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 Leonardo Cuello, 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 memorando de política del ICE de 2013 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 la información fiscal 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 bloquear ese acuerdo 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 falló en diciembre 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.

KFF 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 redes sociales en enero.

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 KFF 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 preguntas y respuestas 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, abogada del National Health Law Program, 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 el 0,4% del gasto total 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 KFF y The New York Times publicada en noviembre. (KFF es una organización sin fines de lucro dedicada a la información sobre salud, que incluye a KFF 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 Leonardo Cuello, 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. A 2013 ICE policy memo 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 tax information 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, sued to block 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 ruled in December that in those states, ICE could access information in the Medicaid database only about people in the country unlawfully. KFF 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 KFF 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, posted on social media 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 KFF 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 a Q&A document 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, an attorney 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 about 0.4% 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 KFF/New York Times poll released in November. (KFF is a health information nonprofit that includes KFF 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 gene therapy treatment 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 new payment model 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 signed the deal 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 in a July statement 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 in December 2023 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 tratamiento de terapia génica 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 un nuevo modelo de pago 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 firmó el acuerdo 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 un comunicado 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 en diciembre de 2023 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 FEHB Program 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 only about 5% 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, said in a news release. “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 the Peterson Center on Healthcare and KFF. KFF is a health information nonprofit that includes KFF 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 Government Accountability Office report 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.

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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 inmigrantes 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, KFF 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, comenzó a publicar 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 dejara de compartir 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 administran sus propios programas 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.

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

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Advocates say the push burdens states with duplicative verification checks and could lead people to lose coverage just for missing paperwork deadlines. But the administrator of the Centers for Medicare & Medicaid Services, Mehmet Oz, said in a post on the social platform X on Oct. 31 that more than $1 billion “of federal taxpayer dollars were being spent on funding Medicaid for illegal immigrants” in five states and Washington, D.C.

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

It wasn’t clear from Oz’s statement or an accompanying video over what period the spending happened, and CMS spokespeople did not immediately respond to questions, either for an earlier version of this article or after Oz’s statement was posted.

Only U.S. citizens and some lawfully present immigrants are eligible for Medicaid, which covers low-income and disabled people, and the closely related Children’s Health Insurance Program. Those without legal status are ineligible for federally funded health coverage, including Medicaid, Medicare, and plans through the Affordable Care Act marketplaces.

Several states disputed Oz’s comments.

“Our payments for coverage of undocumented individuals are in accordance with state and federal laws,” said Marc Williams, a spokesperson for Colorado’s Department of Health Care Policy & Financing, which administers the state’s Medicaid program. “The $1.5 million number referenced by federal leaders today is based on an incorrect preliminary finding, and has been refuted with supporting data by our Department experts.”

He added: “It is disappointing that the administration is announcing this number as final when it is clearly overstated and the conversations are very much in the education and discussion phase.”

Illinois Medicaid officials blasted Oz’s comments.

“Once again, the Trump administration is spreading misinformation about standard uses of Medicaid dollars,” said Illinois Medicaid spokesperson Melissa Kula. “This is not a reality show, and there is no conspiracy to circumvent federal law and provide ineligible individuals with Medicaid coverage. Dr. Oz should stop pushing conspiracy theories and focus on improving health care for the American people.”

The Washington State Health Care Authority, which runs the state’s Medicaid program, was also blunt.

“The numbers Dr. Oz posted on social media today are inaccurate,” said spokesperson Rachelle Alongi. “We were very surprised to see Dr. Oz’s post, especially considering we continue to work with CMS in good faith to answer their questions and clear up any confusion.”

In August, CMS began sending states the names of people enrolled in Medicaid that the agency suspected might not be eligible, demanding state Medicaid agencies check their immigration status.

KFF Health News in October reached out to Medicaid agencies in 10 states. Five provided the approximate number of names they had received from the Trump administration, with expectations of more to come: Colorado had been given about 45,000 names, Ohio 61,000, Pennsylvania 34,000, Texas 28,000, and Utah 8,000. More than 70 million people are enrolled in Medicaid.

Most of those states declined to comment further. Medicaid agencies in California, Florida, Georgia, New York, and South Carolina refused to say how many names they were ordered to review or did not respond.

Oz said in his X post that California had misspent $1.3 billion on care for people not eligible for Medicaid, while Illinois spent $30 million, Oregon $5.4 million, Washington state $2.4 million, Washington, D.C., $2.1 million, and Colorado $1.5 million.

“We notified the states, and many have begun refunding the money,” he said. “But what if we had never asked?”

Washington, D.C.’s Medicaid director, Melisa Byrd, said CMS had identified administrative expenses for the district program that covers people regardless of immigration status that should not have been billed to the federal government and her agency has already fixed some of those areas. “We run a big program that is very complex and when mistakes or errors happen, we fix them,” she said.

The program plans to pay $654,014 back to CMS by mid-November.

All five states, plus Washington, D.C., are led by Democrats, and President Donald Trump didn’t win any of them in the 2024 election.

In recent days, Deputy Health and Human Services Secretary Jim O’Neill began posting pictures on X of people he said are convicted criminals living in the U.S. without authorization who had received Medicaid benefits.

O’Neill could not be reached for comment.

“We are very concerned because this seems, frankly, to be a waste of state resources and furthers the administration’s anti-immigrant agenda,” said Ben D’Avanzo, senior health advocacy strategist with the National Immigration Law Center, an advocacy group. “This duplicates what states already do,” he said.

As part of the administration’s crackdown on people in the U.S. without authorization, President Donald Trump in February directed federal agencies to take action to ensure they are not obtaining benefits in violation of federal law.

In June, advisers to Health and Human Services Secretary Robert F. Kennedy Jr. ordered CMS to share information about Medicaid enrollees with the Department of Homeland Security, drawing a lawsuit by some states alarmed that the administration would use the information for its deportation campaign against unauthorized residents.

In August, a federal judge ordered HHS to stop sharing the information with immigration authorities.

State Medicaid agencies use databases maintained by the Social Security Administration and Department of Homeland Security to verify enrollees’ immigration status.

If states need to go back to individuals to reverify their citizenship or immigration status, it could lead some to fall off the rolls unnecessarily — for example, if they don’t see a letter requesting paperwork or fail to meet a deadline to respond.

“I am not sure that evidence suggests there really is a need for this” extra verification, said Marian Jarlenski, a health policy professor at the University of Pittsburgh School of Public Health.

Oz made clear that the Trump administration disagrees.

“Whether willful or not, the states’ conduct highlights a terrifying reality: American taxpayers have been footing the bill for illegal immigrants’ Medicaid coverage, despite many Democrats and the media insisting otherwise,” Oz said in his X post.

In an August press release, CMS said it would ask states to verify eligibility for enrollees whose immigration status could not be confirmed via federal databases. “We expect states to take quick action and will monitor progress on a monthly basis,” the agency said.

Leonardo Cuello, a research professor at Georgetown University’s Center for Children and Families, called the CMS order to states “unprecedented” in the Medicaid program’s 60-year history.

He said the federal government may have been unable to verify certain individuals’ immigration status because names were misspelled or outdated, such as when a beneficiary is identified by their maiden instead of married name. The names may also include people helped by Emergency Medicaid, a program that covers the cost of hospital emergency services, including labor and delivery, for people regardless of immigration status.

“CMS is conducting pointless immigration status reviews for people whose hospital bills were paid by Emergency Medicaid,” Cuello said.

Oz noted in his post that federal law “does permit states to use Medicaid dollars for emergency treatment, regardless of patients’ citizenship or immigration status,” and that states can “legally build Medicaid programs for illegal immigrants using their own state tax dollars, so long as no federal tax dollars are used.”

The states Oz mentioned all run their own such programs.

The verification checks create an added burden for state Medicaid agencies that are already busy preparing to implement the tax and policy law Trump signed in July. The measure, which Republicans call the One Big Beautiful Bill Act, makes many changes to Medicaid, including adding a work requirement in most states starting by 2027. The law also requires most states to more frequently check the eligibility of many adult Medicaid enrollees — at least twice a year.

“I fear states may do unnecessary checks that create a burden for some enrollees who will lose health coverage who should not,” Cuello said. “It’s going to be a whole lot of work for CMS and states for very little pay dirt.”

Cuello said the effort may have “greater political value than actual value.”

Brandon Cwalina, a spokesperson for the Pennsylvania Department of Human Services, which runs Medicaid in the state, said the state already requires every Medicaid applicant to verify their citizenship or, where applicable, their eligible immigration status.

However, he said, the directive issued by CMS “constitutes a new process, and DHS is carefully reviewing the list in order to take appropriate actions.”

Oz did not name Pennsylvania, which Trump won in 2024, in his post.

If a lawful resident does not have a Social Security number, the state confirms their legal status by checking a database from Homeland Security, as well as verifying specific immigration documents, he said.

Other state Medicaid agencies said they also needed to regroup before reaching out to enrollees.

“Our teams just received this notice and are working through a process by which we will perform these reviews,” Jennifer Strohecker, then Utah’s Medicaid director, told a state advisory board in August.

Renuka Rayasam and Rae Ellen Bichell contributed reporting.

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

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Mientras tanto, un nuevo informe muestra que más de 154 millones de personas con cobertura médica a través de sus empleos enfrentan fuertes aumentos de precios. Y, concluye la investigación, la situación podría empeorar.

Según una encuesta anual de empleadores publicada el 22 de octubre por KFF, las primas de los seguros médicos que ofrecen los empleadores aumentaron 6% en 2025, alcanzando un promedio de $26.993 al año para una cobertura familiar.

Es la primera vez en dos décadas que el costo de asegurar a una familia de cuatro personas aumenta 6% o más durante tres años consecutivos, según los datos de KFF.

En los últimos cinco años, la prima promedio por cobertura familiar ha aumentado un 26%, en comparación con un alza del 29% en los salarios de los trabajadores y casi un 24% en la inflación. Hoy, el seguro médico para una familia cuesta más o menos lo mismo que comprar un Toyota Corolla híbrido nuevo.

La prima promedio anual para un plan individual proporcionado por los empleadores subió un 5%, alcanzando los $9.325, casi $3.000 más que en 2016, según la encuesta.

“Nos preocupa que los costos de salud sigan subiendo”, dijo Eric Trump, encargado del área contable de Steve Reiff Inc., una pequeña empresa en South Whitley, Indiana, especializada en el arenado y la pintura de maquinaria pesada.

Trump, quien no tiene relación con el presidente Donald Trump, comentó que los costos de los planes médicos que ofrece la empresa subieron un 8% para el año fiscal 2026, más o menos lo mismo que en los últimos años.

Los trabajadores de Reiff pagan aproximadamente el 50% del costo de su cobertura médica. Cerca de la mitad de los 20 empleados rechazaron el seguro porque obtienen la cobertura a través de un familiar o prefieren no tener cobertura, explicó. “No podemos hacer mucho; no tenemos suficientes empleados para distribuir el costo”.

La mayoría de las personas que acceden al seguro médico a través del trabajo contribuyen al pago de sus primas. Este año, el trabajador promedio aportó $1.440 por cobertura individual y $6.850 por cobertura familiar.

Con el tiempo, muchos trabajadores han tenido que asumir deducibles más altos —el monto que deben pagar de su bolsillo por servicios médicos antes de que su seguro comience a cubrir los costos—. Más de un tercio de los trabajadores asegurados están inscritos en planes con un deducible de $2.000 o más por persona. Según el informe, la proporción de trabajadores con un plan de este tipo ha aumentado un 32% en los últimos cinco años y un 77% en la última década.

Los crecientes costos de los medicamentos y las hospitalizaciones suelen destacarse como las principales causas del incremento en el precio de los seguros médicos, y ninguno de estos factores muestra señales de disminuir.

“Los primeros informes indican que los costos seguirán en alza en 2026, lo que podría provocar aumentos aún más elevados en las primas, a menos que los empleadores y las aseguradoras encuentren formas de compensar estos costos mediante cambios en los beneficios, el reparto de gastos o el diseño de los planes”, señala la encuesta de KFF.

Una de las cuestiones que más preocupa a los empleadores es el alto precio de los medicamentos GLP-1 para bajar de peso, que cada vez más empresas cubren. Los precios elevados, junto con la alta demanda, han llevado a algunas compañías a restringir o eliminar la cobertura de estos medicamentos.

“Las grandes empresas saben que estos nuevos medicamentos para bajar de peso, muy costosos, son un beneficio importante para sus trabajadores, pero su precio a menudo supera las previsiones”, afirmó en un comunicado de prensa Gary Claxton, autor del estudio y vicepresidente senior de KFF.

“No es una sorpresa que algunas compañías estén reconsiderando el acceso a los medicamentos para bajar de peso”, agregó.

Los empleadores suelen responder al aumento de los costos de salud trasladando parte de esos gastos a sus trabajadores, pero no está claro cuánto más ellos pueden resistir económicamente. La encuesta mostró que casi la mitad de las grandes empresas dijeron que sus empleados están “bastante” o “muy” preocupados por cuánto les toca pagar de su propio bolsillo.

Aunque el aumento en el precio de los seguros pagados por las empresas ha superado la inflación general, la cuestión ha recibido poca atención en el Congreso en los últimos meses.

Para ayudar a financiar la ampliación de los recortes fiscales, la ley tributaria y de gasto público del presidente Trump reduce en miles de millones de dólares el monto que el gobierno destina a Medicaid, el programa de seguro de salud federal y estatal que cubre a 70 millones de personas de bajos ingresos y con discapacidades. Los analistas presupuestarios del Congreso pronostican que estos recortes harán que millones de personas pierdan su cobertura médica a lo largo de la próxima década.

El gobierno federal está cerrado desde el 1 de octubre, ya que los demócratas se niegan a aprobar un nuevo presupuesto federal a menos que los republicanos acepten prorrogar los subsidios que ayudan a unas 22 millones de personas a adquirir cobertura de salud a través de los mercados de ACA.

Sin la intervención del Congreso, estos subsidios (también llamados créditos fiscales) expirarán y las primas se duplicarán para muchos consumidores a partir de enero.

El informe de KFF se basa en una encuesta realizada este año a 1.862 empleadores públicos no federales y privados, seleccionados al azar, con 10 o más trabajadores.

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Premiums for job-based health insurance rose 6% in 2025 to an average of $26,993 a year for family coverage, according to an annual survey of employers released Oct. 22 by KFF, a health information nonprofit that includes KFF Health News.

It’s the first time in two decades that the cost of covering a family of four has risen by 6% or more for three consecutive years, data from KFF shows.

Over the last five years, the average premium for family coverage has increased by 26%, compared with a 29% increase in workers’ wages and nearly 24% growth in inflation. The average cost for family coverage is now about the same as a new Toyota Corolla hybrid.

The average annual premium for an individual health plan provided by employers increased by 5% to $9,325 — nearly $3,000 higher than in 2016, according to the survey.

“It’s a concern as health costs just keep going up,” said Eric Trump, controller at Steve Reiff Inc., a small company in South Whitley, Indiana, that specializes in sandblasting and painting heavy equipment.

Trump, who is not related to President Donald Trump, said his company’s health insurance costs rose 8% for the 2026 fiscal year — roughly the same as they have in the last few years.

Workers at Reiff pay about half the cost of their health coverage. About half of its 20 current employees decline the insurance because they get coverage through a family member or choose to go uninsured, he said. “There’s not a lot we can do as we don’t have enough employees to spread out the costs.”

Most people with job-based insurance contribute to the cost of their premiums, with the average worker this year contributing $1,440 for individual coverage or $6,850 for family coverage.

Over time, more workers have paid increasingly higher deductibles, the amount they must spend out-of-pocket on medical services before their insurer pitches in. More than one‑third of covered workers are enrolled in a plan with a deductible of $2,000 or more for an individual. The share of workers with such a plan has increased 32% over the last five years and 77% over the last 10 years, the report said.

Rising drug and hospital costs are often cited as major culprits for rising health insurance costs, and neither shows signs of ebbing.

“Early reports suggest that cost trends will be higher for 2026, potentially leading to higher premium increases unless employers and plans find ways to offset higher costs through changes to benefits, cost sharing, or plan design,” the KFF survey said.

One big concern among employers is the high price of GLP-1 drugs for weight loss, which a growing number of companies cover. Their high prices, combined with strong demand, have led some workplaces to tighten or eliminate coverage for weight loss.

“Large employers know these new high-priced weight-loss drugs are an important benefit for their workers, but their costs often exceed their expectations,” study author Gary Claxton, a KFF senior vice president, said in a press release. “It’s not a surprise that some are rethinking access to the drugs for weight loss.”

Employers typically respond to higher health costs by shifting costs to their workers, but it’s unclear how much more financial pain workers can take. The survey found nearly half of large employers said their employees have “moderate” or “high” concerns about their level of cost sharing.

While the rising cost of employer-sponsored insurance has outpaced general inflation, the issue received scant attention in recent months on Capitol Hill. To help pay for extending tax cuts, Trump’s tax and spending law reduces by billions of dollars the amount the government spends on Medicaid, the state-federal health insurance program for 70 million low-income and disabled people. Congressional budget scorekeepers predict the cuts to Medicaid will lead to millions more people becoming uninsured over the next decade.

The federal government has been shut down since Oct. 1 as Democrats refuse to vote for a new spending measure unless Republicans agree to extend tax credits that help about 22 million people buy health coverage through the ACA marketplaces. Without congressional action, the tax credits will expire, and premiums will double for many consumers, starting in January.

The KFF report is based on a survey this year of 1,862 randomly selected nonfederal public and private employers with 10 or more workers.

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But in the past couple of years, she’s fallen from 600 pounds to 385, and her blood pressure and blood sugar levels are down, too. “I’m not as fatigued as I used to be, and I’ve been able to go back to church,” she said.

Hines, 46, credits her weight loss to Trulicity, part of a new class of expensive weight loss drugs known as GLP-1s, and her Medicaid coverage for it. “It’s a blessing,” she said.

In a state where the obesity rate ranks among the highest in the country, many health providers were thrilled when Mississippi Medicaid in 2023 began covering GLP-1s for people 12 and older. Only 13 states cover the drugs for Medicaid enrollees for obesity, and Mississippi’s Medicaid program typically has some of the sparsest benefits and strictest eligibility rules.

Hines is one of relatively few enrollees to have used the new Medicaid benefit, which weight loss doctors in the state say has been hindered by national drug shortages, the state’s prior authorization process for the drugs, and a lack of marketing. Just 2% of adults on Mississippi Medicaid who meet the weight-related criteria had been prescribed a GLP-1 as of December 2024, according to a report to the state’s Medicaid Drug Utilization Review Board.

“It’s a little sad to have so many people out there not benefiting,” said William Rosenblatt, a family doctor in Columbus who treats Hines. “These drugs get to the root cause of so many health conditions.”

Already-scarce Medicaid coverage of the highly touted weight loss drugs could become more limited, with federal Medicaid funding cuts expected in the wake of the massive tax-and-spending bill President Donald Trump signed into law in July. The Congressional Budget Office estimated that the law would reduce Medicaid spending by about $911 billion over a decade.

“The law is going to create fairly intense pressure on states not to expand benefits,” said Michael Kolber, a partner in the health consulting firm Manatt. That may be especially true for these drugs, which often cost around $1,000 a month and could be used by a large percentage of Medicaid recipients, he said.

GLP-1s, which have been used for years to treat Type 2 diabetes, have gained widespread attention as a way to lose weight and reduce obesity-related conditions and their long-term costs.

But states may remain reluctant to offer the expensive drugs for obesity, because Medicaid recipients frequently churn on and off the coverage as their income changes. And because the drugs’ health benefits may take years to materialize — such as averting a future heart attack — the long-term financial advantages could accrue to other insurers.

Even ahead of the federal cuts, which will largely take effect in 2027, states are already feeling the pinch. North Carolina’s Medicaid program dropped its coverage of the drugs this month, citing their high cost.

Coverage for the weight loss drugs presents a dilemma for the Trump administration, which has identified as priorities attacking chronic health conditions and reducing federal spending. Health and Human Services Secretary Robert F. Kennedy Jr. has downplayed the need for the drugs and said more emphasis should be placed on eating better and exercising more.

In 2024, the Biden administration proposed that Medicare and Medicaid cover weight loss drugs to help tackle obesity as a public health crisis. In April, the Trump administration revoked the Biden-era proposal, saying the programs would not cover GLP-1 drugs for weight loss.

But in August, The Washington Post reported the Trump administration was considering a five-year pilot program for Medicare and Medicaid to cover the drugs after all. No details have been released. Asked for comment on the report, Centers for Medicare & Medicaid Services spokesman Alexx Pons told KFF Health News that all decisions go through a cost-benefit review.

Meanwhile, the Trump administration has included the GLP-1 drugs Ozempic, Wegovy, and Rybelsus on its list of 15 medicines that will be subject to price negotiations with pharmaceutical manufacturers under its Medicare Part D program, a system created during the Biden administration amid opposition from Republicans. The results of those negotiations are expected to be announced this fall.

Most private insurers don’t cover GLP-1s for weight loss, which can make the drugs unaffordable for those paying out of pocket.

Further analysis provided to Mississippi’s Medicaid drug review board shows that, in the first 15 months the drugs were covered, only about 2,900 Medicaid enrollees age 12 or older started treatment. Nearly 90% of them were female, and many had high blood pressure and high cholesterol.

The analysis also found most enrollees using the drugs lived in the southern, central, or northern parts of Mississippi — not along the Mississippi Delta on the western side of the state, where obesity rates are highest, at nearly 50%.

About 40% of adults in Mississippi are obese, just one percentage point behind top-ranked West Virginia, according to federal data.

Mississippi Medicaid spokesman Matt Westerfield told KFF Health News that the state spent $12 million in the first 15 months, providing the weight loss drugs to 2,200 adult members. He said the state approved the new drugs on the logic that treating obesity would improve enrollees’ health and eventually could lead to cost savings by reducing diseases caused by obesity.

Westerfield said that while utilization has been below the state’s projections, such treatment decisions are up to patients and their doctors. He said the state has been “raising awareness” of the drugs among health care providers, but he declined to comment further.

Rosenblatt, who works for Baptist Medical Group, part of a large regional health system, said some doctors have less incentive to prescribe the medicine, because the state doesn’t pay them to counsel patients about necessary dietary changes when taking the new drugs.

He called the drugs “game changers,” adding that he has seen patients lose 50 pounds or more within a few months of starting the drugs and no longer need medications for diabetes or other conditions.

A New England Journal of Medicine study published in 2021 found participants receiving GLP-1 drugs were more likely to show significant, sustained weight loss compared with those getting a placebo.

Other recent studies have shown the drugs help people with obesity lower their high blood pressure and reduce their odds of heart attacks or strokes.

Mississippi is one of 10 states that have not expanded Medicaid eligibility under the 2010 Affordable Care Act to everyone with an income under 138% of federal poverty level, or $21,597 this year.

In Mississippi, Medicaid does not cover adults without dependent children. Parents qualify only if their income is below 22% of the federal poverty level, or $5,863 for a family of three this year.

The state’s prior authorization process requires doctors to document to the state that patients meet certain obesity levels and that a treatment plan is in place. Doctors must demonstrate that enrollees are losing weight every six months to renew their prescription.

At the Hattiesburg Clinic — a large, multi-specialty group with a location in Hattiesburg, Mississippi — Virginia Crawford, a physician who specializes in obesity, said she was surprised so few patients are getting the drugs. A year ago, there were shortages of the drugs that could have curtailed physicians prescribing them. And she said the state’s prior authorization requirements for the drug could discourage primary care doctors. Many common medications do not require progress reports or even prior authorization.

“We need to make patients more aware that this option is available for them,” she said.

Lauren Scott, 40, of Laurel, Mississippi, said that with the help of Medicaid coverage, she lost nearly 100 pounds taking Wegovy.

“It’s just been amazing,” she said of how the drug drastically cut her appetite. “I remember going to Outback with my husband, and we got the onion ring appetizer and 16-ounce ribeye and salad with extra ranch dressing. I had some onion rings and started on the salad and realized I could not eat any more of this.”

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

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