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.

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This story can be republished for free (details).

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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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.

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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