Pero, siete meses después, los resultados de cinco estados compartidos con Ñî¹óåú´«Ã½Ò•îl Health News muestran que las revisiones han encontrado poca evidencia de que este sea un problema generalizado.

Solo los ciudadanos de Estados Unidos y algunos inmigrantes con presencia legal pueden acceder a Medicaid, que cubre costos de atención médica para personas con bajos ingresos y discapacidades, así como al Programa de Seguro Médico Infantil (CHIP, por sus siglas en inglés). Ambos programas son administrados por los estados.

Voceros de las agencias de Medicaid de Pennsylvania y Colorado dijeron que, hasta marzo, los estados no habían encontrado a nadie que debiera ser dado de baja de Medicaid. Esto después de revisar un total combinado de 79.000 nombres.

A solicitud de la administración Trump, Texas revisó los registros de más de 28.000 inscritos en Medicaid y canceló la cobertura de 77, según Jennifer Ruffcorn, vocera del Departamento de Servicios Humanos de Texas.

Ohio ha revisado 65.000 inscritos en Medicaid, de los cuales 260 personas fueron dadas de baja del programa, dijo Stephanie O’Grady, vocera del Departamento de Medicaid de ese estado.

En Utah, 42 de los 8.000 inscritos identificados por la administración Trump perdieron su cobertura de Medicaid, dijo Becky Wickstrom, vocera del Departamento de Servicios Laborales estatal.

Al anunciar las revisiones, Robert F. Kennedy Jr., secretario del Departamento de Salud y Servicios Humanos (HHS), dijo: “Estamos reforzando la supervisión de las inscripciones para proteger el dinero de los contribuyentes y garantizar que estos programas vitales sirvan solo a quienes realmente cumplen con los requisitos de la ley”.

Leonardo Cuello, profesor de investigación en el Centro para Niños y Familias de la Universidad de Georgetown, indicó que las revisiones ordenadas por los Centros de Servicios de Medicare y Medicaid (CMS) eran innecesarias porque los estados verifican el estatus migratorio cuando las personas se inscriben.

“Es totalmente predecible que todas estas revisiones, que imponen una carga a los estados por parte del gobierno federal, no arrojen resultados”, dijo Cuello. “Los estados ya habían hecho las revisiones una vez, y los CMS solo los estaba obligando a verificar de nuevo la misma información. Hacer que los estados pasen por el mismo proceso burocrático dos veces es increíblemente ineficiente y una manera de malgastar dinero”.

Chris Krepich, vocero de los CMS, dijo en un comunicado a Ñî¹óåú´«Ã½Ò•îl Health News que las verificaciones en curso están confirmando la elegibilidad “de ciertos inscritos cuyo estatus no pudo ser confirmado mediante fuentes de datos federales”.

“Los CMS proporcionan a los estados informes periódicos para revisiones de seguimiento, y los estados son responsables de verificar de forma independiente la elegibilidad y tomar las medidas apropiadas de acuerdo con los requisitos federales”, agregó.

Sin embargo, los hallazgos compartidos con Ñî¹óåú´«Ã½Ò•îl Health News también sugieren que muchos de los inscritos, cuyo estatus la administración Trump dijo no poder confirmar, son ciudadanos de Estados Unidos.

O’Grady dijo que Ohio encontró que, de los 65.000 nombres enviados por el gobierno federal, el estado ya tenía información sobre 53.000 que confirmaba que eran ciudadanos y otros 11.000 con estatus migratorio adecuado para Medicaid.

Luego, los trabajadores de casos revisaron los 1.000 nombres restantes para evaluar su información o solicitar más detalles, dijo.

Los CMS no respondieron preguntas sobre los hallazgos de los estados analizados por Ñî¹óåú´«Ã½Ò•îl Health News ni proporcionaron información sobre las respuestas recibidas de los 50 estados y el Distrito de Columbia, a los que se les ordenó realizar las verificaciones.

La agencia tampoco respondió a una pregunta sobre si está enviando los nombres de las personas cuya cobertura de Medicaid fue cancelada a las autoridades federales de inmigración.

En junio, asesores de Kennedy ordenaron a los CMS compartir información sobre los inscritos en Medicaid con el Departamento de Seguridad Nacional (DHS), lo que provocó una demanda de algunos estados preocupados de que la administración usara la información para su campaña de deportaciones contra personas que viven en Estados Unidos sin autorización.

Un juez federal que los trabajadores del Servicio de Inmigración y Control de Aduanas (ICE) podían acceder solo a información sobre personas en el país sin autorización en las bases de datos de Medicaid de los estados que presentaron la demanda.

Los CMS siguen enviando a los estados listas de nombres al menos cada pocos meses, aunque funcionarios estatales dicen que las cifras han disminuido desde la primera tanda de envíos el verano pasado.

Las personas sin estatus legal no pueden acceder a cobertura de salud financiada con fondos federales, incluyendo Medicaid, Medicare y los planes de los mercados de la Ley de Cuidado de Salud a Bajo Precio (ACA). Medicaid sí reembolsa a los hospitales por brindar atención de emergencia a personas sin papeles si cumplen con los requisitos de ingresos y otros criterios del programa.

Siete estados y el Distrito de Columbia ofrecen cobertura de salud sin importar el estatus migratorio, financiando los programas con sus propios recursos.

En marzo de 2025, los CMS iniciaron revisiones financieras de esos programas. “Los CMS han identificado más de $1.800 millones en fondos federales que están siendo recuperados mediante devoluciones voluntarias y aplazamientos de pagos federales futuros de Medicaid”, dijo Krepich. No respondió cuánto se ha recuperado hasta ahora ni de qué estados.

El gasto total de Medicaid superó los $900.000 millones en el año fiscal 2024.

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And CEO Brad Meyer fears times will soon get worse for the clinic and its 21,000 patients. That’s because Nebraska is set to become the first state to require certain Medicaid enrollees to work or lose their coverage under new rules in President Donald Trump’s One Big Beautiful Bill Act.

“This will have a huge financial impact on us,” Meyer said. On May 1, seven months before the law requires, the state will begin imposing work requirements on eligible adult Medicaid enrollees.

Most of Bluestem’s patients are covered by the government program for people with low incomes or disabilities. Meyer estimates up to 15% of them may be kicked off Medicaid, which could cost his center about $600,000 a year. That could mean cutting services or staff.

Nationwide, about 17,000 federally funded community health centers like Bluestem . They’re bracing for fallout from the law Trump signed last year, which could cost the nonprofit health centers $32 billion collectively over five years, according to the Commonwealth Fund, a health research foundation.

Health centers receive annual federal grants but depend on Medicaid reimbursements for patient care as their largest source of revenue. The government insurance program covered about half of their roughly 33 million patients in 2024.

Commonwealth estimates that 5.6 million patients of health centers will lose Medicaid coverage over the next decade as most states enact work requirements — a provision of Trump’s law that requires nondisabled enrollees to work, volunteer, or perform another approved activity for at least 80 hours a month.

Most are expected to lose coverage not because they don’t work but because of paperwork errors, like failing to document their hours or verify that they qualify for an exemption.

Health center officials say there’s no easy way to make up for the lost revenue other than cutting staff or services, which would affect all their patients. The cuts will coincide with an expected increase in patients, as people who lose coverage turn to the clinics for low-cost care.

By law, health centers are required to treat all patients regardless of their ability to pay.

A Double Whammy

Overall, about 10 million fewer Americans will have insurance by 2034, the Congressional Budget Office estimates, both because of Trump’s law and congressional Republicans’ decision to scale back premium subsidies for Affordable Care Act health plans.

“We are incredibly worried,” said Jeffrey McKee, CEO of Community Health Centers of Burlington in Vermont. His clinics treat about 35,000 patients a year, nearly a third covered by Medicaid.

He predicts a surge in uninsured patients will cost another $3 million in lost revenue. That revenue crash could imperil street medicine programs and home care for patients 65 and older, he said.

In 2024, community health centers because of rising costs and the expiration of covid pandemic-era relief funds, according to a KFF analysis.

Centers with high rates of uninsured patients typically struggle more financially, while some centers are sustained through private donations.

People without insurance — who made up about 18% of all health center patients in 2024 — pay on a sliding scale. Those amounts are a fraction of what insurers pay.

The new Medicaid work requirements apply to Washington, D.C., and 40 states that expanded Medicaid eligibility under the ACA, and to adults with incomes up to 138% of the federal poverty level — $22,025 for a single person this year.

Republicans say the work requirements will nudge people into the workforce and help preserve Medicaid for children and people who are pregnant or have disabilities. Studies by KFF and others show most enrollees already work, go to school, or have a health condition that prevents them from working.

Nebraska Is First Up

The Trump administration approved Nebraska’s early launch of its work requirement program, which could affect about . State Medicaid officials say they plan to use state and national databases to check whether people are already working or meeting an exemption so that most won’t have to do anything to keep coverage. But thousands will need to prove they satisfy the requirements.

At Bluestem in Lincoln, Meyer worries many of his Medicaid patients won’t take the steps needed to keep coverage.

Angelisa Corum, 57, said she loves the care she has gotten from her regular doctor at Bluestem Health over the past dozen years, particularly in dealing with breast cancer. “I am cancer-free, and they helped me get through that,” she said.

She said the care was the same when she was covered by her husband’s commercial insurance through his employer and when she was on Medicaid while he wasn’t working.

The work requirements are just one part of the Republican law passed last year that could hurt the health centers. It also requires more frequent eligibility checks for adults enrolled under Medicaid expansion, which advocates say could also lead people to lose coverage. Many states now require eligibility checks only once a year.

The law also reduces overall federal Medicaid funding to states, which may prompt them to cut reimbursements to centers and other health providers.

The National Association of Community Health Centers, the largest advocacy group for the clinics, has tried to walk a tightrope, warning about impending cuts from the law while still working with the Trump administration. The group praised Congress for increasing base grant funding for health centers in the federal budget approved in January.

Kyu Rhee, CEO of the national association, said the clinics enjoy strong bipartisan support in Washington despite the Medicaid cuts.

He has met with Trump administration officials to discuss how health centers can play a role in keeping people from losing coverage due to work requirements. He said they can help meet other priorities of the administration’s, like improving American diets, expanding primary care, and focusing on chronic diseases — though it’s unclear how any of that would result in more funding.

To further show the reach of health centers, the association recently funded a study that found 52 million people visited the clinics over a three-year-period. “It makes a statement we serve a lot more Americans than those from just a single year,” Rhee said.

Health center officials are hopeful they will get some of the funding from the $50 billion Rural Health Transformation Program included in the GOP-passed law. States will begin spending the first tranche of that money this spring.

Rhee said he is encouraged that states will have technology to help tap into databases to verify many enrollees’ work status or health conditions to meet “medical frailty” rules that could help them avoid being disenrolled.

Others are less optimistic.

“Health centers are bracing for a major financial impact,” said Sara Rosenbaum, a health law and policy professor at George Washington University and Medicaid expert who co-authored the Commonwealth Fund study. “The way they cope is the same way health systems usually cope as they go through mass layoffs, site closures, and service reductions.”

Amanda Pears Kelly, CEO of Advocates for Community Health, a trade group representing 52 health centers, said health centers are also worried about rising costs, especially for prescription drugs. The impending financial challenges will make it more difficult to hire staff both in rural areas where doctors and nurses are scarce and in more populated areas, where competition for workers is more acute, she told Ñî¹óåú´«Ã½Ò•îl Health News.

“The challenge is health centers are being hit from every direction,” Pears Kelly said.

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But seven months later, findings from five states shared with Ñî¹óåú´«Ã½Ò•îl Health News show that the reviews have uncovered little evidence of a widespread problem.

Only U.S. citizens and some lawfully present immigrants are eligible for Medicaid, which covers health care costs for people with low incomes and disabilities, and the closely related Children’s Health Insurance Program. Both programs are administered by states.

Spokespeople from Pennsylvania’s and Colorado’s Medicaid agencies said, as of March, the states had found no one who needed to be terminated from Medicaid. That was after checking a combined 79,000 names.

Texas has reviewed records of more than 28,000 Medicaid enrollees at the Trump administration’s request and terminated coverage for 77 of them, according to Jennifer Ruffcorn, a spokesperson for the Texas Department of Human Services.

Ohio has checked 65,000 Medicaid enrollees, of which 260 people were disenrolled from the program, said Stephanie O’Grady, a spokesperson for the Ohio Department of Medicaid.

In Utah, 42 of the 8,000 enrollees identified by the Trump administration had their Medicaid coverage terminated, said Becky Wickstrom, a spokesperson for the state’s Department of Workforce Services.

In announcing the reviews, Health and Human Services Secretary Robert F. Kennedy Jr. said: “We are tightening oversight of enrollment to safeguard taxpayer dollars and guarantee that these vital programs serve only those who are truly eligible under the law.”

Leonardo Cuello, a research professor at Georgetown University’s Center for Children and Families, said the reviews ordered by the federal Centers for Medicare & Medicaid Services were unneeded because states check immigration status when people sign up.

“It is entirely predictable that all of these burdensome reviews that the federal government is forcing upon states would yield no pay dirt,” Cuello said. “The states had already done the reviews once, and CMS was just making them reverify the same information they had already checked. Making states go through the same bureaucratic process twice is incredibly wasteful and inefficient.”

CMS spokesperson Chris Krepich said in a statement to Ñî¹óåú´«Ã½Ò•îl Health News that the ongoing checks are verifying eligibility “for certain enrollees whose status could not be confirmed through federal data sources.”

“CMS provides states with regular reports for follow-up review, and states are responsible for independently verifying eligibility and taking appropriate action consistent with federal requirements,” he said.

But the findings shared with Ñî¹óåú´«Ã½Ò•îl Health News also suggest that many of the enrollees whose eligibility the Trump administration said it could not confirm are indeed U.S. citizens. O’Grady said Ohio found that, of the 65,000 names referred by the federal government, the state already had information on 53,000 confirming them as citizens and an additional 11,000 showing appropriate immigration status for Medicaid.

Caseworkers then worked on the remaining 1,000 names to review their information or reach out for more details, she said.

CMS did not answer questions about the findings from the states sampled by Ñî¹óåú´«Ã½Ò•îl Health News or provide information about responses it received from all 50 states and the District of Columbia, which were instructed to perform verification checks.

The agency also did not respond to a question about whether it’s forwarding the names of those whose Medicaid coverage was terminated to federal immigration officials.

In June, advisers to Kennedy ordered CMS to share information about Medicaid enrollees with the Department of Homeland Security, prompting a lawsuit by some states alarmed that the administration would use the information for its deportation campaign against residents living in the U.S. without authorization.

A federal judge that Immigration and Customs Enforcement workers could access information only about people in the country unlawfully in the Medicaid databases of the states that sued.

CMS continues to send states lists of names at least every few months, though state officials say the numbers have declined since the first batch last summer.

People without legal status are ineligible for federally funded health coverage, including Medicaid, Medicare, and plans through the Affordable Care Act marketplaces. Medicaid does reimburse hospitals for providing emergency care to people without legal status if they meet income and other program requirements.

Seven states and the District of Columbia provide health coverage regardless of immigration status, funding the programs with their own money.

In March 2025, CMS began financial reviews of those programs. “CMS has identified over $1.8 billion in federal funds that are being recouped through voluntary returns and deferrals of future federal Medicaid payments,” Krepich said. He did not answer how much has been collected so far or from which states.

Medicaid’s overall spending topped $900 billion in fiscal year 2024.

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But when Quinn chipped a tooth and it became infected, she could not find a dentist near her home who would accept her government health coverage and was taking new patients.

She went to an emergency room, receiving painkillers and antibiotics, but she remained in agonizing pain weeks later and paid a dentist $200 to extract the tooth.

Years later, it still hurts to chew on that side, she said, but Quinn — a 34-year-old who has four children and, with her husband, earns about $30,000 a year — still can’t find a dentist nearby.

“You should be able to get dental care,” she said, “because at the end of the day dental care is health care.”

The federal government has long required states to offer dental coverage for children enrolled in Medicaid, the joint state-federal health program for people who are low-income or disabled. Paying for adults’ dental care, though, is optional for states.

In recent years, several states have opted to expand the coverage offered by their Medicaid programs, seeking to boost access in recognition of its importance to overall health. So far, increasing adult dental care is a work in progress: In a sampling of six of those states by Ñî¹óåú´«Ã½Ò•îl Health News, fewer than 1 in 4 adults on Medicaid see a dentist at least once a year.

But under congressional Republicans’ One Big Beautiful Bill Act, which President Donald Trump signed into law last year, the federal government is expected to reduce Medicaid spending by more than $900 billion over the next decade. The range from about $184 million for Wyoming to about $150 billion for California.

State Medicaid programs typically expand or reduce benefits depending on their finances, and such massive federal cuts could force some to shrink or eliminate what they offer, including dental benefits.

“We will lose all the gains we have made,” said Shillpa Naavaal, a dental policy researcher at Virginia Commonwealth University in Richmond.

Tennessee’s Medicaid program, for instance, spent nearly $64 million on its dental coverage in 2024 and saw a 20% decrease in dental-related ER visits, said Amy Lawrence, the program’s spokesperson.

But under the new law, Tennessee is projected to lose about $7 billion in federal funding over the next decade.

As of last year, 38 states and the District of Columbia offered enhanced dental benefits for adult Medicaid beneficiaries, according to the American Dental Association. Most of the others offer limited or emergency-only care. Alabama is the only state that offers no dental coverage for adult beneficiaries.

Since 2021, 18 states have enhanced their coverage to include checkups, X-rays, fillings, crowns, and dentures, while loosening annual dollar caps for benefits.

Use of dental benefits in states with the enhanced benefits is greater than in states with only limited or emergency coverage, though still low overall, according to with the latest data as of December. No more than a third of adult Medicaid recipients saw a dentist in 2022 in any state.

To review more recent progress, Ñî¹óåú´«Ã½Ò•îl Health News asked one-third of the states that have expanded their benefits in the past five years for their most recent data on the percentage of adults on Medicaid who visit a dentist at least once a year:

• Maryland — 22% (in 2024)
• Oklahoma — 16% (in 2025)
• Maine — 13% (in 2025)
• New Hampshire — 19% (in 2025)
• Tennessee — 16% (in 2024)
• Virginia — 21% (in 2025)

In comparison, about 50% to 60% of adults with private dental coverage see a dentist at least once a year, according to the ADA.

Nationwide, 41% of dentists reported participating in Medicaid in 2024, a share that has remained stable over the past decade despite the dental benefit expansions in many states, the ADA says. Many participating dentists, though, limit the number of Medicaid enrollees they treat, and some will not accept new patients on Medicaid.

Reimbursement rates have not kept up with costs, deterring dentists from accepting Medicaid, said Marko Vujicic, chief economist and vice president at the ADA Health Policy Institute.

Because of a lack of dentists who take Medicaid in southwestern Virginia, the Appalachian Highlands Community Dental Center in Abingdon sees patients who travel more than two hours for care — and must turn many away, said Elaine Smith, its executive director.

The center’s seven residents treated about 5,000 patients last year, most of them on Medicaid. About 3,000 people are on its waitlist, waiting up to a year to be seen.

“It’s sad because they have the means now to see a dentist, but they still don’t have a dental home,” Smith said.

Low-income adults face other barriers to dental care, including a lack of transportation, child care, or time off work, she said.

The inability to see a dentist has consequences broader than tooth pain. Poor dental health can contribute to a host of other significant health problems, such as heart disease . It can also make it harder to do things like apply for jobs and generally lead a healthy life.

Robin Mullins, 49, who has been off and on Medicaid since 2013, said a lack of regular dental visits contributed to her losing her bottom teeth. Unable to find a dentist near her home in rural Clintwood, Virginia, she drives almost 90 minutes to Smith’s clinic — that is, when she can afford to get time away from driving for DoorDash or find help watching her daughter, who has special needs.

She gets by with partial dentures but misses her natural teeth, she said. “It’s absolutely horrible, as you can’t chew your food properly.”

In New Hampshire, though, the challenges have more to do with low demand than a low supply of dentists, said Tom Raffio, chief executive of Northeast Delta Dental, which manages the state’s Medicaid dental program. The company has added new dentists to its list of participating providers, along with two mobile dental units that traverse the state, he said.

Raffio said Northeast Delta Dental also has publicized the state benefits using radio advertising and social media, among other efforts.

Until 2023, New Hampshire Medicaid covered only dental emergencies.

“Culturally, it’s going to take a while,” he said, “as people just are used to not going to the dentist, or going to the ER when have dental pain.”

Brooks Woodward, dental director at Baltimore-based Chase Brexton Health Care, called Maryland’s rate of roughly 1 in 5 adults on Medicaid seeing a dentist in 2024 “pretty good” considering the benefits had been enhanced only since 2023.

Woodward said many adults on Medicaid believe that you go to a dentist only when you’re in pain. “They’ve always just not gone to the dentist, and that’s just the way they had it in their life,” he said.

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Ponerlos al tanto de estos riesgos podría disuadirlos de inscribirse en un programa llamado Medicaid de Emergencia, a través del cual el gobierno reembolsa a los hospitales el costo de la atención médica de urgencias a inmigrantes que no califican para la cobertura regular de Medicaid.

Pero si los hospitales no revelan que la información personal de los pacientes se comparte con las autoridades migratorias federales, estos podrían no saber que su cobertura médica los expone al riesgo de ser localizados por el Servicio de Inmigración y Control de Aduanas (ICE).

“Si los hospitales le dicen a la gente que sus datos de Medicaid de Emergencia se compartirán con el ICE, es previsible que muchos inmigrantes simplemente dejen de buscar tratamiento médico de emergencia”, afirmó , profesor investigador del Centro para Niños y Familias de la Universidad de Georgetown.

“La mitad de los casos de Medicaid de Emergencia son partos de bebés ciudadanos estadounidenses. ¿Queremos que esas madres eviten ir al hospital cuando comienzan el trabajo de parto?”, agregó.

Durante más de una década, hospitales y estados aseguraron a los pacientes que su información personal, incluyendo su estatus migratorio y la dirección de su casa, no sería compartida con funcionarios de inmigración cuando solicitaban cobertura médica federal.

Un garantizaba que la agencia no usaría información de solicitudes de cobertura médica para actividades de control migratorio.

Pero eso cambió el año pasado, luego de que el presidente Donald Trump regresara a la Casa Blanca y ordenara una de las campañas de represión migratoria más agresivas de la historia reciente. Su administración empezó a canalizar datos de varias agencias gubernamentales al Departamento de Seguridad Nacional, incluida enviada al Servicio de Impuestos Internos (IRS).

Los Centros de Servicios de Medicare y Medicaid (CMS, por sus siglas en inglés), que forman parte del Departamento de Salud y Servicios Humanos, aceptaron en la primavera pasada darle a ICE acceso directo a una base de datos de Medicaid que incluye las direcciones y el estatus migratorio de las personas inscritas.

Veintidós estados, todos gobernados por demócratas excepto uno, presentaron demandas para de intercambio de datos de Medicaid, que no había sido anunciado formalmente por el gobierno hasta que un juez federal ordenó hacerlo el verano pasado. El juez que, en esos estados, ICE solo podría acceder a la información de la base de datos de Medicaid correspondiente a personas que están en el país de forma irregular.

Ñî¹óåú´«Ã½Ò•îl Health News contactó a más de una docena de hospitales y asociaciones hospitalarias en estados y ciudades que han sido objeto de operativos del ICE. Muchos se negaron a comentar si, luego del fallo judicial, habían actualizado sus políticas de divulgación.

De los que respondieron, ninguno dijo que estuviera advirtiendo directamente a los pacientes que su información personal podía ser compartida con el ICE si solicitaban cobertura de Medicaid.

“No ofrecemos asesoramiento legal sobre el intercambio de datos entre agencias del gobierno federal”, escribió por correo electrónico Aimee Jordon, vocera del sistema hospitalario M Health Fairview, con sede en Minneapolis. “Recomendamos a los pacientes que tengan preguntas sobre prestaciones o inquietudes relacionadas con temas migratorios que busquen orientación en los recursos estatales adecuados y con asesores legales calificados”.

Información sobre las solicitudes

En algunos estados, las solicitudes de Medicaid de Emergencia  preguntan específicamente por el estatus migratorio del paciente, pero aseguran a las personas que su información se mantendrá protegida y fuera del alcance de los funcionarios de inmigración.

Por ejemplo, hasta el 3 de febrero, la solicitud de California aún incluía un texto en el que se informaba a los solicitantes que su información migratoria era “confidencial”.

“Solo la usamos para determinar si califica para un seguro médico”, explica el formulario de 44 páginas que el programa estatal de Medicaid, conocido como Medi-Cal, publicó en .

Anthony Cava, vocero del Departamento de Servicios de Atención Médica de California, dijo en una declaración que la agencia, que supervisa Medi-Cal, se asegurará de que los californianos tengan información precisa sobre la privacidad de sus datos, “incluyendo, si es necesario, la revisión de otras publicaciones”.

Hasta finales de enero, el sitio web de Medicaid en Utah también aseguraba que el programa de Medicaid de Emergencia no compartía información con funcionarios migratorios. Después de que Ñî¹óåú´«Ã½Ò•îl Health News contactara a la agencia estatal, la vocera Kolbi Young anunció el 23 de enero que esa información sería retirada de inmediato. Fue eliminada ese mismo día.

El sistema hospitalario Oregon Health & Science University, con sede en Portland, ofrece a pacientes inmigrantes un documento de desarrollado por el programa estatal de Medicaid para quienes tienen dudas sobre el uso de su información. El documento no indica de manera explícita que la información de quienes se inscriben en Medicaid será compartida con el ICE.

Los hospitales dependen del Medicaid de Emergencia para que les reembolsen el tratamiento de personas que cumplirían con los requisitos para Medicaid si no fuera por su estatus migratorio, ya sea que estén en el país sin papeles o dispongan de una presencia legal temporal, como visas de estudiante o de trabajo. Esta cobertura solo paga por atención médica de urgencia y servicios relacionados con el embarazo. Por lo general, representantes del hospital ayudan a los pacientes a presentar la solicitud mientras están en el hospital.

El programa principal de Medicaid, que cubre una gama mucho más amplia de servicios para más de 77 millones de personas con bajos ingresos o discapacidades, no cubre a quienes están en el país sin autorización.

Por lo tanto, examinar los registros de inscripción en el Medicaid de Emergencia es la forma más efectiva que tienen los funcionarios de deportación para identificar a los inmigrantes, incluidos aquellos que podrían no residir legalmente en los Estados Unidos.

Rich Danker, vocero del Departamento de Salud y Servicios Humanos, dijo por correo electrónico que los CMS —que supervisa Medicaid, un programa conjunto federal y estatal— están compartiendo datos con el ICE tras la decisión del juez. Pero no explicó cómo se asegura de compartir solo información sobre personas sin residencia legal, como exige el fallo judicial.

Dado que el ICE ahora tiene acceso directo a la información personal de millones de personas inscritas en Medicaid, los hospitales —aunque “están en una posición muy difícil”— deberían ser transparentes sobre los cambios, dijo Sarah Grusin, , un grupo de defensa legal.

“Deben decirle a la gente que el juez ha autorizado compartir la información —incluida sus direcciones— en el caso de quienes no residen legalmente en el país”, afirmó. “Una vez enviada, esa información ya no puede protegerse para evitar que sea divulgada”.

Grusin dijo que recomienda a las familias que midan la importancia de buscar atención médica frente al riesgo de que sus datos sean compartidos con el ICE.

“Queremos dar información sincera y honesta, incluso si eso significa que las personas se vayan a ver obligadas a tomar decisiones muy difíciles”, destacó.

Quienes se hayan inscrito anteriormente en Medicaid o cuya dirección pueda encontrarse fácilmente en internet deben asumir que los funcionarios de inmigración ya conocen esos datos, agregó.

Medicaid de Emergencia

La cobertura de Medicaid de Emergencia se estableció a mediados de la década de 1980, cuando una ley federal comenzó a exigir que los hospitales atendieran y estabilizaran a cualquier persona que llegara con una condición que pusiera en riesgo su vida.

En 2023, el gasto del gobierno federal en Medicaid de Emergencia fue de casi $4.000 millones, lo que representa aproximadamente federal en Medicaid.

Los estados envían informes mensuales al gobierno federal con información detallada sobre quiénes se inscriben en Medicaid y qué servicios reciben.

El fallo judicial de diciembre limitó lo que los CMS pueden compartir con el ICE a datos básicos, incluyendo direcciones, de los afiliados a Medicaid en los 22 estados que llevaron a la Justicia el acuerdo de intercambio de datos. El ICE no tiene permitido acceder a información sobre los servicios médicos que reciben las personas, según la orden del juez.

El juez también prohibió a la agencia compartir los datos de ciudadanos estadounidenses o inmigrantes con residencia legal en esos estados.

En los otros 28 estados, los funcionarios de deportación tienen acceso a la información personal de los inscritos en Medicaid.

La agencia federal de salud no ha aclarado cómo garantiza que la información sobre ciudadanos y residentes legales de ciertos estados no sea compartida con el ICE. Pero expertos en Medicaid dicen que sería casi imposible separar esos datos, lo que genera dudas sobre si el gobierno de Trump está cumpliendo con la orden judicial.

Los esfuerzos de la administración Trump por deportar a inmigrantes que viven en el país sin autorización han afectado a familias inmigrantes que buscan atención de salud.

Cerca de un tercio de los adultos nacidos fuera de los Estados Unidos dijeron haber evitado o pospuesto atención médica en el último año, según una encuesta de publicada en noviembre. (KFF es una organización sin fines de lucro dedicada a la información sobre salud, que incluye a Ñî¹óåú´«Ã½Ò•îl Health News).

Bethany Pray, directora legal y de políticas del Colorado Center on Law and Policy, advirtió que el hecho de compartir datos de Medicaid con funcionarios de deportación obligará a muchas familias a tomar decisiones aún más difíciles.

“Esto es muy preocupante”, opinó Pray. “La gente no debería tener que elegir entre dar a luz en un hospital y preguntarse si eso significa correr el riesgo de enfrentar la deportación”.

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Warning patients could deter them from signing up for a program called Emergency Medicaid, through which the government reimburses hospitals for the cost of emergency treatment for immigrants who are ineligible for standard Medicaid coverage.

But if hospitals don’t disclose that the patients’ information is shared with federal law enforcement, they might not know that their medical coverage puts them at risk of being located by Immigration and Customs Enforcement.

“If hospitals tell people that their Emergency Medicaid information will be shared with ICE, it is foreseeable that many immigrants would simply stop getting emergency medical treatment,” said , a research professor at Georgetown University’s Center for Children and Families. “Half of the Emergency Medicaid cases are for the delivery of U.S. citizen babies. Do we want these mothers avoiding the hospital when they go into labor?”

For more than a decade, hospitals and states have assured patients that their personal information, including their home addresses and immigration status, would not be shared with immigration enforcement officials when they apply for federal health care coverage. guaranteed the agency would not use information from health coverage applications for enforcement activities.

But that changed last year, after President Donald Trump returned to the White House and ordered one of the most aggressive immigration crackdowns in recent history. His administration began funneling data from a variety of government agencies to the Department of Homeland Security, including filed with the IRS.

The Centers for Medicare & Medicaid Services, part of the Department of Health and Human Services, agreed last spring to give ICE officials direct access to a Medicaid database that includes enrollees’ addresses and citizenship status.

Twenty-two states, all but one led by Democratic governors, the Medicaid data-sharing agreement, which the administration did not formally announce until a federal judge ordered it to do so last summer. The judge that in those states, ICE could access information in the Medicaid database only about people in the country unlawfully. Ñî¹óåú´«Ã½Ò•îl Health News contacted more than a dozen hospitals and hospital associations in states and cities that have been targets of ICE sweeps. Many declined to comment on whether they’ve updated their disclosure policies after the ruling.

Of those that responded, none said they are directly warning patients that their personal information may be shared with ICE when they apply for Medicaid coverage.

“We do not provide legal advice about federal government data-sharing between agencies,” Aimee Jordon, a spokesperson for M Health Fairview, a Minneapolis-based hospital system, said in an email to Ñî¹óåú´«Ã½Ò•îl Health News. “We encourage patients with questions about benefits or immigration-related concerns to seek guidance from appropriate state resources and qualified legal counsel.”

Information on Applications

Some states’ Emergency Medicaid applications specifically ask for a patient’s immigration status — and still assure people that their information will be kept secure and out of the hands of immigration enforcement officials.

For example, as of Feb. 3, California’s application still included language advising applicants that their immigration information is “confidential.”

“We only use it to see if you qualify for health insurance,” states the 44-page form, which the state’s Medicaid program, known as Medi-Cal, in January.

California Department of Health Care Services spokesperson Anthony Cava said in a statement that the agency, which oversees Medi-Cal, will “ensure that Californians have accurate information on the privacy of their data, including by revising additional publications as necessary.”

Until late January, Utah’s Medicaid website also claimed its Emergency Medicaid program did not share its information with immigration officials. After Ñî¹óåú´«Ã½Ò•îl Health News contacted the state agency, Kolbi Young, a spokesperson, said Jan. 23 that the language would be taken down immediately. It was removed that day.

Oregon Health & Science University, a hospital system based in Portland, offers immigrant patients developed by the state Medicaid program for those with concerns about how their information might be used. The document does not directly say that Medicaid enrollees’ information is shared with ICE officials.

Hospitals rely on Emergency Medicaid to reimburse them for treating people who would qualify for Medicaid if not for their citizenship status — those in the country illegally and lawfully present immigrants, such as those with a student or work visa. The coverage pays only for emergency medical and pregnancy care. Typically, hospital representatives help patients apply while they are still in the medical facility.

The main Medicaid program, which covers a much broader range of services for over 77 million low-income and disabled people, does not cover people living in the country illegally.

Examining Emergency Medicaid enrollment is the most obvious way, then, for deportation officials to identify immigrants, including those who might not reside in the U.S. lawfully.

HHS spokesperson Rich Danker said in an email that CMS — which oversees Medicaid, a joint state-federal program — is sharing data with ICE after the judge’s ruling. But he would not answer how the agency is ensuring it is sharing information only on people who are not lawfully present, as the judge required.

With ICE now getting direct access to the personal information of millions of Medicaid enrollees, hospitals — while “definitely in a tough position” — should be up-front about the changes, said Sarah Grusin, at the National Health Law Program, an advocacy group.

“They need to be telling people that the judge has permitted sharing of information, including their address, for people who are not lawfully residing,” she said. “Once this information is submitted, you can’t protect it from disclosure at this point.”

Grusin said she advises families to weigh the importance of seeking medical care against the risk of having their information shared with ICE.

“We want to give candid, honest information even if it means the decision people have to make is really hard,” she said.

Those who have previously enrolled in Medicaid or can easily search their address online should assume that immigration officials already have their information, she added.

Emergency Medicaid

Emergency Medicaid coverage was established in the mid-1980s, when a federal law began requiring hospitals to treat and stabilize all patients who show up at their doors with a life-threatening condition.

Federal government spending on Emergency Medicaid accounted for nearly $4 billion in 2023, or of total federal spending on Medicaid.

States send monthly reports to the federal government with detailed information about who enrolls in Medicaid and what services they receive. The judge’s ruling in December limited what CMS can share with ICE to only basic information, including addresses, about Medicaid enrollees in the 22 states that sued over the data-sharing arrangement. ICE officials are not supposed to access information about the medical services people receive, per the judge’s order.

The judge also prohibited the agency from sharing the data of U.S. citizens or lawfully present immigrants from those states.

Deportation officials have access to personal Medicaid information of all enrollees in the remaining 28 states.

The federal health agency has not clarified how it is ensuring that certain states’ information on citizens and legal residents is not shared with ICE. But Medicaid experts say it would be nearly impossible for the agency to separate the data, raising questions about whether the Trump administration is complying with the judge’s order.

The Trump administration’s efforts to deport immigrants living in the country illegally have had implications on immigrant families seeking care. About a third of adult immigrants reported skipping or postponing health care in the past year, according to a released in November. (KFF is a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.)

Bethany Pray, the chief legal and policy officer at the Colorado Center on Law and Policy, warned that sharing Medicaid data directly with deportation officials will force even tougher decisions upon some families.

“This is very concerning,” Pray said. “People should not have to choose between giving birth in a hospital and wondering if that means they risk deportation.”

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It was a contrast to how Cole, 18, spent part of the 2024 holiday season. She was in the hospital — a frequent occurrence with sickle cell disease, a genetic condition that damages oxygen-carrying red blood cells and for years caused debilitating pain in her arms and legs. Flare-ups often would force her to cancel plans or miss school.

“With sickle cell it hurts every day,” she said. “It might be more tolerable some days, but it’s a constant thing.”

In May, Cole completed a several-months-long that helps reprogram the body’s stem cells to produce healthy red blood cells.

She was one of the first Medicaid enrollees nationally to benefit from a in which the federal government negotiates the cost of a cell or gene therapy with pharmaceutical companies on behalf of state Medicaid programs — and then holds them accountable for the treatment’s success.

Under the agreement, participating states will receive “discounts and rebates” from the drugmakers if the treatments don’t work as promised, according to the Centers for Medicare & Medicaid Services.

That’s a stark difference from how Medicaid and other health plans typically pay for drugs and therapies — the bill usually gets paid regardless of the treatments’ benefits for patients. But CMS has not disclosed the full terms of the contract, including how much the drug companies will repay if the therapy doesn’t work.

The treatment Cole received offers a potential cure for many of the 100,000 primarily Black Americans with sickle cell disease, which is estimated to shorten lifespans by more than two decades. But the treatment’s cost presents a steep financial challenge for Medicaid, the joint state-federal government insurer for people with low incomes or disabilities. Medicaid covers roughly half of Americans with the condition.

There are two gene therapies approved by the Food and Drug Administration on the market, one costing $2.2 million per patient and the other $3.1 million, with neither cost including the expense of the long hospital stay.

The CMS program is one of the rare health initiatives started under President Joe Biden and continued during the Trump administration. The Biden administration with the two manufacturers, Vertex Pharmaceuticals and Bluebird Bio, in December 2024, opening the door for states to join voluntarily.

“This model is a game changer,” Mehmet Oz, the CMS administrator, said announcing that 33 states, Washington, D.C., and Puerto Rico had signed onto the initiative.

Asked for further details on the contracts, Catherine Howden, a CMS spokesperson, said in a statement that the terms of the agreements are “confidential and have only been disclosed to state Medicaid agencies.”

“Tackling the high cost of drugs in the United States is a priority of the current administration,” the statement said.

Citing confidentiality, two state Medicaid directors and the two manufacturers declined to reveal the financial terms of agreements.

New Therapies

The gene therapies, approved for people 12 or older with sickle cell disease, offer a chance to live without pain and complications, which can include strokes and organ damage, and avoid hospitalizations, emergency room visits, and other costly care. The Biden administration estimated that sickle cell care already costs the health system almost $3 billion a year.

With many more expensive gene therapies on the horizon, the cost of the sickle cell therapies presages financial challenges for Medicaid. Hundreds of cell and gene therapies are in clinical trials, and dozens could get federal approval in the next few years.

If the sickle cell payment model works, it will probably lead to similar arrangements for other pricey therapies, particularly for those that treat rare diseases, said Sarah Emond, president and CEO of the Institute for Clinical and Economic Review, an independent research institute that evaluates new medical treatments. “This is a worthy experiment,” she said.

Setting up payment for drugs based on outcomes makes sense when dealing with high treatment costs and uncertainty about their long-term benefits, Emond said.

“The juice has to be worth the squeeze,” she said.

Clinical trials for the gene therapies included fewer than 100 patients and followed them for only two years, leaving some state Medicaid officials eager for reassurance they were getting a good deal.

“What we care about is whether services actually improve health,” said Djinge Lindsay, chief medical officer for the Maryland Department of Health, which runs the state’s Medicaid program. Maryland is expected to begin accepting patients for the new sickle cell program this month.

Medicaid is already required to cover almost all FDA-approved drugs and therapies, but states have leeway to limit access by restricting which patients are eligible, setting up a lengthy prior authorization process, or requiring enrollees to first undergo other treatments.

While the gene therapy treatments are limited to certain hospitals around the country, state Medicaid officials say the federal model means more enrollees will have access to the therapies without other restrictions.

The manufacturers also pay for fertility preservation such as freezing reproductive cells, which could be damaged by chemotherapy during the treatment. Typically, Medicaid doesn’t cover that cost, said Margaret Scott, a principal with the consulting firm Avalere Health.

Emond said pharmaceutical companies were interested in the federal deal because it could lead to quicker acceptance of the therapy by Medicaid, compared with signing individual contracts with each state.

States are attracted to the federal program because it offers help monitoring patients in addition to negotiating the cost, she said. Despite some secrecy around the new model, Emond said she expects a federally funded evaluation will track the number of patients in the program and their results, allowing states to seek rebates if the treatment is not working.

The program could run for as long as 11 years, according to CMS.

“This therapy can benefit many sickle cell patients,” said Edward Donnell Ivy, chief medical officer for the Sickle Cell Disease Association of America.

He said the federal model will help more patients access the treatment, though he noted utilization will depend in part on the limited number of hospitals that offer the multimonth therapy.

Hope for Sickle Cell Patients

Before gene therapy, the only potential cure for sickle cell patients was a bone marrow transplant — an option available only to those who could find a suitable donor, about 25% of patients, Ivy said. For others, lifelong management includes medications to reduce the disease’s effects and manage pain, as well as blood transfusions.

About 30 of Missouri’s 1,000 Medicaid enrollees with sickle cell disease will get the therapy in the first three years, said Josh Moore, director of the state’s Medicaid program. So far, fewer than 10 enrollees have received it since the state began offering it in 2025, he said.

Less than a year into the federal program, Moore said it’s too early to tell its rate of success — defined as an absence of painful episodes that lead to a hospital visit. But he hopes it will be close to the 90% rate seen over the course of a couple of years in clinical trials.

Moore said the federal program based on how well the treatment works was preferred over cutting fees for a new and promising therapy, which would put the manufacturers’ ability to develop new drugs at risk. “We want to be good stewards of taxpayer dollars,” he said.

He declined to comment on how much the state may save from the arrangement or disclose other details, such as how much the drug companies might have to pay back, citing confidentiality of the contracts.

Lately Cole, who underwent gene therapy at St. Louis Children’s Hospital, has been able to focus on her hobbies — playing video games, drawing, and painting – and earning her high school diploma.

She said she was glad to get the treatment. The worst part was the chemotherapy, she said, which left her unable to talk or eat — and entailed getting stuck with needles.

She said that her condition is “way better” and that she has had no pain episodes leading to a hospital stay since completing the therapy last spring. “I’m just grateful I was able to get it.”

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Fue muy diferente a la temporada navideña de 2024, cuando estuvo hospitalizada, algo frecuente debido a la anemia falciforme, una enfermedad genética que daña los glóbulos rojos encargados de transportar oxígeno, y que durante años le causó un dolor incapacitante en brazos y piernas. Las crisis solían obligarla a cancelar planes o faltar a clases.

“Con la anemia falciforme te duele todos los días”, dijo. “Hay días que se tolera más, pero siempre está presente”.

En mayo, Cole completó un que duró varios meses y que reprograma las células madre del cuerpo para que produzcan glóbulos rojos saludables.

Fue una de las primeras personas inscritas en Medicaid en todo el país en beneficiarse de en el que el gobierno federal negocia con las farmacéuticas el costo de una terapia celular o génica en nombre de los programas estatales de Medicaid, y luego las hace responsables del éxito del tratamiento.

Según los Centros de Servicios de Medicare y Medicaid (CMS, por sus siglas en inglés), los estados participantes recibirán “descuentos y reembolsos” por parte de los fabricantes si los tratamientos no funcionan como se prometió.

Eso representa un cambio importante con respecto a cómo Medicaid y otros planes de salud suelen pagar los medicamentos y terapias: normalmente se paga la factura sin importar si el tratamiento beneficia o no al paciente.

Sin embargo, los CMS no han revelado los términos completos del contrato, incluyendo cuánto dinero deberán devolver las farmacéuticas si la terapia no resulta efectiva.

El tratamiento que recibió Cole ofrece una posible cura para muchas de las 100.000 personas —en su mayoría negras no hispanas— que viven con anemia falciforme en Estados Unidos, una enfermedad que se estima que acorta la esperanza de vida en más de dos décadas.

Pero su alto costo supone un gran reto financiero para Medicaid, el programa gerenciado por los gobiernos estatales y el federal que ofrece seguro médico a personas con bajos ingresos o discapacidades. Medicaid cubre aproximadamente a la mitad de quienes viven con esta enfermedad en el país.

Actualmente hay dos terapias génicas aprobadas por la Administración de Alimentos y Medicamentos (FDA, por sus siglas en inglés), con costos de $2,2 millones por paciente en un caso y $3,1 millones en el otro, sin incluir el gasto de la hospitalización prolongada que requieren.

Este programa de los CMS es una de las pocas iniciativas de salud que comenzaron durante la administración del presidente Joe Biden y continuaron bajo el gobierno del presidente Donald Trump. La administración Biden con los dos fabricantes, Vertex Pharmaceuticals y Bluebird Bio, en diciembre de 2024, abriendo la puerta para que los estados se unieran voluntariamente.

“Este modelo cambia las reglas del juego”, dijo Mehmet Oz, administrador de los CMS, en emitido en julio al anunciar que 33 estados, Washington, D.C., y Puerto Rico se habían sumado a la iniciativa.

Consultada por más detalles sobre los contratos, Catherine Howden, vocera de los CMS, dijo en un comunicado que los términos de los acuerdos son “confidenciales y solo se han compartido con las agencias estatales de Medicaid”.

“Enfrentar el alto costo de los medicamentos en Estados Unidos es una prioridad de la actual administración”, agregó.

Debido a esa confidencialidad, tanto dos directores estatales de Medicaid como las farmacéuticas se negaron a divulgar los términos financieros de los acuerdos.

Nuevas terapias

Las terapias génicas, aprobadas para personas de 12 años o más con anemia falciforme, ofrecen la posibilidad de vivir sin dolor ni complicaciones como derrames cerebrales o daño a órganos, y sin necesidad de hospitalizaciones, visitas a salas de emergencia u otros cuidados costosos. La administración Biden estimó que la atención médica de esta enfermedad ya cuesta al sistema de salud casi $3.000 millones al año.

Con muchas otras terapias génicas caras en camino, el costo de las terapias para la anemia falciforme anticipa los desafíos financieros que enfrentará Medicaid. Hay cientos de terapias celulares y génicas en ensayos clínicos, y decenas podrían recibir aprobación federal en los próximos años.

Si este modelo de pago para la anemia falciforme funciona, probablemente se adoptarán acuerdos similares para otras terapias costosas, especialmente las dirigidas a enfermedades raras, dijo Sarah Emond, presidenta y directora ejecutiva del Instituto para la Revisión Clínica y Económica (ICER, por sus siglas en inglés), una organización de investigación independiente que evalúa nuevos tratamientos médicos. “Este es un experimento valioso”, señaló.

Establecer un modelo de pago basado en resultados tiene sentido cuando se trata de tratamientos costosos y aún no se conocen bien sus beneficios a largo plazo, explicó Emond.

“El beneficio tiene que justificar el enorme esfuerzo”, dijo.

Los ensayos clínicos para estas terapias incluyeron a menos de 100 pacientes, a los que siguieron por solo dos años, lo que deja a algunos funcionarios estatales de Medicaid buscando garantías de que están haciendo una buena inversión.

“Nos importa si los servicios realmente mejoran la salud”, dijo Djinge Lindsay, directora médica del Departamento de Salud de Maryland, que administra el programa estatal de Medicaid. Se espera que Maryland comience a aceptar pacientes para el nuevo programa este mes.

Medicaid ya está obligado a cubrir casi todos los medicamentos y terapias aprobados por la FDA, pero los estados tienen cierto margen para limitar el acceso al establecer criterios sobre quién es elegible, requerir procesos de autorización previa extensos o exigir que los beneficiarios prueben primero otros tratamientos.

Aunque las terapias génicas solo están disponibles en ciertos hospitales del país, funcionarios estatales afirman que el modelo federal permitirá que más personas inscritas en Medicaid accedan al tratamiento sin otras restricciones.

Los fabricantes también cubren los costos de preservar la fertilidad, como congelar células reproductivas, que pueden verse afectadas por la quimioterapia durante el tratamiento. Por lo general, Medicaid no cubre ese costo, explicó Margaret Scott, asesora principal de la firma de consultoría Avalere Health.

Emond dijo que las farmacéuticas están interesadas en el acuerdo federal porque podría agilizar la aceptación del tratamiento por parte de Medicaid, en comparación con negociar contratos individuales con cada estado.

Los estados se sienten atraídos por el programa federal porque también ofrece apoyo para monitorear a los pacientes, además de negociar el costo, agregó. A pesar del secretismo que rodea el nuevo modelo, Emond espera que se realice una evaluación financiada por el gobierno federal para hacer seguimiento a cuántos pacientes ingresan al programa y cuáles son sus resultados, permitiendo a los estados solicitar reembolsos si el tratamiento no funciona.

El programa podría extenderse por hasta 11 años, según los CMS.

“Esta terapia puede beneficiar a muchas personas con anemia falciforme”, dijo Edward Donnell Ivy, director médico de la Asociación Estadounidense de la Anemia Falciforme (Sickle Cell Disease Association of America).

Dijo que el modelo federal ayudará a que más pacientes accedan al tratamiento, aunque señaló que su uso también dependerá del número limitado de hospitales que ofrecen esta terapia de varios meses de duración.

Esperanza para los pacientes

Antes de la terapia génica, la única posible cura para la anemia falciforme era el trasplante de médula ósea, una opción disponible solo para quienes podían encontrar un donante compatible, lo que ocurre en aproximadamente el 25% de los casos, explicó Ivy. Para el resto, el manejo de por vida incluye medicamentos para reducir los efectos de la enfermedad y controlar el dolor, además de transfusiones de sangre.

Unas 30 de las 1.000 personas inscritas en Medicaid con anemia falciforme en Missouri recibirán la terapia en los primeros tres años, dijo Josh Moore, director del programa estatal de Medicaid. Hasta ahora, menos de 10 pacientes la han recibido desde que el estado comenzó a ofrecerla en 2025, explicó.

A menos de un año de iniciado el programa federal, Moore señaló que aún es pronto para conocer su efectividad —definida como la ausencia de crisis dolorosas que requieran hospitalización—, pero espera que se acerque al 90% observado en los ensayos clínicos tras un par de años.

Moore dijo que el programa federal, basado en la efectividad del tratamiento, era preferible a reducir los pagos por una terapia nueva y prometedora, lo cual podría poner en riesgo la capacidad de las farmacéuticas para desarrollar nuevos medicamentos. “Queremos administrar bien el dinero de los contribuyentes”, señaló.

No quiso comentar cuánto podría ahorrar el estado con este modelo ni dar detalles sobre cuánto tendrían que devolver las empresas si el tratamiento no funciona, argumentando la confidencialidad de los contratos.

Hasta ahora, buenos resultados

Últimamente, Cole, quien recibió la terapia en el Hospital Infantil de St. Louis ha podido concentrarse en sus pasatiempos —jugar videojuegos, dibujar y pintar— y en graduarse de la secundaria.

Dijo que se alegra de haber recibido el tratamiento. Lo peor fue la quimioterapia, explicó, que le impidió hablar o comer y requirió múltiples inyecciones.

Aseguró que su condición está “mucho mejor” y que no ha tenido episodios dolorosos por los que tuviera que internarse desde que completó la terapia en la primavera pasada. “Estoy muy agradecida de haber podido recibirla”.

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Humphreys, 68, feels betrayed by the Federal Employees Health Benefits Program. “As federal employees, we sacrificed good salaries in the private sector because we thought the benefits from government would be better now, in retirement,” he said.

As the nation’s largest employer-sponsored health insurance program, the covers more than 8.2 million federal government employees and retirees, and it was once celebrated as a national model for controlling costs while giving enrollees many health plan options.

But next year, average enrollee premium payments in the system are set to jump more than 12%, on top of a 13.5% hike in 2025. The two-year increase is higher than what many private employers and their workers are experiencing.

The FEHB rate hikes are similar to those for plans sold on the Affordable Care Act exchanges — excluding the government subsidies most enrollees get, a major point of contention on Capitol Hill. The premiums insurers charge for Obamacare plans are rising 26% on average for 2026, following a 4% increase this year.

What’s making the latest hike in FEHB premium payments even harder to stomach for millions of federal employees is its timing: The 2026 increase was announced in October, when many federal workers were on unpaid furlough during the 43-day government shutdown.

Unlike most private employers, the FEHB Program gives its enrollees numerous health plans to choose from. That allows some people to lower their monthly premium payments by switching to plans with higher deductibles or copayments. But each year of enrollees switch plans, according to the Office of Personnel Management, which oversees the program.

Humphreys, who has stayed with the same health plan for decades despite steadily higher prices, said it’s difficult determining which plan is best based on their health conditions. He has glaucoma and diabetes, and his wife, Julianne, has faced heart issues.

Their FEHB plan covers costs for their care not covered by Medicare, which typically pays 80% of their health bills.

“There’s a fear that if you do something and change plans and it’s wrong, you could be in a bad spot,” he said.

Open enrollment for federal employees and retirees runs through Dec. 8.

Among the factors causing premiums to increase, according to OPM, are an aging federal workforce with more chronic conditions, as well as prescription drug use, including pricey GLP-1 medications for weight loss.

About 42% of federal employees are over the age of 50, compared with 33% in the general workforce, OPM says. About 7% of federal employees are under the age of 30, compared with about 20% of workers overall.

OPM officials said the Trump administration’s policies aimed at lowering drug costs and focused on prevention of costly medical conditions will hopefully help it control premiums in the future.

“None of these initiatives of course will happen overnight – turning a $79 billion ship takes slow and steady progress,” Shane Stevens, OPM’s associate director for health care and insurance, . “But, we are committed to improving the quality of life and quality of care for our members while also ensuring that healthcare remains accessible and affordable for those who work (or have worked) for the American people.”

OPM didn’t respond to requests for comment.

John Holahan, a health policy fellow at the nonpartisan Urban Institute, said OPM’s explanation left out a key reason for rising premiums: hospital consolidation. While the FEHB Program is a collection of health plans, in many markets — including the Washington, D.C., area — those insurers must negotiate with a handful of powerful health systems that have bought up other hospitals and doctors. That market power enables them to drive prices higher on FEHB plans, he said.

Jacqueline D. Bowens, president and CEO of the D.C. Hospital Association, said in a statement that “the costs borne by patients are not determined solely by the care they receive, but by how insurance companies choose to price, reimburse, and restrict access to that care.”

Holahan said it’s surprising that FEHB premiums are rising even faster than those of other, smaller employers. But he is not surprised federal employees don’t switch plans more often, even when it may be in their financial interest.

“It’s that people find the health care world so complicated,” he said. Holahan, a noted health economist, said he, too, finds it daunting to switch Medicare health plans.

Mike Lindquist, a scientific review officer for the National Institutes of Health, said he’s not happy with the rise in his premium payments the past two years. “It’s tough, as it’s a big expense.”

Lindquist, 43, who lives in Brunswick, Maryland, has been on the same Blue Cross and Blue Shield plan through the FEHB Program the past few years even though he evaluates his options each fall.

“By not switching, you don’t have to worry about choosing a new plan that might not take your practitioners,” he said.

Jonathan Foley, a health consultant who worked as a senior adviser at OPM during the Biden administration, said premium increases will be a hardship for many enrollees. While the FEHB Program offers 200 health plans in total, with about 10 to 20 in each geographic market, enrollment is concentrated in just a handful of Blue Cross and Blue Shield plans.

“This concentration reduces competition and gives outsize influence” to rate increases by Blue Cross and Blue Shield, Foley said in an email.

He said the FEHB Program also faces higher costs because it requires its health plans to cover GLP-1 medications, such as Wegovy and Ozempic. Nationally, fewer than half of large employers offer this benefit, according to . KFF is a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

Another cost pressure has been more members using behavioral health benefits to treat depression and anxiety since the start of the covid pandemic, Foley said.

The Trump administration’s federal workforce reductions also have contributed to cost increases, Foley said. OPM has lost about a third of its employees in the past year, leaving fewer workers to oversee the FEHB Program and negotiate with dozens of health insurers, he said.

“The workforce reductions and the unpredictable nature of policymaking in the Trump administration has created considerable uncertainty among health insurance carriers,” Foley said. “The response of actuaries to increased uncertainty is to raise rates.”

A this year found that recent OPM staffing vacancies led to a suspension of fraud risk assessments in the FEHB Program.

John Hatton, staff vice president for policy and programs at an advocacy group called the National Active and Retired Federal Employees Association, said higher prices mean it’s critical for FEHB members to shop and compare plans for next year. “The program was designed to promote competition to mitigate and drive down costs,” he said.

Hatton said OPM surveys show the main reasons people don’t change plans is they are overwhelmed by their options and worried about making a mistake. Switching to a plan with even a slightly higher deductible, he said, could save people a few hundred dollars a month on premiums.

But Humphreys, the Georgia retiree, said he likes that his current plan comes with low out-of-pocket costs for him and his wife. They owed little money when his wife suffered a kidney stone infection and sepsis, which put her in the hospital for 12 days.

That reassurance will soon come at a higher cost: Their FEHB and Medicare premiums will take up more than half of his pension check next year after accounting for taxes.

“I can take a lower-premium plan, but it’s a gamble I am not willing to take,” he said.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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Hasta ahora, cinco estados informaron que ya han recibido, en total, más de 170.000 nombres, una medida del gobierno federal sin precedentes, que significa involucrar al programa de salud estatal-federal en la campaña del presidente contra la inmigración.

Defensores de los derechos de los inmigrantes advierten que esta decisión impone una carga adicional a los estados al tener que duplicar las verificaciones y podría llevar a que algunas personas pierdan su cobertura médica simplemente por no haber entregado a tiempo la documentación.

Sin embargo, el doctor Mehmet Oz, administrador de los Centros de Servicios de Medicare y Medicaid (CMS), afirmó en una publicación en la plataforma social X el 31 de octubre que se estaban gastando más de $1.000 millones “de los contribuyentes [que pagan impuestos federales] en financiar Medicaid para inmigrantes ilegales” en cinco estados y Washington D.C.

El gasto total de Medicaid superó los $900 mil millones en el año fiscal 2024.

Ni la declaración de Oz ni un video adjunto aclararon el período durante el cual se realizaron estos gastos, y los voceros de los CMS no respondieron de inmediato a las preguntas solicitadas.

Las normas federales limitan la elegibilidad para Medicaid y para el Programa de Seguro de Salud Infantil (CHIP) a los ciudadanos estadounidenses y a algunos que residen legalmente en el país.

Las personas sin estatus migratorio legal no pueden recibir ninguna cobertura de salud financiada por el gobierno federal, incluidos Medicaid, Medicare y los planes adquiridos en los mercados de seguros creados por la Ley de Cuidado de Salud a Bajo Precio (ACA).

Varios estados dijeron estar en desacuerdo con las declaraciones de Oz.

“Nuestros pagos para la cobertura de personas indocumentadas cumplen con las leyes estatales y federales”, declaró Marc Williams, vocero del Departamento de Política y Financiamiento de la Atención Médica de Colorado, que administra el programa estatal de Medicaid. “La cifra de $1.5 millones a la que hicieron referencia hoy los líderes federales se basa en un hallazgo preliminar inexacto y ha sido refutada por datos de expertos de nuestro departamento”.

Agregó: “Resulta decepcionante que la administración anuncie esta cifra como definitiva cuando es claramente exagerada y las conversaciones aún se encuentran en la fase de información y debate”.

Funcionarios del Medicaid de Illinois criticaron duramente los comentarios del jefe de los CMS.

“Una vez más, el gobierno de Trump está difundiendo información errónea sobre el uso habitual de los fondos de Medicaid”, declaró Melissa Kula, vocera del Medicaid de Illinois.

“Esto no es un reality show, y no existe ninguna conspiración para eludir la ley federal y brindar cobertura de Medicaid a personas que no cumplen con los requisitos. El Dr. Oz debería dejar de promover teorías conspirativas y concentrarse en mejorar la atención médica para los estadounidenses”, dijo Kula.

La Autoridad de Atención Médica del Estado de Washington, que administra el programa estatal de Medicaid, también fue contundente. “Las cifras que el Dr. Oz publicó en redes sociales son inexactas”, afirmó la portavoz Rachelle Alongi. “Nos sorprendió mucho ver la publicación del Dr. Oz, especialmente considerando que seguimos colaborando de buena fe con los Centros de Servicios de Medicare y Medicaid (CMS) para responder a sus preguntas y aclarar cualquier confusión”.

En agosto, los CMS comenzaron a enviar a los estados los nombres de personas inscritas en Medicaid que la agencia sospechaba que podrían no ser elegibles, exigiendo a las agencias estatales del programa que verificaran su estatus migratorio.

En octubre, Ñî¹óåú´«Ã½Ò•îl Health News contactó a 10 agencias estatales de Medicaid. Cinco de ellas proporcionaron cifras aproximadas de los nombres que habían recibido de la administración Trump hasta la fecha, pero suponen que llegarán más: Utah recibió 8.000 nombres; Colorado, 45.000; Pennsylvania, 34.000; Ohio, 61.000; y Texas, 28.000.

Actualmente, más de 70 millones de personas están inscritas en Medicaid.

La mayoría de esos estados no aceptaron hacer más comentarios. Otros cinco —California, Nueva York, Georgia, Florida y Carolina del Sur— se negaron a revelar cuántos nombres se les pidió que revisaran, o directamente no respondieron.

Oz afirmó en su publicación de X que California había malgastado $1.300 millones en atención médica para personas no elegibles para Medicaid, mientras que Illinois gastó $30 millones, Oregon $5.4 millones, el estado de Washington $2.4 millones, Washington D.C. $2.1 millones y Colorado $1.5 millones.

“Notificamos a los estados y muchos ya han comenzado a reembolsar el dinero”, dijo. “Pero, ¿qué habría pasado si nunca hubiéramos preguntado?”.

La directora de Medicaid de Washington D.C., Melisa Byrd, declaró que los CMS habían identificado gastos administrativos del programa del distrito, que cubre a personas independientemente de su estatus migratorio, que no debieron haberse facturado al gobierno federal, y que su agencia ya ha corregido algunos de esos errores.

“Administramos un programa grande y muy complejo, y cuando ocurren errores, los corregimos”, afirmó. El programa planea reembolsar $654.014 a los CMS para mediados de noviembre.

Los cinco estados, más Washington D.C., están gobernados por demócratas, y el presidente Donald Trump no ganó en ninguno de ellos en las elecciones de 2024.

En los últimos días, el subsecretario de Salud y Servicios Humanos, Jim O’Neill, en la plataforma social X fotos de personas que, según él, son delincuentes convictos que viven en Estados Unidos sin autorización y que han recibido beneficios de Medicaid.

No se pudo contactar a O’Neill para obtener declaraciones.

“Estamos muy preocupados porque esto, francamente, parece un desperdicio de recursos estatales y refuerza la agenda antiinmigrante de la administración”, dijo Ben D’Avanzo, estratega senior de políticas de salud en el National Immigration Law Center, una organización de defensa de los derechos de los inmigrantes. “Esto duplica lo que los estados ya hacen”, añadió.

Como parte de la ofensiva contra las personas sin estatus legal, el presidente ordenó en febrero a las agencias federales que se aseguraran de que quienes no tienen la residencia en regla no obtuvieran beneficios que violaran la ley federal.

En junio, el secretario de Salud y Servicios Humanos (HHS) Robert F. Kennedy le ordenó a los CMS que compartieran con el Departamento de Seguridad Nacional (DHS) la información sobre las personas inscritas en Medicaid. Esto provocó una demanda por parte de varios estados preocupados de que esa información se utilizara para campañas de deportación.

En agosto, un juez federal ordenó al HHS que esa información con las autoridades migratorias.

Las agencias estatales de Medicaid normalmente utilizan bases de datos administradas por la Seguridad Social, el Departamento de Seguridad Nacional y otras agencias gubernamentales para verificar el estatus migratorio de los solicitantes.

Si los estados tienen que volver a contactar a las personas inscritas para verificar nuevamente su estatus migratorio o ciudadanía, algunas podrían perder su cobertura injustificadamente, por ejemplo, si no ven la carta donde se les solicitan documentos o no responden a tiempo.

“No estoy segura de que haya evidencia suficiente que justifique esta verificación adicional”, dijo Marian Jarlenski, profesora de políticas de salud en la Escuela de Salud Pública de la Universidad de Pittsburgh.

Oz dejó en claro que la administración Trump no está de acuerdo.

En el comunicado de agosto, los CMS explicaron que estaban pidiendo a los estados que verificaran la elegibilidad de las personas cuyo estatus migratorio no pudo ser confirmado mediante bases de datos federales. “Esperamos que los estados actúen con rapidez y supervisaremos los progresos mes a mes”, dijo la agencia.

Leonardo Cuello, profesor investigador del Georgetown University Center for Children and Families, calificó la orden de los CMS a los estados como “algo sin precedentes” en los 60 años de historia del programa Medicaid.

Dijo que es posible que el gobierno federal no haya podido verificar el estatus migratorio de algunas personas porque sus nombres estaban mal escritos o desactualizados, como cuando una beneficiaria aparece con el apellido de soltera en lugar del de casada.

Los listados también pueden incluir a personas que recibieron ayuda a través de Medicaid de Emergencia, un programa que cubre los gastos de servicios de emergencia en hospitales, incluidos el parto y la atención de trabajo de parto, sin importar el estatus migratorio.

“Los CMS están haciendo revisiones inútiles del estatus migratorio de personas cuyos gastos hospitalarios fueron cubiertos por el Medicaid de Emergencia”, explicó Cuello.

Oz señaló en su publicación que la ley federal “permite a los estados usar fondos de Medicaid para tratamientos de emergencia, independientemente de la ciudadanía o el estatus migratorio de los pacientes”, y que los estados pueden “crear legalmente programas de Medicaid para inmigrantes indocumentados usando sus propios impuestos estatales, siempre y cuando no se utilicen fondos federales”.

Todos los estados que mencionó Oz de este tipo.

Estas revisiones representan una carga adicional para las agencias estatales de Medicaid, que ya están ocupadas con los preparativos para implementar la ley tributaria y de gasto público que Trump firmó en julio.

Esta ley, que los republicanos han llamado la “One Big and Beautiful Bill”, establece numerosos cambios en Medicaid, incluyendo la imposición de requisitos laborales en la mayoría de los estados a partir de 2027. También les exige que revisen la elegibilidad de las personas inscritas al menos dos veces al año.

“Temo que los estados realicen verificaciones innecesarias que impongan una carga a ciertos beneficiarios, que perderán la cobertura médica cuando no deberían”, explicó Cuello. “Esto será mucho trabajo para los CMS y los estados, con muy pocos resultados reales”.

Dado que la nueva política permite a la agencia divulgar públicamente los datos, Cuello opinó que el esfuerzo tiene más valor político que práctico.

Brandon Cwalina, vocero del Departamento de Servicios Sociales de Pennsylvania —que administra Medicaid—, dijo que el estado ya exige que toda persona solicitante demuestre su ciudadanía o, cuando corresponde, su estatus migratorio.

“Sin embargo, la lista de nombres y las instrucciones emitidas por los CMS el mes pasado constituyen un nuevo procedimiento, y el departamento está revisando cuidadosamente esa lista para encarar las acciones correspondientes”, explicó.

En su publicación, Oz no mencionó a Pennsylvania, estado que Trump ganó en 2024.

Cuando un residente legal no tiene número de Seguro Social, el estado verifica su estatus usando una base de datos del Departamento de Seguridad Nacional, además de revisar los documentos migratorios específicos, agregó.

Otras agencias estatales de Medicaid dijeron que todavía no han comenzado a contactar a las personas inscritas.

“Estamos elaborando un procedimiento para realizar estas revisiones”, dijo Jennifer Stroehecker, directora de Medicaid en Utah, durante una reunión en agosto con una junta asesora estatal.

Renuka Rayasam y Rae Ellen Bichell colaboraron con este artículo.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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