for preventable reasons. Some nursing homes overuse psychotropic medications to pacify residents because they do not have enough workers to attend to them.

Leslie Frane, executive vice president of the SEIU, the Service Employees International Union, which represents health care workers, said in a statement that “far too many nursing home owners will not do the right thing and invest in workers without oversight and binding regulation.”

The nursing home industry says many homes cannot afford to increase their workforces, and that, even if they could, there is a scarcity of trained nurses, and not enough people willing to work as aides for an average $19 an hour. A registered nurse earns $40 an hour on average in a nursing home, less than what they could make at a hospital, according to the Bureau of Labor Statistics.

The Biden administration noted in its court filing it was planning to spend $75 million to recruit and train more workers, and that there were more than 100,000 workers who left nursing homes during the pandemic and could be lured back if salaries and working conditions were better.

How many nursing homes could afford the increased cost remains a mystery because of weaknesses in the government’s requirements for financial transparency. About half of homes lose money, according to their reports to Medicare, but some nursing home owners grow rich through clandestine maneuvers to siphon profits into their own pockets.

Last month, owners of Centers Health Care, one of New York state’s largest nursing home chains, agreed to pay $45 million to settle allegations by Attorney General Letitia James that they diverted $83 million intended for resident care to themselves during the pandemic.

Maryellen Mooney, a spokesperson for the Centers Health Care chain, which denied the allegations, said in a statement that Centers was “committed to fully implementing the settlement terms, including a significant investment in resident care.”

About three-quarters of nursing homes are for-profit. The industry, though, highlights the most sympathetic examples: rural nonprofit nursing homes like Kimball County Manor & Assisted Living in Kimball, Nebraska. Its staffing levels for registered nurses are 40% below what the new rule would require, federal data shows.

Sarah Stull, Kimball’s administrator, said recruitment had always been challenging and that temporary nursing staffing agencies charged more than double what she paid her own staff.

“We had to pay $65 for a nurse aide during covid, and that’s insane,” she said.

The government estimated that about a fourth of the nation’s nursing homes would be eligible to apply for hardship exemptions if there were a documented shortage of nurses and aides in their communities compared with the national average.

But Nate Schema, the chief executive of the Good Samaritan Society, which runs 133 nonprofit homes mainly in the rural Midwest, estimated that only seven would be likely to qualify for a hardship waiver.

“Philosophically, they sound great,” he said. “But in practicality and how they’re put together, they won’t do much for us.”

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

With Trump on the Way, Advocates Look to States To Pick Up Medical Debt Fight

Worried that President-elect Donald Trump will curtail federal efforts to take on the nation’s medical debt problem, patient and consumer advocates are looking to states to help people who can’t afford their medical bills or pay down their debts.

“The election simply shifts our focus,” said Eva Stahl, who oversees public policy at Undue Medical Debt, a nonprofit that has worked closely with the Biden administration and state leaders on medical debt. “States are going to be the epicenter of policy change to mitigate the harms of medical debt.”

New state initiatives may not be enough to protect Americans from medical debt if the incoming Trump administration and congressional Republicans move forward with plans to scale back federal aid that has helped millions gain health insurance or reduce the cost of their plans in recent years.

Comprehensive health coverage that limits patients’ out-of-pocket costs remains the best defense against medical debt.

But in the face of federal retrenchment, advocates are eyeing new initiatives in state legislatures to keep medical bills off people’s credit reports, a consumer protection that can boost credit scores and make it easier to buy a car, rent an apartment, or even get a job.

Several states are looking to strengthen oversight of medical credit cards and other financial products that can leave patients paying high interest rates on top of their medical debt.

Some states are also exploring new ways to compel hospitals to bolster financial aid programs to help their patients avoid sinking into debt.

“There’s an enormous amount that states can do,” said Elisabeth Benjamin, who leads health care initiatives at the nonprofit Community Service Society of New York. “Look at what’s happened here.”

New York state has enacted several laws in recent years to rein in hospital debt collections and to expand financial aid for patients, often with support from both Democrats and Republicans in the legislature. “It doesn’t matter the party. No one likes medical debt,” Benjamin said.

Other states that have enacted protections in recent years include Arizona, California, Colorado, Connecticut, Florida, Illinois, Minnesota, Nevada, New Jersey, New Mexico, Oregon, Rhode Island, and Washington. Many measures picked up bipartisan support.

President Joe Biden’s administration has proved to be an ally in state efforts to control health care debt. Such debt burdens 100 million people in the United States, a KFF Health News investigation found.

Led by Biden appointee Rohit Chopra, the Consumer Financial Protection Bureau has made medical debt a priority, going after aggressive collectors and exposing problematic practices across the medical debt industry. Earlier this year, the agency proposed landmark regulations to remove medical bills from consumer credit scores.

The White House also championed legislation to boost access to government-subsidized health insurance and to cap out-of-pocket drug costs for seniors, both key bulwarks against medical debt.

Trump hasn’t indicated whether his administration will move ahead with the CFPB credit reporting rule, which was slated to be finalized early next year. Congressional Republicans, who will control the House and Senate next year, have blasted the proposal as regulatory overreach that will compromise the value of credit reports.

And Elon Musk, the billionaire whom Trump has tapped to lead his initiative to shrink government, last week called for the elimination of the watchdog agency. “Delete CFPB,” Musk posted on X.

If the CFPB withdraws the proposed regulation, states could enact their own rules, following the lead of Colorado, New York, and other states that have passed credit reporting bans since 2023. Advocates in Massachusetts are pushing the legislature there to take up a ban when it reconvenes in January.

“There are a lot of different levers that states have to take on medical debt,” said April Kuehnhoff, a senior attorney at the National Consumer Law Center, which has helped lead national efforts to expand debt protections for patients.

Kuehnhoff said she expects more states to crack down on medical credit card providers and other companies that lend money to patients to pay off medical bills, sometimes at double-digit interest rates.

Under the Biden administration, the CFPB has been investigating patient financing companies amid warnings that many people may not understand that signing up for a medical credit card such as CareCredit or enrolling in a payment plan through a financial services company can pile on more debt.

If the CFPB efforts stall under Trump, states could follow the lead of California, New York, and Illinois, which have all tightened rules governing patient lending in recent years.

Consumer advocates say states are also likely to continue expanding efforts to get hospitals to provide more financial assistance to reduce or eliminate bills for low- and middle-income patients, a key protection that can keep people from slipping into debt.

Hospitals historically have not made this aid readily available, prompting states such as California, Colorado, and Washington to set stronger standards to ensure more patients get help with bills they can’t afford. This year, North Carolina also won approval from the Biden administration to withhold federal funding from hospitals in the state unless they agreed to expand financial assistance.

In Georgia, where state government is entirely in Republican control, officials have been discussing new measures to get hospitals to provide more assistance to patients.

“When we talk about hospitals putting profits over patients, we get lots of nodding in the legislature from Democrats and Republicans,” said Liz Coyle, executive director of Georgia Watch, a consumer advocacy nonprofit.

Many advocates caution, however, that state efforts to bolster patient protections will be critically undermined if the Trump administration cuts federal funding for health insurance programs such as Medicaid and the insurance marketplaces established through the Affordable Care Act.

Trump and congressional Republicans have signaled their intent to roll back federal subsidies passed under Biden that make health plans purchased on ACA marketplaces more affordable. That could hike annual premiums by hundreds or even thousands of dollars for many enrollees, according to estimates by the Center on Budget and Policy Priorities, a think tank.

And during Trump’s first term, he backed efforts in Republican-led states to restrict enrollment in their Medicaid safety net programs through rules that would require people to work in order to receive benefits. GOP state leaders in Idaho, Louisiana, and other states have expressed a desire to renew such efforts.

“That’s all a recipe for more medical debt,” said Stahl, of Undue Medical Debt.

Jessica Altman, who heads the Covered California insurance marketplace, warned that federal cuts will imperil initiatives in her state that have limited copays and deductibles and curtailed debt for many state residents.

“States like California that have invested in critical affordable programs for our residents will face tough decisions,” she said.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

Homebound Seniors Living Alone Often Slip Through Health System’s Cracks

Carolyn Dickens, 76, was sitting at her dining room table, struggling to catch her breath as her physician looked on with concern.

“What’s going on with your breathing?” asked Peter Gliatto, director of Mount Sinai’s Visiting Doctors Program.

“I don’t know,” she answered, so softly it was hard to hear. “Going from here to the bathroom or the door, I get really winded. I don’t know when it’s going to be my last breath.”

Dickens, a lung cancer survivor, lives in central Harlem, barely getting by. She has serious lung disease and high blood pressure and suffers regular fainting spells. In the past year, she’s fallen several times and dropped to 85 pounds, a dangerously low weight.

And she lives alone, without any help — a highly perilous situation.

Across the country, about 2 million adults 65 and older are completely or mostly homebound, while an additional 5.5 million seniors can get out only with significant difficulty or assistance. This is almost surely an undercount, since the data is from more than a dozen years ago.

It’s a population whose numbers far exceed those living in nursing homes — about 1.2 million — and yet it receives much less attention from policymakers, legislators, and academics who study aging.

Consider some eye-opening statistics about completely homebound seniors from a study published in 2020 in JAMA Internal Medicine: Nearly 40% have five or more chronic medical conditions, such as heart or lung disease. Almost 30% are believed to have “probable dementia.” Seventy-seven percent have difficulty with at least one daily task such as bathing or dressing.

Almost 40% live by themselves.

That “on my own” status magnifies these individuals’ already considerable vulnerability, something that became acutely obvious during the covid-19 outbreak, when the number of sick and disabled seniors confined to their homes doubled.

“People who are homebound, like other individuals who are seriously ill, rely on other people for so much,” said Katherine Ornstein, director of the Center for Equity in Aging at the Johns Hopkins School of Nursing. “If they don’t have someone there with them, they’re at risk of not having food, not having access to health care, not living in a safe environment.”

Research has shown that older homebound adults are less likely to receive regular primary care than other seniors. They’re also more likely to end up in the hospital with medical crises that might have been prevented if someone had been checking on them.

To better understand the experiences of these seniors, I accompanied Gliatto on some home visits in New York City. Mount Sinai’s Visiting Doctors Program, established in 1995, is one of the oldest in the nation. Only 12% of older U.S. adults who rarely or never leave home have access to this kind of home-based primary care.

Gliatto and his staff — seven part-time doctors, three nurse practitioners, two nurses, two social workers, and three administrative staffers — serve about 1,000 patients in Manhattan each year.

These patients have complicated needs and require high levels of assistance. In recent years, Gliatto has had to cut staff as Mount Sinai has reduced its financial contribution to the program. It doesn’t turn a profit, because reimbursement for services is low and expenses are high.

First, Gliatto stopped in to see Sandra Pettway, 79, who never married or had children and has lived by herself in a two-bedroom Harlem apartment for 30 years.

Pettway has severe spinal problems and back pain, as well as Type 2 diabetes and depression. She has difficulty moving around and rarely leaves her apartment. “Since the pandemic, it’s been awfully lonely,” she told me.

When I asked who checks in on her, Pettway mentioned her next-door neighbor. There’s no one else she sees regularly.

Pettway told the doctor she was increasingly apprehensive about an upcoming spinal surgery. He reassured her that Medicare would cover in-home nursing care, aides, and physical therapy services.

“Someone will be with you, at least for six weeks,” he said. Left unsaid: Afterward, she would be on her own. (The surgery in April went well, Gliatto reported later.)

The doctor listened carefully as Pettway talked about her memory lapses.

“I can remember when I was a year old, but I can’t remember 10 minutes ago,” she said. He told her that he thought she was managing well but that he would arrange testing if there was further evidence of cognitive decline. For now, he said, he’s not particularly worried about her ability to manage on her own.

A doctor performs a visual exam on a senior female patient
Physician Peter Gliatto visits Marianne Gluck Morrison in her cluttered Greenwich Village apartment. Morrison said she’d been feeling dizzy over the past few weeks, and Gliatto gave her a basic neurological exam, asking her to follow his fingers with her eyes and touch her fingers to her nose. “I think your problem is with your ear, not your brain,” he tells her, describing symptoms of vertigo. (Judith Graham for KFF Health News)

A doctor performs at home medical assessment of a senior female.
Sandra Pettway never married or had children. She’s lived by herself in a two-bedroom Harlem apartment for 30 years. Pettway has severe spinal problems, back pain, Type 2 diabetes, and depression. She has difficulty moving around and rarely leaves her apartment. “Since the pandemic, it’s been awfully lonely,” she says. (Judith Graham for KFF Health News)

Several blocks away, Gliatto visited Dickens, who has lived in her one-bedroom Harlem apartment for 31 years. Dickens told me she hasn’t seen other people regularly since her sister, who used to help her out, had a stroke. Most of the neighbors she knew well have died. Her only other close relative is a niece in the Bronx whom she sees about once a month.

Dickens worked with special-education students for decades in New York City’s public schools. Now she lives on a small pension and Social Security — too much to qualify for Medicaid. (Medicaid, the program for low-income people, will pay for aides in the home. Medicare, which covers people over age 65, does not.) Like Pettway, she has only a small fixed income, so she can’t afford in-home help.

Every Friday, God’s Love We Deliver, an organization that prepares medically tailored meals for sick people, delivers a week’s worth of frozen breakfasts and dinners that Dickens reheats in the microwave. She almost never goes out. When she has energy, she tries to do a bit of cleaning.

Without the ongoing attention from Gliatto, Dickens doesn’t know what she’d do. “Having to get up and go out, you know, putting on your clothes, it’s a task,” she said. “And I have the fear of falling.”

The next day, Gliatto visited Marianne Gluck Morrison, 73, a former survey researcher for New York City’s personnel department, in her cluttered Greenwich Village apartment. Morrison, who doesn’t have any siblings or children, was widowed in 2010 and has lived alone since.

Morrison said she’d been feeling dizzy over the past few weeks, and Gliatto gave her a basic neurological exam, asking her to follow his fingers with her eyes and touch her fingers to her nose.

“I think your problem is with your ear, not your brain,” he told her, describing symptoms of vertigo.

Because she had severe wounds on her feet related to Type 2 diabetes, Morrison had been getting home health care for several weeks through Medicare. But those services — help from aides, nurses, and physical therapists — were due to expire in two weeks.

“I don’t know what I’ll do then, probably just spend a lot of time in bed,” Morrison told me. Among her other medical conditions: congestive heart failure, osteoarthritis, an irregular heartbeat, chronic kidney disease, and depression.

Morrison hasn’t left her apartment since November 2023, when she returned home after a hospitalization and several months at a rehabilitation center. Climbing the three steps that lead up into her apartment building is simply too hard.

“It’s hard to be by myself so much of the time. It’s lonely,” she told me. “I would love to have people see me in the house. But at this point, because of the clutter, I can’t do it.”

When I asked Morrison who she feels she can count on, she listed Gliatto and a mental health therapist from Henry Street Settlement, a social services organization. She has one close friend she speaks with on the phone most nights.

“The problem is I’ve lost eight to nine friends in the last 15 years,” she said, sighing heavily. “They’ve died or moved away.”

Bruce Leff, director of the Center for Transformative Geriatric Research at the Johns Hopkins School of Medicine, is a leading advocate of home-based medical care. “It’s kind of amazing how people find ways to get by,” he said when I asked him about homebound older adults who live alone. “There’s a significant degree of frailty and vulnerability, but there is also substantial resilience.”

With the rapid expansion of the aging population in the years ahead, Leff is convinced that more kinds of care will move into the home, everything from rehab services to palliative care to hospital-level services.

“It will simply be impossible to build enough hospitals and health facilities to meet the demand from an aging population,” he said.

But that will be challenging for homebound older adults who are on their own. Without on-site family caregivers, there may be no one around to help manage this home-based care.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

A Toddler Got a Nasal Swab Test but Left Before Seeing a Doctor. The Bill was $445.

Ryan Wettstein Nauman was inconsolable one evening last December. After being put down for bed, the 3-year-old from Peoria, Illinois, just kept crying and crying and crying, and nothing would calm her down.

Her mother, Maggi Wettstein, remembered fearing it could be a yeast or urinary tract infection, something they had been dealing with during potty training. The urgent care centers around them were closed for the night, so around 10:30 p.m. she decided to take Ryan to the emergency room at Carle Health.

The Medical Procedure

The ER wasn’t very busy when they arrived at 10:48 p.m., Wettstein recalled. Medical records indicate they checked in and she explained Ryan’s symptoms, including an intermittent fever. The toddler was triaged and given a nasal swab test to check for covid-19 and influenza A and B.

Wettstein said they sat down and waited to be called. And they waited.

As Wettstein watched Ryan in the waiting room’s play area, she noticed her daughter had stopped crying.

In fact, she seemed fine.

So Wettstein decided to drive them home. Ryan had preschool the next day, and she figured there was no point keeping her awake for who knew how much longer and getting stuck with a big ER bill.

There was no one at the check-in desk to inform that they were leaving, Wettstein said, so they just headed home to go to bed.

Ryan went to her preschool the next day, and Wettstein said they forgot all about the ER trip for eight months.

Then the bill came.

The Final Bill

$445 for the combined covid and flu test — from an ER visit in which the patient never made it beyond the waiting room.

The Billing Problem: A Healthy Hospital Markup and Standard Insurance Rules

Even though Ryan and her mother left without seeing a doctor, the family ended up owing $298.15 after an insurance discount.

At first, Wettstein said, she couldn’t recall Ryan being tested at all. It wasn’t until she received the bill and requested her daughter’s medical records that she learned the results. (Ryan tested negative for covid and both types of flu.)

While Wettstein said the bill isn’t going to break the bank, it seemed high to her, considering Walgreens sells an at-home covid and flu combination test for $30 and can do higher-quality PCR testing for $145.

A photo of Ryan Wettstein Nauman.
Maggi Wettstein was charged $445 for the combined covid and flu test — from an ER visit in which her daughter never made it beyond the waiting room.(Ron Johnson for KFF Health News)

Under the public health emergency declared in 2020 for the covid pandemic, insurance companies were required to pay for covid tests without copayments or cost sharing for patients.

That requirement ended when the emergency declaration expired in May 2023. Now, it is often patients who foot the bill — and ER bills are notoriously high.

“That’s a pretty healthy markup the hospital is making on it,” Loren Adler, associate director of the Brookings Institution Center on Health Policy, told KFF Health News when contacted about Ryan’s case.

The rates the insurance companies negotiate with hospitals for various procedures are often based on multipliers of what Medicare pays, Adler said.

Lab tests are one of the few areas in which insurance companies can often pay less than Medicare, he said — the exception being when the test is performed by the hospital laboratory, which is often what happens during ER visits.

Medicare pays $142.63 for the joint test that Ryan received, but the family is on the hook for more than twice that amount, and the initial hospital charge was over three times as much.

The hospital is “utilizing their market power to make as much money as possible, and the insurance companies are not all that good at pushing back,” Adler said. A markup of a few hundred dollars is a drop in the bucket for big insurers. But for the patients who get unexpected bills, it can be a big burden.

Brittany Simon, a public relations manager for Carle Health, did not respond to specific questions but said in a statement, “We follow policies that support the safety and wellbeing of our patients, which includes the initial triage of symptomatic patients to the Emergency Department.”

While Ryan’s family would not have had to pay for a covid test during the public health emergency, it was the family’s insurer, Cigna, that did not have to pay this time, since the family had not yet met a $3,000 yearly deductible.

A Cigna representative did not respond to requests for comment.

The Resolution

Wettstein said she knew she could just pay the bill and be done with it, “but the fact that I never saw a provider, and the fact that it was just for a covid test, is mind-blowing to me.”

She contacted the hospital’s billing department to make sure the bill was correct. She explained what happened and said the hospital representative was also surprised by the size of the bill and sent it up for further review.

“‘Don’t pay this until you hear from me,’” Wettstein remembered being told.

Soon, though, she received a letter from the hospital explaining that the charge was correct and supported by documentation.

Wettstein thought she was avoiding any charges by taking Ryan home without being seen. Instead, she got a bill “that they have verified that I have to pay.”

“Like I said, it’s mind-blowing to me.”

A photo of Maggi Wettstein with her daughter.
(Ron Johnson for KFF Health News)

The Takeaway

ERs are among the most expensive options for care in the nation’s health system, and the meter can start running as soon as you check in — even if you check out before receiving care.

If your issue isn’t life-threatening, consider an urgent care facility, which is often cheaper (and look for posted notices to confirm whether it’s actually an urgent care clinic). The urgent care centers near Ryan’s home were closed that evening, but some facilities stay open late or around the clock.

In some ways, Wettstein was lucky. KFF Health News’ “Bill of the Month” has received tips from other patients who left an ER after a long wait without seeing a doctor — and got slapped with a facility fee of over $1,000.

Making the decision about where to go is tough, especially in a stressful situation — such as when the patient is too young to communicate what’s wrong. Trying to figure out what’s going on physically with a 3-year-old can feel impossible.

If you decide to leave an ER without treatment, don’t just walk out. Tell the triage nurse you’re leaving. You might get lucky and avoid some charges.

Wettstein won’t think twice about taking Ryan to the pediatrician or an urgent care center the next time she’s ailing. But, Wettstein said, after getting this bill, “I’m not going to create a habit out of going to the emergency room.”

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.