Speed, efficiency, and lower costs. Those are the traits artificial intelligence supporters celebrate. But the same qualities worry physicians who fear the technology could lead to insurance denials with humans left out of the loop.

With scant federal regulation, states are left to shape the rules on AI in health care. For residents in the Washington, D.C., metropolitan area, a divide is playing out on opposite sides of the Potomac River. Maryland and Virginia have taken very different approaches to regulating AI in health insurance.

���ϳԹ��� News correspondent Lauren Sausser joined WAMU’s Health Hub on April 15 to explain why where you live may determine how much of a role AI plays in your coverage.

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El gobierno federal no lleva un registro de cuántos niños han ingresado a este sistema como consecuencia de operativos de control migratorio, lo que dificulta saber con qué frecuencia ocurre.

En Oregon, hasta febrero, dos niños habían sido ubicados en hogares temporales luego de ser separados de sus padres en casos de detención migratoria, según Jake Sunderland, vocero del Departamento de Servicios Humanos del estado.

“Antes del otoño de 2025, esto nunca había ocurrido”, aseguró.

Hasta mediados de febrero, casi por el Servicio de Inmigración y Control de Aduanas (ICE, por sus siglas en inglés).

El récord de 73.000 personas detenidas en enero representó un comparado con el año anterior. Según una , hasta agosto de 2025, padres de 11.000 niños con ciudadanía estadounidense habían sido detenidos desde el inicio del mandato de Trump.

El medio NOTUS que por lo menos 32 niños de padres detenidos o deportados habían sido colocados en hogares temporales en siete estados.

Sandy Santana, director ejecutivo de Children’s Rights, una organización de defensa legal, dijo que sospechan que el número real es mucho mayor.

“Ese número nos parece realmente muy bajo”, dijo.

La separación de sus padres es profundamente traumática para los niños y suele provocar , incluido el trastorno de estrés postraumático. El estrés prolongado e intenso también puede causar infecciones más frecuentes en los niños y problemas en el desarrollo. Ese “estrés tóxico” también se asocia con daños en áreas del cerebro responsables del aprendizaje y la memoria, , una organización sin fines de lucro dedicada a la información en salud que incluye a ���ϳԹ��� News.

Durante el primer mandato de Trump, . y modificaron algunas leyes para permitir que tutores recibieran derechos parentales temporales en casos relacionados con migración. Ahora, tras el regreso de Trump al poder el año pasado, el aumento en los controles migratorios está impulsando una nueva ola de respuestas estatales.

En Nueva Jersey, legisladores están considerando un proyecto para modificar estatal que permite que los padres designen tutores temporales para casos de muerte o incapacidad. La nueva versión agregaría como otra razón válida la separación por control migratorio federal.

El año pasado, Nevada y California aprobaron leyes para proteger a las familias separadas por acciones de control migratorio. La ley de California, llamada Ley del Plan de Preparación Familiar (), permite que los padres designen tutores y compartan derechos de custodia, en lugar de que sus derechos se suspendan mientras están detenidos. Si son liberados y pueden reunirse con sus hijos, recuperan sus derechos parentales completos.

Existen importantes obstáculos legales para la reunificación familiar una vez que un niño entra bajo custodia estatal, explicó Juan Guzman, director del tribunal de menores y tutela en Alliance for Children’s Rights, una organización de defensa legal en Los Ángeles.

Si el niño es colocado en cuidado temporal y ni el padre ni la madre pueden participar en los procesos judiciales requeridos porque están detenidos o han sido deportados, es menos probable que puedan volver a reunirse con su hijo, afirmó Guzman.

Se estima que que son ciudadanos estadounidenses viven con un padre u otro familiar que no tiene estatus migratorio legal, según investigaciones de Brookings Institution, un centro de estudios en Washington, D.C. Dentro de ese grupo, 2,6 millones de niños tienen a ambos padres sin estatus legal.

Santana dijo que es probable que el número de casos de separación familiar aumente a medida que el gobierno de Trump avance con su campaña migratoria. Por lo tanto, más niños corren el riesgo de terminar en el sistema de cuidado temporal.

Las exigen que la agencia se esfuerce en facilitar la participación de los padres detenidos en los procedimientos de los tribunales de familia, de bienestar infantil o de tutela, pero Santana indicó que no está claro que el ICE esté cumpliendo con estas normas.

Los funcionarios de ICE no respondieron a las solicitudes de comentarios para este artículo.

Antes de que cambiara la ley de California, la única razón por la que un padre podía compartir derechos de custodia con otro tutor era si tenía una enfermedad terminal, contó Guzman.

Ahora, si los padres preparan un plan con anticipación y designan a alguien de confianza que pueda hacerse cargo de sus hijos si llegara a ser necesario, la agencia estatal de bienestar infantil puede iniciar el proceso para entregar a los niños a esa persona sin tener que abrir un caso formal de cuidado temporal, agregó.

Si bien el año pasado los legisladores de Nevada ampliaron una ley de tutela existente para incluir la aplicación de las leyes de inmigración, la medida exige a los padres dar el paso adicional de presentar documentación notariada ante la oficina del Secretario de Estado, señaló Cristian González-Pérez, abogado de Make the Road Nevada, una organización sin fines de lucro que brinda recursos a las comunidades inmigrantes.

González-Pérez señaló que algunos inmigrantes dudan en completar formularios gubernamentales por temor a que el ICE pueda acceder a esa información y los persiga. Él les asegura a los miembros de la comunidad que los formularios estatales son confidenciales y solo pueden ser consultados por hospitales y tribunales.

El gobierno de Trump ha tomado para acceder a información sensible a través de los Centros de Servicios de Medicare y Medicaid, el Servicio de Impuestos Internos (IRS), el Programa de Asistencia Nutricional Suplementaria (SNAP), el Departamento de Vivienda y Desarrollo Urbano y otras entidades.

González-Pérez y Guzmán consideran que muchos padres inmigrantes no conocen sus derechos. Designar un tutor temporal y crear un plan familiar es una forma de no sentirse impotentes, afirmó González-Pérez.

“La gente no quiere hablar de esa cuestión”, reflexionó Guzman. “Que un padre tenga que hablar con un niño sobre la posibilidad de separarse da miedo. No es algo que nadie quiera hacer”, concluyó.

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The federal government doesn’t track how many children have entered foster care because of immigration enforcement actions, leaving it unclear how often it happens. In Oregon, as of February two children had been placed in foster care after being separated from their parents in immigration detention cases, according to Jake Sunderland, a spokesperson for the Oregon Department of Human Services.

“Before fall 2025, this simply had never happened before,” Sunderland said.

As of mid-February, nearly by Immigration and Customs Enforcement. The record 73,000 people in detention in January represented an compared with one year before. According to , parents of 11,000 children who are U.S. citizens were detained from the beginning of Trump’s term through August.

The news outlet NOTUS that at least 32 children of detained or deported parents had been placed in foster care in seven states.

Sandy Santana, executive director of Children’s Rights, a legal advocacy organization, said he thinks the actual number is much higher.

“That, to us, seems really, really low,” he said.

Separation from a parent is deeply traumatic for children and can lead to , including post-traumatic stress disorder. Prolonged, intense stress can lead to more-frequent infections in children and developmental issues. That “toxic stress” is also associated with responsible for learning and memory, according to KFF.

, and amended existing laws during Trump’s first term to allow guardians to be granted temporary parental rights for immigration enforcement reasons. Now the enforcement surge that began after Trump returned to office last year has prompted a new wave of state responses.

In New Jersey, lawmakers are considering to amend a state law that allows parents to nominate standby, or temporary, guardians in the cases of death, incapacity, or debilitation. The bill would add separation due to federal immigration enforcement as another allowable reason.

Nevada and California passed laws last year to protect families separated by immigration enforcement actions. California’s law, called the , allows parents to nominate guardians and share custodial rights, instead of having them suspended, while they’re detained. They regain their full parental rights if they are released and are able to reunite with their children.

There are significant legal barriers to reunification once a child is placed in state custody, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles.

If a parent’s child is placed in foster care and the parent cannot participate in required court proceedings because they are in detention or have been deported, it’s less likely they will be able to reunite with their child, Guzman said.

are U.S. citizens who live with a parent or family member who does not have legal immigration status, according to research from the Brookings Institution, a Washington, D.C.-based think tank. Within that group, 2.6 million children have two parents lacking legal status.

Santana said he expects the number of family separation cases to grow as the Trump administration continues its immigration enforcement campaign, putting more children at risk of being placed in foster care.

the agency to make efforts to facilitate detained parents’ participation in family court, child welfare, or guardianship proceedings, but Santana said it’s uncertain whether ICE is complying with those rules.

ICE officials did not respond to requests for comment for this report.

Before the change in California’s law, the only way a parent could share custodial rights with another guardian was if the parent was terminally ill, Guzman said.

If parents create a preparedness plan and identify an individual to assume guardianship of their children, the state child welfare agency can begin the process of placing the children with that individual without opening a formal foster care case, he added.

While Nevada lawmakers expanded an existing guardianship law last year to include immigration enforcement, the measure requires the parents to take the additional step of filing notarized paperwork with the secretary of state’s office, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities.

Gonzalez-Perez said some immigrants are still hesitant to fill out government forms, out of fear that ICE might access their information and target them. He reassures community members that the state forms are secure and can be accessed only by hospitals and courts.

The Trump administration has taken through the Centers for Medicare & Medicaid Services, the IRS, the Supplemental Nutrition Assistance Program, the Department of Housing and Urban Development, and other entities.

Gonzalez-Perez and Guzman said that not enough immigrant parents know their rights. Nominating a temporary guardian and creating a plan for their families is one way they can prevent feelings of helplessness, Gonzalez-Perez said.

“Folks don’t want to talk about it, right?” Guzman said. “The parent having to speak to a child about the possibility of separation, it’s scary. It’s not something anybody wants to do.”

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“Se siente como si me estuviera asfixiando dentro de este albergue, atrapado sin salida”, dijo el hijo de Carlos cuando le pidieron describir cómo se sentía luego de meses en la instalación en el área de Houston, según contó uno de los abogados de los adolescentes. “Todos los días, la misma rutina. Todos los días, sintiéndome atrapado. Me hace sentir aterrado y sin esperanza”.

Durante llamadas diarias por video, Carlos, quien tenía estatus de protección temporal (TPS), les pedía a los hermanos que tuvieran paciencia, que confiaran en el proceso.

Funcionarios federales habían evaluado a Carlos antes de otorgarle la custodia y le dijeron que su caso estaba completo. Él creía que pronto estaría de nuevo con sus hijos, quienes, al igual que él, habían llegado a Estados Unidos huyendo de la violencia política en Venezuela.

Un oficial de inmigración llamó a Carlos un viernes y le pidió que fuera el lunes a una reunión en una oficina del ICE para hablar sobre la reunificación con sus hijos. Cuando llegó, los oficiales intentaron obligarlo a firmar documentos que dijo no entender. Cuando se negó, le quitaron la ropa, le confiscaron su identificación y sus pertenencias y lo encadenaron por el cuello, la cintura y las piernas.

“Me engañaron”, dijo Carlos en una llamada telefónica desde un centro de detención migratoria en El Paso, Texas, donde estuvo retenido durante varios meses. “Usaron a mis hijos para atraparme”, agregó.

Durante la cobertura de esta historia, ���ϳԹ��� News revisó documentos judiciales, habló con los abogados de inmigración de la familia, entrevistó a Carlos y revisó declaraciones de sus hijos, traducidas del español.

Carlos es un seudónimo que se ha usado a pedido de los abogados: les preocupa que hablar públicamente pueda poner en riesgo el caso o retrasar aún más la reunificación familiar.

Usar a los hijos para arrestar a los padres

Desde 2003, la Oficina de Reasentamiento de Refugiados del Departamento de Salud y Servicios Humanos (HHS) ha cuidado a niños migrantes menores de 18 años que llegan al país sin sus padres, a menudo huyendo de la violencia, el abuso o el tráfico humano. La oficina, que en febrero tenía más de 2.300 niños en albergues o con familias temporales en todo el país, se supone que debe liberarlos rápidamente con cuidadores evaluados, generalmente padres u otros familiares que ya viven en el país.

El Congreso asignó esta responsabilidad a la agencia de salud hace más de 20 años para priorizar el bienestar de los niños no acompañados y separar su cuidado de las prioridades de control migratorio.

Ahora, la segunda administración de Trump está usando a niños migrantes bajo custodia de la agencia para atraer a padres, como Carlos, tengan o no antecedentes penales.

Una investigación de ���ϳԹ��� News encontró que la oficina de reasentamiento, , coordina con el Departamento de Seguridad Nacional (DHS) el arresto de personas que buscan la custodia de niños migrantes.

Documentos de arrestos muestran que Investigaciones de Seguridad Nacional (HSI), la división de la agencia que normalmente se enfoca en el crimen organizado y en traficantes, entrevista a padres u otros cuidadores y luego los arresta si están en el país sin autorización legal.

Antes del regreso de Donald Trump a la Casa Blanca, la oficina de reasentamiento prohibía compartir datos y colaborar con las autoridades migratorias y no negaba la custodia de niños únicamente por el estatus migratorio de los cuidadores. el año pasado.

No está claro cuántos cuidadores han sido atraídos bajo falsos pretextos para ser arrestados. que indican que más de 100 fueron detenidos mientras intentaban sacar a sus hijos de la detención, pero ���ϳԹ��� News no pudo verificar de manera independiente esa cifra con agencias federales.

El HHS, el DHS y el Departamento de Justicia (DOJ) no han respondido a preguntas sobre arrestos de cuidadores que se les han remitido desde febrero.

Antes de dejar el DHS el mes pasado, la subsecretaria Tricia McLaughlin dijo que la administración protege a los niños de ser entregados a personas que no deberían cuidarlos. Andrew Nixon, vocero del HHS, remitió las preguntas relacionadas con la aplicación de leyes migratorias al DHS.

Al mismo tiempo, la oficina de reasentamiento que dificultan que los cuidadores obtengan la custodia de niños no acompañados. Estas incluyen reducir el tipo de documentos que se aceptan, exigir verificaciones de antecedentes con huellas dactilares para todos los adultos que vivan en el hogar y para otros cuidadores, y requerir citas en persona para verificar documentos de identidad, a veces con agentes del ICE presentes. Estos requisitos mantienen a los “niños seguros de traficantes y otras personas peligrosas”, dijo Nixon.

Hasta enero, la agencia había retenido a al menos 300 niños que ya habían sido ubicados con patrocinadores evaluados y había pedido a sus cuidadores que volvieran a solicitar la custodia, según el National Center for Youth Law y la Democracy Forward Foundation. Estos dos grupos presentaron calificando estas acciones como “una nueva forma silenciosa de separación familiar”.

Separación a la inversa

Dulce, una madre guatemalteca en Virginia, dijo que a su hijo de 8 años lo enviaron a un albergue del gobierno después de ser detenido durante una parada de tráfico el verano pasado, mientras visitaba a familiares en otro estado.

Al principio, Dulce esperaba recuperar a su hijo en pocos días: había cumplido con los requisitos de patrocinio del gobierno en 2024 y se había reunido con él tres semanas después de que el niño cruzara la frontera. Pero funcionarios de la agencia de reasentamiento le pidieron repetir todo el proceso y volver a presentar documentos, dijo Dulce. Tardó ocho meses en recuperarlo.

Dulce es un seudónimo utilizado a petición suya porque teme que hablar públicamente la ponga en riesgo de deportación.

En un momento, le pidieron que fuera a una entrevista en una oficina del ICE para mostrar su identificación como parte del proceso de reunificación con su hijo. Ella se negó por miedo a que la detuvieran, ya que no tiene estatus legal. Cree que agentes del ICE visitaron su casa en algún momento.

“Dejé de ir a mi casa”, dijo Dulce. “Viví con algunos de mis amigos por días”.

Aunque vivía a solo 45 minutos, a Dulce solo se le permitió visitar a su hijo dos veces al mes.

Hasta hace poco, la mayoría de los niños no acompañados llegaban a la custodia del gobierno luego de ser detenidos en la frontera. Pero los cruces fronterizos comenzaron a disminuir en 2024 y el número de personas que llegan a Estados Unidos ha caído de forma importante durante el segundo mandato del presidente Trump.

Ahora, cientos de niños han sido llevados a albergues del gobierno después de ser detenidos dentro del país, en general durante redadas migratorias o paradas de tráfico, según la demanda de los grupos defensores. Muchos ya vivían con familiares, incluidos tutores previamente evaluados por la agencia de reasentamiento.

Ya casi no hay liberaciones. Según la oficina de reasentamiento, en 2024 los niños bajo su custodia permanecían en albergues o en cuidado temporal por un promedio de un mes. En febrero, ese tiempo había aumentado a más de medio año.

Generalmente se libera a los niños solo después de que sus abogados presentan una demanda en un tribunal federal impugnando su detención como inconstitucional.

Las autoridades liberaron al hijo de Dulce en febrero después de que los abogados del niño presentaron una petición de este tipo. La mujer dijo que se siente aliviada de tenerlo de vuelta, pero sigue con miedo de que el ICE pueda llegar a su casa.

Inmigrantes en riesgo

Durante el primer mandato de Trump, su administración fue criticada por de niños que habían sido liberados de custodia. El presidente Joe Biden fue cuestionado por la forma en que su administración manejó el aumento de niños no acompañados, que alcanzó un pico en 2021 con alrededor de 22.000 bajo custodia de la oficina de reasentamiento.

Aunque la mayoría fueron recibidos por patrocinadores legítimos, algunos fueron entregados a personas que no habían pasado , lo que los puso en .

La administración Trump dice que está verificando y el Departamento de Justicia ha procesado de .

El 1 de marzo, la secretaria de Seguridad Nacional, Kristi Noem, quien a finales de mes, destacó un , incluida la oficina de reasentamiento, que, según el DHS, había localizado a 145.000 niños no acompañados que habían sido entregados a cuidadores durante el mandato de Biden.

Sin embargo, informes internos del HHS sobre esa iniciativa obtenidos por ���ϳԹ��� News muestran que casi 11.800 de esos niños migrantes y cerca de 500 de sus cuidadores habían sido arrestados hasta el 29 de enero. Solo 125 de esos niños y 55 de esos cuidadores fueron arrestados por presunta actividad criminal, lo que sugiere que la mayoría fue detenida por violaciones migratorias.

El HHS remitió preguntas sobre esas cifras al DHS, que no respondió a solicitudes de comentarios. Michelle Brané, quien fue funcionaria del DHS durante la administración Biden, dijo que las cifras muestran que la mayoría de los arrestos fueron para detener y deportar migrantes. Anteriormente, que la administración apuntó a padres y cuidadores que habían pagado para que los niños cruzaran la frontera, intentando presentar cargos de tráfico de personas contra ellos.

“Han abandonado esa estrategia en muchos sentidos y ahora van tras cualquiera abiertamente”, dijo Brané. “Estas cifras reflejan claramente que esto no se trata de seguridad pública ni de la seguridad de los niños”.

Caso en espera

Carlos salió de Venezuela en 2022 debido a amenazas de muerte y, como miles de otros que huían de ese país, recibió lo que se conoce como estatus de protección temporal durante la administración Biden. Esa protección fue para la mayoría de los venezolanos por el gobierno de Trump.

En enero de 2025, días antes de que Trump asumiera su segundo mandato, los hijos de Carlos cruzaron la frontera desde México hacia Estados Unidos, se entregaron a las autoridades fronterizas y fueron puestos de inmediato bajo custodia de la agencia de reasentamiento.

Carlos pasó meses enviando documentos para reunirse con ellos. Dijo que es su único padre, ya que la madre los abandonó cuando eran pequeños.

Funcionarios visitaron su casa dos veces y determinaron que era apto para cuidarlos, según documentos judiciales que solicitaban su liberación. Pasó pruebas de ADN que confirmaron que es el padre biológico, dijo uno de sus abogados. Sus documentos indican que no tiene “antecedentes penales”. En julio, a Carlos le dijeron que su caso de reunificación estaba completo y en proceso de aprobación. Pero luego, sin explicación, el caso fue puesto en espera.

Antes de que el ICE lo arrestara, Carlos dijo que manejaba 14 horas de ida y 14 de vuelta desde su casa para visitar a sus hijos. Solo podía verlos durante una hora. Cuando estaba detenido, dijo que hablaba con ellos aproximadamente cada dos semanas en llamadas breves y supervisadas.

Intenta mantenerse la esperanza, pero es difícil.

Según documentos redactados por oficiales del ICE durante su arresto y presentados en su caso judicial, Carlos fue detenido bajo una iniciativa llamada Operation Guardian Trace, que exige a los oficiales migratorios detener a posibles cuidadores si están en el país sin autorización legal y recomendar su deportación.

“Esta operación está diseñada para obligar a los padres a tomar una decisión imposible entre reunirse con sus hijos y buscar seguridad”, dijo una de las abogadas de Carlos, Chiqui Sanchez Kennedy, del Galveston-Houston Immigrant Representation Project, una organización sin fines de lucro que ayuda a inmigrantes de bajos recursos.

“Voy a esperar”

En marzo, un juez federal determinó que Carlos había sido detenido de manera ilegal y fue liberado bajo fianza.

Pero sus hijos aún enfrentan un futuro incierto. muestran que los albergues del gobierno a menudo carecen de suficientes recursos y trabajadores sociales dicen que estadías prolongadas en estos lugares pueden causar más trauma.

“No solo es malo, sino que cuanto más tiempo estás allí, peor se vuelve”, expresó Jonathan Beier, director asociado de investigación y evaluación del programa para niños no acompañados del Acacia Center for Justice, que coordina servicios legales para estos menores.

Los hijos de Carlos también podrían ser enviados de regreso al país del que huyeron. Debido a su detención, Carlos tendrá que repetir gran parte del proceso para reunirse con ellos, según una abogada de los niños, Alexa Sendukas, también del Galveston-Houston Immigrant Representation Project.

En declaraciones compartidas a través de Sendukas, la hija de Carlos dijo que ya no quiere estar con otras personas y pasa la mayor parte del tiempo en su habitación. Su hijo, ahora de 15 años, describió tener ataques de pánico y sentir que se está perdiendo la vida, ya sean las oportunidades con las que sueña — aprender inglés, estudiar ciencia — o ver baloncesto con su familia.

“Recuerdo cuando llegué por primera vez a este albergue; tenía mucha esperanza y fe en que pronto me reuniría con mi papá”, dijo.

La hija de Carlos pasó el día llorando en la cama cuando los hermanos se enteraron de que su padre había sido detenido. Durante días, no supieron dónde estaba. Ahora, temen que la única salida sea la adopción o el cuidado temporal.

“Tengo miedo”, dijo. “Voy a esperar a mi papá siempre”.

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“I feel like I’m suffocating inside this shelter, trapped with no way out,” Carlos’ son said, according to one of the teens’ attorneys, when asked to describe how he felt after months at the Houston-area facility. “Every day, the same routine. Every day, feeling stuck. It makes me feel hopeless and terrified.”

During daily video calls, Carlos, who had temporary protected status, urged the siblings to be patient, to trust the process. Federal officials had vetted Carlos before he could be granted custody and told him his case was complete. He believed he would soon be back with his children, who, like him, had sought refuge from political violence in Venezuela.  

An immigration officer called Carlos on a Friday and asked him to attend a meeting at an ICE office the following Monday to discuss reunification with his children. Once Carlos arrived, officers tried to force him to sign documents he said he didn’t understand. When he refused, they stripped off his clothes, seized his ID and belongings, and chained him by the neck, waist, and legs.

“They tricked me,” Carlos said in a phone call from an immigration detention center in El Paso, Texas, where he was held for several months. “They used my children to grab me,” he said.  

In reporting on the family’s story, ���ϳԹ��� News reviewed court documents, spoke with the family’s immigration attorneys, interviewed Carlos, and reviewed statements from his children, translated from Spanish. Carlos is a pseudonym, being used at the request of attorneys concerned that speaking out could jeopardize Carlos’ immigration case or further delay his reunion with his family.

Using Children to Arrest Parents

Since 2003, the Department of Health and Human Services’ Office of Refugee Resettlement has cared for immigrant children under 18 who arrive in the country without their parents, often fleeing violence, abuse, or trafficking. The office, which in February had more than 2,300 children in shelters or with foster families across the country, is supposed to promptly release them to vetted caregivers, typically parents or other family members already living in the country.

Congress placed this responsibility with the health agency over 20 years ago to prioritize the well-being of unaccompanied children and separate their care from immigration enforcement priorities.

Now the second Trump administration is using migrant children held by the resettlement office to lure their parents, such as Carlos, whether or not they have a criminal record. A ���ϳԹ��� News investigation found the resettlement office, , coordinates with the Department of Homeland Security to arrest people seeking custody of migrant children.

Arrest documents show Homeland Security Investigations, the arm of the agency that normally focuses on organized criminals and traffickers, will interview parents or other caregivers then arrest them if they are in the country illegally. Before Donald Trump returned to the White House, the resettlement office prohibited data sharing and collaboration with immigration enforcement, and it did not deny caregivers custody of children solely because of their immigration status. Those last year.

It’s unclear exactly how many caregivers have been baited into arrest. LAist indicating more than 100 have been arrested while trying to get their kids out of detention, but ���ϳԹ��� News could not independently verify that number with federal agencies.

Since February, the Department of Health and Human Services, Department of Homeland Security, and Justice Department have not responded to questions about caregiver arrests. Prior to leaving DHS last month, Assistant Secretary Tricia McLaughlin said the administration protects children from being released to people who shouldn’t care for them. Andrew Nixon, an HHS spokesperson, referred questions related to immigration enforcement to DHS.

At the same time, the resettlement office has that make it harder for caregivers to gain custody of unaccompanied children. These include narrowing the range of accepted documents, requiring fingerprint-based background checks for every adult in the home and backup caregivers, and requiring in-person appointments to verify identification documents, sometimes with ICE agents present. The requirements keep “children safe from traffickers and other bad, dangerous people,” Nixon said.

As of January, the agency had detained at least 300 children already placed with vetted sponsors and asked their caregivers to reapply, according to the National Center for Youth Law and the Democracy Forward Foundation. The advocacy groups filed calling these actions “a quieter, new form of family separation.” 

Reverse Separation

Dulce, a Guatemalan mother in Virginia, said her 8-year-old son was sent to a government shelter after he was detained during a traffic stop last summer while visiting family members in a different state.

At first, Dulce expected to get her son back within days — she had passed the government’s sponsorship requirements in 2024 and was reunited with him three weeks after he first crossed the border. But resettlement agency officials asked her to repeat the entire process and resubmit documents, Dulce said. It took eight months to get him back.

Dulce is a pseudonym being used at her request because she fears speaking out could get her deported.

At one point, Dulce was told to attend an interview at an ICE office to show her identification as part of the process of reuniting with her son. She refused out of fear that she too might be detained, because she doesn’t have legal status. She believes ICE agents visited her home at one point.

“I stopped going home,” Dulce said. “I lived with some of my friends for days.”

Even though she lived just 45 minutes away, Dulce was allowed to visit her son only twice a month.

Until recently, most unaccompanied children landed in government custody after being detained at the border. But border crossings started to fall in 2024, and the number of people coming to the U.S. has dropped precipitously in President Trump’s second term.

Now, hundreds of kids have been taken to government shelters after being swept up inside the country, often during immigration raids or traffic stops, according to the advocates’ lawsuit. Many were already living with relatives, including guardians already vetted by the resettlement agency.

Releases have grinded nearly to a halt. According to the resettlement office, children in its custody stayed in government shelters or foster care for an average of one month in 2024. As of February, that had jumped to more than half a year.

When children do get released, it’s often only after their attorneys file a lawsuit in federal court challenging their detention as unconstitutional.

Authorities released Dulce’s son to her in February after the boy’s attorneys filed such a petition. Dulce said she’s relieved to have him back but still anxious that ICE could show up at their house.

Immigrants at Risk

During Trump’s first term, his administration was criticized for of children who had been released from custody. President Joe Biden was blamed for how his administration processed a surge of unaccompanied children that peaked in 2021 with about 22,000 in the resettlement office’s custody. Though most children were placed with legitimate sponsors, some were placed with people who hadn’t cleared , putting them at risk of .

The Trump administration says it is checking on those , and the Justice Department has prosecuted . On March 1, Homeland Security Secretary Kristi Noem, who is set to leave her role at the , touted a , including the resettlement office, that DHS said had tracked down 145,000 unaccompanied children who had been placed with caregivers during Biden’s term.

Yet internal HHS reports about that initiative obtained by ���ϳԹ��� News show that nearly 11,800 of those migrant children and nearly 500 of their caregivers were arrested as of Jan. 29. Only 125 of those migrant children and 55 of those caregivers were arrested for alleged criminal activity, suggesting the majority were for immigration violations.

HHS referred questions about the figures in the reports to DHS, which did not respond to requests for comment about the data. However, Michelle Brané, who was a DHS official in the Biden administration, said the figures show that most of the arrests were to detain and deport migrants. Previously, the administration targeted parents and caregivers who had paid for children to cross the border, trying to levy smuggling charges against them.

“They have really dropped that pretense in a lot of ways, and they are going for anyone openly,” Brané said. “These numbers clearly reflect that this is not about public safety or about safety of the children.”

Case on Hold

Carlos left Venezuela in 2022 because of death threats and, like thousands of others fleeing that country, was granted what’s called temporary protected status under the Biden administration. That protection for most Venezuelans by the Trump administration.

In January 2025, days before Trump was sworn in for his second term, Carlos’ children crossed the border from Mexico to the U.S., turned themselves over to border authorities, and were immediately placed in the resettlement agency’s custody. Carlos spent months submitting paperwork to reunite with them. He said he’s their only parent, because their mother left when they were toddlers.  

Officials visited his home twice and determined he was fit to care for them, according to court documents petitioning for his release from detention. He passed DNA testing, proving he’s the biological father, one of his attorneys said. His arrest documents show he has “no criminal history.” In July, Carlos was told his reunification case was complete and being sent for approval. But then, with little explanation, the case was put on hold.

Before his arrest by ICE, Carlos said, he drove 14 hours each way from his home to visit his children. Once there, he could see them for only one hour. When he was in detention, he said, he spoke to them about every two weeks in quick, monitored phone calls.

He’s trying to stay hopeful, but it’s hard.

According to documents completed by ICE officers during his arrest and submitted in his court case, Carlos was arrested under an initiative called Operation Guardian Trace, which requires immigration officers to detain potential caregivers if they are in the country without legal authorization and recommend that they be deported.

“This operation is designed to force parents to make an impossible choice between reuniting with their children and seeking safety,” said one of Carlos’ attorneys, Chiqui Sanchez Kennedy of the Galveston-Houston Immigrant Representation Project, a nonprofit that helps low-income immigrants.

‘I’m Going to Wait’

In March, a federal judge said officials had unlawfully detained Carlos and he was released on bond.

But his children still face an uncertain future for now. Government shelters often lack sufficient resources, , and social workers say lengthy stays in these facilities can result in additional trauma.

“Not only is it bad, full stop, but the longer you’re there, the worse it gets,” said Jonathan Beier, associate director of research and evaluation for the Acacia Center for Justice's Unaccompanied Children Program, which coordinates legal services for unaccompanied minors.

Carlos’ children could also be sent back to the country they fled. Because of his detention, Carlos will have to redo much of the process to reunite with them, according to an attorney for the children, Alexa Sendukas, also with the Galveston-Houston Immigrant Representation Project.

In statements shared through Sendukas, Carlos’ daughter said she no longer wants to be around others and spends most of the time in her room. His son, now 15, described having panic attacks and feeling that he’s missing out on life, whether it’s the opportunities he longs for — to learn English, to study science — or watching basketball with his family.

“I remember when I first arrived at this shelter, I was so hopeful and had faith that I would be reunited with my dad soon,” he said.

Carlos’ daughter spent the day crying in bed when the siblings learned their father had been detained. For days, they didn’t know where he was. Now, they fear the only way out is through adoption or foster care.

“I am afraid,” she said. “I’m going to wait for my dad forever.”

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Raven’s case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out — or to ensure a later “no” overrides an earlier “yes” in a different state.

This gap, along with a range of other issues related to the organ procurement system, has become a point of bipartisan congressional concern. Late last year, the House Ways and Means subcommittee on oversight examining what members described as shortcomings, including alleged consent failures.

The panel’s scrutiny of organ procurement organizations, or OPOs, and their consent practices is a first step toward a more meaningful accountability plan that could help maintain trust across the system, according to some committee staff members.

The trust in our organ procurement and transplant system “has been eroded,” said Rep. Terri Sewell of Alabama, the panel’s senior Democrat, calling for stronger transparency and oversight to rebuild public confidence.

“Respect for autonomy — our ability to make our own decisions (self-determination) — allows for both ‘yes’ and ‘no’ decisions and for changing one’s mind,” Margaret McLean, a bioethicist at Santa Clara University, said in an email.

“Medical decision-making is not well served in a context of ambiguity,” she said.

And if a donor revokes consent, she added, “revocation by that person should carry the same ethical and procedural weight as the initial authorization, perhaps more.”

Raven Kinser Changed Her Mind

Raven was 25 when she died. Her parents, Jeff and Jaime Kinser, were at home in Michigan when they received the phone call that shattered their world. They drove through the night to the Newport News hospital, where they learned Raven’s disposition had been referred to LifeNet Health, the region’s federally designated OPO. LifeNet a failing OPO by the Centers for Medicare & Medicaid Services, meaning it doesn’t meet the government’s standards for how well it finds donors and recovers usable organs for transplant compared with other organizations.

Under federal law, hospitals are required to refer deaths and imminent deaths to OPOs, which take responsibility for donation-related decisions and discussions.

OPOs occupy a hybrid position in the health care system, as private nonprofit entities that hold exclusive, federally authorized contracts to recover organs within defined regions. They are regulated by CMS and overseen by the Health Resources and Services Administration, but that oversight occurs primarily through certification standards, performance metrics, and periodic audits rather than routine public disclosure requirements. With donor registries largely managed at the state level and no unified federal reporting requirement for removals, comprehensive national data on revocations is elusive.

OPOs are meant to separate bedside care from organ procurement decisions — to help prevent conflicts of interest and preserve the trust that decisions about life-sustaining treatment are made solely in the dying patient’s interest. But the , leaving families unsure who is in control if and when conflicts arise.

The Kinsers, for instance, felt their daughter would not have wanted to go through the donation process, but, at the time, had no evidence. Jaime remembers telling her husband that Raven would have been mad at them for letting it happen. In an effort to stop it, Jaime inquired about whether she would be asked to sign a consent form. But a LifeNet staff member told her that wasn’t an option because donation was Raven’s “living will,” Jaime said. Meanwhile, Raven’s parents said, her personal effects, including her Virginia driver’s license, which bore no donor designation, had not yet been turned over to the family, leaving them no meaningful way to challenge LifeNet’s determination in real time.

Jaime struggled with this outcome, even mentioning in Raven’s obituary that she was an organ donor. “How would you try to make peace with something that you felt was so wrong but had no proof?” Jaime said.

Two months passed before the Kinsers gained possession of the license, which, as they had expected, showed that Raven had not opted to be an organ donor.

According to the Kinsers, LifeNet staff told them that Raven’s status as a registered donor was established by her designation on her older Michigan license.

An emailed statement attributed to Douglas Wilson, LifeNet executive vice president, said the OPO follows federal law on organ donation, the , and queries applicable state donor registries, relying on time stamps and governing law to determine the , legally valid expression of intent. Under that framework, a prior donor authorization remains enforceable unless a valid revocation is recorded in the regional OPO’s donor registry.

Because of privacy laws, Wilson said, LifeNet could not comment on the specifics of any individual case.

Raven Kinser’s choice not to be a donor when she applied for a Virginia license in July 2024 was not reflected in the registry LifeNet consulted, according to her parents, who said that is what the organization told them. According to Lara Malbon, executive director of Donate Life Virginia, which manages the state’s organ donor registry, if someone changes their donor status while completing a Virginia driver’s license or ID transaction, “that information is sent to our registry, and the registry is updated daily to reflect those changes.” Malbon also said Virginia’s registry includes only people who have “affirmatively said ‘yes’ to becoming an organ, eye, and tissue donor, and it retains records solely for those who have made that decision.”

The Kinsers said they were never told why Raven’s Virginia DMV record was insufficient, or how an older yes from Michigan could outweigh a newer no in Virginia.

In December, the Kinsers filed a complaint with the Health Resources and Services Administration, urging federal regulators to investigate LifeNet’s actions and require OPOs to provide families with documented proof of the donor’s current status at the time of referral. They also called for OPOs, which operate as federally designated regional monopolies but are structured as private nonprofits, to be made subject to public records laws.

When Opting Out Doesn’t Stick

Such confusion is not unique to the Kinser family. It is a consequence of the organ donation consent process in the United States.

“I have also wondered that: why there’s not just one” registry for organ donation, Jaime said. If you go to get a firearm, you have one federal registry, she said.

Here’s how the system works: Americans typically register their organ donation intentions when they apply for driver’s licenses through state DMVs, and that decision remains governed largely by state law. That has led to 50 different sets of rules and very little federal regulation of what has become an in the U.S.

In some states, a donor checkbox is a binding legal document. In other states, the same choice may have different rules about when it takes effect, what it covers, and how it can be revoked.

Those differences can be big. State rules determine whether a person’s “gift” is limited to transplantation or also includes research and education. They determine whether the donation authorization includes tissue. And they can determine what counts as a valid revocation and when it is legally recognized.

Because of the system’s fragmentation, though, signals can cross when someone changes their mind, like Raven; it’s not always reflected from one state system to another.

Under state versions of the Uniform Anatomical Gift Act, a donor’s most recent legally valid expression of intent is meant to control.

“Personal autonomy is paramount to everything,” said Adam Schiavi, a neurointensivist who studies end-of-life decision-making. “If I say I want to be a donor, or if I say I don’t want to be a donor, that has to take precedence over everything else.”

But states differ in how revocation must be recorded and which registry is considered authoritative if someone has lived in more than one state. Those inconsistencies can create uncertainty when records conflict across jurisdictions.

“It has to be the most recent expression, not the most recent yes,” Schiavi said.

In Michigan, a change to someone’s donor status is reflected immediately in the secretary of state’s system, but only affirmative “yes” registrations appear in the registry. Removal information remains in internal motor vehicle records. In Virginia, the state registry includes only those who have affirmatively said “yes,” retaining records solely of donors, creating potential gaps if someone believes a DMV change alone is sufficient.

Elsewhere, processes and volumes differ sharply. New Mexico updates driver records in real time but does not transmit status changes to its donor registry. Instead, donor services receive restricted search access. The state logged nearly 15,000 removals in late 2021 and almost 30,000 in 2022. Florida, which maintains formal removal records through weekly DMV data files, reported 356,161 removals in 2020, more than 1.5 million in 2023, and over 1.2 million in 2025. Kentucky processed 847,371 donor registrations from 2020 to 2025, but only 16,043 icon removals, with registry withdrawal handled separately. In 2025, more than 570,000 Texans opted into the registry, while over 31,000 individuals requested removal.

According to a federal official who asked not to be identified for fear of professional repercussions, OPOs have been highly effective at lobbying states to broaden the definition of consent and authorization — shaping how those terms are applied, whether those statuses must be renewed, and how easy or difficult it is for someone to opt out.

In subsequent correspondence with federal officials, the Kinsers have urged reforms to prevent OPOs from relying on older registry entries when a more recent state DMV record exists, and they have called for criminal penalties in cases in which consent is knowingly misrepresented. Federal regulators have not indicated whether such proposals are under consideration.

Congress Takes a Closer Look

Ethicists have long cautioned that consent must be more than a checkbox and must remain grounded in respect for the donor-patient. In an October on organ transplantation, the American College of Physicians emphasized that clinicians’ primary duty is to the patient in their care, and that maintaining trust requires transparency and safeguards to prevent conflicts of interest from blurring that “bright line.”

Advocates say those steps leave unresolved the core problem raised by the Kinser family: the lack of a clear, legally binding way for people to say “no” and for that decision to follow them across state lines.

The said it “supports strengthening donor registries and enhancing registry interoperability to ensure that an individual’s documented donation decision is honored.” But OPOs have also argued that current policies protect donation as a legally enforceable gift and prevent families from overriding a loved one’s “yes” in the midst of grief. They argue that stronger, more durable consent helps reduce missed donations and saves lives.

Congress and federal regulators are considering changes to the nation’s organ donation system, including how consent is recorded and what should happen when a donor changes their mind.

Sen. Ron Wyden (D-Ore.) last year to create new federal standards for patient safety, transparency, and oversight of organ transplants, including a formal authorization for hospital or OPO staff to pause harvesting if there is any “clinical sign of life.”

HHS press secretary Emily Hilliard said the agency is “committed to holding organ procurement organizations accountable” and to “restoring integrity and transparency” to organ donation policy, calling reforms essential to informed consent and protecting donor rights. CMS issued related March 11, but it does not address the problems highlighted by the Kinsers’ case.

Critics of the organ transplant system say it is difficult for families to obtain documentation or independently verify how consent determinations were made in disputed cases.

HRSA has launched a sweeping modernization of the Organ Procurement and Transplantation Network, the national system that oversees organ allocation and transplant policy. Federal officials have described the overhaul as the most significant restructuring of the transplant system in decades, aimed at breaking up a long-standing contractor monopoly, strengthening patient safety oversight, and replacing aging technology infrastructure.

Central to that effort is modernizing the OPTN’s data systems: improving interoperability, audit trails, and transparency in how decisions are documented and reviewed. A more modern federal data architecture could make it easier to trace which registry was queried, what time stamp controlled, and how a consent determination was reached in disputed donations that span multiple states. But the modernization effort would not change the underlying state-by-state legal framework for donor authorization and what counts as a valid “no.”

Meanwhile, Donate Life America, a national nonprofit that supports state donor registries, also runs the , a central database that allows people to sign up as organ donors directly. Unlike many DMV systems, the national registry lets people log in at any time to view, update, or remove their registration and print proof of their decision. The group is also starting a project to let participating states send registrations directly into the national system, creating one place to track donor sign-ups and removals across state lines.

Each of the proposals comes with trade-offs, and both advocates and OPOs have raised concerns about how they would work in practice.

“Just doing a dump truck dump of information is not going to do much unless you really apply it through checking and auditing,” said Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine. “It could be like the IRS. They don’t have to audit everybody. Just do a spot audit once in a while.”

The Kinsers aren’t opposed to organ donation itself. They celebrated Raven’s donation in her obituary, and in their complaint to federal regulators, they wrote, “We are NOT anti-organ donation, and we will never take away the gift of life our oldest daughter gave to others. However, that was not LifeNet’s choice to make.”

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Por eso, la joven de 31 años, de Henrico, Virginia, se quedó atónita cuando supo que Anthem finalmente tendría que pagar un tratamiento médico que le cambiaría la vida.

Durante dos años había luchado con la compañía para que cubriera infusiones de plasma sanguíneo llamadas inmunoglobulina intravenosa, o IVIG. En algunos casos, el tratamiento ha demostrado mejorar los síntomas asociados con la neuropatía de fibras pequeñas, una afección que hace que las extremidades de Ekirch se sientan como si estuvieran en llamas.

Pero Anthem había negado repetidamente la cobertura de IVIG, que cuesta alrededor de $10.000 por infusión. Luego, en febrero, una revisión externa de su caso realizada para la Oficina de Seguros de Virginia (Virginia Bureau of Insurance) revocó la negativa de Anthem.

Eso significaba que sus padres ya no tendrían que retirar dinero de los ahorros de jubilación de su padre para pagar el tratamiento de su propio bolsillo. Hasta entonces, ya habían gastado unos $90.000.

“Mi mamá estaba sollozando. Mi papá estaba de rodillas, llorando. No creo haberlo visto llorar así nunca”, dijo Ekirch al describir la reacción de sus padres ante la decisión.

“Creo que todavía estoy en shock por todo esto”, dijo.

En una declaración preparada, Stephanie DuBois, vocera de Anthem Blue Cross and Blue Shield, dijo que el tratamiento IVIG no “se ajustaba a nuestros estándares basados en evidencia”. Sin embargo, afirmó que la compañía respeta “la decisión del revisor externo” de revocar la negativa.

Mientras tanto, cada año millones de pacientes como Ekirch siguen enfrentando negativas a través del proceso de autorización previa, que exige que muchos pacientes o sus doctores obtengan aprobación anticipada de las aseguradoras antes de continuar con la atención médica.

Y a pesar de las promesas de reforma de las aseguradoras, las negativas siguen siendo una característica frustrante del sistema de salud.

En junio pasado, funcionarios de la administración Trump anunciaron en una conferencia de prensa que líderes de las aseguradoras de salud se habían comprometido a simplificar la autorización previa tomando medidas como que requieren aprobación anticipada. También prometieron tiempos de respuesta más rápidos y “explicaciones claras y fáciles de entender” sobre sus decisiones.

Sin embargo, en febrero, cuando ���ϳԹ��� News contactó a más de una docena de grandes aseguradoras que firmaron el compromiso, la mitad de ellas no proporcionó detalles específicos sobre los servicios de salud para los cuales ya no exigen autorización previa.

Un indicó que la industria sigue comprometida con el esfuerzo. Pero doctores, consumidores y defensores de pacientes son pesimistas sobre la disposición de las aseguradoras a cumplir con estos cambios voluntarios.

“No tienen ningún deseo de hacer lo que es mejor para el paciente si eso va a afectar sus bolsillos”, dijo Matt Toresco, director ejecutivo de Archo Advocacy, una empresa de defensa y consultoría para pacientes.

“En el mundo de los seguros, la responsabilidad fiduciaria no es con el paciente”, dijo. “Es con Wall Street”.

¿Un cambio significativo?

El Departamento de Salud y Servicios Humanos de EE.UU. (HHS) no respondió a las preguntas para este artículo. Las pocas actualizaciones que el gobierno federal ha emitido desde junio sobre la reforma de la autorización previa incluyen un sobre garantizar que los médicos puedan enviar solicitudes de forma electrónica.

AHIP, el grupo comercial de aseguradoras de salud que publicó el comunicado de enero, no proporcionó información sobre tratamientos, códigos, medicamentos o procedimientos específicos que sus miembros hayan eliminado del requisito de autorización previa desde que firmaron el compromiso.

“Tendremos actualizaciones adicionales sobre el progreso más adelante esta primavera”, dijo Kelly Parsons, vocera de la Asociación Blue Cross Blue Shield, que representa a 33 compañías independientes de Blue Cross y Blue Shield. Tampoco ofreció detalles específicos.

Las compañías de Blue Cross y Blue Shield que cubren pacientes en Alabama, Arkansas, Iowa, Michigan, Pennsylvania, Carolina del Sur, Dakota del Sur y Tennessee no respondieron a las preguntas para este artículo o remitieron las consultas a la Asociación Blue Cross Blue Shield.

En contraste, otras aseguradoras sí citaron ejemplos específicos de cambios.

Aetna CVS Health comenzó a agrupar autorizaciones previas para procedimientos musculoesqueléticos, así como para pacientes con cáncer de pulmón, mama y próstata, dijo el vocero Phil Blando.

Esta práctica permite que los proveedores presenten una sola solicitud de autorización para el tratamiento de un paciente en lugar de varias.

Y Humana eliminó los requisitos de autorización previa para servicios de diagnóstico relacionados con colonoscopías, entre otros cambios, dijo el portavoz Mark Taylor.

UnitedHealthcare, que fue objeto de intenso escrutinio por su uso de la autorización previa tras de uno de sus ejecutivos a finales de 2024, eliminó el requisito de autorización previa el 1 de enero para ciertos estudios de imágenes nucleares, ultrasonidos obstétricos y procedimientos de ecocardiograma, entre otros cambios, dijo el vocero Matthew Rodriguez.

Aun así, algunos expertos del sistema de salud dudan que estos cambios tengan mucho impacto.

“Las aseguradoras han hecho promesas similares antes y no han cumplido con cambios significativos”, dijo Bobby Mukkamala, presidente de la Asociación Médica Estadounidense, que representa a doctores y estudiantes de medicina.

En 2018, , incluidos AHIP y la Asociación Blue Cross Blue Shield, anunciaron una alianza “para identificar oportunidades de mejorar el proceso de autorización previa”. Sin embargo, en respuesta al compromiso de junio que el proceso sigue siendo “costoso, ineficiente, poco transparente y, con demasiada frecuencia, peligroso para los pacientes”.

“La transparencia es esencial para que todos puedan ver si realmente se están produciendo reformas”, dijo a ���ϳԹ��� News.

Entusiasmo moderado

La autorización previa puede estar recibiendo más atención política, pero los datos muestran que los pacientes —especialmente quienes tienen afecciones crónicas que requieren tratamiento continuo— siguen enfrentando obstáculos para recibir la atención recomendada por sus doctores.

Entre los pacientes de ese grupo, el 39 % dijo que la autorización previa es “la mayor carga” para recibir atención, según , una organización sin fines de lucro de información sobre salud que incluye a ���ϳԹ��� News.

Eso es cierto para Payton Herres, 25 años, de Dayton, Ohio, quien en 2012 tuvo un trasplante de corazón, lo que requiere que tome un medicamento recetado contra el rechazo por el resto de su vida.

Pero el año pasado, dijo, Anthem negó la cobertura del costoso medicamento. Lo había estado tomando durante más de 10 años.

“He estado con Anthem toda mi vida y, de repente —no sé qué pasó— empezaron a negármelo una y otra vez”, dijo. “Casi me quedo sin medicamento”.

DuBois, la vocera de Anthem, confirmó que la compañía ha aprobado el medicamento. Cuando negó la cobertura, la empresa no había tomado en cuenta el historial de tratamiento de Herres, dijo DuBois.

Pero Herres dijo que la compañía le exigirá obtener una nueva autorización para el medicamento en septiembre.

“¿Van a negar otras cosas también?”, preguntó. “Espero no tener que seguir luchando así por el resto de mi vida”.

Anna Hocum, de 25 años, se prepara para una lucha similar. En 2024 y 2025, su aseguradora negó repetidamente la cobertura de un tratamiento costoso utilizado para ralentizar la progresión de una afección genética rara que destruye la función de sus pulmones.

“Simplemente pensé que iba a morir”, dijo Hocum, de Milwaukee. “Estaba luchando por sobrevivir y luego estaba luchando para convencer a alguien de que merecía sobrevivir”.

Al igual que con Ekirch, los padres de Hocum pagaron el tratamiento mientras esperaban que la compañía de seguros revocara las negativas iniciales. Amigos y familiares donaron más de $30.000 a través de una campaña en GoFundMe para ayudar a cubrir los costos.

Luego, la primavera pasada, Hocum dijo que su aseguradora revocó la negativa sin una explicación aparente. Pero la aprobación es válida solo por 12 meses, por lo que necesitará otra autorización previa este año.

“Da miedo”, dijo. “No está garantizado que lo acepten”.

Aunque ahora es “un enorme alivio” que Anthem esté obligada a cubrir el tratamiento de Ekirch, su madre no sabe si o cómo la familia recuperará el dinero que ya ha pagado.

En una carta a Ekirch confirmando la decisión del revisor externo, Anthem explicó que la autorización será válida por un año a partir del 25 de septiembre de 2025. “Nos complace poder ofrecer una respuesta favorable en este caso”, escribió un analista de quejas y apelaciones de Anthem.

Ekirch dijo que la carta resaltó la hipocresía de la compañía.

“Actúan como si fueran una organización benevolente que me está haciendo un favor”. En realidad, dijo, “pelearon conmigo con uñas y dientes en cada paso del camino, hasta el punto de que hicieron de mi vida un infierno”.

Ahora, el acceso de Ekirch a la IVIG podría volver a estar en peligro. Su cobertura COBRA a través de Anthem vence a finales de marzo. En abril tendrá que cambiar a un nuevo plan médico, y se está preparando para otra ronda de autorizaciones previas.

“Simplemente tengo mucho miedo de no tener la fuerza para pasar por todo lo que se necesita”, dijo Ekirch, “para luchar esta batalla otra vez”.

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That’s why Ekirch, 31, of Henrico, Virginia, was stunned when she learned Anthem would finally have to pay for life-changing medical treatment.

For two years, she had battled the company to cover blood plasma infusions called intravenous immunoglobulin, or IVIG. The treatment has been shown, in some cases, to improve symptoms associated with small-fiber neuropathy, a condition that makes Ekirch’s limbs feel like they’re on fire.

But Anthem had repeatedly denied coverage for IVIG, which costs about $10,000 per infusion. Then, in February, an external review of her case conducted for the Virginia Bureau of Insurance overturned Anthem’s denial. It meant her parents would no longer need to withdraw money from her father’s retirement savings to pay out-of-pocket. Already, they’d spent about $90,000.

“My mom was sobbing. My dad was on his knees, sobbing. I don’t think I’ve ever seen him cry like that,” said Ekirch, describing her parents’ reaction to the reversal.

“I think I’m in shock from it all,” she said.

In a prepared statement, Stephanie DuBois, a spokesperson for Anthem Blue Cross and Blue Shield, said IVIG did not “align with our evidence-based standards.” But she said the company respects “the external reviewer’s decision” to overturn the denial.

Meanwhile, each year millions of patients like Ekirch continue to face denials through the prior authorization process, which requires many patients or their doctors to seek preapproval from health insurers before proceeding with medical care. And despite promises of reform from insurance companies, denials remain a frustrating hallmark of the American health care system.

Last June, Trump administration officials announced in a press conference that health insurance leaders had pledged to simplify prior authorization by taking steps such as “” subject to preapproval. The insurers also promised faster turnaround times and “clear, easy-to-understand explanations” of their decisions.

Yet in February, when ���ϳԹ��� News contacted more than a dozen major insurers that signed the pledge, half of them failed to provide specifics about health care services for which they no longer require prior authorization.

A said the industry remains committed to the effort. But physicians, consumers, and patient advocates are pessimistic about the insurers’ willingness to follow through with these voluntary changes.

“They have no desire to do what’s in the best interest of the patient if it’s going to hurt their pockets,” said Matt Toresco, CEO of Archo Advocacy, a patient advocacy and consulting company.

“In the insurance world, the fiduciary responsibility is not to the patient,” he said. “It’s to the Street,” he said, referring to Wall Street.

Meaningful Change?

The Department of Health and Human Services did not respond to questions for this article. The few updates the federal government has issued since June on prior authorization reform include a about ensuring clinicians can submit requests electronically.

AHIP, the health insurer trade group that issued the January press release, did not provide information about specific treatments, codes, medications, or procedures that its members have released from prior authorization since signing the pledge.

“We will have additional progress updates coming out later this spring,” said Kelly Parsons, a spokesperson for the Blue Cross Blue Shield Association, which represents 33 independent Blue Cross and Blue Shield companies. She also offered no specifics.

Blue Cross and Blue Shield companies that cover patients in Alabama, Arkansas, Iowa, Michigan, Pennsylvania, South Carolina, South Dakota, and Tennessee either did not respond to questions for this article or deferred to the Blue Cross Blue Shield Association.

By contrast, other insurers cited specific examples of change.

Aetna CVS Health began “bundling” prior authorizations for musculoskeletal procedures, as well as for lung, breast, and prostate cancer patients, spokesperson Phil Blando said. This practice allows providers to file one authorization request for a patient’s treatment instead of several.

And Humana removed prior authorization requirements for “diagnostic services across colonoscopies,” among other changes, spokesperson Mark Taylor said.

UnitedHealthcare, which came under intense scrutiny for its use of prior authorization following the of one of its executives in late 2024, removed prior authorization requirements on Jan. 1 for “certain nuclear imaging, obstetrical ultrasound and echocardiogram procedures,” among other changes, spokesperson Matthew Rodriguez said.

Yet some health care insiders doubt these changes will amount to much.

“Insurers have made similar promises before and failed to deliver meaningful change,” said Bobby Mukkamala, president of the American Medical Association, which represents U.S. physicians and medical students.

In 2018, , including AHIP and the Blue Cross Blue Shield Association, announced a partnership “to identify opportunities to improve the prior authorization process.” Yet, in response to the June pledge, the process remains “costly, inefficient, opaque, and too often hazardous for patients.”

“Transparency is essential so everyone can see whether real reforms are happening,” he told ���ϳԹ��� News.

Curbed Enthusiasm

Prior authorization may be getting more political attention, but data shows patients — particularly those with chronic conditions that require ongoing medical treatment — continue to face barriers to doctor-recommended care.

Among patients in that group, 39% said prior authorization is “the single biggest burden” in receiving care, according to a by KFF, a health information nonprofit that includes ���ϳԹ��� News.

I was fighting to survive, and then I was fighting to convince someone that I deserved to survive.

Anna Hocum

That’s true for Payton Herres, 25, of Dayton, Ohio, who in 2012 received a heart transplant, which requires her to take an antirejection prescription medication for the rest of her life.

But last year, she said, Anthem denied coverage for the expensive drug. She’d been taking it for more than 10 years.

“I’ve been with Anthem my entire life, and then, all of a sudden — I don’t know what happened — they just started denying me over and over,” she said. “I almost ran out of medication.”

DuBois, the Anthem spokesperson, confirmed the company has approved the medication. It had not taken Herres’ treatment history into account when it denied coverage for the drug, DuBois said.

But Herres said the company will require her to obtain a new authorization for the medication in September.

“Are they going to deny other things, too?” she asked. “I hope I don’t have to keep fighting like this for the rest of my life.”

Anna Hocum, 25, is preparing for a similar fight. In 2024 and 2025, her insurer repeatedly denied coverage for expensive treatment used to slow the progression of a rare genetic condition that destroys her lung function.

“I just thought I was going to die,” said Hocum, of Milwaukee. “I was fighting to survive, and then I was fighting to convince someone that I deserved to survive.”

Like with Ekirch, Hocum’s parents paid while they waited for her insurance company to overturn the initial denials. Friends and family donated more than $30,000 through a GoFundMe campaign to help defray the costs.

Then last spring, Hocum said, her insurer reversed the denial without an apparent explanation. But the approval is valid for only 12 months, so she will need another prior authorization approval this year.

“It is scary,” she said. “It’s not guaranteed that it’ll be accepted.”

They fought me tooth and nail every step of the way, to the point that they made my life a living hell.

Sheldon Ekirch

Even though it’s a “huge relief” that Anthem is now obligated to cover Ekirch’s treatment, her mother doesn’t know if or how the family will recoup the money it has already paid.

In a letter to Ekirch confirming the external reviewer’s decision, Anthem explained that the authorization would be valid for a year beginning on Sept. 25, 2025. “We are pleased we can provide a favorable response in this case,” a grievance and appeals analyst for Anthem wrote.

Ekirch said the letter highlighted the company’s hypocrisy.

“They act as though they are a benevolent organization doing me a favor.” In reality, she said, “they fought me tooth and nail every step of the way, to the point that they made my life a living hell.”

Now, Ekirch’s access to IVIG may be in jeopardy again. Her COBRA coverage through Anthem expires in late March. In April, she will need to transition to a new insurance plan — and she’s bracing herself for another round of prior authorization.

“I just am so afraid that I don’t have the strength to go through and do what it takes,” Ekirch said, “to fight this battle again.”

Do you have an experience with prior authorization you’d like to share? to tell ���ϳԹ��� News your story.

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Philip Stewart, un investigador de Rocky Mountain Laboratories enfocado en enfermedades transmitidas por garrapatas, dijo que se jubiló dos años antes de lo planeado debido a obstáculos que hacían demasiado difícil hacer bien su trabajo.

Alexa Romberg, científica dedicada a la prevención de adicciones enfocada en el tabaco, dijo que “perdió gran parte” de la investigación que supervisaba cuando desaparecieron las subvenciones federales.

“Si uno piensa en la agenda de ‘Make America Healthy Again’ y en la prevención de enfermedades crónicas”, dijo Romberg, “el consumo de tabaco es el principal factor que contribuye a la enfermedad y la muerte temprana que podemos prevenir”.

Los Institutos Nacionales de la Salud (NIH, por sus siglas en inglés) son el mayor financiador público de investigación biomédica en el mundo. es “mejorar la salud, prolongar la vida y reducir las enfermedades”.

Durante décadas, el valor de los NIH ha sido quizá una de las pocas cosas en las que todos en Washington han estado de acuerdo. Los legisladores han aumentado su financiamiento de forma constante.

“Estoy muy complacido de estar asociado con los NIH”, dijo el senador Roy Blunt, republicano de Missouri y uno de los mayores defensores de la institución en el Congreso, , poco antes de retirarse.

Pero durante el segundo mandato del presidente Donald Trump, los NIH han visto un éxodo masivo de científicos como Ernstoff, Stewart y Romberg. Datos federales muestran que los NIH perdieron alrededor de 4.400 personas, más del 20% de su fuerza laboral.

Los científicos dicen que estas salidas afectan la capacidad de Estados Unidos para responder a brotes de enfermedades, desarrollar tratamientos para enfermedades crónicas y enfrentar los problemas de salud pública más urgentes del país.

“Las personas sufrirán las consecuencias”, señaló Sylvia Chou, científica que trabajó en el Instituto Nacional del Cáncer (NCI, por sus siglas en inglés) en Rockville, Maryland, durante más de 15 años antes de irse en enero. “Habrá muchos más problemas de salud e incluso muertes, porque necesitamos la ciencia para ayudar a las personas a estar sanas”.

Por qué se están yendo

���ϳԹ��� News entrevistó a media docena de científicos que dijeron que dejaron sus trabajos años antes de lo planeado debido a la agitación de 2025.

Hace apenas unos años, la fuerza laboral de los NIH crecía de forma constante, pasando de unos 17.700 empleados en el año fiscal 2019 a alrededor de 21.100 en el año fiscal 2024, según datos federales. Con Trump, ese crecimiento se redujo.

El gobierno de Trump implementó una campaña para sacar a trabajadores del gobierno considerados desleales al presidente. Algunas personas fueron despedidas o presionadas para irse. Los funcionarios también establecieron un congelamiento de contrataciones que duró varios meses.

La fuerza laboral de los NIH cayó a unas 17.100 personas, su nivel más bajo en al menos dos décadas. La mayoría de quienes se fueron no fueron despedidos. Aproximadamente 4 de cada 5 se jubilaron, renunciaron, terminaron sus nombramientos o encontraron otro trabajo, según datos federales.

Los científicos observaron con preocupación cómo a sus colegas se les obligaba a cancelar fondos de investigación para temas que el gobierno de Trump consideraba prohibidos. En los laboratorios de los NIH, el trabajo rutinario se detuvo.

También dijeron que enfrentaron grandes retrasos para acceder a equipos y suministros. Las autorizaciones de viaje se retrasaban o se negaban.

Al personal de la agencia se le ordenó no comunicarse con nadie fuera de la institución. Cuando volvieron a poder hacerlo, se les impusieron más restricciones sobre lo que podían presentar al público.

Y bajo la agenda del gobierno para eliminar la “diversidad, equidad e inclusión”, se sacaron referencias a minorías o a la equidad en salud en investigaciones financiadas por los NIH. También se eliminaron iniciativas destinadas a proteger la salud de los estadounidenses.

Entre ellas: apoyo a científicos que comienzan su carrera, estrategias para prevenir daños por VIH o por adicciones, y estudios sobre cómo los sistemas inmunológicos de distintas poblaciones responden a enfermedades.

En publicado en enero, Chou y Romberg estuvieron entre un grupo de científicos de los NIH que dijeron que renunciaron en protesta contra un gobierno “que trata la ciencia no como un proceso para construir conocimiento, sino como un medio para impulsar su agenda política”.

Una “destrucción fundamental”

Emily Hilliard, vocera del Departamento de Salud y Servicios Humanos (HHS por sus siglas en inglés), dijo en un comunicado que la agencia cambió su enfoque para priorizar la investigación basada en evidencia en lugar de “agendas ideológicas”.

Agregó que los NIH siguen contratando a “los mejores y más brillantes” y avanzando en ciencia de alta calidad para “lograr avances para el pueblo estadounidense”. El departamento supervisa los NIH.

“Era necesario un reinicio importante. El HHS ha tomado medidas para simplificar las operaciones, reducir duplicaciones y volver a los niveles de empleo previos a la pandemia”, dijo Hilliard.

Sin embargo, muchos científicos dudan de que los NIH aún puedan cumplir su misión pública.

“Ha habido una destrucción fundamental”, observó Daniel Dulebohn, investigador que pasó casi dos décadas en Rocky Mountain Laboratories en Hamilton, Montana. “Va a tomar muchísimo tiempo reconstruirlo”.

Dulebohn dejó el Instituto Nacional de Alergias y Enfermedades Infecciosas (NIAID, por sus siglas en inglés) en septiembre.

Analizaba cómo interactúan moléculas y proteínas en enfermedades como la enfermedad de Lyme, el VIH y el Alzheimer, información clave para desarrollar nuevos tratamientos. Dulebohn era una fuente para científicos que enfrentaban dificultades para entender, por ejemplo, si ciertas moléculas podían prevenir infecciones o responder a un tratamiento.

Ahora él y su esposa viven de sus ahorros en México con sus tres niños pequeños. Dulebohn está pensando en qué hará después. Una opción: bienes raíces.

El experto en análisis bioquímico operaba equipos que pocas personas saben usar. Su salida reduce aún más los recursos en esta especialidad.

“Está claro cuando alguien crea un medicamento y se cura una enfermedad. Pero nunca sabes cuáles podrían haberse curado”, dijo Dulebohn. “No sabemos lo que hemos perdido”.

Laura Stark, profesora asociada en la Universidad Vanderbilt, especializada en la historia de la medicina y la ciencia, dijo que eliminar personal de los NIH impulsará un cambio hacia la investigación del sector privado, con fines de lucro, “en lugar de realmente ayudar a la salud de los estadounidenses”.

“Simplemente ya no tenemos personas que puedan dedicarse a investigar por el bien público”, señaló Stark.

De apoyo a escrutinio

Stark dijo que las bases de los NIH actuales se establecieron durante la Segunda Guerra Mundial, cuando el gobierno de Estados Unidos lideró un esfuerzo para producir en masa el antibiótico penicilina y salvar a soldados de infecciones.

La agencia ha tenido un papel central en descubrimientos y tratamientos que salvan vidas, incluidos avances para afecciones del corazón, cáncer, diabetes y enfermedades genéticas como la fibrosis quística.

Con apoyo bipartidista en el Congreso, el presupuesto de los NIH ha crecido con el tiempo y alcanza los $48,7 mil millones para el año fiscal 2026.

Los NIH destinan aproximadamente el 11% de su presupuesto a científicos de la agencia. Alrededor del 80% se otorga a universidades y otras instituciones.

El dinero puede existir, pero las personas encargadas de asignarlo ya no están, dijeron los científicos.

Jennifer Troyer dejó el Instituto Nacional de Investigación del Genoma Humano (NHGRI, por sus siglas en inglés) en Bethesda, Maryland, el 31 de diciembre, después de trabajar en varios cargos en los NIH durante unos 25 años.

La división que dirigía revisa investigaciones y supervisa subvenciones a organizaciones que estudian el genoma humano —el conjunto completo de genes de una persona— y cómo puede usarse para mejorar la salud.

Dijo que el año pasado su división perdió cerca de dos tercios de su personal.

“Realmente no hay suficientes personas allí ahora para hacer el trabajo”, dijo Troyer. “Es un daño extremo”.

Decidió renunciar el día en que Trump emitió una en agosto que prohibía el uso de subvenciones para “financiar, promover, fomentar, subsidiar o facilitar” lo que describió como “valores antiestadounidenses”. También permitió que funcionarios políticos revisaran todas las decisiones de financiamiento.

“Yo no estaba dispuesta a dirigir una división bajo esas órdenes”, añadió Troyer. Aún no sabe cuál será su próximo paso profesional.

“Ya es suficiente”

Incluso investigaciones alineadas con las prioridades declaradas del gobierno se han visto afectadas.

El secretario de Salud y Servicios Humanos, Robert F. Kennedy Jr., ha dicho que el diagnóstico y tratamiento de la enfermedad de Lyme —una infección transmitida por garrapatas que puede causar síntomas debilitantes de por vida— son .

En diciembre, Kennedy dijo que el gobierno durante mucho tiempo ha ignorado a pacientes afectados por esta enfermedad, que se diagnostica cada año a en el país.

Ese mismo mes, Stewart, quien dedicó su carrera a estudiar garrapatas y la enfermedad de Lyme como científico federal, se jubiló antes de tiempo. Había trabajado para el gobierno durante 27 años.

Stewart dijo que los recortes de personal y los retrasos en los viajes frenaron sus esfuerzos por confirmar hasta dónde se habían extendido las garrapatas que transmiten Lyme, información que podría ayudar a los doctores a reconocer síntomas más rápido.

Stewart fue el científico principal en una investigación publicada el año pasado que —también conocida como garrapata del venado— en Montana. Fue la primera vez que se confirmó en ese estado la garrapata más conocida por transmitir la enfermedad.

Él quería determinar si el hallazgo era un caso aislado o una señal de que la especie estaba expandiéndose.

“El consejo que hemos recibido es: ‘Bajen la cabeza debajo de la línea de la trinchera. No miren. No se asomen y se arriesguen a que les disparen’”, dijo Stewart. “¿En qué momento dices finalmente: ‘Ya es suficiente’ y ‘Ya no estamos siendo efectivos’?”

Los científicos dijeron que quienes comienzan sus carreras están buscando empleo y capacitación en el extranjero.

Los que quieren quedarse en Estados Unidos enfrentan dificultades para ser contratados debido a los recortes en subvenciones de investigación y la incertidumbre sobre el financiamiento.

En conjunto, los expertos que estudian enfermedades advierten que Estados Unidos podría perder su posición histórica como líder mundial en investigación biomédica, con un impacto devastador.

Stanley Perlman, virólogo de la Universidad de Iowa que estudia enfermedades infecciosas pediátricas, dijo que ese liderazgo le dio al país más que prestigio: atrajo a científicos de todo el mundo para estudiar enfermedades que afectan especialmente a las personas aquí.

No hay garantía de que la investigación que se ha frenado se retome en otro lugar, ya sea en la industria privada o en otros países. Y si otros realizan ese trabajo, los estadounidenses podrían enfrentar retrasos para ver los beneficios, dijo.

“Si no tienes acceso a cómo se hizo el trabajo”, agregó Perlman, “es más difícil reproducirlo y adaptarlo para tu país”.

La editora de datos de ���ϳԹ��� News, Holly K. Hacker, contribuyó con este artículo.

���ϳԹ��� 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 .

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Philip Stewart, a Rocky Mountain Laboratories researcher focused on tick-borne diseases, said he retired two years earlier than planned because of hurdles that made it too challenging to do his job well.

Alexa Romberg, an addiction prevention scientist focused on tobacco, said she “lost a great deal” of the research she oversaw when federal grants vanished.

“If one is thinking about the ‘Make America Healthy Again’ agenda and the prevention of chronic disease,” Romberg said, “tobacco use is the No. 1 contributor to early morbidity and mortality that we can prevent.”

The National Institutes of Health is the largest public funder of biomedical research in the world, with a to “enhance health, lengthen life, and reduce illness.”

Over decades, the value of the NIH may be the one thing everyone in Washington has agreed on. Lawmakers have routinely boosted its funding.

“I’m so pleased to be associated with NIH,” former Sen. Roy Blunt, a Missouri Republican and one of the NIH’s biggest champions in Congress, shortly before he retired.

But in President Donald Trump’s second term, the NIH has seen an exodus of scientists like Ernstoff, Stewart, and Romberg. Federal data shows the NIH lost about 4,400 people — more than 20% of its workforce. Scientists say the departures harm the U.S.’ ability to respond to disease outbreaks, develop treatments for chronic illnesses, and confront the nation’s most pressing public health problems.

“People are going to get hurt,” said Sylvia Chou, a scientist who worked at the National Cancer Institute in Rockville, Maryland, for over 15 years before she left in January. “There’s going to be a lot more health challenges and even deaths, because we need science in order to help people get healthy.”

Why They’re Leaving

���ϳԹ��� News interviewed a half dozen scientists who said they quit their jobs years before they’d planned to because of the tumult of 2025.

Only a few years ago, the NIH workforce was steadily growing, from roughly 17,700 employees in fiscal year 2019 to around 21,100 in fiscal 2024, federal data shows. Under Trump, those gains have been slashed.

The Trump administration enacted a campaign to purge government workers perceived as disloyal to the president. People were fired or encouraged to leave. Officials instituted a months-long freeze on hiring.

The NIH workforce has plummeted to about 17,100 people — its lowest level in at least two decades. Most who left weren’t fired. Roughly 4 in 5 either retired, quit, had appointments that expired, or transferred to a different job, according to federal data.

Scientists watched with dread as their colleagues were forced to terminate research funds for topics the Trump administration deemed off-limits. Across NIH labs, routine work stalled. They said they faced major delays in accessing equipment and supplies. Travel authorizations were slowed or denied.

Agency staff were instructed not to communicate with anyone outside the agency. When they could talk again, they were subject to greater constraints on what they could present to the public.

And under the administration’s agenda to eliminate “diversity, equity, and inclusion,” references to minorities or health equity were purged from NIH-funded research. Initiatives to protect Americans’ health were gutted. Among them: support for early-career scientists, ways to prevent harm from HIV or substance use, and efforts to study how different populations’ immune systems respond to disease.

, Chou and Romberg were among a group of NIH scientists who said they resigned in protest of an administration “that treats science not as a process for building knowledge, but as a means to advance its political agenda.”

A ‘Fundamental Destruction’

Health and Human Services spokesperson Emily Hilliard said in a statement that the agency had shifted to focus on evidence-based research over “ideological agendas.” She said the NIH is still recruiting “the best and brightest” and advancing high-quality science to “deliver breakthroughs for the American people.” The federal health department oversees NIH.

“A major reset was overdue. HHS has taken action to streamline operations, reduce redundancies, and return to pre-pandemic employment levels,” Hilliard said.

Many scientists, however, question whether the NIH can still fulfill its public mission.

“There’s been a fundamental destruction,” said Daniel Dulebohn, a researcher who spent nearly two decades at Rocky Mountain Laboratories in Hamilton, Montana. It’s going to “take a very, very long time to rebuild.”

Dulebohn left the NIH’s infectious disease and allergy institute in September.

He analyzed how molecules and proteins interact in diseases, such as Lyme disease, HIV, and Alzheimer’s — information that’s key for new treatments. Dulebohn was a resource for scientists when they hit walls trying to understand, for example, if molecules could prevent infection or react to a treatment.

Now he and his wife are living off savings in Mexico with their three young kids. Dulebohn’s thinking about what’s next. One option: real estate.

The expert in biochemical analysis operated equipment few others know how to use. His exit further depletes resources in the specialty.

“It’s clear when someone comes out with a drug and now you’ve just cured a disease. But you never know which ones could have been cured,” Dulebohn said. “We don’t know what we’ve lost.”

Laura Stark, a Vanderbilt University associate professor who specializes in the history of medicine and science, said wiping out NIH staff will propel a shift toward private-industry research, with its profit motives, “as opposed to actually helping American health.”

“We just don’t have people who are now able to pursue research for the public good,” Stark said.

From Support to Scrutiny

Stark said the seeds of the present-day NIH were planted during World War II when the U.S. government spearheaded an effort to mass-produce the antibiotic penicillin to save soldiers from infections.

The agency has played a central role in lifesaving discoveries and treatments — including for heart disease, cancer, diabetes, and genetic diseases such as cystic fibrosis.

With bipartisan backing from Congress, the NIH budget has grown significantly over time, sitting at $48.7 billion for fiscal 2026. The NIH allocates roughly 11% of its budget for agency scientists. About 80% is awarded to universities and other institutions.

The money may be there, but the people who get it out the door are not, scientists said.

Jennifer Troyer left the National Human Genome Research Institute in Bethesda, Maryland, on Dec. 31, after working in various positions at the NIH for about 25 years. The division she led reviews research and oversees grants to organizations studying the human genome — or a person’s complete set of genes — and how it can be used to benefit health.

Last year, she said, her division lost about two-thirds of its staff. “There really are not enough people there right now to actually get the work done,” Troyer said. “It’s extreme harm.”

She decided to quit the day Trump issued an in August that prohibited the use of grants to “fund, promote, encourage, subsidize, or facilitate” what it described as “anti-American values.” It also allowed political appointees to review all funding decisions.

“I wasn’t going to operate a division under those orders,” Troyer said. She hasn’t figured out her next career steps.

‘Enough Is Enough’

Research aligned with the administration’s stated priorities has suffered.

HHS Secretary Robert F. Kennedy Jr. has called the diagnosis and treatment of Lyme disease — a tick-borne infection that can cause debilitating lifelong symptoms — . In December, Kennedy said the government had long dismissed patients burdened with a disease that in the U.S. are diagnosed with annually.

That same month, Stewart, who had dedicated his career to ticks and Lyme disease as a federal scientist, retired early. He’d worked for the government for 27 years. Stewart said workforce cuts and travel delays stalled his efforts to confirm how far Lyme-carrying ticks had spread — information that could help doctors recognize symptoms sooner.

Stewart was a lead scientist on research published last year , or deer tick, in Montana. It was the first time the tick best known for transmitting Lyme disease had been confirmed in the state. He wanted to determine if the discovery was a fluke or an indicator that the species was gaining ground.

“The advice we’ve been getting is, ‘Put your head down below the trench line. Don’t look. Don’t peek over and risk getting shot,’” Stewart said. “At what point do you finally say, ‘Enough is enough’ and ‘We’re not being effective anymore’?”

Scientists said those early in their careers are looking abroad for jobs and training. People who want to stay in the U.S. are running into problems getting hired because of cuts to research grants and uncertainty about funding.

Collectively, people studying diseases warn the U.S. could lose its long-held position as the global leader in biomedical research, with devastating impact.

Stanley Perlman, a University of Iowa virologist who studies pediatric infectious diseases, said that title earned the nation more than prestige; it drew top scientists from the world over to the U.S. to study diseases that particularly affect people here.

There’s no guarantee halted research will be picked up elsewhere, whether by private industry or other countries. If others are doing that work, Americans could face delays in seeing benefits, he said.

“If you don’t have access to how the work was done,” Perlman said, “it’s harder to reproduce and adapt it for your country.”

���ϳԹ��� News data editor Holly K. Hacker contributed to this report.

���ϳԹ��� 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 .

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This story can be republished for free (details).

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