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Alanys Ortiz reads Josephine Senek’s cues before she speaks. Josephine, who lives with a rare and debilitating genetic condition, fidgets her fingers when she’s tired and bites the air when something hurts.

Josephine, 16, has been diagnosed with tetrasomy 8p mosaicism, severe autism, severe obsessive-compulsive disorder, and attention-deficit/hyperactivity disorder, among other conditions, which will require constant assistance and supervision for the rest of her life.

Ortiz, 25, is Josephine’s caregiver. A Venezuelan immigrant, Ortiz helps Josephine eat, bathe, and perform other daily tasks that the teen cannot do alone at her home in West Orange, New Jersey. Over the past 2½ years, Ortiz said, she has developed an instinct for spotting potential triggers before they escalate. She closes doors and peels barcode stickers off apples to ease Josephine’s anxiety.

But Ortiz’s ability to work in the U.S. has been thrown into doubt by the Trump administration, which ordered an end to the temporary protected status program for some Venezuelans on April 7. On March 31, a federal judge paused the order, giving the administration a week to appeal. If the termination goes through, Ortiz would have to leave the country or risk detention and deportation.

“Our family would be gutted beyond belief,” said Krysta Senek, Josephine’s mother, who has been trying to win a reprieve for Ortiz.

Americans depend on many such foreign-born workers to help care for family members who are older, injured, or disabled and cannot care for themselves. Nearly 6 million people receive personal care in a private home or a group home, and about 2 million people use these services in a nursing home or other long-term care institution, according to a Congressional Budget Office analysis.

Increasingly, the workers who provide that care are immigrants such as Ortiz. The foreign-born share of nursing home workers rose three percentage points from 2007 to 2021, to about 18%, according to an analysis of census data by the Baker Institute for Public Policy at Rice University in Houston.

And foreign-born workers make up a high share of other direct care providers. More than 40% of home health aides, 28% of personal care workers, and 21% of nursing assistants were foreign-born in 2022, compared with 18% of workers overall that year, according to Bureau of Labor Statistics data.

That workforce is in jeopardy amid an immigration crackdown President Donald Trump launched on his first day back in office. He signed executive orders that expanded the use of deportations without a court hearing, suspended refugee resettlements, and more recently ended humanitarian parole programs for nationals of Cuba, Haiti, Nicaragua, and Venezuela.

In invoking the Alien Enemies Act to deport Venezuelans and attempting to revoke legal permanent residency for others, the Trump administration has sparked fear that even those who have followed the nation’s immigration rules could be targeted.

“There's just a general anxiety about what this could all mean, even if somebody is here legally,” said Katie Smith Sloan, president of LeadingAge, a nonprofit representing more than 5,000 nursing homes, assisted living facilities, and other services for aging patients. “There's concern about unfair targeting, unfair activity that could just create trauma, even if they don't ultimately end up being deported, and that's disruptive to a health care environment.”

Shutting down pathways for immigrants to work in the United States, Smith Sloan said, also means many other foreign workers may go instead to countries where they are welcomed and needed.

“We are in competition for the same pool of workers,” she said.

Growing Demand as Labor Pool Likely To Shrink

Demand for caregivers is predicted to surge in the U.S. as the youngest baby boomers reach retirement age, with the need for home health and personal care aides projected to grow about 21% over a decade, according to the Bureau of Labor Statistics. Those 820,000 additional positions represent the most of any occupation. The need for nursing assistants and orderlies also is projected to grow, by about 65,000 positions.

Caregiving is often low-paying and physically demanding work that doesn’t attract enough native-born Americans. The median pay ranges from about $34,000 to $38,000 a year, according to the Bureau of Labor Statistics.

Nursing homes, assisted living facilities, and home health agencies have long struggled with high turnover rates and staffing shortages, Smith Sloan said, and they now fear that Trump’s immigration policies will choke off a key source of workers, leaving many older and disabled Americans without someone to help them eat, dress, and perform daily activities.

With the Trump administration reorganizing the Administration for Community Living, which runs programs supporting older adults and people with disabilities, and Congress considering deep cuts to Medicaid, the largest payer for long-term care in the nation, the president’s anti-immigration policies are creating “a perfect storm” for a sector that has not recovered from the covid-19 pandemic, said Leslie Frane, an executive vice president of the Service Employees International Union, which represents nursing facility workers and home health aides.

The relationships caregivers build with their clients can take years to develop, Frane said, and replacements are already hard to find.

In September, LeadingAge called for the federal government to help the industry meet staffing needs by raising caps on work-related immigration visas, expanding refugee status to more people, and allowing immigrants to test for professional licenses in their native language, among other recommendations.

But, Smith Sloan said, “There's not a lot of appetite for our message right now.”

The White House did not respond to questions about how the administration would address the need for workers in long-term care. Spokesperson Kush Desai said the president was given “a resounding mandate from the American people to enforce our immigration laws and put Americans first” while building on the “progress made during the first Trump presidency to bolster our healthcare workforce and increase healthcare affordability.”

Refugees Fill Nursing Home Jobs in Wisconsin

Until Trump suspended the refugee resettlement program, some nursing homes in Wisconsin had partnered with local churches and job placement programs to hire foreign-born workers, said Robin Wolzenburg, a senior vice president for LeadingAge Wisconsin.

Many work in food service and housekeeping, roles that free up nurses and nursing assistants to work directly with patients. Wolzenburg said many immigrants are interested in direct care roles but take on ancillary roles because they cannot speak English fluently or lack U.S. certification.

Through a partnership with the Wisconsin health department and local schools, Wolzenburg said, nursing homes have begun to offer training in English, Spanish, and Hmong for immigrant workers to become direct care professionals. Wolzenburg said the group planned to roll out training in Swahili soon for Congolese women in the state.

Over the past 2½ years, she said, the partnership helped Wisconsin nursing homes fill more than two dozen jobs. Because refugee admissions are suspended, Wolzenburg said, resettlement agencies aren’t taking on new candidates and have paused job placements to nursing homes.

Many older and disabled immigrants who are permanent residents rely on foreign-born caregivers who speak their native language and know their customs. Frane with the SEIU noted that many members of San Francisco’s large Chinese American community want their aging parents to be cared for at home, preferably by someone who can speak the language.

“In California alone, we have members who speak 12 different languages,” Frane said. “That skill translates into a kind of care and connection with consumers that will be very difficult to replicate if the supply of immigrant caregivers is diminished.”

The Ecosystem a Caregiver Supports

Caregiving is the kind of work that makes other work possible, Frane said. Without outside caregivers, the lives of the patient and their loved ones become more difficult logistically and economically.

“Think of it like pulling out a Jenga stick from a Jenga pile, and the thing starts to topple,” she said.

Thanks to the one-on-one care from Ortiz, Josephine has learned to communicate when she’s hungry or needs help. She now picks up her clothes and is learning to do her own hair. With her anxiety more under control, the violent meltdowns that once marked her weeks have become far less frequent, Ortiz said.

“We live in Josephine’s world,” Ortiz said in Spanish. “I try to help her find her voice and communicate her feelings.”

Ortiz moved to New Jersey from Venezuela in 2022 as part of an au pair program that connects foreign-born workers with people who are older or children with disabilities who need a caregiver at home. Fearing political unrest and crime in her home country, she got temporary protected status when her visa expired last year to keep her authorization to work in the United States and stay with Josephine.

Losing Ortiz would upend Josephine’s progress, Senek said. The teen would lose not only a caregiver, but also a sister and her best friend. The emotional impact would be devastating.

“You have no way to explain to her, ‘Oh, Alanys is being kicked out of the country, and she can't come back,’” she said.

It’s not just Josephine: Senek and her husband depend on Ortiz so they can work full-time jobs and take care of themselves and their marriage. “She's not just an au pair,” Senek said.

The family has called its congressional representatives for help. Even a relative who voted for Trump sent a letter to the president asking him to reconsider his decision.

In the March 31 court decision, U.S. District Judge Edward Chen wrote that canceling the protection could “inflict irreparable harm on hundreds of thousands of persons whose lives, families, and livelihoods will be severely disrupted.”

‘Doing the Work That Their Own People Don’t Want To Do’

News of immigration dragnets that sweep up lawfully present immigrants and mass deportations are causing a lot of stress, even for those who have followed the rules, said Nelly Prieto, 62, who cares for an 88-year-old man with Alzheimer’s disease and a man in his 30s with Down syndrome in Yakima County, Washington.

Born in Mexico, she immigrated to the United States at age 12 and became a U.S. citizen under a law authorized by President Ronald Reagan that made any immigrant who entered the country before 1982 eligible for amnesty. So, she’s not worried for herself. But, she said, some of her co-workers working under H-2B visas are very afraid.

“It kills me to see them when they talk to me about things like that, the fear in their faces,” she said. “They even have letters, notarized letters, ready in case something like that happens, saying where their kids can go.”

Foreign-born home health workers feel they are contributing a valuable service to American society by caring for its most vulnerable, Prieto said. But their efforts are overshadowed by rhetoric and policies that make immigrants feel as if they don’t belong.

“If they cannot appreciate our work, if they cannot appreciate us taking care of their own parents, their own grandparents, their own children, then what else do they want?” she said. “We’re only doing the work that their own people don’t want to do.”

In New Jersey, Ortiz said life has not been the same since she received the news that her TPS authorization was slated to end soon. When she walks outside, she fears that immigration agents will detain her just because she’s from Venezuela.

She’s become extra cautious, always carrying proof that she’s authorized to work and live in the U.S.

Ortiz worries that she’ll end up in a detention center. But even if the U.S. now feels less welcoming, she said, going back to Venezuela is not a safe option.

“I might not mean anything to someone who supports deportations,” Ortiz said. “I know I'm important to three people who need me."

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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Alanys Ortiz entiende las señales de Josephine Senek antes de que ella pueda decir nada. Josephine, quien vive con una rara y debilitante condición genética, mueve los dedos cuando está cansada y muerde el aire cuando algo le duele.

Josephine tiene 16 años y ha sido diagnosticada con mosaicismo de tetrasomía 8p, autismo severo, trastorno obsesivo-compulsivo grave y trastorno por déficit de atención con hiperactividad, entre otras afecciones. Todo esto significa que necesitará asistencia y acompañamiento constantes toda su vida.

Ortiz, de 25 años, es la cuidadora de Josephine. Esta inmigrante venezolana la ayuda a comer, bañarse y hacer tareas diarias que la adolescente no puede hacer sola en su casa en West Orange, Nueva Jersey.

Ortiz cuenta que, en los últimos dos años y medio, ha desarrollado un instinto que le permite detectar posibles factores desencadenantes de las crisis antes de que se agudicen. Por ejemplo, cierra las puertas y les quita las etiquetas de códigos de barras a las manzanas para reducir la ansiedad de Josephine.

Sin embargo, la posibilidad de trabajar en Estados Unidos puede estar en peligro para Ortiz. La administración Trump ordenó poner fin al programa de Estatus de Protección Temporal (TPS) para algunos venezolanos a partir del 7 de abril. El 31 de marzo, un juez federal suspendió la orden, dando a la administración una semana para apelar.

Si el programa se suspende, Ortiz tendrá que abandonar el país o arriesgarse a ser detenida y deportada.

“Nuestra familia quedaría devastada más allá de lo imaginable”, afirma Krysta Senek, la madre de Josephine, quien ha estado buscando un indulto para Ortiz.

Los estadounidenses dependen de muchos trabajadores nacidos en el extranjero para cuidar a sus familiares mayores, lesionados o discapacitados que no pueden valerse por sí mismos.

Según un análisis de la Oficina de Presupuesto del Congreso, casi 6 millones de personas reciben atención personal en un hogar privado o en una residencia grupal, y alrededor de 2 millones utilizan estos servicios en residencias para personas mayores u otras instituciones de cuidado a largo plazo.

Cada vez con más frecuencia, estos cuidadores son inmigrantes como Ortiz. En los centros de cuidados para adultos mayores, la proporción de trabajadores nacidos en el extranjero aumentó tres puntos porcentuales entre 2007 y 2021, hasta alcanzar aproximadamente el 18%, según un análisis de datos del Censo del Instituto Baker de Política Pública de la Universidad Rice, en Houston.

Además, los trabajadores nacidos en el extranjero representan una gran parte de otros proveedores de cuidados directos.

En 2022, más del 40% de los asistentes de salud a domicilio, el 28% de los trabajadores de cuidado personal y el 21% de los asistentes de enfermería habían nacido en el extranjero, un número superior al 18% de extranjeros en el total de la economía ese año, según datos de la Oficina de Estadísticas Laborales.

Esa fuerza laboral está en riesgo como consecuencia de la ofensiva contra los inmigrantes que Donald Trump lanzó en el primer día de su segunda administración.

El presidente firmó órdenes ejecutivas que ampliaron los casos en los que se pueden decidir las deportaciones sin audiencia judicial, suspendieron los programas de reasentamiento de los refugiados y, más recientemente, pusieron fin a los programas de permiso humanitario para ciudadanos de Cuba, Haití, Nicaragua y Venezuela.

Recurriendo a la Ley de Enemigos Extranjeros para deportar a venezolanos e intentando revocar la residencia permanente de otros, la administración Trump ha generado temor incluso entre aquellos que han seguido las reglas de inmigración del país.

"Hay una ansiedad general sobre lo que esto podría significar, incluso si alguien está aquí legalmente", dijo Katie Smith Sloan, presidenta de LeadingAge, una organización sin fines de lucro que representa a más de 5.000 residencias, hogares de cuidados asistidos y otros servicios para adultos mayores.

“Existe preocupación por la persecución injusta, por acciones que pueden ser traumáticas incluso si finalmente esas personas no terminan siendo deportadas. Pero toda esa situación, ya de por sí, altera el entorno de atención de salud”.

Según explicó Smith Sloan, cerrar las vías legales para que los inmigrantes trabajen en Estados Unidos también implica que muchos optarán por irse a países donde sí son bienvenidos y necesarios.

“Estamos compitiendo por el mismo grupo de trabajadores”, afirmó.

Más demanda, menos trabajadores

Se prevé que la demanda de trabajadores que realizan tareas de cuidado aumente considerablemente en el país, a medida que los baby boomers más jóvenes lleguen a la edad de su jubilación.

Según las proyecciones de la Oficina de Estadísticas Laborales, la necesidad de asistentes de salud y de cuidado personal a domicilio crecerá hasta cerca del 21% en el transcurso de la próxima década.

Esos 820.000 puestos adicionales representan el mayor aumento entre todas las actividades laborales. También se proyecta un crecimiento en la demanda de auxiliares de enfermería y camilleros, con un incremento de alrededor de 65.000 puestos.

El trabajo de cuidado suele ser mal remunerado y físicamente exigente, por lo que en general no atrae a suficientes estadounidenses nativos. El salario medio oscila, según la misma Oficina, entre $34.000 y $38.000 anuales.

Los hogares para adultos mayores, las residencias geriátricas con asistencia y las agencias de atención domiciliaria han lidiado durante mucho tiempo con altas tasas de rotación de personal y escasez de empleados, señaló Smith Sloan.

Ahora, además, temen que las políticas migratorias de Trump corten una fuente clave de trabajadores, dejando a muchas personas de edad avanzada, o con discapacidades, sin alguien que las ayude a comer, a vestirse y a realizar sus actividades cotidianas.

Con el gobierno de Trump reorganizando la Administración para la Vida Comunitaria —encargada de los programas que apoyan a adultos mayores y personas con discapacidades— y el Congreso considerando recortes radicales a Medicaid (el mayor financiador de cuidados a largo plazo en el país), las políticas antiinmigración del presidente están generando “la tormenta perfecta” para un sector que aún no se ha recuperado de la pandemia de covid-19, opinó Leslie Frane, vicepresidenta ejecutiva del Sindicato Internacional de Empleados de Servicios, que representa a estos trabajadores.

Frane señaló que la relación que los cuidadores construyen con sus pacientes puede tardar años en desarrollarse, y que hoy ya es muy complicado encontrar personas que los reemplacen.

En septiembre, la organización LeadingAge hizo un llamado al gobierno federal para que ayudara a la industria a cubrir sus necesidades de personal. Le propuso, entre otras recomendaciones, que aumentara los cupos de visas de inmigración relacionadas con estos trabajos, ampliara el estatus de refugiado a más personas y permitiera que los inmigrantes rindieran los exámenes de certificación profesional en su idioma nativo.

Pero, agregó Smith Sloan, “en este momento no hay mucho interés en nuestro mensaje”.

La Casa Blanca no respondió a las preguntas sobre cómo la administración abordaría la necesidad de aumentar el número de trabajadores en el sector de cuidados a largo plazo.

El vocero Kush Desai declaró que el presidente recibió “un mandato contundente del pueblo estadounidense para hacer cumplir nuestras leyes migratorias y poner a los estadounidenses en primer lugar”, al tiempo que -dijo- continúa con “los avances logrados durante la primera presidencia de Trump para fortalecer al personal del sector salud y hacer que la atención médica sea más accesible”.

En Wisconsin, refugiados trabajan con adultos mayores

Hasta que Trump suspendió el programa de reasentamiento de refugiados, en Wisconsin algunas residencias de adultos mayores se habían asociado con iglesias locales y programas de inserción laboral para contratar trabajadores nacidos en el extranjero, explicó Robin Wolzenburg, vicepresidente senior de LeadingAge Wisconsin.

Muchas de estas personas trabajan en el servicio de comidas y en la limpieza, funciones que liberan a las enfermeras y auxiliares de enfermería para que puedan atender directamente a los pacientes.

Sin embargo, Wolzenburg agregó que muchos inmigrantes están interesados en asumir funciones de atención directa, pero que se emplean en funciones auxiliares porque no hablan inglés con fluidez o no tienen una certificación válida estadounidense.

Wolzenburg contó que, a través de una asociación con el departamento de salud de Wisconsin y las escuelas locales, los hogares de adultos mayores han comenzado a ofrecer formación en inglés, español y hmong para que los trabajadores inmigrantes puedan convertirse en profesionales de atención directa.

Dijo también que el grupo planeaba impartir pronto una capacitación en swahili para las mujeres congoleñas que viven en el estado.

En los últimos dos años y medio, esta colaboración ayudó a los centros de cuidados para personas mayores de Wisconsin a cubrir más de una veintena de puestos de trabajo, dijo.

Sin embargo, Wolzenburg explicó que, por la suspensión de las admisiones de refugiados, las agencias de reasentamiento no están incorporando nuevos candidatos y han puesto una pausa a la incorporación de estos trabajadores.

Muchos inmigrantes mayores o que tienen alguna discapacidad, y a la vez son residentes permanentes, dependen de cuidadores nacidos en el extranjero que hablen su idioma y conozcan sus costumbres.

Frane, del sindicato SEIU, señaló que muchos miembros de la numerosa comunidad chino-estadounidense de San Francisco quieren que sus padres mayores reciban atención en casa, preferiblemente de alguien que hable su mismo idioma.

“Solo en California, tenemos miembros del sindicato que hablan 12 lenguas diferentes, dijo Frane. Esa habilidad se traduce en una calidad de atención y una conexión con los usuarios que será muy difícil de replicar si disminuye la cantidad de cuidadores inmigrantes”.

El ecosistema que depende del trabajo de un cuidador

Las tareas de cuidado son el tipo de trabajo que permite que otros trabajos sean posibles, sostuvo Frane. Sin cuidadores externos, la vida de los pacientes y de sus seres queridos se vuelve más difícil desde el punto de vista logístico y económico.

“Es como sacar el pilar que sostiene todo lo demás: el sistema entero tambalea”, agregó.

Gracias a la atención personalizada de Ortiz, Josephine ha aprendido a comunicar cuando tiene hambre o necesita ayuda. Ahora recoge su ropa y está comenzando a peinarse sola. Como su ansiedad está más controlada, las crisis violentas que antes solían repetirse semana tras semana se han vuelto mucho menos frecuentes, dijo Ortiz.

"Vivimos en el mundo de Josephine", explica Ortiz en español. "Intento ayudarla a encontrar su voz y a expresar sus sentimientos".

Ortiz llegó a Nueva Jersey desde Venezuela en 2022 a través de un programa de Au Pair para conectar trabajadores nacidos en el extranjero con personas mayores o niños con discapacidades que necesitan cuidados en su hogar.

Temerosa de la inestabilidad política y la inseguridad en su país, cuando su visa expiró obtuvo el TPS el año pasado. Quería seguir trabajando en Estados Unidos, y quedarse con Josephine.

Perder a Ortiz sería un golpe devastador para el progreso de Josephine, aseguró Senek. La adolescente no solo se quedaría sin su cuidadora, sino también sin una hermana y su mejor amiga. El impacto emocional sería enorme.

"Nosotros no tenemos ninguna manera de explicarle a Josephine que Alanys está siendo expulsada del país y que no puede volver'", dijo Senek.

No se trata solo de Josephine: Senek y su esposo también dependen de Ortiz para poder trabajar a tiempo completo y cuidar de sí mismos y de su matrimonio. “Ella no es solo una Au Pair”, dijo Senek.

La familia ha contactado a sus representantes en el Congreso en busca de ayuda. Incluso un familiar que votó por Trump le envió una carta al presidente pidiéndole que reconsiderara su decisión.

En el fallo judicial del 31 de marzo, el juez federal Edward Chen escribió que cancelar esta protección podría “ocasionar un daño irreparable a cientos de miles de personas cuyas vidas, familias y medios de subsistencia se verán gravemente afectados”.

“Solo estamos haciendo el trabajo que su propia gente no quiere hacer”

Las noticias sobre redadas migratorias que detienen incluso a inmigrantes con estatus legal y las deportaciones masivas están generando mucho estrés, incluso entre quienes han seguido todas las reglas, comentó Nelly Prieto, de 62 años, quien cuida a un hombre de 88 con Alzheimer y a otro de unos 30 con síndrome de Down en el condado de Yakima, Washington.

Nacida en México, Prieto emigró a Estados Unidos a los 12 años y se convirtió en ciudadana estadounidense en virtud de una ley impulsada por el presidente Ronald Reagan que ofrecía amnistía a cualquier inmigrante que hubiera entrado en el país antes de 1982. Así que ella no está preocupada por sí misma. Pero, dijo, algunos de sus compañeros de trabajo con visados H-2B tienen mucho miedo.

“Me parte el alma verlos cuando me hablan de estas cosas, el miedo en sus rostros”, dijo. “Incluso tienen preparadas cartas firmadas ante un notario diciendo con quién deben quedarse sus hijos, por si algo llega a pasar”.

Los trabajadores de salud a domicilio que nacieron en el extranjero sienten que están contribuyendo con un servicio valioso a la sociedad estadounidense al cuidar de sus miembros más vulnerables, dijo Prieto. Pero sus esfuerzos se ven ensombrecidos por los discursos y las políticas que hacen que los inmigrantes se sientan como si fueran ajenos al país.

“Si no pueden apreciar nuestro trabajo, si no pueden apreciar que cuidemos de sus propios padres, de sus propios abuelos, de sus propios hijos, entonces, ¿qué más quieren?”, dijo. “Solo estamos haciendo el trabajo que su propia gente no quiere hacer”.

En Nueva Jersey, Ortiz contó que su vida no ha sido la misma desde que recibió la noticia de que su permiso bajo el TPS está por terminar. Cada vez que sale a la calle, teme que agentes de inmigración la detengan solo por ser venezolana.

Se ha vuelto mucho más precavida: siempre lleva consigo documentos que prueban que tiene autorización para vivir y trabajar en Estados Unidos.

Ortiz teme terminar en un centro de detención. Aunque Estados Unidos ahora no es un lugar acogedor, consideró que regresar a Venezuela no es una opción segura.

“Puede que yo no signifique nada para alguien que apoya las deportaciones”, dijo Ortiz. “Pero sé que soy importante para tres personas que me necesitan”.

Esta historia fue producida por Kaiser Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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

USE OUR CONTENT

This story can be republished for free (details).

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

The Department of Health and Human Services underwent an unprecedented purge this week, as thousands of employees from the National Institutes of Health, the FDA, the Centers for Disease Control and Prevention, and other agencies across the department were fired, placed on administrative leave, or offered transfers to far-flung Indian Health Service facilities in such places as New Mexico, Montana, and Alaska. Altogether, the layoffs mean the federal government, in a single day, shed hundreds if not thousands of years of health and science expertise.

Meanwhile, the Supreme Court heard a case about whether states can bar Planned Parenthood from providing non-abortion-related services to Medicaid patients. But by the time the case is settled, it’s unclear how much of Medicaid or the Title X Family Planning Program will remain intact.

 This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs Zhang of Bloomberg News, Sarah Karlin-Smith of the Pink Sheet, and Lauren Weber of The Washington Post.

Panelists Rachel Cohrs Zhang Bloomberg News @rachelcohrs Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories. Lauren Weber The Washington Post @LaurenWeberHP Read Lauren's stories.

Among the takeaways from this week’s episode:

• As details trickle out about the major staffing purge underway at HHS, long-serving and high-ranking health officials are among those who have been shown the door: in particular, senior scientists at FDA, including the top vaccine regulator, and even the head veterinarian working on bird flu response.
• The Trump administration has also gutted entire offices, including the FDA’s tobacco division — even though the division’s elimination would not save taxpayer money because it’s not funded by taxpayers. Still, the tobacco industry stands to benefit from less regulatory oversight. Many health agencies have their own examples of federal jobs cut under the auspices of saving taxpayer money when the true effect will be undermining federal health work.
• Democratic Sen. Cory Booker of New Jersey set a record this week during a marathon, 25-hour-plus chamber floor speech railing against Trump administration actions, and he used much of his time discussing the risks posed to Americans’ health care. With Republicans considering deep cuts that could hit Medicaid hard, it’s possible that health changes could be the area that resonates most with Americans and garner key support for Democrats come midterm elections.
• And the tariffs unveiled by President Donald Trump this week reportedly touch at least some pharmaceuticals, leaving the drug industry scrambling to sort out the impact. It seems likely tariffs would raise the prices Americans pay for drugs, as tariffs are expected to do for other consumer products — leaving it unclear how Americans stand to benefit from the president’s decision to upend global trade.

Also this week, Rovner interviews KFF Health News’ Julie Appleby, whose latest “Bill of the Month” feature is about a short-term health plan and a very expensive colonoscopy. Do you have a baffling, confusing, or outrageous medical bill to share with us? You can do that here.

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

Julie Rovner: Stat’s “Uber for Nursing Is Here — And It’s Not Good for Patients or Nurses,” by Katie J. Wells and Funda Ustek Spilda.

Sarah Karlin-Smith: MSNBC’s “Florida Considers Easing Child Labor Laws After Pushing Out Immigrants,” by Ja’han Jones.

Lauren Weber: The Atlantic’s “Miscarriage and Motherhood,” by Ashley Parker.

Rachel Cohrs Zhang: The Wall Street Journal’s “FDA Punts on Major Covid-19 Vaccine Decision After Ouster of Top Official,” by Liz Essley White.

Also mentioned in this week’s podcast:

• Stat’s “Laid-Off HHS Leaders Offered Transfers to Remote Indian Health Service Regions,” by Usha Lee McFarling.
• The Washington Post’s “Fired Health Workers Were Told To Contact an Employee. She’s Dead.” By Lauren Weber.
• Georgia Recorder’s “Bill That Criminalizes Abortion, Undermines IVF Access Gets Georgia House Panel Hearing,” by Jill Nolin.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

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Sue Sheridan’s baby boy, Cal, suffered brain damage from undetected jaundice in 1995. Helen Haskell’s 15-year-old son, Lewis, died after surgery in 2000 because weekend hospital staffers didn’t realize he was in shock. The episodes turned both women into advocates for patients and spurred research that made American health care safer.

On April 1, the Trump administration slashed the organization that supported that research — the Agency for Healthcare Research and Quality, or AHRQ — and fired roughly half of its remaining employees as part of a perplexing reorganization of the federal Health and Human Services Department.

Haskell, of Columbia, South Carolina, has done research and helped write AHRQ-published surveys and guidebooks on patient engagement for hospitals. The dissolution of AHRQ is dislodging scores of experienced patient-safety experts, a brain drain that will be impossible to rectify, she said.

Survey data gathered by AHRQ provides much of what is known about hospitalizations for motor accidents, measles, methamphetamine, and thousands of other medical issues.

“Nobody does these things except AHRQ,” she said. “They’re all we’ve got. And now the barn door’s closed.”

HHS Secretary Robert F. Kennedy Jr. posted on the social platform X on April 1 that layoffs at HHS, aimed at reducing the department’s workforce by about 20,000 employees, were the result of alleged inefficacy. “What we’ve been doing isn’t working,” he said. “Despite spending $1.9 trillion in annual costs, Americans are getting sicker every year.”

But neither Kennedy nor President Donald Trump have explained why individual agencies such as AHRQ were targeted for cuts or indicated whether any of their work would continue.

At their first meeting with the leadership of AHRQ last month, officials from Trump’s Department of Government Efficiency said that they didn’t know what the agency did — and that its budget would be cut by 80% to 90%, according to two people with knowledge of the meeting who were granted anonymity because of fears of retribution.

On March 28, the administration said AHRQ would merge with HHS’ Office of the Assistant Secretary for Planning and Evaluation.

An AHRQ spokesperson, Rachel Seeger, said its acting chief, Mamatha Pancholi, was unavailable to answer questions.

Created on the foundation of an earlier agency in 1999, AHRQ has had two major functions: collecting survey data on U.S. health care expenditures, experiences, and outcomes; and funding research aimed at improving the safety and delivery of health care. It also has published tools and guidelines to enhance patient safety.

Its latest budget of $513 million amounts to about 0.04% of HHS spending.

“If you’re going to spend $5 trillion a year on health care, it would be nice to know what the best use of that money is,” said a senior AHRQ official who spoke on condition of anonymity for fear of losing his job. “To gut a 300-member, $500 million agency for no other reason than to placate a need to see blood seems really shortsighted.”

Newly sworn-in FDA Commissioner Marty Makary, a surgeon who has advocated for patient safety, wrote or co-authored at least 10 research papers supported by AHRQ funding since 1998. AHRQ research and guidelines played a key role in lowering the incidence of hospital-acquired infections — such as deadly blood infections caused by contaminated IV lines, which fell 28% from 2015 to 2023, according to the Centers for Disease Control and Prevention.

Medical residents training in the 1980s were taught that such infections were an inevitable, often fatal byproduct of heart surgery, but AHRQ-funded research “showed that fairly simple checklists about preventing infections would be effective at going to zero,” said Richard Kronick, a University of California-San Diego researcher who led AHRQ from 2013 to 2016.

Medical errors caused by missed diagnoses, drug errors, hospital infections, and other factors kill and maim tens of thousands of Americans each year. Makary published a controversial study in 2016 hypothesizing that errors killed 250,000 people a year in the U.S. — making medical mistakes the nation’s third-leading cause of death.

“There are all kinds of terrible things about our health care system’s outcomes and how we pay for it, the most expensive care in the world,” Kronick said. “Without AHRQ, we’d be doing even worse.”

AHRQ-funded researchers such as Hardeep Singh at Baylor College of Medicine have chipped away at patient safety risks for more than two decades. Singh devises ways to integrate technologies like telemedicine and artificial intelligence into electronic health records to alert doctors to potential prescribing errors or misdiagnoses.

Singh has 15 scholars and support staff members supported by three AHRQ grants worth about $1.5 million, he said. The elimination of the agency’s office that funds outside researchers, among the cuts announced this week, is potentially “career-ending,” he said. “We need safety research to protect our patients from harms in health care. No organization in the world does more for that than AHRQ.”

Republicans have long been skeptical of AHRQ and the agency that preceded it. Some doctors saw it as meddling in their medical practices, while some GOP Congress members viewed it as duplicating the mission of the National Institutes of Health.

But when the Trump administration proposed merging it with NIH in 2018, a House-ordered study into health research priorities validated AHRQ’s valuable role.

Now, the naysayers have triumphed.

Gordon Schiff, a Harvard Medical School internist who has received AHRQ funding since 2001, was among the first to learn about policy changes there when in February he got an email from the editors of an AHRQ patient-safety website informing him “regretfully” that a 2022 case study on suicide prevention he co-authored had been removed “due to a perception that it violates the White House policy on websites ‘that inculcate or promote gender ideology.’”

The article was not about gender issues. It briefly mentioned that LGBTQ men were at a higher risk for suicide than the general population. Schiff was offered the option of removing the LGBTQ reference but refused. He and Harvard colleague Celeste Royce have sued AHRQ, HHS, and the Office of Personnel Management over removal of the article.

“All we were doing was presenting evidence-based risk factors from the literature,” he said. “To censor them would be a violation of scientific integrity and undermine the trustworthiness of these websites.”

PSNet, the AHRQ publication where Schiff and Royce’s article appeared, has been dissolved, although its website was still up as of April 2. Roughly half of AHRQ’s 300 staffers resigned following the initial DOGE warning; 111 staff members were fired April 1, according to an email that a top executive, Jeffrey Toven, sent to employees and was shown to KFF Health News. AHRQ’s remaining leadership was in the dark about Kennedy’s plans, he said.

HHS spokespeople did not respond to requests for comment. Stephen Parente, a University of Minnesota finance professor who said he consults informally with Trump health officials, said much of AHRQ’s work could be done by others. Its most vital services have been surveys that Westat, a private research company, performs for AHRQ on contract, said Parente, who was chief economist for health policy in the first Trump administration.

At the height of the covid pandemic, he said, data produced by AHRQ and other government sources were outclassed by private sources. To track covid, he relied on daily feeds of private insurance data from around the country.

Still, Parente said, the virtual disappearance of AHRQ means “we’re going to lose a culture of research that is measured, thoughtful, and provides a channel for young investigators to make their marks.”

A climate of deep depression has settled over the agency’s Rockville, Maryland, headquarters, the unnamed AHRQ official said: “Almost everyone loves their job here. We’re almost all PhDs in my center — a very collegial, talented group.”

The official said he was “generally skeptical” that AHRQ’s merger with the assistant secretary’s office would keep its mission alive. The Centers for Medicare & Medicaid Services and the CDC conduct some health system quality research, but they are also losing staff, Harvard’s Schiff noted.

One of Schiff’s current AHRQ projects involved interviewing late-stage cancer patients to determine whether they could have been diagnosed earlier.

“The general public, I think, would like cancer to be diagnosed earlier, not when it’s stage 4 or stage 3,” he said. “There are things we could learn to improve our care and get more timely diagnosis of cancer.”

“Medical errors and patient safety risks aren’t going to go away on their own,” he said.

With input from Sheridan and other mothers of children who suffered from jaundice-related brain damage, AHRQ launched research that led to a change in the standard of care whereby all newborns in the U.S. are tested for jaundice before discharge from hospitals. Cases of jaundice-related brain damage declined from 7 per 100,000 to about 2 per 100,000 newborns from 1997 to 2012.

The misfortune of Lewis, Haskell’s son, led to a change in South Carolina law and later to a national requirement for hospitals to enable patients to demand emergency responses under certain circumstances.

Singh, a leading researcher on AI in health care, sees bitter irony in the way the Elon Musk-led DOGE has taken an ax to AHRQ, which recently put out a new request for proposals to study the technology. “Some think AI will fix health care without a human in the loop,” Singh said. “I doubt we get there by dismantling people who support or perform patient safety research. You need a human in the loop.”

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Tina Ewing-Wilson remembers the last time major Medicaid cuts slashed her budget.

In the late 2000s, during the Great Recession, the pot of money she and other Medi-Cal recipients depend on to keep them out of costly residential care homes shrank.

The only way she could afford help was to offer room and board to a series of live-in caregivers who she said abused alcohol and drugs and eventually subjected her to financial abuse. She vowed to never rely on live-in care again.

Now the 58-year-old Republican from the Inland Empire is worried Medicaid cuts being mulled by her party in Washington could force her into another vulnerable spot.

“If they reduce my budget, that doesn’t change the fact that I need 24-hour care,” said Ewing-Wilson, who has struggled with seizures and developmental disabilities her entire life. “If they cut it too much, people will die or they’ll lose their freedoms.”

Similar stories have already surfaced in GOP-held swing districts nationwide where activists have been applying political pressure to sway vulnerable House members from supporting $880 billion in cuts that health experts say would almost certainly hit safety net programs. But in California, which sends more Republicans to Congress than any state west of Texas, consumer groups and health industry giants are joining forces in a quieter campaign to lobby lawmakers in solidly red districts, some of which they say would be disproportionately affected if those cuts materialize.

Organizers are trying to highlight a thorny fact that faces many conservative members as they navigate a complex decision: The scale of spending cuts top GOP leaders are demanding is nearly impossible to achieve without slashing Medicaid funds to states, which are a lifeline for their largely poor, rural districts. In Rep. Doug LaMalfa’s northern Sierra district stretching to the Oregon border, for example, some 43% of residents are enrolled in Medi-Cal, while 48% of residents in Rep. Jay Obernolte’s district, centered on San Bernardino County, rely on Medi-Cal.

“The hospitals, the health plans — we don’t always get along with those folks,” said Dustin Corcoran, CEO of the powerful California Medical Association, which represents more than 55,000 doctors and encouraged its members to call their representatives. “On this, there’s not a lot of daylight. It will take strange bedfellows, for sure.”

The California Hospital Association has sent letters to Republican lawmakers and encouraged executives of its more than 400 member hospitals to reach out or provide tours to them. Consumer advocates and patient groups have protested outside members’ district offices and community health center CEOs have requested private meetings.

The House of Representatives in February approved a budget framework tasking the committee overseeing Medicaid to cut $880 billion over 10 years. While there are still no specific provisions cutting Medicaid, Medicare, or other safety net programs, health care analysts say the magnitude of the spending reductions means they’re inevitable. They could force millions of Californians off Medi-Cal (the state’s Medicaid program covers roughly 15 million people), reduce benefits for those still enrolled, and lower reimbursement rates for physicians at a time of acute provider shortages, said Kristof Stremikis, director of market analysis and insight for the California Health Care Foundation, a nonprofit that advocates on health care policy.

“What you’re talking about at the end of the day is reductions in funding that the states, including California, are in no position to make up,” Stremikis said. “You see that reflected in the different groups that have come together to talk about how important this program is.”

Even before Congress approved its controversial budget plan, Corcoran said, doctors and other industry representatives had been holding weekly calls for months to discuss how to protect Medicaid funding following Republicans’ substantial wins in November. Corcoran has also rallied physicians’ groups out of state, sending a joint letter to House leaders in February. The group has asked individual doctors to call or write their congressional representatives as well.

Many Republican lawmakers appear to be lying low while home after House leadership advised GOP members against holding in-person town halls, blaming Democratic activists for “hijacking” the events. A viral clip showed Obernolte getting booed down by constituents at a district event.

Meanwhile, LaMalfa said on the House floor in February that the spending resolution, which all nine California Republicans voted for, does not cut Medicaid, Medicare, or other social safety net programs.

“Any claim to the contrary is actually fearmongering, plain and simple, or I guess in my neighborhood it would be known as a lie,” he said.

Neither LaMalfa nor Obernolte responded to requests for comment.

Jo Campbell, who runs a federally qualified health center in LaMalfa’s district, said she has invited the lawmaker to join her and other local clinic executives to explain how the federal government can cut the $880 billion without touching funding crucial to health centers like hers.

“We all kind of live financially on a knife’s edge,” said Campbell, CEO of Hill Country Community Clinic, roughly half of whose patients rely on Medi-Cal. “It could mean the difference of whether or not we keep our doors open.”

Campbell hasn’t heard back from LaMalfa’s office.

Executives at Adventist Health, which has 23 hospitals across California, have met with Central Valley Republican Reps. Vince Fong and David Valadao and have requested a meeting with LaMalfa, with whom they worked closely after one of its hospitals burned in the 2018 Camp Fire.

“They’re all at different places,” said Adventist spokesperson Julia Drefke. “I think they understand what it means for their community. What that translates to in terms of their vote could be a different thing.”

In 2023, Medi-Cal made up more than 80% of patient revenue at Surprise Valley Community Hospital in LaMalfa’s district, for example, and 64% of patient revenue at Loma Linda University Children’s Hospital, in Obernolte’s district, came from Medi-Cal, according to a CHCF analysis of state data.

Sabrina Epstein, a policy analyst with Disability Rights California, said she’s encouraging local activists, no matter where they live, to engage with California’s congressional Republicans.

“It only takes a few votes to keep Medicaid going, to protect it in Congress,” she said. “We don’t know where those votes are going to come from.”

Republicans — swing district or not — will now have to weigh the popularity of Medicaid among their constituents with pressure from national Republicans who see a once-in-a-generation opportunity to shrink the size of government and have shown little mercy for party members who fall out of line. More than three-quarters of Americans have a favorable opinion of Medicaid, according to a January KFF poll.

Complicating that calculation is the recent revelation by Gov. Gavin Newsom’s administration that California’s Medi-Cal program is billions of dollars short and relying on a loan to cover the overrun. Republican state legislators have singled out California’s decision to cover low-income residents regardless of legal status, although other factors have also contributed.

“The majority party decided to add billions of dollars to the cost of Medi-Cal and it was so nonsensical,” said GOP Assembly member Joe Patterson. “That’s a self-inflicted wound.”

Jenny McLelland, whose 13-year-old son has a breathing disability that requires round-the-clock care, said cutting benefits for immigrants would end up costing taxpayers more, when they show up in emergency rooms with more complicated ailments.

“I don’t buy the argument that other people are any less deserving of care than my son,” said McLelland, who lives in Clovis, part of Fong’s district. For her son, Medi-Cal is “a matter of life and death,” she added.

She believes if Fong understood how vital Medi-Cal is to families, he would work to make the system better.

It remains to be seen whether targeting House Republicans will change minds when a final budget package is voted on. Two vulnerable members — Valadao and Young Kim, who represents a district east of Anaheim — have signaled they’ll oppose major cuts to Medicaid. Rep. Ken Calvert, whose Palm Desert district office was targeted by protesters during the spring recess, said in a statement that he favors work requirements and would not support Medicaid cuts for “mothers, children, disabled, and low-income Americans.”

In Valadao’s district, state data shows, two-thirds of residents rely on Medi-Cal, which is the single biggest payer for all five general acute care hospitals there. That includes Adventist Health Delano, which derives two-thirds of patient revenue from Medi-Cal, according to the CHCF analysis.

Most other GOP House members remain silent.

Ewing-Wilson voted for Obernolte, who won reelection by 20 percentage points and is in little danger of losing. She’s been trying for weeks to get a meeting with him. If he votes to cut Medicaid, she said, “I will be very disappointed in him, because I voted for him, expecting that he would care about all of his constituents.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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CHARLOTTE, N.C. — Purple flags, representing the nearly 300 Mecklenburg County residents who died of opioid overdose in 2023, fluttered in the humid breeze last August in recognition of International Overdose Awareness Day on the city’s predominantly Black west side.

As recently as five years ago, the event might have attracted an overwhelmingly white crowd.

But the gathering on the last day of the month at the Valerie C. Woodard Community Resource Center drew large attendance from Black people eager to learn more about a crisis that now has them at the center.

In recent years, the rate of overdose deaths from opioids — originally dubbed “Hillbilly heroin” because of their almost exclusive misuse by white people — has grown significantly among Black people. This is largely due to the introduction of fentanyl, a synthetic opioid 50 to 100 times as powerful as morphine, which is often mixed into heroin and cocaine supplies and can be consumed unknowingly. In North Carolina, Black people died from an overdose at the rate of 38.5 per 100,000 residents in 2021 — more than double the rate in 2019, according to North Carolina Department of Health and Human Services data.

Terica Carter, founder of Hajee House Harm Reduction, a Charlotte-based nonprofit that co-organized the event with the county’s public health office, has been working to change that statistic. Seven years ago, she founded Hajee House after the overdose death of her 18-year-old son, Tahajee, who took an unprescribed dose of Percocet that he didn’t know was laced with fentanyl. Her nonprofit has since focused on addressing a critical issue in the fight against the opioid epidemic: that resources, treatment, and policy prescriptions have not followed the surge in addiction and overdoses among Black people.

“Nobody was acknowledging it, and I felt so alone,” Carter said. “That pushed me into not wanting anybody else to go through what I went through.”

Hajee House seeks to fill the gaps in resources and information about opioid overdose, substance use, and treatment. It also provides syringes, safe-use toolkits, the overdose reversal drug naloxone, fentanyl test strips, and recovery referral services — all in a familiar, neighborhood environment.

Despite efforts by groups like Hajee House, a lot of work remains in North Carolina. In 2019, for instance, white people accounted for 88% of those served by the opioid use prevention and treatment services funded by a $54 million grant from the federal Substance Abuse and Mental Health Services Administration, North Carolina Health News reported. Black people, meanwhile, made up about 24% of North Carolina’s population but only 7.5% of those served by the state assistance.

Nationally, Black people are half as likely as white people to be referred to or get treatment — even after a nonfatal overdose, according to the Centers for Disease Control and Prevention.

“If you are a Black person and have an opioid use disorder, you are likely to receive treatment five years later than if you’re a white person,” said Nora Volkow, director of the National Institute on Drug Abuse at the National Institutes of Health. “Five years can make the difference between being alive or not.”

According to the CDC, only 1 in 12 non-Hispanic Black people who died of an opioid overdose had been engaged in substance use treatment, while non-Hispanic white people had been treated at nearly twice the rate. Even those who seek care are less likely to complete the program and have poorer outcomes — which studies have linked to implicit bias and a lack of diversity and empathy for Black patients among treatment providers.

Daliah Heller, vice president of Drug Use Initiatives at Vital Strategies, a global health nonprofit, said she’s troubled by the lack of equal access to the full range of medications for opioid use disorder, which is considered the gold standard for care.

Those medications have the potential to reduce overdose risk by half and double a patient’s chances of entering long-term recovery. The FDA has approved three medications: buprenorphine and methadone, which are synthetic opioids that reduce cravings and withdrawal symptoms, and naltrexone, a post-detox monthly injectable that blocks the effects of opioids.

Black people are overwhelmingly treated with methadone. While methadone patients stay in treatment at higher rates compared with those prescribed buprenorphine, they face significant drawbacks, including difficulty finding a clinic, waitlists, and a requirement to visit the clinic every day to receive the medication under the supervision of a practitioner.

Meanwhile, buprenorphine can be prescribed in an office setting and filled at the pharmacy. A University of Michigan study found that white patients received buprenorphine three to four times as often as Black patients due to geographical availability and ability to pay.

“When buprenorphine came online in the early 2000s, we thought we could integrate that treatment alongside health care, and you wouldn’t need to go to a special program anymore,” Heller said. “That didn’t happen.”

Edwin Chapman, who runs an addiction clinic in Washington, D.C., said he must overcome many prescribing challenges to effectively treat his mostly Black patient population.

“The insurance companies in many states put more restrictions on patients in an urban setting, such as requiring prior authorization for addiction treatment,” Chapman said, speaking from his own experience working with patients. “The dosing standards were based on the white population and people who were addicted to pills. Our surviving Black population often needs a higher dose of buprenorphine.”

Heller said the lack of access to treatment is also driven by broader, systemic issues. She said many Black people fear that, by seeking social services, they might become ensnared in the criminal justice system and ultimately lose their employment, housing, or even custody of their children.

“Drug use occurs at the same levels across racial and ethnic groups, but Black Americans are more likely to be arrested and incarcerated on drug charges,” Heller said. “The more hyper-criminalized experience levied against Black communities interferes with access to care.”

All this is why there’s an increasing need for nonprofits like Hajee House that can provide information and a low-barrier access to services in the Black community, Carter said.

She credits the success of Hajee House to her personal connections and a keen understanding of the needs and cultural preferences of the Black community. When she holds overdose awareness events, for instance, she features cookouts, bouncy houses, and DJs to make them look more like block parties.

“We focus on making the events and outreach a comfortable, familiar environment for the Black community,” Carter said. “We’re Black, so we keep it Black.”

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When epidemiologist Sophia Newcomer tries to evaluate how well Montana might be able to ward off the measles outbreak spreading across the U.S., she doesn’t have much data to work with.

A federal state-by-state survey last year showed that just over 86% of Montana’s 2-year-olds had recently received the measles, mumps, and rubella immunization. That figure has decreased in recent years, according to earlier surveys, and Newcomer, an associate professor at the University of Montana, said the latest rate is “well below” the ideal 95% threshold for community protection against highly contagious diseases.

But beyond that statewide estimate, information about Montana’s local and regional immunization trends is hard to come by. State officials no longer collect aggregated vaccination reports from schools and child care centers, or the included data about medical and religious exemptions. The administration of Republican Gov. Greg Gianforte discontinued the practice after he signed a 2021 bill striking the requirement.

The last of the localized reports were from the 2018-19 school year, before the disruptions of covid-19. Without the information, Newcomer said, local and state officials have struggled to strategically prevent the spread of vaccine-preventable disease.

“State averages are helpful, but really drilling down to county level or smaller geographic levels are really what we need to assess risk of outbreaks,” she said.

Montana is the only state that no longer collects immunization reports from local schools, creating a data gap for the Centers for Disease Control and Prevention. The information shortage also affects city and county health officials who may not have their own data-sharing agreements with school districts.

Supporters of the 2021 measure to stop collecting data said they were aiming to protect students’ personally identifiable information and medical records and did not intend to cancel the reporting system in its entirety.

“I wasn’t trying to bomb the system. I was just trying to make sure children had their privacy respected,” said Jennifer Carlson, a former Republican legislator and the sponsor of the bill the state health department cites as the reason for discontinuing the data collection.

State lawmakers are considering a bill to undo the 2021 policy, while keeping privacy protections for individual student records. After stalling earlier this session, the Democratic-sponsored HB 364 advanced in March with bipartisan support, clearing the House with a 66-31 vote.

The bill, sponsored by Democratic Rep. Melody Cunningham, has also received support from the state health department, an agency within the Gianforte administration.

Republican Rep. John Fitzpatrick said that he believes the bill is good policy for the state.

“It’s important that public health authorities have access to aggregate information so they can track where vaccinations are not being used,” he said.

Montana hasn’t confirmed a case of measles since 1990. But with more than 480 cases reported across Texas, New Mexico, and 17 other states, one child confirmed to have died from the disease, and another death under investigation, Newcomer said she and other disease experts are “on edge” about Montana’s defenses. Three cases have been confirmed in March south of Calgary, in the Canadian province of Alberta, which shares a border with Montana.

“I like to say that when vaccination rates drop in a community, it is not a question of if. It’s a question of when measles is going to come, because it is so incredibly contagious,” said David Higgins, a pediatrician and researcher at the University of Colorado Anschutz Medical Campus.

Higgins used to work in Montana when the law requiring schools and state officials to share data was still in place. He said he’s disappointed in the 2021 rollback, given how outbreaks begin at the hyperlocal level.

“When community leaders don’t have a good understanding of the local level of vaccination and community immunity, that’s a significant challenge,” Higgins said. “They’re hamstrung without having that data readily available.”

Measles is one of the world’s most contagious diseases, according to the World Health Organization, much more so than covid. It can be very dangerous, especially for infants and children under 5 who have not completed the two-dose vaccination series. Infectious particles can hang in the air and on surfaces for up to two hours. People carrying the virus can spread it up to four days before they begin showing symptoms.

“If we do have a measles case arrive in Montana, and particularly if it arrives in a community that has low vaccination coverage, we’re going to see spread over like a multi-week or even multi-month period,” Newcomer said. “So an unvaccinated person can get sick simply by going into a school, store, or home where someone infected with measles recently was.”

The infection can have short-term and long-term consequences for people who are not immunized, including encephalitis, pneumonia, deafness, blindness, and death. State and community health departments have been advertising free MMR vaccinations at clinics throughout the state for anyone who needs them.

While HB 364 is aimed at increasing data collection, other vaccine measures in the state legislature are advancing that would make it easier for children to be exempted from standard immunizations required to attend schools or child care centers.

A recent version of SB 474, which has been amended several times, would create an “informed consent” exemption in which a parent or guardian could decline immunizations for school-age children without stating a reason.

Supporters of the bill said that some families struggle to receive exemptions on the grounds of religious beliefs or medical causes and want broader flexibility to opt out of requisite vaccinations against measles and other infectious diseases, such as pertussis. According to Montana’s most recent reporting, from the 2018-19 school year, roughly 3% of children in public schools had a religious or medical exemption.

SB 474 also would strike another part of state law that allows schools and day cares to deny admission to children because they are unvaccinated, an exemption included in a 2021 law aimed at protecting unvaccinated people from discrimination. The lawmaker sponsoring the current bill called the carve-out for schools and day cares an “aberration” in Montana law.

“There’s no reason that they should be discriminating based on vaccine status,” Republican Sen. Daniel Emrich said during a March debate on the Senate floor.

Emrich and others framed the bill as enabling individual decision-making around vaccinations based on how well a parent knows their own child.

“Vaccines are pretty effective,” Emrich said. “If you’re concerned about unvaccinated children, you have the option to get your kid a vaccine to protect them in whatever way you want. This bill is really about choice.”

During the debate, opponents of the bill contended that the lower Montana’s overall immunization rate drops, the more at risk many community members are, including those who, because of age or medical issues, can’t be vaccinated.

Sen. Cora Neumann, a Democrat representing Bozeman, said that vaccinated Montanans, including children, are acting as “shields” against contagious diseases like measles and pertussis. But if vaccination rates continue to drop, Neumann said, that protection will only get weaker.

“We just saw a kid die of measles [in Texas]. It’s going to continue, and it is going to be scary. It is going to be deadly,” Neumann said. “It feels like a luxury right now. We can choose. It is not going to be if we continue down this path.”

The bill passed the state Senate on a 28-21 vote. It is now under consideration in the House.

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Five years ago, the CEO of one of the largest pain clinic companies in the Southeast was sentenced to more than three years in prison after being convicted in a $4 million illegal kickback scheme.

But after just four months behind bars, John Estin Davis walked free. President Donald Trump commuted Davis’ sentence in the last days of his first term. In a statement explaining the decision, the White House said that “no one suffered financially” from Davis’ crime.

In court, however, the Trump administration was saying something very different. As the president let him go, the Department of Justice alleged in a civil lawsuit that Davis and his company defrauded taxpayers out of tens of millions of dollars with excessive urine drug testing. The DOJ alleged that Comprehensive Pain Specialists made such a “staggering” sum from cups of pee that employees had given the testing a profit-minded nickname: “liquid gold.”

Davis and the company denied all allegations in court filings and settled the DOJ’s fraud lawsuit without any determination of liability. Davis declined to comment for this article.

Since returning to the White House, Trump has said he will target fraud in Medicare, Medicaid, and Social Security, and his Republican allies in Congress have made combating fraud a key argument in their plans to slash spending on Medicaid, which provides health care for millions of low-income and disabled Americans. During an address to Congress last month, Trump said his administration had found “hundreds of billions of dollars of fraud” without citing any specific examples of fraud.

“Taken back a lot of that money,” Trump said. “We got it just in time.”

But Trump’s history of showing leniency to convicted fraudsters contrasts with his present-day crackdown. In his first and second terms, Trump has granted pardons or commutations to at least 68 people convicted of fraud crimes or of interfering with fraud investigations, according to a KFF Health News review of court and clemency records, DOJ press releases, and news reports. At least 13 of those fraudsters were convicted in cases involving more than $1.6 billion of fraudulent claims filed with Medicare and Medicaid, according to the Department of Justice.

And as one of the first actions of his second term, Trump fired 17 independent inspectors general responsible for rooting out fraud and waste in government.

“It sends a really bad message and really hurts DOJ efforts at creating deterrence,” said Jacob Elberg, a former assistant U.S. attorney and law professor at Seton Hall University in New Jersey. “In order to reduce health care fraud, you need people both to be afraid of getting in trouble, but also for people to believe in the legitimacy of the system.”

Elberg said considerable fraud in Medicare and Medicaid exists largely because the programs’ “pay-and-chase models” prioritize paying for patient care first and tracking down stolen dollars second. To prevent more fraud, the programs would likely need to be redesigned in ways that would be slower and more cumbersome for all patients, Elberg said.

Regardless, Elberg said the president’s claimed focus on fraud appears to be a pretext for slashing spending that has been legally appropriated by Congress. Trump has empowered the Elon Musk-led Department of Government Efficiency, which he established and named by executive order, to make deep cuts in federal budgets, halting some medical research and aid programs in addition to cutting spending on climate change, transgender health, and diversity, equity, and inclusion programs.

“What’s been the focal point to date of the administration is not what anybody has ever referred to as health care fraud,” Elberg said. “There is a real blurring — a seemingly intentional blurring — between what is actually fraud and what is just spending that they are not in favor of.”

Jerry Martin, who served as a U.S. attorney for the Middle District of Tennessee under President Barack Obama and now represents health care fraud whistleblowers, also said Trump’s focus on fraud appeared to be “just a platform to attack things that they don’t agree with” rather than “a genuine desire to root out and combat fraud.”

Even so, Martin said some of his whistleblower clients have been emboldened.

“I’ve had clients repeat back to me ‘President Trump says fraud is a priority,’” Martin said. “People are listening to it. But I don’t know that what he’s saying translates into what they believe.”

The White House did not respond to requests for comment for this article.

A Billion-Dollar Fraud Case and Needless Eye Injections

Presidents enjoy the unique authority to erase federal convictions and prison sentences with pardons and commutations. In theory, the power is intended to be a final bulwark against injustice or overly harsh punishment. But many presidents have been accused of using the pardon power to reward powerful allies and close associates as they leave the White House.

Trump issued about 190 pardons and commutations in the final two months of his first term, including for some health care fraudsters convicted of schemes with astonishing costs.

For example, Trump granted a commutation to Philip Esformes, a Florida health care executive convicted in 2019 of a $1.3 billion Medicare and Medicaid fraud scheme. After he was sentenced, DOJ announced in a press release that “the man behind one of the biggest health care frauds in history will be spending 20 years in prison.” Trump freed him 14 months later.

Trump also granted a commutation to Salomon Melgen, a Florida eye doctor who was serving a 17-year prison sentence for defrauding Medicare of $42 million. Melgen falsely diagnosed patients with eye diseases, then gave them unnecessary care, including laser treatments and painful eye injections, according to DOJ and court documents.

“Salomon Melgen callously took advantage of patients who came to him fearing blindness,” said a DOJ news release after Melgen was sentenced in 2018. “They received medically unreasonable and unnecessary tests and procedures that victimized his patients and the American taxpayer.”

DOJ: $70 Million Spent on ‘Excessive’ Urine Testing

Despite the flurry of pardons and commutations at the end of Trump’s first term, the leniency he showed Davis was unique. Davis was the only convicted health care fraudster to receive clemency while the Trump administration was simultaneously accusing him of more fraud.

As CEO of Comprehensive Pain Specialists from 2011 to 2017, Davis oversaw a rapid expansion to more than 60 locations across 12 states, according to federal court documents.

He was indicted in 2018 for using his CEO position to refer Medicare patients in need of medical equipment to a conspirator in return for kickbacks paid through a shell company, according to court documents. He was convicted at trial in April 2019 of defrauding Medicare.

Three months later, the DOJ filed a fraud lawsuit against Davis and CPS that piggybacked on the claims of seven whistleblowers. The lawsuit alleged that CPS collected more than $70 million from federal insurance programs for urine drug testing, most of which was “excessive,” and that an audit of a sampling of the tests had found at least 93% “lacked medical necessity.”

Typically, government insurance programs pay for urine testing so pain clinics can verify that patients are taking their prescriptions properly and not abusing any other drugs, which could contribute to an overdose. Patients could be tested as little as once a year or as often as monthly depending on their level of risk, according to the DOJ lawsuit.

But Comprehensive Pain Specialists performed “myriad urine drug testing on virtually every CPS patient on virtually every visit” then conducted “at least 16 different types of tests” on each sample, and sometimes as many as 51, according to the lawsuit.

Trump commuted Davis’ sentence for his criminal conviction in January 2021 as the DOJ was finalizing a settlement in the civil lawsuit. The commutation was supported by country music star Luke Bryan, according to a White House statement.

Months later, with President Joe Biden in office, CPS and its owners agreed to repay $4.1 million — less than 10% of the damages sought in the suit — and the case was closed.

In the settlement, Davis agreed not to take any job where he would ever again bill Medicare or other federal health care programs. He was not required to personally repay anything.

Martin, who represented one of the whistleblowers who first raised allegations against Davis and CPS, said the leniency that Trump showed to him and other health care fraudsters may discourage DOJ employees from pursuing similar investigations during his second term.

“There are a lot of rank-and-file people who are operating at the lowest point in their professional careers, where they’ve seen a lot of their work essentially be water under the bridge,” Martin said. “That’s got to be really demoralizing.”

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

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HHS announced a comprehensive review of federal contracts and grants at Harvard University and its affiliates.

HENRICO, Va. — Sheldon Ekirch spends a lot of time on hold with her health insurance company.

Sometimes, as the minutes tick by and her frustration mounts, Ekirch, 30, opens a meditation app on her phone. It was recommended by her psychologist to help with the depression associated with a stressful and painful medical disorder.

In 2023, Ekirch was diagnosed with small fiber neuropathy, a condition that makes her limbs and muscles feel as if they’re on fire. Now she takes more than a dozen prescriptions to manage chronic pain and other symptoms, including insomnia.

“I don’t feel like I am the person I was a year and a half ago,” said Ekirch, who was on the cusp of launching her law career, before getting sick. “Like, my body isn’t my own.”

Ekirch said specialists have suggested that a series of infusions made from blood plasma called intravenous immunoglobulin — IVIG, for short — could ease, or potentially eradicate, her near-constant pain. But Ekirch’s insurance company has repeatedly denied coverage for the treatment, according to documents provided by the patient.

Patients with Ekirch’s condition don’t always respond to IVIG, but she said she deserves to try it, even though it could cost more than $100,000.

“I’m paying a lot of money for health insurance,” said Ekirch, who pays more than $600 a month in premiums. “I don’t understand why they won’t help me, why my life means so little to them.”

For patient advocates and health economists, cases like Ekirch’s illustrate why prior authorization has become such a chronic pain point for patients and doctors. For 50 years, insurers have employed prior authorization, they say, to reduce wasteful health care spending, prevent unnecessary treatment, and guard against potential harm.

The practice differs by insurance company and plan, but the rules often require patients or their doctors to request permission from the patient’s health insurance company before proceeding with a drug, treatment, or medical procedure.

The insurance industry provides little information about how often prior authorization is used. Transparency requirements established by the federal government to shed light on the use of prior authorization by private insurers haven’t been broadly enforced, said Justin Lo, a senior researcher for the Program on Patient and Consumer Protections at KFF, a health information nonprofit that includes KFF Health News.

Yet it’s widely acknowledged that prior authorization tends to disproportionately impact some of the sickest people who need the most expensive care. And despite bipartisan support to reform the system, as well as recent attempts by health insurance companies to ease the burden for patients and doctors, some tactics have met skepticism.

Some insurers’ efforts to improve prior authorization practices aren’t as helpful as they would seem, said Judson Ivy, CEO of Ensemble Health Partners, a revenue cycle management company.

“When you really dive deep,” he said, these improvements don’t seem to touch the services and procedures, such as CT scans, that get caught up in prior authorization so frequently. “When we started looking into it,” he said, “it was almost a PR stunt.”

The ‘Tipping Point’

When Arman Shahriar’s father was diagnosed with follicular lymphoma in 2023, his father’s oncologist ordered a whole-body PET scan to determine the cancer’s stage. The scan was denied by a company called EviCore by Evernorth, a Cigna subsidiary that makes prior authorization decisions.

Shahriar, an internal medicine resident, said he spent hours on the phone with his father’s insurer, arguing that the latest medical guidelines supported the scan. The imaging request was eventually approved. But his father’s scan was delayed several weeks — and multiple appointments were scheduled, then canceled during the time-consuming process — while the family feared the cancer would continue to spread.

EviCore by Evernorth spokesperson Madeline Ziomek wrote in an emailed statement that incomplete clinical information provided by physicians is a leading cause of such denials. The company is “actively developing new ways to make the submission process simpler and faster for physicians,” Ziomek said.

In the meantime, Shahriar, who often struggles to navigate prior authorization for his patients, accused the confusing system of “artificially creating problems in people’s lives” at the wrong time.

“If families with physicians are struggling through this, how do other people navigate it? And the short answer is, they can’t,” said Shahriar, who wrote about his father’s case in an essay published last year by JAMA Oncology. “We’re kind of reaching a tipping point where we’re realizing, collectively, something needs to be done.”

The fatal shooting of UnitedHealthcare CEO Brian Thompson on a New York City sidewalk in December prompted an outpouring of grief among those who knew him, but it also became a platform for public outrage about the methods insurance companies use to deny treatment.

An Emerson College poll conducted in mid-December found 41% of 18- to 29-year-olds thought the actions of Thompson’s killer were at least somewhat acceptable. In a NORC survey from the University of Chicago conducted in December, two-thirds of respondents indicated that insurance company profits, and their denials for health care coverage, contributed “a great deal/moderate amount” to the killing. Instagram accounts established in support of Luigi Mangione, the 26-year-old Maryland suspect accused of murder and terrorism, have attracted thousands of followers.

“The past several weeks have further challenged us to even more intensely listen to the public narrative about our industry,” Cigna Group CEO David Cordani said during an earnings call on Jan. 30. Cigna is focused on “making prior authorizations faster and simpler,” he added.

The first Trump administration and the Biden administration put forth policies designed to improve prior authorization for some patients by mandating that insurers set up electronic systems and shortening the time companies may take to issue decisions, among other fixes. Hundreds of House Democrats and Republicans signed on to co-sponsor a bill last year that would establish new prior authorization rules for Medicare Advantage plans. In January, Republican congressman Jefferson Van Drew of New Jersey introduced a federal bill to abolish the use of prior authorization altogether.

Meanwhile, many states have passed legislation to regulate the use of prior authorization. Some laws require insurers to publish data about prior authorization denials with the intention of making a confusing system more transparent. Reform bills are under consideration by state legislatures in Hawaii, Montana, and elsewhere. A bill in Virginia approved by the governor March 18 takes effect July 1. Other states, including Texas, have established “gold card” programs that ease prior authorization requirements for some physicians by allowing doctors with a track record of approvals to bypass the rules.

No one from AHIP, an insurance industry lobbying group formerly known as America’s Health Insurance Plans, was available to be interviewed on the record about proposed prior authorization legislation for this article.

But changes wouldn’t guarantee that the most vulnerable patients would be spared from future insurance denials or the complex appeals process set up by insurers. Some doctors and advocates for patients are skeptical that prior authorization can be fixed as long as insurers are accountable to shareholders.

Kindyl Boyer, director of advocacy for the nonprofit Infusion Access Foundation, remains hopeful the system can be improved but likened some efforts to playing “Whac-A-Mole.” Ultimately, insurance companies are “going to find a different way to make more money,” she said.

‘Unified Anger’

In the weeks following Thompson’s killing, UnitedHealthcare was trying to refute an onslaught of what it called “highly inaccurate and grossly misleading information” about its practices when another incident landed the company back in the spotlight.

On Jan. 7, Elisabeth Potter, a breast reconstruction surgeon in Austin, Texas, posted a video on social media criticizing the company for questioning whether one of her patients who had been diagnosed with breast cancer and was undergoing surgery that day needed to be admitted as an inpatient.

The video amassed millions of views.

In the days following her post, UnitedHealthcare hired a high-profile law firm to demand a correction and public apology from Potter. In an interview with KFF Health News, Potter would not discuss details about the dispute, but she stood by what she said in her original video.

“I told the truth,” Potter said.

The facts of the incident remain in dispute. But the level of attention it received online illustrates how frustrated and vocal many people have become about insurance company tactics since Thompson’s killing, said Matthew Zachary, a former cancer patient and the host of “Out of Patients,” a podcast that aims to amplify the experiences of patients.

For years, doctors and patients have taken to social media to shame health insurers into approving treatment. But in recent months, Zachary said, “horror stories” about prior authorization shared widely online have created “unified anger.”

“Most people thought they were alone in the victimization,” Zachary said. “Now they know they’re not.”

Data published in January by KFF found that prior authorization is particularly burdensome for patients covered by Medicare Advantage plans. In 2023, virtually all Medicare Advantage enrollees were covered by plans that required prior authorization, while people enrolled in traditional Medicare were much less likely to encounter it, said Jeannie Fuglesten Biniek, an associate director at KFF’s Program on Medicare Policy. Furthermore, she said, Medicare Advantage enrollees were more likely to face prior authorization for higher-cost services, including inpatient hospital stays, skilled nursing facility stays, and chemotherapy.

But Neil Parikh, national chief medical officer for medical management at UnitedHealthcare, explained prior authorization rules apply to fewer than 2% of the claims the company pays. He added that “99% of the time” UnitedHealthcare members don’t need prior authorization or requests are approved “very, very quickly.”

Recently, he said, a team at UnitedHealthcare was reviewing a prior authorization request for an orthopedic procedure when they discovered the surgeon planned to operate on the wrong side of the patient’s body. UnitedHealthcare caught the mistake in time, he recounted.

“This is a real-life example of why prior authorization can really help,” Parikh said.

Even so, he said, UnitedHealthcare aims to make the process less burdensome by removing prior authorization requirements for some services, rendering instant decisions for certain requests, and establishing a national gold card program, among other refinements. Cigna also announced changes designed to improve prior authorization in the months since Thompson’s killing.

“Brian was an incredible friend and colleague to many, many of us, and we are deeply saddened by his passing,” Parikh said. “It’s truly a sad occasion.”

The Final Denial

During the summer of 2023, Ekirch was working full time and preparing to take the bar exam when she noticed numbness and tingling in her arms and legs. Eventually, she started experiencing a burning sensation throughout her body.

That fall, a Richmond-area neurologist said her symptoms were consistent with small fiber neuropathy, and, in early 2024, a rheumatologist recommended IVIG to ease her pain. Since then, other specialists, including neurologists at the University of Virginia and Virginia Commonwealth University, have said she may benefit from the same treatment.

There’s no guarantee it will work. A randomized controlled trial published in 2021 found pain levels in patients who received IVIG weren’t significantly different from the placebo group, while an older study found patients responded “remarkably well.”

“It’s hard because I look at my peers from law school and high school — they’re having families, excelling in their career, living their life. And most days I am just struggling, just to get out of bed,” said Ekirch, frustrated that Anthem continues to deny her claim.

In a prepared statement, Kersha Cartwright, a spokesperson for Anthem’s parent company, Elevance Health, said Ekirch’s request for IVIG treatment was denied “because it did not meet the established medical criteria for effectiveness in treating small fiber neuropathy.”

On Feb. 17, her treatment was denied by Anthem for the final time. Ekirch said her patient advocate, a nurse who works for Anthem, suggested she reach out to the drug manufacturer about patient charity programs.

“This is absolutely crazy,” Ekirch said. “This is someone from Anthem telling me to plead with a pharmacy company to give me this drug when Anthem should be covering it.”

Her only hope now lies with the Virginia State Corporation Commission Bureau of Insurance, a state agency that resolves prior authorization disputes between patients and health insurance companies. She found out through a Facebook group for patients with small fiber neuropathy that the Bureau of Insurance has overturned an IVIG denial before. In late March, Ekirch was anxiously waiting to hear the agency’s decision about her case.

“I don’t want to get my hopes up too much, though,” she said. “I feel like this entire process, I’ve been let down by it.”

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

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HELENA, Mont. — Montana’s small, independent pharmacies say they’re getting increasingly squeezed on reimbursements by pharmacy benefit managers — and are pushing an ambitious bill to rein in what they say are unfair practices by the powerful industry negotiators known as PBMs.

“Who in their right mind would subject themselves to this sort of treatment in a business relationship?” said Mike Matovich, a part owner of eight small-town pharmacies in Montana. “It’s such a monopoly. We can be the best pharmacy in the world, and they can still put us out of business.”

The bill, which sailed through the Montana House 98-1 in early March and is now before the state Senate, would set a price floor that PBMs must pay pharmacies for each prescription. Currently, there is no mandated minimum rate in contracts with pharmacies, and independent drugstores said the rates are often below what they paid for the drugs.

The measure includes a half-dozen restrictions on other PBM practices the smaller pharmacies call anticompetitive.

Pharmacy benefit managers, employed by health insurers, are powerful intermediaries in the drug-pricing chain. They determine which drugs are covered by health plans, arrange rebates from drugmakers, and dictate payments that pharmacies receive when selling covered drugs.

The six largest PBMs manage more than 90% of the nation’s drug sales. Most are owned by or affiliated with health insurance giants like UnitedHealth Group, Cigna, Humana, and Aetna.

About 90 Montanan-owned pharmacies are not affiliated with national companies or PBMs, and 10 have closed in the past year, according to Josh Morris, who owns several small-town pharmacies in the state. Morris said his pharmacies lost $30,000 on underpaid drug claims last year and that they lose money on 90% of the brand-name drugs they dispense.

Representatives of independent Montana pharmacies say that without the changes provided by the legislation, more of their ranks will close, because they can’t make ends meet on drug reimbursement prices imposed by what they say are “take-it-or-leave-it” contracts from PBMs.

“We’re filling more prescriptions than ever before, but my employees haven’t had a raise in three years,” Morris said. “Our reimbursements are down 60% since 2019.”

PBMs are mounting a concerted effort in the Montana Senate to kill House Bill 740, arguing it could throw a huge wrench into drug pricing in Montana that would increase consumer costs.

“Not only is it going to cost people, it’s going to change fundamentally how prescription drugs are paid for in the state,” said Tonia Sorrell-Neal of the Pharmaceutical Care Management Association, a trade group representing PBMs. “It takes away the options for employers who are paying for these health plans” to keep drug prices low.

The bill restricts mail-order options for drugs, limits when PBMs can audit claims, and imposes excessive reimbursements, she said.

This battle between PBMs and independent pharmacies isn’t playing out just in Montana — it has roiled statehouses across the country, drawn the attention of Congress, and could end up before the U.S. Supreme Court.

Last summer, the federal House Oversight and Accountability Committee and the Federal Trade Commission issued highly critical reports saying PBMs use pricing tactics that keep drug costs high, help pad PBM profits, and harm independent pharmacies.

New federal regulations to crack down on PBMs had been included in a 2024 post-election budget bill before Congress but were stripped out at the last minute after a lobbying push by pharmacy benefit managers.

At least 20 states have passed laws regulating PBM payments to pharmacies and several other states, including California, are considering legislation this year.

Oklahoma passed one of the most expansive laws in 2019. But PBMs sued and won a federal court ruling that said the law does not apply to self-funded health plans, thus removing about two-thirds of the insured population from the law’s jurisdiction.

Oklahoma’s insurance commissioner last year asked the U.S. Supreme Court to overrule the decision, but the court hasn’t decided whether to take the case. Attorneys general from 31 states and the District of Columbia have asked the high court to rule in Oklahoma’s favor; Montana’s AG is not one of them.

In Montana, HB 740’s regulations would apply to PBMs managing self-funded plans, said the state insurance commissioner’s office, which so far supports the bill.

The key element of HB 740 is setting requirements on what PBMs must reimburse pharmacies for each prescription they fill, when that prescription is covered by a health plan using the PBM.

It says the reimbursement can be no less than 106% of the National Average Drug Acquisition Cost, or NADAC — which is determined by a survey of wholesale prices paid by pharmacies — plus a “dispensing fee” for each prescription.

The dispensing fee would be the same as what Montana’s Medicaid program pays pharmacies — $12 to $18 per prescription, depending on the size of the pharmacy. The state Medicaid program also pays the 106% minimum reimbursement.

Montana pharmacies say the dispensing fee covers their basic costs and enables them to make a profit on most sales. Under contracts with most PBMs, the pharmacies say they get no dispensing fee.

The bill also requires other changes in PBM business practices that pharmacies say benefit PBMs and make it harder for independent pharmacies to stay in business.

For example, HB 740 says PBMs cannot offer better prices to pharmacies that they own, cannot charge after-the-fact fees that lower reimbursement rates, cannot slow-walk approval of contracts, and cannot lower payments for drugs sold past a “sell-by” date imposed by the PBMs.

PBM and health plan lobbyists have attacked the bill for its breadth and detail, saying it’s so extensive that nobody truly knows how it may affect prescription-drug markets and prices in Montana.

“This bill has too much,” Bruce Spencer, an attorney for the Mountain Health Co-Op, told the House Business and Labor Committee at the bill’s first hearing in February. “It has unintended consequences that are severe in the financial world.”

Laura Shirtliff, a spokesperson for the state auditor’s office, said the bill’s provisions should be narrowed, to target assistance for smaller pharmacies.

PBM lobbyists are telling lawmakers to kill HB 740 and instead pass a bill to study the prescription-drug market in Montana, with an eye toward possible solutions to help rural pharmacies.

“I would say there are a lot of elements and factors that are impacting rural pharmacies’ business,” said Sorrell-Neal of the PBM trade group.

Supporters, however, said HB 740 needs to closely define exactly what’s happening in the field, between PBMs and pharmacies, so those practices can be regulated.

As for waiting two years for a study? Pharmacy owners say that’s too late, and that the time to fix the problem is now.

“The amount of damage that would be done in two years will never be able to be recovered from, in these communities,” Matovich said. “Ten years ago, we maybe lost money on five prescriptions a month. Now, it’s thousands of prescriptions a month.”

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

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HHS Secretary Robert F. Kennedy, Jr. today joined West Virginia Governor Patrick Morrisey for a press conference at the St. Joseph School in Martinsburg, WV.

Tim Winard knew he needed to buy health insurance when he left his management job in manufacturing to launch his own business.

It was the first time he had shopped around for coverage, searching for a plan that would cover him and his wife, who was also between jobs at the time.

“We were so nervous about not being on a company-provided plan,” Winard said.

After speaking with an insurance agent, he decided against enrolling in an Affordable Care Act plan because he was concerned about the potential cost. Instead, he chose a short-term policy, good for six months.

Six months later, Winard was still working on starting his business, so he signed up for another short-term policy with a different insurer that cost about $500 a month.

When he needed a colonoscopy, Winard, 57, called his insurance company. He said a representative told him to go to any facility he wanted for the procedure.

Early last year, he had the colonoscopy at a hospital in Elmhurst, Illinois, not far from his home in Addison.

The procedure went well, and Winard went home right afterward.

Then the bill came.

The Medical Procedure

Periodic colon cancer screening is recommended for people at average risk starting at age 45 and continuing until age 75, according to the U.S. Preventive Services Task Force. In addition to those for preventive purposes, doctors may order colonoscopies to diagnose existing concerns, as was the case for Winard.

There are several ways to screen, including noninvasive stool tests. A colonoscopy allows clinicians to examine and remove any polyps, which are then tested to see whether they are precancerous or malignant.

The Final Bill

$10,723.19, including $1,436 for the anesthesia and $1,039 for the recovery room. After an insurance discount, his plan paid $817.47. Winard was left owing $7,226.71.

The Billing Problem: A Short-Term Plan, With Coverage Caps and Gaps

Short-term, limited-duration insurance policies do not have to follow rules established under the ACA because they are intended to be only temporary coverage.

As Winard experienced, benefits within the plans can vary, with some setting specific dollar caps on certain types of medical care — sometimes far below what it costs. What’s covered can be hard to parse, and the insurer generally gets the last word on interpreting its rules.

While some short-term policies look like comprehensive major medical policies, all come with significant caveats. Most have limits that people accustomed to work-based or comprehensive ACA plans may find surprising.

All short-term insurance carriers, for example, screen applicants for health conditions and can reject them because of health problems or exclude those conditions. Many do not include drug coverage or maternity care.

The fact that short-term plans can cover fewer services, conditions, and patients is why they are generally less expensive than an unsubsidized ACA plan.

“The general trade-off is lower premiums versus what the plans actually cover,” said Cynthia Cox, vice president and director of the program on the ACA at KFF, a health information nonprofit that includes KFF Health News. “But the reason short-term plans are priced lower than a more comprehensive ACA plan is that they can deny people with preexisting conditions and don’t have to cover a lot of essential health benefits.”

Stunned that he owed more than $7,000 for his colonoscopy, Winard contacted his insurance company, Companion Life Insurance of Columbia, South Carolina.

An insurance representative told him in an email that it classified the procedure and all its costs, including the anesthesia, under his policy’s “outpatient surgery facility” benefit.

That benefit, the email said, capped insurance payment “within that facility” to a maximum of $1,000 per day.

That definition surprised Winard, who said he read his policy to mean that there was a cap on what could be charged for the facility itself — not for all the care he received there.

“I interpreted it to be a facility like a recovery room or surgery room,” he said. “They defined it to include any services at an outpatient facility.”

His plan says it covers colon cancer screening at 80% after patients meet their deductible. It also covers 80% of the cost of drugs provided in an outpatient setting.

Winard, who had met his deductible, said he expected he would pay only 20% toward the cost of his colonoscopy. But he also wondered why the screening, performed at Endeavor Health Elmhurst Hospital, was categorized by the insurer as a procedure at an “outpatient” facility.

According to the email Winard received from his insurer, his policy’s $1,000-a-day limit applies to “treatment or services in a state-approved freestanding ambulatory surgery center that is not part of a hospital, or a hospital outpatient surgery facility.”

Elmhurst Health spokesperson Allie Burke said that the hospital has an attached building where same-day outpatient procedures like colonoscopies are performed.

Short-term plans have been sold for decades. But in recent years, they’ve become a political football.

Out of concern that people would choose them over more comprehensive ACA insurance, President Barack Obama’s administration limited short-term plans’ terms to three months. Those rules were lifted in President Donald Trump’s first term, allowing the plans to again be sold as 364-day policies.

President Joe Biden, calling such plans “junk insurance,” restricted the policies to four months — a change that took effect one month after Winard’s procedure. Trump is expected to reverse Biden’s reversal and again make them available for longer durations.

The Resolution

In December, Winard hired an advocate, Linda Michelson, to help him parse his bill. They wrote to the hospital, offering to pay $4,000 if it would settle the entire bill — an amount Michelson said is about four times what Medicare would pay for a colonoscopy. Winard said the hospital declined the offer.

Spencer Walrath, another Elmhurst spokesperson, wrote in an email to KFF Health News that the hospital’s prices “reflect the value of the services we deliver.”

Companion Life did not respond to requests for comment. Scott Wood, who identified himself as a program manager and co-founder of Pivot Health, which markets Companion Life and other insurance plans, said in an interview that there was room for interpretation in the billing and that he had asked Companion Life to take another look.

Shortly after Wood’s comment to KFF Health News, Winard said he was contacted by his insurer. A representative told him that, upon reconsideration, the bill had been adjusted — although he was given no specific explanation as to why.

His new bill showed he owed only $770.

The Takeaway

Short-term plans can be appealing for some people because of the relatively low cost of their premiums, but consumers should read all the plan documents carefully before enrolling. Understand that the plans often won’t cover a full range of benefits, and check to see which services are covered and which are excluded. Check whether a policy includes per-day or per-policy-period dollar caps on coverage or other payout limits.

The federal government offers subsidies based on household income for ACA plans, which can make them comparable in cost to cheaper, short-term plans — but with a wider range of benefits.

In hindsight, Winard said he had not understood the difference between ACA policies and short-term plans.

His advice? Don’t rely solely on marketing materials, and always get a cost estimate, preferably in writing, before a nonemergency procedure like a colonoscopy.

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

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Mari Villar was slammed by a car that jumped the curb, breaking her legs and collapsing a lung. Amy Paulo was in pain from a femur surgery that wasn’t healing properly. Katie Kriegshauser suffered organ failure during pregnancy, weakening her so much that she couldn’t lift her baby daughter.

All went to physical therapy, but their health insurers stopped paying before any could walk without assistance. Paulo spent nearly $1,500 out of her own pocket for more sessions.

Millions of Americans rely on physical and occupational therapists to regain strength and motor skills after operations, diseases, and injuries. But recoveries are routinely stymied by a widespread constraint in health insurance policies: rigid caps on therapy sessions.

Insurers frequently limit such sessions to as few as 20 a year, a KFF Health News examination finds, even for people with severe damage such as spinal cord injuries and strokes, who may need months of treatment, multiple times a week. Patients can face a bind: Without therapy, they can’t return to work, but without working, they can’t afford the therapy.

Paulo said she pressed her insurer for more sessions, to no avail. “I said, ‘I’m in pain. I need the services. Is there anything I can do?’” she recalled. “They said, no, they can’t override the hard limit for the plan.”

A typical physical therapy session for a privately insured patient to improve daily functioning costs $192 on average, according to the Health Care Cost Institute. Most run from a half hour to an hour.

Insurers say annual visit limits help keep down costs, and therefore premiums, and are intended to prevent therapists from continuing treatment when patients are no longer improving. They say most injuries can be addressed in a dozen or fewer sessions and that people and employers who bought insurance could have purchased policies with better therapy benefits if it was a priority.

Atul Patel, a physiatrist in Overland Park, Kansas, and the treasurer of the American Academy of Physical Medicine and Rehabilitation, said insurers’ desire to prevent gratuitous therapy is understandable but has “gone too far.”

“Most patients get way less therapy than they would actually benefit from,” he said.

Hard caps on rehab endure in part because of an omission in the Affordable Care Act. While that law required insurers to cover rehab and barred them from setting spending restrictions on a patient’s medical care, it did not prohibit establishing a maximum number of therapy sessions a year.

More than 29,000 ACA health plans — nearly 4 in 5 — limit the annual number of physical therapy sessions, according to a KFF Health News analysis of plans sold last year to individuals and small businesses. Caps generally ranged from 20 to 60 visits; the most common was 20 a year.

Health plans provided by employers often have limits of 20 or 30 sessions as well, said Cori Uccello, senior health fellow at the American Academy of Actuaries.

“It’s the gross reality in America right now,” said Sam Porritt, chairman of the Falling Forward Foundation, a Kansas-based philanthropy that has paid for therapy for about 200 patients who exhausted their insurance over the past decade. “No one knows about this except people in the industry. You find out about it when tragedy hits.”

Even in plans with no caps, patients are not guaranteed unlimited treatment. Therapists say insurers repeatedly require prior authorization, demanding a new request every two or three visits. Insurers frequently deny additional sessions if they believe there hasn’t been improvement.

“We’re seeing a lot of arbitrary denials just to see if you’ll appeal,” said Gwen Simons, a lawyer in Scarborough, Maine, who represents therapy practices. “That’s the point where the therapist throws up their hands.”

‘Couldn’t Pick Her Up’

Katie Kriegshauser, a 37-year-old psychologist from Kansas City, Missouri, developed pregnancy complications that shut down her liver, pancreas, and kidneys in November 2023. After giving birth to her daughter, she spent more than three months in a hospital, undergoing multiple surgeries and losing more than 40 pounds so quickly that doctors suspected her nerves became damaged from compression. Her neurologist told her he doubted she would ever walk again.

Kriegshauser’s UnitedHealthcare insurance plan allowed 30 visits at Ability KC, a rehabilitation clinic in Kansas City. She burned through them in six weeks in 2024 because she needed both physical therapy, to regain her mobility, and occupational therapy, for daily tasks such as getting dressed.

“At that point I was starting to use the walker from being completely in the wheelchair,” Kriegshauser recalled. She said she wasn’t strong enough to change her daughter’s diaper. “I couldn’t pick her up out of her crib or put her down to sleep,” she said.

The Falling Forward Foundation paid for additional sessions that enabled her to walk independently and hold her daughter in her arms. “A huge amount of progress happened in that period after my insurance ran out,” she said.

In an unsigned statement, UnitedHealthcare said it covered the services that were included in Kriegshauser’s health plan. The company declined to permit an official to discuss its policies on the record because of security concerns.

A Shattered Teenager

Patients who need therapy near the start of a health plan’s year are more likely to run out of visits. Mari Villar was 15 and had been walking with high school friends to get a bite to eat in May 2023 when a car leaped over a curb and smashed into her before the driver sped away.

The accident broke both her legs, lacerated her liver, damaged her colon, severed an artery in her right leg, and collapsed her lung. She has undergone 11 operations, including emergency exploratory surgery to stop internal bleeding, four angioplasties, and the installation of screws and plates to hold her leg bones together.

Villar spent nearly a month in Shirley Ryan AbilityLab’s hospital in Chicago. She was discharged after her mother’s insurer, Blue Cross and Blue Shield of Illinois, denied her physician’s request for five more days, making her more reliant on outpatient therapy, according to records shared by her mother, Megan Bracamontes.

Villar began going to one of Shirley Ryan’s outpatient clinics, but by the end of 2023, she had used up the 30 physical therapy and 30 occupational therapy visits the Blue Cross plan allowed. Because the plan ran from July to June, she had no sessions left for the first half of 2024.

“I couldn't do much,” Villar said. “I made lots of progress there, but I was still on crutches.”

Dave Van de Walle, a Blue Cross spokesperson, said in an email that the insurer does not comment on individual cases. Razia Hashmi, vice president for clinical affairs at the Blue Cross Blue Shield Association, said in a written statement that patients who have run out of sessions should “explore alternative treatment plans” including home exercises.

Villar received some extra sessions from the Falling Forward Foundation. While her plan year has reset, Villar is postponing most therapy sessions until after her next surgery so she will be less likely to run out again. Bracamontes said her daughter still can’t feel or move her right foot and needs three more operations: one to relieve nerve pain, and two to try to restore mobility in her foot by lengthening her Achilles tendon and transferring a tendon in her left leg into her right.

“Therapy caps are very unfair because everyone’s situation is different,” Villar said. “I really depend on my sessions to get me to a new normalcy. And not having that and going through all these procedures is scary to think about.”

Rationing Therapy

Most people who use all their sessions either stop going or pay out-of-pocket for extra therapy.

Amy Paulo, a 34-year-old Massachusetts woman recovering from two operations on her left leg, maxed out the 40 visits covered by Blue Cross Blue Shield of Massachusetts in 2024, so she spent $1,445 out-of-pocket for 17 therapy sessions.

Paulo needed physical therapy to recover from several surgeries to shorten her left leg to the length of her right leg — the difference a consequence of juvenile arthritis. Her recovery was prolonged, she said, because her femur didn’t heal properly after one of the operations, in which surgeons cut out the middle of her femur and put a rod in its place.

“I went ballistic on Blue Cross many, many times,” said Paulo, who works with developmentally delayed children.”

Amy McHugh, a Blue Cross spokesperson, declined to discuss Paulo’s case. In an email, she said most employers who hire Blue Cross to administer their health benefits choose plans with “our standard” 60-visit limit, which she said is more generous than most insurers offer, but some employers “choose to allow for more or fewer visits per year.”

Paulo said she expects to restrict her therapy sessions to once a week instead of the recommended twice a week because she’ll need more help after an upcoming operation on her leg.

“We had to plan to save my visits for this surgery, as ridiculous as it sounds,” she said.

Medicare Is More Generous

People with commercial insurance plans face more hurdles than those on Medicare, which sets dollar thresholds on therapy each year but allows therapists to continue providing services if they document medical necessity. This year the limits are $2,410 for physical and speech therapy and $2,410 for occupational therapy.

Private Medicare Advantage plans don’t have visit or dollar caps, but they often require prior authorization every few visits. The U.S. Senate Permanent Subcommittee on Investigations found last year that MA plans deny requests for physical and occupational therapy at hospitals and nursing homes at higher rates than they reject other medical services.

Therapists say many commercial plans require prior authorization and mete out approvals parsimoniously. Insurers often make therapists submit detailed notes, sometimes for each session, documenting patients’ treatment plans, goals, and test results showing how well they perform each exercise.

“It’s a battle of getting visits,” said Jackee Ndwaru, an occupational therapist in Jacksonville, Florida. “If you can’t show progress they’re not going to approve.”

An Insurer Overruled

Marjorie Haney’s insurance plan covered 20 therapy sessions a year, but Anthem Blue Cross Blue Shield approved only a few visits at a time for the rotator cuff she tore in a bike accident in Maine. After 13 visits in 2021, Anthem refused to approve more, writing that her medical records “do not show you made progress with specific daily tasks,” according to the denial letter.

Haney, a physical therapist herself, said the decision made no sense because at that stage of her recovery, the therapy was focused on preventing her shoulder from freezing up and gradually expanding its range of motion.

“I went through those visits like they were water,” Haney, now 57, said. “My range was getting better, but functionally I couldn’t use my arm to lift things.”

Haney appealed to Maine’s insurance bureau for an independent review. In its report overturning Anthem’s decision, the bureau’s physician consultant, William Barreto, concluded that Haney had made “substantial improvement” — she no longer needed a shoulder sling and was able to return to work with restrictions. Barreto also noted that nothing in Anthem’s policy required progress with specific daily tasks, which was the basis for Anthem’s refusal.

“Given the member’s substantial restriction in active range of motion and inability to begin strengthening exercises, there is remaining deficit that requires the skills and training of a qualified physical therapist,” the report said.

Anthem said it requires repeated assessments before authorizing additional visits “to ensure the member is receiving the right care for the right period of time based on his or her care needs.” In the statement provided by Stephanie DuBois, an Anthem spokesperson, the insurer said this process “also helps prevent members from using up all their covered treatment benefits too quickly, especially if they don’t end up needing the maximum number of therapy visits.”

In 2023, Maine passed a law banning prior authorization for the first 12 rehab visits, making it one of the few states to curb insurer limitations on physical therapy. The law doesn’t protect residents with plans based in other states or plans from a Maine employer who self-insures.

Haney said after she won her appeal, she spaced out the sessions her plan permitted by going once weekly. “I got another month,” she said, “and I stretched it out to six weeks.”

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

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OCR investigates a major medical school in California for reportedly prioritizing discriminatory race-based criteria over academic merit.

En las tierras altas boscosas del norte de Arkansas, donde los pueblos pequeños tienen pocos dentistas, los funcionarios del agua que atienden a más de 20.000 personas han desafiado abiertamente la ley estatal durante más de una década al negarse a aregar flúor al agua potable.

Por su negativa, la Ozark Mountain Regional Public Water Authority ha recibido cientos de multas estatales por un valor aproximado de $130.000, que se guardan en una caja de cartón y no se pagan, según Andy Anderson, quien se opone a la fluoración y ha dirigido el sistema de agua durante casi dos décadas.

Esta región de Ozark se encuentra entre cientos de comunidades rurales estadounidenses que enfrentan un doble golpe para la salud bucal: una grave escasez de dentistas y la falta de agua potable fluorada, considerada ampliamente por los dentistas como una de las herramientas más efectivas para prevenir la caries.

Pero a medida que el movimiento contra el flúor cobra un impulso sin precedentes, podría resultar que los habitantes de Ozark no se quedaron atrás después de todo.

“Al final ganaremos”, dijo Anderson. “Seremos reivindicados”.

El flúor, un mineral natural, mantiene los dientes fuertes cuando se añade al agua potable, según los Centros para el Control y Prevención de Enfermedades (CDC) y la Asociación Dental Americana (ADA). Sin embargo, el movimiento antiflúor se ha revitalizado desde que un informe gubernamental del verano pasado descubrió una posible relación entre un coeficiente intelectual más bajo en niños y el consumo de cantidades de flúor superiores a las recomendadas en el agua potable estadounidense.

Decenas de comunidades han decidido dejar de fluorar su agua en los últimos meses, y las autoridades estatales de Florida y Texas han instado a sus sistemas de agua a hacer lo mismo. Utah está a punto de convertirse en el primer estado en prohibir el flúor en el agua del grifo.

El secretario de Salud y Servicios Humanos, Robert F. Kennedy Jr., quien desde hace tiempo ha defendido teorías alternativas sobre la salud, ha calificado el flúor de “residuo industrial” y “neurotoxina peligrosa” y ha afirmado que la administración Trump recomendará su eliminación del agua potable pública.

Por otra parte, los esfuerzos republicanos por extender los recortes de impuestos y reducir el gasto federal podrían afectar negativamente a Medicaid, lo que podría agravar la escasez de dentistas en las zonas rurales, donde muchos residentes dependen del programa federal de seguros para cualquier tipo de atención dental.

Los expertos en odontología advierten que la erosión simultánea de Medicaid y la fluoración podría exacerbar una crisis de salud bucal rural y revertir décadas de progreso contra la caries dental, especialmente en niños y personas que rara vez van al dentista.

“Si las personas tienen poco acceso a atención profesional y no tienen acceso a la fluoración del agua, entonces están perdiendo dos de los pilares fundamentales para mantenerse saludables de por vida”, afirmó Steven Levy, dentista e investigador líder en fluoruro en la Universidad de Iowa.

Muchos ya los han perdido.

Doble crisis: desiertos dentales y “libres de flúor”

Casi 25 millones de estadounidenses viven en zonas sin suficientes dentistas —más del doble de lo que estimaba el gobierno federal— según un estudio reciente de la Universidad de Harvard que midió los “desiertos dentales” del país con mayor profundidad y precisión que antes.

Hawazin Elani, dentista y epidemióloga de Harvard, coautora del estudio, descubrió que muchas zonas con escasez son rurales y pobres, y dependen en gran medida de Medicaid. Pero muchos dentistas no aceptan Medicaid porque los pagos pueden ser bajos, dijo Elani.

La ADA ha estimado que solo un tercio de los dentistas atienden a pacientes con Medicaid.

“Sospecho que esta situación es mucho peor para los beneficiarios de Medicaid”, dijo Elani. “Si tienes Medicaid y tu dentista más cercano no lo acepta, probablemente tendrás que ir al tercero, cuarto o quinto”.

El estudio de Harvard identificó más de 780 condados donde más de la mitad de los residentes viven en una zona con escasez de agua. De esos condados, al menos 230 también tienen agua potable pública sin fluor, total o en parte, según un análisis de datos de fluoruro de KFF publicado por los CDC. Esto significa que las personas en estas áreas que no pueden encontrar un dentista tampoco obtienen protección para sus dientes con el agua del grifo.

En el centro de este grupo se encuentra la Ozark Mountain Regional Public Water Authority, que presta servicios a los condados de Boone, Marion, Newton y Searcy, en Arkansas. Se ha negado a añadir flúor desde que Arkansas promulgó un mandato estatal en 2011. Tras el inicio de las multas semanales en 2016, el sistema de agua impugnó sin éxito el mandato de flúor en un tribunal estatal, y luego volvió a perder en apelación.

Anderson, quien preside la junta del sistema de agua desde 2007, afirmó que le gustaría impugnar el mandato de flúor de nuevo en los tribunales y que, de ser necesario, presentaría el caso él mismo. En una entrevista telefónica, afirmó creer que el flúor puede perjudicar el cerebro y el cuerpo hasta el punto de hacer que las personas “engorden y se vuelvan perezosas”.

Cerca de allí, en la pequeña comunidad de Leslie, Arkansas, que recibe agua del sistema de Ozark, el único dentista de la ciudad opera en una clínica unipersonal.

Es un dentista escondido en la trastienda de una tienda de antigüedades. Unas letras pintadas a mano en el escaparate anuncian un “buen dentista”.

James Flanagin, dentista de tercera generación que abrió esta clínica hace tres años, comentó que se sintió atraído por Leslie por el encanto pintoresco y las sonrisas amables de la vida de pueblo. Pero esas mismas sonrisas también revelan las inconfundibles consecuencias de negarse a fluorar, afirmó.

“No cabe duda de que aquí hay más caries de las que habría en otras circunstancias”, afirmó. “Vas a tener más caries si tu agua no está fluorada. Es un hecho”.

El flúor, un gran logro de la salud pública

El flúor se agregó por primera vez al agua pública en una ciudad estadounidense en 1945 y, para 1980, se había extendido a la mitad de la población del país, según los CDC. Debido a la drástica disminución de las caries que se produjo posteriormente, en 1999 los CDC clasificaron la fluoración como uno de los 10 grandes logros de salud pública del siglo XX.

Actualmente, más del 70 % de la población estadounidense que utiliza sistemas públicos de agua recibe agua fluorada, con una concentración recomendada de 0,7 miligramos por litro, o aproximadamente tres gotas en un barril de 55 galones, según los CDC.

El flúor también está presente en la pasta de dientes moderna, el enjuague bucal, el barniz dental y algunos alimentos y bebidas, como las pasas, las papas, la avena, el café y el té negro. Sin embargo, varios expertos dentales afirmaron que estos productos no llegan de forma fiable a tantas familias de bajos ingresos como el agua potable, que tiene el beneficio adicional, en comparación con la pasta de dientes, de fortalecer los dientes de los niños desde dentro a medida que crecen.

Dos encuestas recientes han revelado que la mayor parte de los estadounidenses apoya la fluoración, pero una minoría considerable no lo hace. Encuestas de Axios/Ipsos y AP-NORC revelaron que el 48% y el 40% de los encuestados deseaban mantener el flúor en el suministro público de agua, mientras que el 29% y el 26% apoyaban eliminarlo.

Chelsea Fosse, experta en políticas de salud bucal de la American Academy of Pediatric Dentistry, expresó su preocupación por el temor injustificado al flúor, que podría llevar a muchas personas a dejar de usar pasta dental y esmalte fluorados, justo cuando los recortes a Medicaid dificultan la consulta con el dentista.

Esta combinación, afirmó, podría ser devastadora.

“Será evidente el impacto que esto tiene en la prevalencia de la caries dental”, declaró Fosse. “Si eliminamos la fluoración del agua, si recortamos Medicaid y si no apoyamos a los proveedores para que identifiquen y atiendan a las poblaciones más necesitadas, realmente no sé qué haremos”.

Múltiples estudios han demostrado cómo podría ser la eliminación de la flúor del agua. En los últimos años, estudios realizados en ciudades de Alaska y Canadá han demostrado que las comunidades que suspendieron la fluoración experimentaron aumentos significativos en la incidencia de caries en niños, en comparación con ciudades similares que no lo hicieron.

Un estudio realizado en 2024 en Israel reportó un aumento del doble en los tratamientos dentales para niños en los cinco años posteriores a la suspensión de la fluoración en el país en 2014.

A pesar de los beneficios de la fluoración, algunos se han opuesto ferozmente desde su inicio, según Catherine Hayes, experta dental de Harvard que asesora a la Asociación Dental Americana sobre el flúor y ha estudiado su uso durante tres décadas.

Inicialmente, la fluoración se desprestigió como un complot comunista contra Estados Unidos, dijo Hayes, y posteriormente surgieron temores de posibles vínculos con el cáncer, que fueron refutados mediante una extensa investigación científica.

En la década de 1980, la histeria alimentó el temor de que el flúor causara sida, lo cual era “absurdo”, dijo Hayes. Más recientemente, el movimiento antiflúor se aprovechó de investigaciones internacionales que sugieren que los altos niveles de flúor pueden obstaculizar el desarrollo cerebral infantil, y se ha visto impulsado por importantes victorias legales y políticas.

En agosto pasado, un informe muy debatido del Programa Nacional de Toxicología de los Institutos Nacionales de la Salud concluyó, con “un nivel de confianza moderado”, que la exposición a niveles de flúor superiores a los presentes en el agua potable estadounidense se asocia con un coeficiente intelectual más bajo en los niños.

El informe se basó en un análisis de 74 estudios realizados en otros países, la mayoría de los cuales se consideraron de “baja calidad” e implicaron una exposición de al menos 1,5 miligramos de flúor por litro de agua —más del doble de la recomendación estadounidense—, según el programa.

Al mes siguiente, en una demanda de larga data presentada por opositores al flúor, un juez federal de California declaró que el posible vínculo entre el flúor y un coeficiente intelectual más bajo era demasiado arriesgado como para ignorarlo, y ordenó a la Agencia de Protección Ambiental (EPA) federal que tomara medidas no especificadas para reducir ese riesgo.

La EPA comenzó a apelar este fallo en los últimos días de la administración Biden, pero la administración Trump podría revertir su postura.

La EPA y el Departamento de Justicia declinaron hacer comentarios. La Casa Blanca y el Departamento de Salud y Servicios Humanos no respondieron a las preguntas sobre el fluoruro.

A pesar del informe del Programa Nacional de Toxicología, Hayes afirmó que, hasta la fecha, no se ha demostrado una asociación entre un coeficiente intelectual bajo y la cantidad de fluoruro presente en el agua de la mayoría de los estadounidenses. El fallo judicial podría impulsar investigaciones adicionales en el país. Hayes espera que finalmente pongan fin a la campaña contra el flúor.

“Es uno de los grandes misterios de mi carrera, qué la sustenta”, declaró Hayes. “Lo que me preocupa es que algunos miembros del público, y algunos de nuestros legisladores, creen que hay algo de cierto en esto”.

No todos los expertos desestimaron el informe del programa de toxicología. Bruce Lanphear, investigador de salud infantil de la Universidad Simon Fraser en Columbia Británica, publicó un editorial en enero que afirmaba que los hallazgos deberían impulsar a las organizaciones sanitarias a “reevaluar los riesgos y beneficios del flúor, especialmente para las mujeres embarazadas y los bebés”.

“Quienes proponen la fluoración ahora deben demostrar que es segura”, declaró Lanphear a NPR en enero. “Eso es lo que hace este estudio: desplaza la carga de la prueba, o debería”.

Ciudades y estados reconsideran el flúor

En lo que va del año, al menos 14 estados han considerado o están considerando proyectos de ley que levantarían los mandatos de flúor o prohibirían por completo el flúor en el agua potable.

En febrero, los legisladores de Utah aprobaron la primera prohibición del país. El gobernador republicano Spencer Cox le dijo a ABC4 que planea firmarla. Tanto el director general de servicios de salud de Florida, Joseph Ladapo, como el comisionado de agricultura de Texas, Sid Miller, han instado a sus respectivos estados a poner fin a la fluoración.

“No quiero que el ‘Gran Hermano’ me diga qué hacer”, declaró Miller a The Dallas Morning News en febrero. “El gobierno nos ha impuesto esto durante demasiado tiempo”.

Además, decenas de ciudades y condados han decidido suspender la fluoración en los últimos seis meses, incluyendo al menos 16 comunidades de Florida con una población combinada de más de 1.6 millones, según informes de prensa y la Red de Acción contra el Flúor.

Stuart Cooper, director ejecutivo de ese grupo, afirmó que el impulso sin precedentes del movimiento sería más fuerte si Kennedy y la administración Trump cumplen con la recomendación contra el flúor.

Cooper predijo que la mayoría de las comunidades estadounidenses dejarán de fluora su agua en unos años.

“Creo que lo que se está viendo en Florida, donde todas las comunidades se desmoronan como fichas de dominó, ocurrirá ahora en Estados Unidos”, afirmó. “Creo que estamos presenciando su fin absoluto”.

Si la predicción de Cooper es correcta, afirmó Hayes, la caries generalizada sería visible en unos años. Los dientes de los niños se pudrirán, agregó, aunque “sabemos cómo prevenirlo por completo”.

“Es un dolor y un sufrimiento innecesarios”, afirmó Hayes. “Si se va a cualquier hospital infantil del país, se verá una lista de espera de niños para entrar al quirófano y que les arreglen los dientes porque tienen caries graves por no haber tenido acceso ni al agua fluorada ni a otros tipos de flúor. Desafortunadamente, esto solo va a empeorar”.

La editora de datos de KFF Health News, Holly K. Hacker, contribuyó con este artículo.

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

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

As had been rumored for weeks, Health and Human Services Secretary Robert F. Kennedy Jr. unveiled a plan to reorganize the department. It involves the downsizing of its workforce, which formerly was roughly 80,000 people, by a quarter and consolidating dozens of agencies that were created and authorized by Congress.

Meanwhile, in just the past week, HHS abruptly cut off billions in funding to state and local public health departments, and canceled all research studies into covid-19, as well as diseases that could develop into the next pandemic.

This week’s panelists are Julie Rovner of KFF Health News, Maya Goldman of Axios News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Alice Miranda Ollstein of Politico.

Panelists Maya Goldman Axios @mayagoldman_ Read Maya's stories Joanne Kenen Johns Hopkins University and Politico @JoanneKenen Read Joanne's stories. Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories.

Among the takeaways from this week’s episode:

• As federal health officials reveal the targets of a significant workforce purge and reorganization, the GOP-controlled Congress has been notably quiet about the Trump administration’s intrusions on its constitutional powers. Many of the administration’s attempts to revoke and reorganize federally funded work are underway despite Congress’ previous approval of that funding. And while changes might be warranted, reviewing how the federal government works (or doesn’t) — in the public forums of congressional hearings and floor debate — is part of Congress’ responsibilities.
• The news of a major reorganization at HHS also comes before the Senate finishes confirming its leadership team. New leaders of the National Institutes of Health and the FDA were confirmed just this week; Mehmet Oz, the nominated director of the Centers for Medicare & Medicaid Services, had not yet been confirmed when HHS made its announcement; and President Donald Trump only recently named a replacement nominee to lead the Centers for Disease Control and Prevention, after withdrawing his first pick.
• While changes early in Trump’s second term have targeted the federal government and workforce, the impacts continue to be felt far outside the nation’s capital. Indeed, cuts to jobs and funding touch every congressional district in the nation. They’re also being felt in research areas that the Trump administration claims as priorities, such as chronic disease: The administration said this week it will shutter the office devoted to studying long covid, a chronic disease that continues to undermine millions of Americans’ health.
• Meanwhile, in the states, doctors in Texas report a rise in cases of children with liver damage due to ingesting too much vitamin A — a supplement pushed by Kennedy in response to the measles outbreak. The governor of West Virginia signed a sweeping ban on food dyes and additives. And a woman in Georgia who experienced a miscarriage was arrested in connection with the improper disposal of fetal remains.

Also this week, Rovner interviews KFF senior vice president Larry Levitt about the 15th anniversary of the signing of the Affordable Care Act and the threats the health law continues to face.

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

Julie Rovner: CNN’s “State Lawmakers Are Looking To Ban Non-Existent ‘Chemtrails.’ It Could Have Real-Life Side Effects,” by Ramishah Maruf and Brandon Miller. 

Alice Miranda Ollstein: The New York Times Wirecutter’s “23andMe Just Filed for Bankruptcy. You Should Delete Your Data Now,” by Max Eddy. 

Maya Goldman: KFF Health News’ “‘I Am Going Through Hell’: Job Loss, Mental Health, and the Fate of Federal Workers,” by Rachana Pradhan and Aneri Pattani. 

Joanne Kenen: The Atlantic’s “America Is Done Pretending About Meat,” by Yasmin Tayag. 

Also mentioned in this week’s podcast:

• The New York Times’ “West Virginia Bans 7 Artificial Food Dyes, Citing Health Concerns,” by Alice Callahan.
• The Washington Post’s “Why I Left My Job Leading Public Health Messaging for the CDC,” by Kevin Griffis.
• Politico’s “The Limits of RFK Jr.’s Power,” by Joanne Kenen.

Click to open the transcript Transcript: The Ax Falls at HHS

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

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 27, at 10 a.m. As always, news happens fast — really fast this week — and things might well have changed by the time you hear this. So, here we go. 

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

Alice Miranda Ollstein: Hello. 

Rovner: Maya Goldman of Axios News. 

Maya Goldman: Great to be here. 

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

Joanne Kenen: Hi everybody. 

Rovner: Later in this episode we’ll have my interview with KFF Senior Vice President Larry Levitt, who will riff on the 15th anniversary of the signing of the Affordable Care Act and what its immediate future might hold. But first, this week’s news. 

So for this second week in a row, we have news breaking literally as we sit down to tape, this time in the form of an announcement from the Department of Health and Human Services with the headline “HHS Announces Transformation to Make America Healthy Again.” The plan calls for 10,000 full-time employees to lose their jobs at HHS, and when combined with early retirement and other reductions, it will reduce the department’s workforce by roughly 25%, from about 82,000 to about 62,000. It calls for creation of a new “Administration for a Healthy America” that will combine a number of existing HHS agencies, including the Health Resources and Services Administration, the Agency for Toxic Substances and Disease Registry, and the National Institute for Occupational Safety and Health under one umbrella. 

Reading through the announcement, a lot of it actually seems to make some sense, as many HHS programs do overlap. But the big overriding question is: Can they really do this? Isn’t this kind of reorganization Congress’ job? 

Ollstein: Congress has not stood up for itself in its power-of-the-purse role so far in the Trump administration. They have stood by, largely, the Republican majorities in the House and Senate, or they’ve offered sort of mild concerns. But they have not said, Hey guys, this is our job, all of these cuts that are happening. There’s talk of a legislative package that would codify the DOGE [Department of Government Efficiency] cuts that are already happening, rubber-stamping it after the fact. But Congress has not made moves to claw back its authority in terms of saying, Hey, we approved this funding, and you can’t just go back and take it. There’s lawsuits to that effect, but not from the members — from outside groups, from labor unions, from impacted folks, but not our dear legislative branch. 

Rovner: You know, Joanne, you were there for a lot of this. We covered the creation of a lot of these agencies. Agency for Healthcare Research and Quality, I covered the creation of its predecessor agency, which there were huge compromises that went into this, lots of policymaking. It just seems that RFK [Robert F. Kennedy] Jr. going to say: We don’t actually care all these things you did. We’re just going to redo the whole thing. 

Kenen: As many of the listeners know, many laws that Congress passes have to be reauthorized every five years or every 10 years. Five is the most typical, and they often don’t get around to it and they extend and blah, blah, blah, blah, blah. But basically the idea is that things do change and things do need to be reevaluated. So, normally when you do reauthorization — we all just got this press release announcing all these mergers of departments and so forth at HHS. None of us are experts in procurement and IT. Maybe those two departments do need to be merged. I mean, I don’t know. That’s the kind of thing that, reauthorization, Congress looks at and Congress thinks about. Well, and agencies and legislation do get updated. Maybe the NIH [National Institutes of Health] doesn’t need 28 institutes and they should have 15 or whatever. But it’s just sort of this, somebody coming in and waving a magic DOGE wand, and Congress is not involved. And there’s not as much public input and expert input as you’d have because Congress holds hearings and listens to people who do have expertise. 

So it’s not just Congress not exercising power to make decisions. It’s also Congress not deliberating and learning. I mean all of us learned health policy partly by listening to experts at congressional panels. We listen to people at Finance, and Energy and Commerce, and so forth. So it’s not just Congress’ voice being silenced. It’s this whole review and fact-based — and experts don’t always agree and Congress makes the final call. But that’s just been short-circuited. And I mean we all know there’s duplication in government, but this isn’t the process we have historically used to address it. 

Rovner: You know, one other thing, I think they’re merging agencies that are in different locations, which on the one hand might make sense. But if you have one central IT or one central procurement agency in Washington or around Washington, you’ve got a lot of these organizations that are outside of Washington. And they’re outside of Washington because members of Congress put them there. A lot of them are in particular places because they were parochial decisions made by Congress. That may or may not make sense, but that’s where they are. It might or might not make sense. Maya, sorry I interrupted you. 

Goldman: No, I was just going to add to Joanne’s point. Julie, I think before we started recording you mentioned that the administration is saying: We’ve thought this all out. These are well-researched decisions. But they’ve been in office for two months. How much research can you really do in that time and how intentional can those decisions really be in that time frame? 

Ollstein: Especially because all of the leaders aren’t even in place yet. Some people were just confirmed, which we’re going to talk about. Some people are on their way to confirmation but not there yet. They haven’t had the chance to talk to career staff, figure out what the redundancies are, figure out what work is currently happening that would be disrupted by various closures and mergers and stuff. So Maya’s exactly right on that. 

Goldman: You know there’s — the administration chose a lead for HRSA and other offices. And so what happens to those positions now? Do they just get demoted effectively because they’re no longer heads of offices? I would be pretty— 

Rovner: But we have a secretary of education whose job is to close the department down, so—. 

Goldman: Good point. 

Rovner: That’s apparently not unprecedented in this administration. Well, as Alice was saying, into this maelstrom of change comes those that President [Donald] Trump has selected to lead these key federal health agencies. The Senate Tuesday night confirmed policy researcher Jay Bhattacharya to head the NIH and Johns Hopkins surgeon and policy analyst Marty Makary to head the Food and Drug Administration. Bhattacharya was approved on a straight party-line vote, while Makary, who I think it’s fair to say was probably the least controversial of the top HHS nominees, won the votes of three Democrats: Minority Whip Dick Durbin of Illinois and New Hampshire’s Democrats, [Sens.] Maggie Hassan and Jeanne Shaheen, along with all of the Republicans. What are any of you watching as these two people take up their new positions? 

Kenen: Well, I mean, the NIH, Bhattacharya — who I hope I’ve learned to pronounce correctly and I apologize if I have not yet mastered it — he’s really always talked about major reorganization, reprioritization. And as I said, maybe it’s time to look at some overlap, and science has changed so much in the last decade or so. I mean are the 28 — I think the number’s 28 — are the 28 current institutes the right— 

Rovner: I think it’s 27. 

Kenen: Twenty-seven. I mean, are there some things that need to be merged or need to be reorganized? Probably. You could make a case for that. But that’s just one thing. The amount of cuts that the administration announced before he got there, and there is a question in some things he’s hinted at, is he going to go for that? His background is in academia, and he does have some understanding of what this money is used for. We’ve talked before, when you talk to a layperson, when you hear the word “overhead,” “indirect costs,” what that conjures up to people as waste, when in fact it’s like paying for the electricity, paying for the staff to comply with the government regulations about ethical research on human beings. It’s not parties. It’s security. It’s cleaning the animal cages. It’s all this stuff. So is he going to cut as deeply as universities have been told to expect? We don’t know yet. And that’s something that every research institution in America is looking at. 

The FDA, he’s a contrarian on certain things but not across the board. I mean, as you just said, Julie, he’s a little less controversial than the others. He is a pancreatic surgeon. He does have a record as a physician. He has never been a regulator, and we don’t know exactly where his contrarian views will be unconventional and where — there’s a lot of agreement with certain things Secretary Kennedy wants to do, not everything. But there is some broad agreement on, some of his food issues do make sense. And the FDA will have a role in that. 

Rovner: I will say that under this reorganization plan the FDA is going to lose 3,500 people, which is a big chunk of its workforce. 

Kenen: Well things like moving SAMHSA [the Substance Abuse and Mental Health Services Administration], which is the agency that works on drug abuse within and drug addiction within HHS, that’s being folded into something else. And that’s been a national priority. The money was voted to help with addiction on a bipartisan basis several times in recent years. The grants to states, that’s all being cut back. The subagency with HHS is being folded into something else. And we don’t know. We know 20,000 jobs are being cut. The 10 announced today and the 10 we already knew about. We don’t know where they’re all coming from and what happens to the expertise and experience addressing something like the addiction crisis and the drug abuse crisis in America, which is not partisan. 

Rovner: All right. Well we’ll get to the cuts in a second. Also on Tuesday, the Senate Finance Committee voted, also along party lines, to advance to the Senate floor the nomination of Dr. Mehmet Oz to head the Centers for Medicare & Medicaid Services. And while he would seem likely to get confirmed by the full Senate, I did not have on my bingo card Dr. Oz’s nomination being more in doubt due to Republicans than Democrats. Did anybody else? 

Ollstein: Based on our reporting, it’s not really in doubt. [Sen.] Josh Hawley has raised concerns about Dr. Oz being too squishy on abortion and trans health care, but it does not seem that other Republicans are really jumping on board with that crusade. It sort of reminds me of concerns that were raised about RFK Jr.’s background on abortion that pretty much just fizzled and Republicans overwhelmingly fell in line. And that seems to be what’s going to happen now. Although you never know. 

Rovner: At least it hasn’t been, as you point out, it hasn’t failed anybody else. Well, the one nominee who did not make it through HHS was former Congressman Dave Weldon to head the CDC [Centers for Disease Control and Prevention]. So now we have a new nominee. It’s actually the acting director, Susan Monarez, who by the way has a long history in federal health programs but no history at the CDC. Who can tell us anything about her? 

Goldman: She seems like a very interesting and in some ways unconventional pick, especially for this administration. She was a career civil servant, and she worked under the Obama administration. And it’s interesting to see them be OK with that, I think. And she also has a lot of health care background but not in CDC. She’s done a lot of work on AI in health care and disaster preparedness, I think. And clearly she’s been leading the CDC for the last couple months. So she knows to that extent. But it will be very interesting when she gets around to confirmation hearings to hear what her priorities are, because we really have no idea. 

Rovner: Yeah, she’s not one of those good-on-Fox News people that we’ve seen so many of in this administration. So while Monarez’s nomination seems fairly noncontroversial, at least so far, the nominee to be the new HHS inspector general is definitely not. Remember that President Trump fired HHS IG Christi Grimm just days after he took office, along with the IGs of several other departments. Grimm is still suing to get her job back, since that firing violated the terms of the 1978 Inspector General Act. But now the administration wants to replace her with Thomas Bell, who’s had a number of partisan Republican jobs for what’s traditionally been a very nonpartisan position and who was fired by the state of Virginia in 1997 for apparently mishandling state taxpayer funds. That feels like it might raise some eyebrows as somebody who’s supposed to be in charge of waste, fraud, and abuse. Or am I being naive? 

Goldman: My eyebrows were definitely raised when I saw that news. I, to be honest, don’t know very much about him but will be very interested to see how things go, especially given that fraud, waste, and abuse and rooting out fraud, waste, and abuse are high priorities for this administration, but also things that are very up to interpretation in a certain way. 

Ollstein: Yes, although it’s clearly been very mixed on that front because the administration is also dismantling entire agencies that go after fraud and abuse— 

Goldman: Exactly. 

Ollstein: —like the Consumer Financial Protection Bureau. So there is some mixed messaging on that front for sure. 

Rovner: Well, as Joanne mentioned, the DOGE cuts continue at the NIH. In just the last week, billions of dollars in grants have been terminated that were being used to study AIDS and HIV, covid and other potential pandemic viruses, and climate change, among other things. The NIH also closed its office studying long covid. Thank you, Alice, for writing that story. This is, I repeat, not normal. NIH only generally cancels grants that have been peer reviewed and approved for reasons of fraud or scientific misconduct, yet one termination letter obtained by Science Magazine simply stated, quote, “The end of the pandemic provides cause to terminate COVID-related grant funds.” Why aren’t we hearing more about this, particularly for members of Congress whose universities are the ones that are being cut? 

Kenen: I mean, the one Republican we heard at the very beginning was [Sen.] Katie Britt because the University of Alabama is a big, excellent, and well-respected national medical and science center, and they were targeted for a lot of cuts. She’s the only Republican, really, and she got quiet. I mean, she raised her voice very loud and clear. We may go into a situation — and everybody sort of knows this is how Washington sometimes works — where individual universities will end up negotiating with NIH over their funds and that— 

Rovner: Columbia. Cough, cough. 

Kenen: Right. And Alabama may come out great and Columbia might not, or many other leading research institutions. But these job cuts affect people in every congressional district across the country. And the funding cuts affect every congressional district across the country. So it’s not just their constitutional responsibilities. It’s also, like, their constituents are affected, and we’re not hearing it. 

Rovner: And as I point out for the millionth time, it’s not a coincidence that these things are located in every congressional district. Members of Congress, if not the ones who are currently in office then their predecessors, lobbied and worked to get these funds to their states and to their district. And yet the silence is deafening. 

Ollstein: To state the obvious, one, covid is not over. People are still contracting it. People are still dying from it. But not only that, a lot of this research was about preparing for the inevitable next pandemic that we know is coming at some point and to not be caught as unawares as we were this past time, to be more prepared, to have better tools so that there don’t have to be widespread lockdowns, things can remain open because we have more effective prevention and treatment efforts. And that’s what’s being defunded here. 

Kenen: The other thing is that long covid is in fact a chronic disease and even though it’s caused by an infectious disease, a virus. But people have long covid but it is a chronic disease, and HHS says that’s their priority, chronic disease, but they’re not including long covid. And there’s also more and more. When we think of long covid, we think of brain fog and being short of breath and tired and unable to function. There’s increasing evidence or conversation in the medical world about other problems people have long-term that probably stem from covid infections or multiple covid infections. So this is affecting millions of Americans as a chronic disease that is not well understood, and we’ve just basically said, That one doesn’t count, or: We’re not going to pay attention to that one. We’re going to, you know, we’re looking at diabetes. Yeah, we need to look at diabetes. That’s one of the things that Kennedy has bipartisan support. This country does not eat well. I wrote about this about a week ago. But what he can and can’t do, because he can’t wave a magic wand and have us all eating well. But it’s very selective in how we’re defining both the causes of diseases and what diseases we’re prioritizing. We basically just shrunk addiction. 

Goldman: In the press release announcing the reorganization this morning, there was a line talking about how the HHS is going to create this new Administration for a Healthy America to investigate chronic disease and to make sure that we have, I think it was, wholesome food, clean water, and no environmental toxins, in order to prevent chronic disease. And those are the only three things that it mentions that lead to chronic disease. 

Rovner: And none of which are under HHS’ purview. 

Goldman: Right, right. Yeah. 

Rovner: With the exception of— 

Goldman: There are things that HHS does in that space. But yeah, we’re being very selective about what constitutes a chronic disease and what causes a chronic disease. If you’re trying to actually solve a problem, maybe you should be more expansive. 

Kenen: So HHS has some authority over food, not significant authority of it, but it is shared with the USDA [U.S. Department of Agriculture]. Like school lunches are USDA, the nutritional guidelines are shared between USDA and HHS, things like that. So yeah, it has some control about, over food but not entirely control over food. 

And then EPA [Environmental Protection Agency], which has also been completely reoriented to be a pro-fossil-fuel agency, is in charge of clean water and the environmental contaminants. That’s not an HHS bailiwick. And Kennedy is not aligned with other elements of the administration on environmental issues. And also genetics, right? Genetics is also, you know, who knows? That’s NIH? But who knows what’s going to happen to the National Cancer Institute and other genetic research at NIH? We don’t know. 

Rovner: Yes. Clearly much to be determined. Well, speaking of members of Congress whose states and districts are losing federal funds, federal aid is also being cut by the CDC. In a story first reported by NBC News, CDC is reportedly clawing back more than $11 billion in covid-related grants. Among other things, that’s impacting funding that was being used in Texas to fight the ongoing measles outbreak. How exactly does clawing back this money from state and local public health agencies make America healthy again? 

Goldman: That’s a great question, and I’m curious to see how it plays out. I don’t have the answer. 

Rovner: And it’s not just domestic spending. The fate of PEPFAR [the President’s Emergency Plan for AIDS Relief], the international AIDS/HIV program that’s credited with saving more than 20 million lives, remains in question. And The New York Times has gotten hold of a spreadsheet including more global health cuts, including those for projects to fight malaria and to pull the U.S. out of Gavi. That’s the global vaccine alliance that’s helped vaccinate more than 1.1 billion children in 78 countries. Wasn’t there a court order stopping all of these cuts? 

Ollstein: So there was for some USAID [U.S. Agency for International Development] work, but not all of these things fall under that umbrella. And that is still an ongoing saga that has flipped back and forth depending on various rulings. But I think it’s worth pointing out, as always, that infectious diseases don’t respect international borders, and any pullback on efforts to fight various things abroad inevitably will impact Americans as well. 

Rovner: Yeah. I mean, we’ve seen these measles cases obviously in Texas, but now we’re getting measles cases in other parts of the country, and many of them are people coming from other countries. We had somebody come through Washington, D.C.’s Union Station with measles, and we’ve had all of these alerts. I mean, this is what happens when you don’t try and work with infectious diseases where they are, then they spread. That’s kind of the nature of infectious disease. 

Well, at the same time, HHS Secretary RFK Jr. is putting his Make America Healthy Again agenda into practice in smaller ways as well. First up, remember that study that Kennedy promised again to look into any links between childhood vaccines and autism? It will reportedly be led by a vaccine skeptic who was disciplined by the Maryland Board of Physicians for practicing medicine without a license and who has pushed the repeatedly debunked assertion that autism can be caused by the preservative thimerosal, which used to be used in childhood vaccines but has long since been discontinued. One autism group referred to the person who’s going to be running this study as, quote, “a known conspiracy theorist and quack.” Sen. [Bill] Cassidy seemed to promise us that this wasn’t going to happen. 

Kenen: Well, we think that Sen. Cassidy was promised it wouldn’t happen, and it’s all happening. And in fact, when a recent hearing, he was very outspoken that there’s no need to research the autism link, because it’s been researched over and over and over and over and over again and there’s a lot of reputable scientific evidence establishing that vaccination does not cause autism. We don’t know what causes autism, so— 

Rovner: But we know it’s not thimerosal. 

Kenen: Right, which has been removed from many vaccines, in fact, and autism rates went up. So Cassidy has not come out and said, Yeah, I’m the guy who pulled the plug on Weldon. But it’s sort of obvious that he had, at least was, a role in. It is widely understood in Washington that he and a few other Republicans, [Sens. Lisa] Murkowski and [Susan] Collins, I believe — I think Murkowski said it in public — said that the CDC could not go down that route. 

Rovner: Well, I would like to be inadvertently invited to the Signal chat between Secretary Kennedy and Sen. Cassidy. I would very much wish to see that conversation. 

Meanwhile, in Texas, where HHS just confiscated public health funding, as we said, a hospital in Lubbock says it’s now treating children with liver damage from too much vitamin A, which Secretary Kennedy recommended as a way to prevent and or treat measles. Which it doesn’t, by the way. But that points to, that some of these — I hesitate of how to describe these people who are “making America healthy again.” But some of the things that they point to can be actively dangerous, not just not helpful. 

Goldman: Yeah. And I think it also shows how much messaging from the top matters, right? People are listening to what Secretary Kennedy says, which makes sense because he’s the secretary of health and human services. But if he’s pedaling misinformation or disinformation, that can have real harmful effects on people. 

Kenen: And his messages are being amplified even if some people are not, their parents, who aren’t maybe directly tuned in to what Kennedy personally is saying, but they follow various influencers on health who are then echoing what Kennedy’s saying about vitamin A. Yeah, we all need vitamin A in our diet. It’s something, part of healthy nutrition. But this supplement’s unnecessary, or excess supplements, vitamin A or cod liver oil or other things that can make them sick, including liver damage. And that’s what we’re seeing now. Vitamin A does have a place in measles under very specific circumstances, under medical supervision in individual cases. But no, people should not be going to the drugstore and pouring huge numbers of tablets of vitamin C down their children’s throat. It’s dangerous. 

Rovner: And actually the head of communications at the CDC not only quit his job this week but wrote a rather impassioned op-ed in The Washington Post, which I will post in our show notes, talking about he feels like he cannot work for an agency that is not giving advice that is based in science and that that’s what he feels right now. Again, that’s before we get a new head of the CDC. Well, MAHA is apparently spreading to the states as well. West Virginia Republican Gov. Patrick Morrisey this week signed a bill to ban most artificial food coloring and two preservatives in all foods sold in the state starting in 2028. Nearly half the rest of the states are considering similar types of bans. But unless most of those other states follow, companies aren’t going to remake their products just for West Virginia, right? 

Kenen: West Virginia is not big enough, but they sometimes do remake their products for California, which is big. The whole food additive issue is, traditionally the food manufacturers have had a lot of control over deciding what’s safe. It’s the industry that has decided. Kennedy has some support across the board and saying that’s too loose and we should look at some of these additives that have not been examined. There are others, including some preservatives, that have been studied and that are safe. Some preservatives have not been studied and should be studied. There are others that have been studied and are safe and they keep food from going rotten or they can prevent foodborne disease outbreaks. Something that does make our food healthy, we probably want to keep them in there. So, and are there some that— 

Rovner: I think people get mixed up between the dyes and the preservatives. Dyes are just to make things look more attractive. The preservatives were put there for a reason. 

Kenen: Right. And there’s some healthy ways of making dyes, too, if you need your food to be red. There’s berry abstracts instead of chemical extracts. So things get overly simplified in a way that does not end up necessarily promoting health across the board. 

Rovner: Well, not all of the news is coming from the Trump administration. The Supreme Court next week will hear a case out of South Carolina about whether Medicaid recipients can sue to enforce their right to get care from any qualified health care providers. But this is really another case about Planned Parenthood, right, Alice? 

Ollstein: Yep. If South Carolina gets the green light to kick Planned Parenthood out of its Medicaid program, which is really what is at the heart of this case, even though it’s sort of about whether beneficiaries can sue if their rights are denied. A right isn’t a right if you can’t enforce it, so it’s expected that a ruling in that direction would cause a stampede of other conservative states to do the same, to exclude Planned Parenthood from their Medicaid programs. Many have tried already, and that’s gone around and around in the courts for a while, and so this is really the big showdown at the high court to really decide this. 

And as I’ve been writing about, this is just one of many prongs of the right’s bigger strategy to defund Planned Parenthood. So there are efforts at the federal level. There are efforts at the state level. There are efforts in the courts. They are pushing executive actions on that front. We can talk. There was some news on Title X this week. 

Rovner: That was my next question. Go ahead. 

Ollstein: Some potential news. 

Rovner: What’s happening with Title X? 

Ollstein: Yeah. So HHS told us when we inquired that nothing’s final yet, but they’re reviewing tens of millions of Title X federal family planning grants that currently go to some Planned Parenthood affiliates to provide subsidized contraception, STI [sexually transmitted infection] screenings, various non-abortion services. And so they are reviewing those grants now. They are supposed to be going out next week, so we’ll have to see what happens there. There was some sort of back-and-forth in the reporting about whether they’re going to be cut or not. 

Rovner: What surprises me about the Title X grant, and there has been, there have been efforts, as you point out, going back to the 1980s to kick Planned Parenthood out of the Title X program. That’s separate from kicking Planned Parenthood out of Medicaid, which is where Planned Parenthood gets a lot more money. 

But the first Trump administration did kick Planned Parenthood out of Title X, and they went through the regulatory process to do it. And then the Biden administration went through the regulatory process to rescind the Trump administration regulations that kicked them out. Now it looks like the Trump administration thinks that it can just stop it without going through the regulatory process, right? 

Ollstein: That’s right. So not only are they going around Congress, which approves Title X funding every year, they are also going around their own rulemaking and just going for it. Although, again, it has not been finally announced whether or not there will be cuts. They’re just reviewing these grants. 

Rovner: But I repeat for those in the back, this is not normal. It’s not how these things are supposed to work it. 

Kenen: It’s normal now, Julie. 

Rovner: Yeah, clearly it’s becoming normal. Well, finally this week, another case of a woman arrested for a poor pregnancy outcome. This happened in Georgia where the woman suffered a natural miscarriage, not an abortion, which was confirmed by the medical examiner, but has been arrested on charges of improperly disposing of the fetal remains. Alice, this is turning into a trend, right? 

Ollstein: Yes. And it’s important for people to remember that this was happening before Dobbs. This was happening when Roe v. Wade was still in place. This has happened since then in states where abortion is legal. Some prosecutors are finding other ways to charge people. Whether it’s related to, yeah, the disposal of the fetus, whether it’s related to substance abuse, substance use during pregnancy, even sometimes the use of substances that are actually legal, but people have been charged, arrested for using them during pregnancy. So yes, it’s important to remember that even if there’s not a quote-unquote “abortion ban” on the books, there are still efforts underway in many places to criminalize pregnancy loss however it happens, naturally or via some abortifacient method. 

Rovner: Well, something else we’ll be keeping an eye on. All right, that’s as much news as we have time for this week. Now, we will play my interview with KFF’s Larry Levitt. Then we’ll come back and do our extra credits. 

So, last Sunday was the 15th anniversary of President Barack Obama’s signing of the original Affordable Care Act. And before you ask, yes, I was there in the White House East Room that day. Anyway, to discuss what the law has meant to the U.S. health system over the last decade and a half and what its future might be, I am so pleased to welcome back to the podcast my KFF colleague Larry Levitt, executive vice president for health policy. 

Larry, thanks for joining us again. 

Larry Levitt: Oh, thanks for having me. 

Rovner: So, [then-House Speaker] Nancy Pelosi was mercilessly derided when she said that once the American people learned exactly what was in the ACA, they would come to like it. But that’s exactly what’s happened, right? 

Levitt: It is. Yes. I think people took her comments so out of context, but the ACA was incredibly controversial and divisive when it was being debated. Frankly, after a pass, the ACA became pretty unpopular. If you go back to 2014, just before the main provisions of the ACA were being implemented, there was all this controversy over the individual mandate, over people’s plans being canceled because they didn’t comply with the ACA’s rules. And then, of course, healthcare.gov, the website, didn’t work. So the ACA was very underwater in public opinion. And even after it first went into effect and people started getting coverage, that didn’t necessarily turn around immediately, there was still a lot of divisiveness over the law. 

What changed is, No. 1, over time, more and more people got covered, people with preexisting conditions, people who couldn’t afford health insurance, people who turned 26 or could stay on their parents’ plans until 26 and then could enroll in the ACA or Medicaid after turning 26. All these people got coverage and started to see the benefits of the law. The other thing that happened was in 2017, Republicans tried unsuccessfully to repeal and replace the ACA, and people really realized what they could be missing if the law went away. 

Rovner: So what’s turned out to be the biggest change to the health care system as a result of the ACA? And is it what you originally thought it would be? 

Levitt: Well, yeah, in this case it was not a surprise, I think. The biggest change was the number of people getting covered and a big decrease in the number of people uninsured. We have been at the lowest rate of uninsurance ever recently due to the ACA and some of the enhancements, which we’ll probably talk about. And that was what the law was intended to do, was to get more people covered. And I think you’d have to call that a success, in retrospect. 

Rovner: I will say I was surprised by how much Medicaid dominated the increased coverage. I know now it’s sort of balanced out because of reductions in premiums for private coverage, I think in large part. But I think during the 2017 fight to undo the ACA, that was the first time since I’ve been covering Medicaid that I think people really realized how big and how important Medicaid is to the health care system. 

Levitt: No, that’s right. I mean the ACA marketplace, healthcare.gov, the individual mandate, preexisting condition protections, I mean, those are the things that got a lot of the public attention. But in fact, yeah, in the early years of the ACA, I mean really up until just the last couple years, the Medicaid expansion in the ACA was really the engine of coverage. And that’s not what a lot of people expected. In fact, Congressional Budget Office in their original projections kind of got that wrong, too. 

Rovner: So what was the biggest disappointment about something the ACA was supposed to do but didn’t do or didn’t do very well? 

Levitt: Yeah, I mean, I would have to point to health care costs as the biggest disappointment. The ACA really wasn’t intended to address health care costs head-on. And that was both a policy judgment but also a political decision. If you go back to the debate over the Clinton health plan in the early ’90s, which failed spectacularly — you and I were both there — it addressed health care costs aggressively, took on every segment of the health care industry, and died under that political weight. The political judgment of Obama and Democrats in Congress with the ACA was to not take on those vested health care interests and not really address health care costs head-on. That’s what enabled it to get passed. But it sort of lacked teeth in that regard. There were some things in the ACA like expansion of ACOs, accountable care organizations, which maybe had some promise but frankly have not done a whole lot. 

Rovner: And of course, Congress undoing what teeth there were in the ensuing years probably didn’t help very much, either. 

Levitt: No. I mean there was this provision in the ACA called the Cadillac plan tax, right? The idea was to tax so-called Cadillac health plans, very generous health plans. That probably would’ve had an effect. I’m not sure it would’ve done what people intended for it to do. I mean, I think it would’ve actually shifted costs to workers and caused deductibles to rise even higher. But no one but economists liked that Cadillac plan tax, and it was repealed. 

Rovner: So, as you mentioned, you and I are both also veterans of the 1993, 1994 failed effort by President Bill Clinton to overhaul the nation’s health care system, which, like the fight over the ACA, featured large-scale, deliberate mis- and disinformation by opponents about what a major piece of health legislation could do. In fact, and I have done lots of stories on this, scare tactics about the possible impact of providing universal health insurance coverage date back to the early 1900s and have been a feature of every single major health care debate since then. What did we learn from the ACA debate about combating this kind of deliberate misinformation? 

Levitt: Yeah, you’re so right about the disinformation, and I was actually looking yesterday — we have a timeline of health policy over the decades in our KFF headquarters in San Francisco, and we have an ad up there from the debate over the Truman health plan. You and I were not there for that debate. 

Rovner: Thank you. 

Levitt: And the AMA [American Medical Association] opposed that as socialized medicine and ran these ads featuring robots who were going to be your doctor if the Truman plan passed. So this is certainly nothing new. And we saw it in the ACA with death panels, right? I mean, which just spread like wildfire through the media and over social media. I would kind of hope we learned some lessons from the ACA. I’m not sure we have. And I kind of worry that with declining trust in institutions, particularly government institutions, I just wonder whether we’ll get back to a place where, yeah, we’ll disagree about policy. There will be spin, there will be scare tactics, but at least there’s some trusted source of facts and data that we can rely on, and I’m not so hopeful there. 

Rovner: Somebody asked former [HHS] Secretary Kathleen Sebelius at a 15th-anniversary event what she regretted most about not having in the ACA, and she said, With all the talk of our actually taking over the health care system, we should have just taken over the health care system, since that’s what everybody was accusing it of. It might’ve worked better. 

Levitt: Yeah, there is — we could have a whole other session on “Medicare for All” and single payer and the pros and cons of that. But one thing I think we did learn from the ACA, that complexity is just a huge problem. Even what’s supposed to be the simplest part of our health care system now, Medicare, has become incredibly complex with Part A and Part B and Part C and Part D. Seniors kind of scratch their heads trying to figure out what to do, and the ACA even more so. 

And I think back to your original question, part of what made the ACA so hard for people to grasp is there was not one single, Oh, I’m going to sign up for the ACA. There were so many pieces of it. And over time, I’m not even sure people identify those pieces with the ACA anymore. 

Rovner: Yeah. Oh, no, I am surprised at how many younger people have no idea of what the insurance market was like before the ACA and how many people were simply redlined out of getting coverage. 

Levitt: Right. No. I mean, once you fix those problems, then people don’t see them anymore. 

Rovner: So let’s look forward quickly. It seemed at least for a while after the Republicans failed in 2017 to repeal and replace the law that efforts to undo it were finally over. But while this administration isn’t saying directly that they want to end it, they do have some big targets for undoing big pieces of it. What are some of those and what are the likelihood of them happening? 

Levitt: Yeah, in some ways we have an ACA repeal-and-replace debate going on right now, just not in name. And there are really kind of two big pieces on the table. One, of course, is potential cuts to Medicaid. The House has passed a budget resolution calling for $880 billion in cuts, by the Energy and Commerce Committee, which has jurisdiction over Medicaid. The vast majority of those cuts would have to be in Medicaid. The math is simply inescapable. And a big target on the table is that expansion of Medicaid that was in the ACA. 

And interestingly, you’re even hearing Republicans on the Hill talking about repealing the enhanced federal matching payments for the ACA Medicaid expansion and saying: Well, that’s not Medicaid cuts. That’s Obamacare. That’s not Medicaid. But 20 million people are covered under that Medicaid expansion. So it would lead to the biggest increase in the number of people uninsured we’ve ever had, if that gets repealed. 

The other issue really has not gotten a lot of attention yet this year, which is the extra premium assistance that was passed under [President Joe] Biden and by Democrats in Congress. And that’s led to a dramatic increase in ACA marketplace enrollment. ACA enrollment has more than doubled to 24 million since 2020. Those subsidies expire at the end of this year. So if Congress does nothing, people would be faced with very big out-of-pocket premium increases. And I suspect it’s going to get more attention as we get closer to the end of the year, but so far there hasn’t been a big debate over it yet. 

Rovner: Well, we’ll continue to talk about it. Larry Levitt, thank you so much. 

Levitt: Oh, thanks. Great conversation. 

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

Kenen: There’s a piece in The Atlantic this week called “America Is Done Pretending About Meat,” by Yasmin Tayag, and it’s basically saying that half of the people who said they were vegan or vegetarian were lying and that meat is very much back in fashion. That the new pejorative term — some of us may remember from 20 years or so ago, the “quiche eaters” —now it’s the “soy boy.” And that one of the new “in” foods, and I think this is the first for the podcast to use the phrase, raw beef testicles. So when we’re talking about political red meat, it’s not just political red meat. America is, we’re eating a lot more meat than we said we did, and we’re no longer saying that we’re not eating it. 

Rovner: Real red meat for the masses. 

Ollstein: For what it’s worth, “soy boy” has been a slur since the Obama administration. 

Kenen: Well, it’s just new to me. Thank you. I welcome the— 

Ollstein: I unfortunately have been in the online fever swamps where people say things like that. 

Kenen: Thank you, Alice. Now I know. 

Rovner: Maya, why don’t you go next? 

Goldman: My extra credit is a KFF Health News article by Rachana Pradhan and Aneri Pattani called “‘I Am Going Through Hell’: Job Loss, Mental Health, and the Fate of Federal Workers.” And I think it’s just worth remembering that there are real consequences, real mental health consequences to mass upheaval at the scale of what’s going on in the federal government right now with so many people losing their jobs and just not sure if their jobs are stable, especially in light of this morning’s news about HHS reorganizations. But also I think this article does a really good job of highlighting how this chaos and instability is only going to exacerbate already ongoing mental health crises that some of these workers that have been laid off were trying to help solve. And so it’s just this cycle that keeps running through. It’s worth remembering. 

Rovner: The chaos is the point. Alice. 

Ollstein: So, I have a piece from the New York Times Wirecutter section called “23andMe Just Filed for Bankruptcy. You Should Delete Your Data Now.” And it’s what it says. The company that millions and millions of people have sent samples of their DNA to over the years to find out what percent European they are and all this stuff and their propensity for various inherited diseases, that company is going bankrupt, and there is the expectation that it will be sold off for parts, including people’s very sensitive DNA. And the article points out that because they are not a health care provider, they are not subject to HIPAA [Health Insurance Portability and Accountability Act]. And so many elected officials and privacy advocates are recommending that people, very quickly, if they have given their DNA to this company, go and delete their information now before it gets sold off to who knows who. 

Rovner: And for who knows what reason. My extra credit this week is something I really did think at first was from The Onion. It’s actually from CNN, and it’s called “State Lawmakers Are Looking to Ban Non-Existent ‘Chemtrails.’ It Could Have Real-Life Side Effects,” by Ramishah Maruf and Brandon Miller, who’s a CNN meteorologist. It seems that several states are moving to ban those white lines the jets leave behind them, on the theory that they are full of toxic chemicals and/or intended to manipulate the weather. In fact, they’re mostly just water vapor. They’re called contrails because the con is for condensation. But these laws could outlaw some new types of technologies that are aimed at addressing things like climate change. Clearly we need to teach more science along with more civics. 

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

Goldman: I am on X and Bluesky. If you search Maya Goldman, you’ll find me. And also increasingly on LinkedIn. Find me there. 

Rovner: Hearing that a lot. Alice. 

Ollstein: I am on X, @AliceOllstein, and Bluesky, @alicemiranda. 

Rovner: Joanne. 

Kenen: I’m mostly at Bluesky, and I’m also using LinkedIn a lot. @joannekenen at Bluesky. LinkedIn is reverberating more. 

Rovner: All right, we’ll be back in your feed next week with still more breaking news. Until then, be healthy. 

Credits Francis Ying Audio producer Emmarie Huetteman Editor

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HHS announces dramatic restructuring to Make America Healthy Again.

In the wooded highlands of northern Arkansas, where small towns have few dentists, water officials who serve more than 20,000 people have for more than a decade openly defied state law by refusing to add fluoride to the drinking water.

For its refusal, the Ozark Mountain Regional Public Water Authority has received hundreds of state fines amounting to about $130,000, which are stuffed in a cardboard box and left unpaid, said Andy Anderson, who is opposed to fluoridation and has led the water system for nearly two decades.

This Ozark region is among hundreds of rural American communities that face a one-two punch to oral health: a dire shortage of dentists and a lack of fluoridated drinking water, which is widely viewed among dentists as one of the most effective tools to prevent tooth decay. But as the anti-fluoride movement builds unprecedented momentum, it may turn out that the Ozarks were not behind the times after all.

“We will eventually win,” Anderson said. “We will be vindicated.”

Fluoride, a naturally occurring mineral, keeps teeth strong when added to drinking water, according to the Centers for Disease Control and Prevention and the American Dental Association. But the anti-fluoride movement has been energized since a government report last summer found a possible link between lower IQ in children and consuming amounts of fluoride that are higher than what is recommended in American drinking water. Dozens of communities have decided to stop fluoridating in recent months, and state officials in Florida and Texas have urged their water systems to do the same. Utah is poised to become the first state to ban it in tap water.

Health and Human Services Secretary Robert F. Kennedy Jr., who has long espoused fringe health theories, has called fluoride an “industrial waste” and “dangerous neurotoxin” and said the Trump administration will recommend it be removed from all public drinking water.

Separately, Republican efforts to extend tax cuts and shrink federal spending may squeeze Medicaid, which could deepen existing shortages of dentists in rural areas where many residents depend on the federal insurance program for whatever dental care they can find.

Dental experts warn that the simultaneous erosion of Medicaid and fluoridation could exacerbate a crisis of rural oral health and reverse decades of progress against tooth decay, particularly for children and those who rarely see a dentist.

“If you have folks with little access to professional care and no access to water fluoridation,” said Steven Levy, a dentist and leading fluoride researcher at the University of Iowa, “then they are missing two of the big pillars of how to keep healthy for a lifetime.”

Many already are.

Overlapping ‘Dental Deserts’ and Fluoride-Free Zones

Nearly 25 million Americans live in areas without enough dentists — more than twice as many as prior estimates by the federal government — according to a recent study from Harvard University that measured U.S. “dental deserts” with more depth and precision than before.

Hawazin Elani, a Harvard dentist and epidemiologist who co-authored the study, found that many shortage areas are rural and poor, and depend heavily on Medicaid. But many dentists do not accept Medicaid because payments can be low, Elani said.

The ADA has estimated that only a third of dentists treat patients on Medicaid.

“I suspect this situation is much worse for Medicaid beneficiaries,” Elani said. “If you have Medicaid and your nearest dentists do not accept it, then you will likely have to go to the third, or fourth, or the fifth.”

The Harvard study identified over 780 counties where more than half of the residents live in a shortage area. Of those counties, at least 230 also have mostly or completely unfluoridated public drinking water, according to a KFF analysis of fluoride data published by the CDC. That means people in these areas who can’t find a dentist also do not get protection for their teeth from their tap water.

The KFF Health News analysis does not cover the entire nation because it does not include private wells and 13 states do not submit fluoride data to the CDC. But among those that do, most counties with a shortage of dentists and unfluoridated water are in the south-central U.S., in a cluster that stretches from Texas to the Florida Panhandle and up into Kansas, Missouri, and Oklahoma.

In the center of that cluster is the Ozark Mountain Regional Public Water Authority, which serves the Arkansas counties of Boone, Marion, Newton, and Searcy. It has refused to add fluoride ever since Arkansas enacted a statewide mandate in 2011. After weekly fines began in 2016, the water system unsuccessfully challenged the fluoride mandate in state court, then lost again on appeal.

Anderson, who has chaired the water system’s board since 2007, said he would like to challenge the fluoride mandate in court again and would argue the case himself if necessary. In a phone interview, Anderson said he believes that fluoride can hamper the brain and body to the point of making people “get fat and lazy.”

“So if you go out in the streets these days, walk down the streets, you’ll see lots of fat people wearing their pajamas out in public,” he said.

Nearby in the tiny, no-stoplight community of Leslie, Arkansas, which gets water from the Ozark system, the only dentist in town operates out of a one-man clinic tucked in the back of an antique store. Hand-painted lettering on the store window advertises a “pretty good dentist.”

James Flanagin, a third-generation dentist who opened this clinic three years ago, said he was drawn to Leslie by the quaint charms and friendly smiles of small-town life. But those same smiles also reveal the unmistakable consequences of refusing to fluoridate, he said.

“There is no doubt that there is more dental decay here than there would otherwise be,” he said. “You are going to have more decay if your water is not fluoridated. That’s just a fact.”

Fluoride Seen as a Great Public Health Achievement

Fluoride was first added to public water in an American city in 1945 and spread to half of the U.S. population by 1980, according to the CDC. Because of “the dramatic decline” in cavities that followed, in 1999 the CDC dubbed fluoridation as one of 10 great public health achievements of the 20th century.

Currently more than 70% of the U.S. population on public water systems get fluoridated water, with a recommended concentration of 0.7 milligrams per liter, or about three drops in a 55-gallon barrel, according to the CDC.

Fluoride is also present in modern toothpaste, mouthwash, dental varnish, and some food and drinks — like raisins, potatoes, oatmeal, coffee, and black tea. But several dental experts said these products do not reliably reach as many low-income families as drinking water, which has an additional benefit over toothpaste of strengthening children’s teeth from within as they grow.

Two recent polls have found that the largest share of Americans support fluoridation, but a sizable minority does not. Polls from Axios/Ipsos and AP-NORC found that 48% and 40% of respondents wanted to keep fluoride in public water supplies, while 29% and 26% supported its removal.

Chelsea Fosse, an expert on oral health policy at the American Academy of Pediatric Dentistry, said she worried that misguided fears of fluoride would cause many people to stop using fluoridated toothpaste and varnish just as Medicaid cuts made it harder to see a dentist.

The combination, she said, could be “devastating.”

“It will be visibly apparent what this does to the prevalence of tooth decay,” Fosse said. “If we get rid of water fluoridation, if we make Medicaid cuts, and if we don’t support providers in locating and serving the highest-need populations, I truly don’t know what we will do.”

Multiple peer-reviewed studies have shown what ending water fluoridation could look like. In the past few years, studies of cities in Alaska and Canada have shown that communities that stopped fluoridation saw significant increases in children’s cavities when compared with similar cities that did not. A 2024 study from Israel reported a “two-fold increase” in dental treatments for kids within five years after the country stopped fluoridating in 2014.

Despite the benefits of fluoridation, it has been fiercely opposed by some since its inception, said Catherine Hayes, a Harvard dental expert who advises the American Dental Association on fluoride and has studied its use for three decades.

Fluoridation was initially smeared as a communist plot against America, Hayes said, and then later fears arose of possible links to cancer, which were refuted through extensive scientific research. In the ’80s, hysteria fueled fears of fluoride causing AIDS, which was “ludicrous,” Hayes said.

More recently, the anti-fluoride movement seized on international research that suggests high levels of fluoride can hinder children’s brain development and has been boosted by high-profile legal and political victories.

Last August, a hotly debated report from the National Institutes of Health’s National Toxicology Program found “with moderate confidence” that exposure to levels of fluoride that are higher than what is present in American drinking water is associated with lower IQ in children. The report was based on an analysis of 74 studies conducted in other countries, most of which were considered “low quality” and involved exposure of at least 1.5 milligrams of fluoride per liter of water — or more than twice the U.S. recommendation — according to the program.

The following month, in a long-simmering lawsuit filed by fluoride opponents, a federal judge in California said the possible link between fluoride and lowered IQ was too risky to ignore, then ordered the federal Environmental Protection Agency to take nonspecified steps to lower that risk. The EPA started to appeal this ruling in the final days of the Biden administration, but the Trump administration could reverse course.

The EPA and Department of Justice declined to comment. The White House and Department of Health and Human Services did not respond to questions about fluoride.

Despite the National Toxicology Program’s report, Hayes said, no association has been shown to date between lowered IQ and the amount of fluoride actually present in most Americans’ water. The court ruling may prompt additional research conducted in the U.S., Hayes said, which she hoped would finally put the campaign against fluoride to rest.

“It’s one of the great mysteries of my career, what sustains it,” Hayes said. “What concerns me is that there’s some belief amongst some members of the public — and some of our policymakers — that there is some truth to this.”

Not all experts were so dismissive of the toxicology program’s report. Bruce Lanphear, a children’s health researcher at Simon Fraser University in British Columbia, published an editorial in January that said the findings should prompt health organizations “to reassess the risks and benefits of fluoride, particularly for pregnant women and infants.”

“The people who are proposing fluoridation need to now prove it’s safe,” Lanphear told NPR in January. “That’s what this study does. It shifts the burden of proof — or it should.”

Cities and States Rethink Fluoride

At least 14 states so far this year have considered or are considering bills that would lift fluoride mandates or prohibit fluoride in drinking water altogether. In February, Utah lawmakers passed the nation’s first ban, which Republican Gov. Spencer Cox told ABC4 Utah he intends to sign. And both Florida Surgeon General Joseph Ladapo and Texas Agriculture Commissioner Sid Miller have called for their respective states to end fluoridation.

“I don’t want Big Brother telling me what to do,” Miller told The Dallas Morning News in February. “Government has forced this on us for too long.”

Additionally, dozens of cities and counties have decided to stop fluoridation in the past six months — including at least 16 communities in Florida with a combined population of more than 1.6 million — according to news reports and the Fluoride Action Network, an anti-fluoride group.

Stuart Cooper, executive director of that group, said the movement’s unprecedented momentum would be further supercharged if Kennedy and the Trump administration follow through on a recommendation against fluoride.

Cooper predicted that most U.S. communities will have stopped fluoridating within years.

“I think what you are seeing in Florida, where every community is falling like dominoes, is going to now happen in the United States,” he said. “I think we’re seeing the absolute end of it.”

If Cooper’s prediction is right, Hayes said, widespread decay would be visible within years. Kids’ teeth will rot in their mouths, she said, even though “we know how to completely prevent it.”

“It’s unnecessary pain and suffering,” Hayes said. “If you go into any children’s hospital across this country, you’ll see a waiting list of kids to get into the operating room to get their teeth fixed because they have severe decay because they haven’t had access to either fluoridated water or other types of fluoride. Unfortunately, that’s just going to get worse.”

Methodology: How We Counted

This KFF Health News article identifies communities with an elevated risk of tooth decay by combining data on areas with dentist shortages and unfluoridated drinking water. Our analysis merged Harvard University research on dentist-shortage areas with large datasets on public water systems published by the U.S. Centers for Disease Control and Prevention.The Harvard research determined that nearly 25 million Americans live in dentist-shortage areas that span much of rural America. The CDC data details the populations served and fluoridation status of more than 38,000 public water systems in 37 states. We classified counties as having elevated risk of tooth decay if they met three criteria:More than half of the residents live in a dentist-shortage area identified by Harvard.The number of people receiving unfluoridated water from water systems based in that county amounts to more than half of the county’s population.The number of people receiving unfluoridated water from water systems based in that county amounts to at least half of the total population of all water systems based in that county, even if those systems reached beyond the county borders, which many do.

Our analysis identified approximately 230 counties that meet these criteria, meaning they have both a dire shortage of dentists and largely unfluoridated drinking water.

But this total is certainly an undercount. Thirteen states do not report water system data to the CDC, and the agency data does not include private wells, most of which are unfluoridated.

KFF Health News data editor Holly K. Hacker contributed to this article.

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

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