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.”

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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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