Fernando Viera Reyes necesitaba una biopsia por un posible cáncer de próstata cuando el gobierno de Trump lo envió a un centro de detención de inmigrantes en el desierto de Mojave, en California.

Allí, esperó. Reyes, ahora de 51 años, solicitó reiteradas veces el procedimiento, según una demanda presentada en noviembre contra el gobierno federal, pero pasaron meses, aunque había sangre en su orina, una señal de que el cáncer podía haberse propagado.

“Puede haber pasado de ser muy tratable a estar metastásico”, dijo Kyle Virgien, quien, como abogado del Proyecto Nacional de Prisiones de la Unión Americana de Libertades Civiles (ACLU, por sus siglas en inglés), está involucrado en la demanda.

“Hay poblaciones vulnerables; está abarrotado. No hay atención médica suficiente para manejar el aumento en el número de personas enfermas”, dijo Virgien.

El esfuerzo de deportación masiva del presidente Donald Trump ha llevado a un número récord de inmigrantes detenidos en centros federales, cárceles locales y prisiones privadas. La situación pone en riesgo la salud de los detenidos.

El Servicio de Inmigración y Control de Aduanas (ICE) está violando normas que garantizan que los inmigrantes reciban exámenes médicos iniciales, atención de rutina y respuestas oportunas a quejas físicas, según una revisión de más de 200 páginas de demandas de detenidos, informes de investigación independientes y académicos publicados, e investigaciones recientes del Congreso realizadas por demócratas.

Las quejas sobre la atención médica inadecuada en los centros de detención podrían aumentar la reacción política que enfrenta Trump por su campaña agresiva de deportación, incluido el asesinato de dos ciudadanos estadounidenses en Minneapolis.

Miembros demócratas del Congreso han insistido en limitar a los agentes federales de inmigración como parte de un proyecto de ley de gastos de 2026 para el Departamento de Seguridad Nacional (DHS, por sus siglas en inglés), un estancamiento que amenaza con cerrar en gran medida la agencia.

Voceros del ICE y del Cuerpo de Servicios de Salud del ICE (IHSC, por sus siglas en inglés), del DHS y de la Casa Blanca no respondieron a solicitudes repetidas de comentarios para este artículo. El IHSC evalúa la salud para la deportación, supervisa las normas médicas en instalaciones contratadas y reembolsa la atención médica fuera de los centros.

Sin embargo, en el sitio web del IHSC, el director asistente Stewart Smith dijo que el cuerpo “mantiene las normas de atención médica en todas las instalaciones propias y contratadas por el ICE y garantiza la prestación de la atención médica requerida para los extranjeros detenidos”. Por su parte, el sitio web del ICE señala que “muchos extranjeros pueden no haber recibido tratamiento médico reciente o confiable para condiciones existentes antes de ingresar bajo custodia de ICE. Para algunas personas, esta puede ser su primera oportunidad de acceso a atención médica integral”.

Algunos legisladores demócratas han exigido informes de autopsia de detenidos que murieron bajo custodia y han acusado públicamente al ICE de negar a los inmigrantes el acceso a atención. La representante Kelly Morrison (demócrata de Minnesota) dijo que un centro de detención que visitó en el histórico Fort Snelling del estado no tenía normas médicas ni “atención médica real” en el lugar.

“Hace sonar alarmas desde una perspectiva médica y de salud pública”, dijo Morrison, quien es doctora, a KFF Health News. “No hay camas, no hay mantas, hay comida mínima. Hace mucho frío. Todos están con grilletes en las piernas. Es caótico, desorganizado y, francamente, peligroso”.

La representante Jasmine Crockett (demócrata de Texas) denunció recientemente la atención médica de los detenidos en una conferencia de prensa que realizó después de visitar a Liam Conejo Ramos, un niño de 5 años en Minneapolis que fue enviado al Centro de Procesamiento de Inmigración de Dilley, en el sur de Texas. Crockett fue al centro luego de informes de medios que señalaban que el niño había desarrollado fiebre y estaba en mal estado de salud.

“El trato que estas personas están sufriendo en este momento es peor que el de quienes son acusados y a veces incluso condenados por delitos. Así de grave es”, dijo.

El DHS cerró Dilley este mes después de que dos detenidos contrajeran sarampión. El centro también alberga a niños que son vulnerables a complicaciones graves de la enfermedad, como inflamación cerebral.

El senador Chris Murphy (demócrata de Connecticut) acusó el 1 de febrero al gobierno de negarle la entrada a Dilley a finales de enero para ocultar el brote de sarampión.

Y recientemente se reportaron tres casos de sarampión en un centro en Florence, Arizona.

La preocupación pública está aumentando, con casi el 60% de los votantes que dicen desaprobar cómo Trump ha manejado la inmigración, según una encuesta reciente realizada por la Universidad de Siena y The New York Times.

El tipo y el alcance de los servicios de salud que deben recibir los inmigrantes adultos dependen en parte de dónde estén detenidos. Las normas de detención de ICE se aplican a centros específicos, como prisiones privadas que albergan tanto a reclusos como a detenidos, mientras que se requieren normas separadas en instalaciones que generalmente alojan a detenidos inmigrantes adultos.

A pesar de las diferencias, se esperan ciertos estándares básicos. Los inmigrantes deben recibir una evaluación médica, dental y de salud mental cuando llegan, y deben tener acceso diario a consulta médica por enfermedad, atención de emergencia las 24 horas y otros servicios, incluida atención preventiva, exámenes, diagnóstico y tratamiento.

Las normas existen para “garantizar que los detenidos sean tratados de manera humana; que se los proteja de daños; reciban atención médica y de salud mental adecuada; y reciban los derechos y protecciones a los que tienen derecho”, según las normas nacionales del ICE, revisadas el año pasado.

Pero el incumplimiento de la agencia de sus propias normas está dejando a los detenidos inmigrantes en riesgo de emergencias médicas y muerte, complicaciones por afecciones crónicas no tratadas e infección con enfermedades contagiosas, según demandas de defensores, investigaciones del Congreso realizadas por demócratas e informes estatales.

El DHS ha criticado algunas de las investigaciones como falsas, incluido un informe del senador Jon Ossoff (demócrata de Georgia) sobre mujeres embarazadas y niños en detención.

“Los centros de detención del ICE tienen normas más altas que la mayoría de las prisiones en EE.UU. que detienen a ciudadanos estadounidenses. Todos los detenidos reciben atención médica integral y comidas adecuadas”, dijo Tricia McLaughlin, vocera del DHS, en una declaración de agosto. El 17 de febrero, McLaughlin anunció que dejaría su cargo.

Supervisión debilitada, menos infraestructura

El acceso a servicios de salud adecuados se ha visto amenazado por el aumento del número de detenidos, la falta de supervisión del gobierno de Trump y un retraso en el procesamiento de reclamos médicos que ha puesto en riesgo la atención, dicen defensores, abogados y algunos doctores.

“Los desafíos se han agravado porque el ritmo de las expulsiones no ha seguido el ritmo de las detenciones. Eso agrava el problema”, dijo Drishti Pillai, directora asociada de KFF (organización sin fines de lucro de la que KFF Health News es parte). “Hay más problemas de salud pública cuando los centros están abarrotados”.

El número de inmigrantes en detención aumentó de unos 40.000 en noviembre de 2023 bajo el ex presidente Joe Biden a un récord de 73.000 personas a mediados de enero, según el American Immigration Council, un grupo que se enfoca en litigios e investigación.

Al mismo tiempo, el gobierno de Trump ha debilitado la supervisión de las condiciones y los servicios de salud en los centros de detención. Redujo el personal en la oficina del Defensor del Pueblo para la Detención de Inmigrantes del DHS, lo que en la práctica cerró la mayoría de sus operaciones, según un análisis de KFF y el Economic Policy Institute, una organización sin fines de lucro de investigación económica.

La misión del defensor del pueblo ha sido “examinar de manera independiente la detención de inmigrantes para promover condiciones seguras y humanas”, según la agencia. Actualmente, el DHS enfrenta un cierre parcial del gobierno debido a la oposición de los demócratas a un proyecto de ley de financiamiento para la agencia. Tal como fue impulsada por los republicanos, la medida eliminaría por completo el financiamiento del defensor del pueblo.

También hay largos retrasos en el procesamiento de pagos de atención médica para detenidos a doctores y hospitales externos, un obstáculo que, según defensores y el gobierno federal, pone en riesgo la atención.

El Centro de Servicios Financieros del Departamento de Asuntos de Veteranos tuvo durante mucho tiempo un contrato con el ICE para procesar reclamos por atención fuera de los centros de detención, como tratamientos oncológicos o diálisis.

Republicanos en el Congreso criticaron el acuerdo y afirmaron que desviaba recursos de los veteranos.

En octubre, Asuntos de Veteranos dejó de procesar las reclamos de los detenidos. Documentos que el ICE publicó en un sitio web federal de contrataciones indicaron que esta terminación “creó una emergencia” al comprometer la capacidad de reembolsar a proveedores y dejó a la agencia sin un mecanismo para brindar servicios como pruebas de tuberculosis, transporte médico no urgente y compra de equipo médico.

“Es una emergencia absoluta que el ICE obtenga de inmediato apoyo para procesar reclamos porque la falta de este apoyo retrasará atención médica crítica … como diálisis, atención prenatal, oncología, quimioterapia, etc.”, según documentos parcialmente censurados publicados a finales de 2025 en Sam.gov, un sistema federal de datos de contratos.

Se ha contratado a un nuevo procesador de reclamaciones, Acentra Health, pero el ICE ha dicho en su sitio web que no se procesará ninguna reclamación hasta el 30 de abril. Defensores dicen que no está claro si los detenidos están recibiendo acceso a atención externa según sea necesario y señalan que los retrasos también están desalentando a proveedores médicos a ofrecer servicios a los inmigrantes.

“El DHS ha firmado un nuevo contrato para procesar estos reclamos y actualmente está incorporando al proveedor”, dijo Pete Kasperowicz , vocero de Asuntos de Veteranos. “Mientras tanto, el VA está apoyando esta transición hasta mayo para asegurar que las reclamaciones se procesen adecuadamente”.

Muertes bajo custodia

El ICE informa que seis detenidos han muerto bajo custodia en lo que va de 2026, con 32 muertes de detenidos en 2025 y 11 en 2024. Sin embargo, algunos defensores y legisladores cuestionan esas cifras y dicen que los totales excluyen a detenidos que murieron mientras eran arrestados o bajo el cuidado de la Oficina de Aduanas y Protección Fronteriza de Estados Unidos (CBP, por sus siglas en inglés).

Demócratas en la Cámara de Representantes, en el Comité de Seguridad Nacional, dicen que 53 personas han muerto bajo custodia del ICE o la CBP desde que Trump asumió el cargo. Están exigiendo información al DHS, incluidos informes de cada autopsia, requisitos de personal para profesionales médicos y grabaciones de video de un detenido que murió en Texas.

“Estamos indignados” por las muertes, según una carta del 22 de enero firmada por 13 legisladores. “Es evidente y trágico que el ICE no está dispuesto o no puede proporcionar atención básica a los detenidos”.

Los demócratas señalaron la muerte de Geraldo Lunas Campos, de 55 años, nacido en Cuba. Murió el 3 de enero en un centro de detención en Fort Bliss, Texas, después de que el ICE dijera que presentó una emergencia médica. Había sido detenido casi seis meses antes.

“En ningún momento durante la detención se niega atención de emergencia a un extranjero detenido”, dijo el ICE en una declaración del 9 de enero sobre esa muerte.

La Oficina del Médico Forense del condado de El Paso determinó que la muerte fue un homicidio ocurrido después de que Campos fuera inmovilizado por las fuerzas del orden.

Mientras, otros inmigrantes siguen esperando atención. Reyes, quien necesitaba una biopsia por un posible cáncer de próstata, finalmente se realizó la prueba, pero a principios de febrero no había recibido resultados. “Está en un dolor constante y agonizante”, según la demanda presentada en el Distrito Norte de California.

El 10 de febrero, un juez federal ordenó al ICE y al DHS proporcionar atención médica adecuada a los detenidos y realizar supervisión externa, incluidas inspecciones en el lugar del centro de detención.

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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¿Cómo deben usar la inteligencia artificial (IA) las aseguradoras de salud? La respuesta a esta pregunta inusual de política pública, encuentra en un mismo bando al gobernador republicano Ron DeSantis, de Florida, y al gobierno demócrata de Maryland, los dos contra el presidente Donald Trump y el gobernador de California, Gavin Newsom.

La regulación de la inteligencia artificial, en especial su uso por parte de las aseguradoras de salud, se está convirtiendo en un tema que divide políticamente y altera las líneas partidarias tradicionales.

Quienes la impulsan, con Trump a la cabeza, no solo quieren insertar la IA de lleno en el gobierno, como en el experimento de Medicare que la utiliza en las autorizaciones previas (el proceso para autorizar ciertos tratamientos y medicamentos), sino que además buscan frenar a los estados que pretenden poner reglas y límites. Una orden ejecutiva firmada en diciembre busca invalidar la mayoría de los esfuerzos de los estados para regularla, al plantear que existe “una carrera con adversarios por la supremacía” en una nueva “revolución tecnológica”.

“Para ganar, las empresas estadounidenses de IA deben tener la libertad de innovar sin regulaciones engorrosas”, dice la orden de Trump. “Pero la regulación estatal excesiva frustra este imperativo”.

En todo el país, los estados se están rebelando. Al menos cuatro —Arizona, Maryland, Nebraska y Texas— aprobaron el año pasado leyes que limitan el uso de la IA en los seguros de salud. Otros dos, Illinois y California, habían aprobado leyes similares el año anterior.

Los legisladores de Rhode Island se proponen intentarlo de nuevo este año, después de que durante 2025 no lograran sancionar un proyecto que exigía a los organismos reguladores que recopilaran datos sobre el uso de las tecnologías. El año pasado, en Carolina del Norte, una iniciativa que exige que las aseguradoras no utilicen la IA como única base para decidir la cobertura generó interés entre legisladores republicanos.

DeSantis, ex candidato presidencial del Partido Republicano, ha presentado una “Carta de Derechos de la IA”, cuyas disposiciones incluyen restricciones a su uso en la tramitación de reclamos de seguros y el requisito de que un organismo regulador estatal inspeccione los algoritmos.

“Tenemos la responsabilidad de garantizar que las nuevas tecnologías se desarrollen de forma moral y ética, de modo que refuercen nuestros valores estadounidenses, no que los erosionen”, dijo DeSantis durante su discurso anual sobre la situación de su estado en enero.

Lista para regular

Las encuestas muestran que los estadounidenses desconfían de la IA. En diciembre, un relevamiento  de Fox News encontró que el 63% de los votantes se describen como “muy” o “extremadamente” preocupados por la inteligencia artificial. La preocupación es mayoritaria en todo el espectro político. Casi dos tercios de los demócratas y poco más de 3 de cada 5 republicanos dijeron tener reparos sobre la IA.

Las tácticas de las aseguradoras de salud para reducir costos también preocupan a la población. Una encuesta de enero de KFF mostró un descontento generalizado en temas como la autorización previa.

En los últimos años, informes de ProPublica y otros medios han destacado el uso de algoritmos para rechazar rápidamente reclamos de seguros o solicitudes de autorización previa, al parecer con muy poca revisión por parte de un profesional de salud.

En enero, el Comité de Medios y Arbitrios de la Cámara de Representantes convocó a ejecutivos de Cigna, UnitedHealth Group y otras grandes aseguradoras para discutir preocupaciones sobre los altos costos de la atención médica.

Cuando se les preguntó directamente, los ejecutivos negaron o evitaron referirse al uso de la tecnología más avanzada para rechazar solicitudes de autorización o descartar reclamos.

La IA “nunca se utiliza para una denegación”, aseguró a los legisladores David Cordani, director ejecutivo de Cigna. Al igual que otras empresas del sector de seguros de salud, la compañía enfrenta demandas por sus métodos para rechazar reclamos, como destacó ProPublica. Justine Sessions, vocera de Cigna, dijo que el proceso de rechazo de reclamos de la empresa “no está impulsado por la IA”.

De hecho, las compañías insisten en presentar la IA como una herramienta de apoyo que no decide sola. Optum, parte del gigante de la salud UnitedHealth Group, anunció el 4 de febrero que implementaría autorización previa impulsada por tecnología, destacando que permitirá aprobaciones más rápidas.

“Estamos transformando el proceso de autorización previa para abordar los puntos de conflicto que genera”, dijo John Kontor, vicepresidente sénior de Optum, en un comunicado de prensa.

Aun así, Alex Bores, científico informático y miembro de la Asamblea de Nueva York, una figura clave en el debate legislativo del estado sobre la IA—que terminó en una ley integral para regular esta tecnología—, aseguró que la IA es un campo que, naturalmente, requiere regulación.

“Muchas personas consideran que las respuestas que reciben de sus aseguradoras son difíciles de entender”, dijo Bores, demócrata que compite por un escaño en el Congreso. “Agregar una tecnología que no puede explicar sus propias decisiones no ayudará a hacer las cosas más claras”.

Al menos una parte del ámbito de la salud —por ejemplo, muchos médicos— respalda a los legisladores y a quienes defienden las regulaciones.

La Asociación Médica Americana (AMA, por sus siglas en inglés) “apoya las regulaciones estatales que buscan más responsabilidad y transparencia de las aseguradoras comerciales que usan herramientas de IA y aprendizaje automático para revisar solicitudes de autorización previa”, dijo John Whyte, su director ejecutivo.

Whyte señaló que las aseguradoras ya utilizan IA y que “los médicos siguen enfrentando retrasos en la atención de los pacientes, decisiones poco claras de las aseguradoras, reglas de autorización inconsistentes y una carga administrativa abrumadora”.

Las aseguradoras responden

Con legislación aprobada o pendiente de aprobación en por lo menos nueve estados, aún no está claro el impacto real que tendrán esas leyes estatales, dijo Daniel Schwarcz, profesor de Derecho en la Universidad de Minnesota. Los estados no pueden regular los planes “autoasegurados”, que utilizan muchos empleadores; solo el gobierno federal tiene esa facultad.

Pero hay problemas más profundos, dijo Schwarcz: la mayoría de las leyes estatales que ha visto exigirían que un ser humano apruebe cualquier decisión propuesta por la IA, pero no especifican qué significa eso en la práctica.

Las leyes no ofrecen un marco claro para entender cuánta revisión es suficiente y, con el tiempo, los humanos tienden a volverse un poco descuidados y simplemente dan el visto bueno a cualquier sugerencia de una computadora, dijo.

Aun así, las aseguradoras ven esta ola de proyectos de ley como un problema.

“En términos generales, la carga regulatoria es real”, dijo Dan Jones, vicepresidente sénior de asuntos federales de la Alliance of Community Health Plans, un grupo comercial que representa a algunas aseguradoras de salud sin fines de lucro. Si las aseguradoras pasan mucho tiempo lidiando con un mosaico de leyes estatales y federales, agregó, eso significa que se dispondrá de “menos tiempo y recursos para enfocarnos en lo que se supone que debemos hacer: asegurarnos de que los pacientes tengan el acceso adecuado a la atención médica”.

Linda Ujifusa, senadora estatal demócrata en Rhode Island, dijo que las aseguradoras se opusieron el año pasado a un proyecto que presentó para restringir el uso de la IA en las denegaciones de cobertura. Fue aprobado en una cámara, pero en la otra no avanzó.

“Hay una oposición enorme” a cualquier intento de regular prácticas como la autorización previa, dijo, y también “una oposición enorme” a señalar a intermediarios —como las aseguradoras privadas o los administradores de beneficios farmacéuticos— “como parte del problema”.

En una carta en la que criticó el proyecto, AHIP, el principal grupo que representa a las aseguradoras, pidió “políticas equilibradas que promuevan la innovación y, al mismo tiempo, protejan a los pacientes”.

“Los planes de salud reconocen que la IA tiene el potencial de impulsar mejores resultados en la atención médica mejorando la experiencia del paciente, cerrando brechas en la atención, acelerando la innovación y reduciendo la carga administrativa y los costos para mejorar el enfoque en la atención al paciente”, dijo Chris Bond, portavoz de AHIP, a KFF Health News.

Y agregó que el sector necesita “un enfoque nacional coherente basado en un marco federal integral de políticas de IA”.

En busca de equilibrio

En California, Newsom ha promulgado algunas leyes que regulan la IA, incluida una que exige que las aseguradoras de salud garanticen que sus algoritmos se apliquen de manera justa y equitativa. Pero el gobernador demócrata ha vetado otras iniciativas con un enfoque más amplio, como un proyecto que imponía más requisitos sobre cómo debe funcionar la tecnología y que exigía revelar su uso a reguladores, médicos y pacientes cuando lo pidieran.

Según Chris Micheli, lobista de Sacramento, es probable que el gobernador quiera asegurarse de que el presupuesto estatal —que se mantiene fuerte gracias a las grandes ganancias de la Bolsa, especialmente de las empresas tecnológicas— no se resienta. Y para eso, dijo, hace falta equilibrio.

Newsom está tratando de “garantizar que ese flujo de dinero continúe y, al mismo tiempo, que haya algunas protecciones para los consumidores de California”, afirmó. Añadió que las aseguradoras consideran que ya están sujetas a una gran cantidad de regulaciones.

La administración Trump parece estar de acuerdo. La reciente orden ejecutiva del presidente propone demandar ante la Justicia y restringir ciertos fondos federales a cualquier estado que apruebe lo que caracteriza como una regulación estatal “excesiva”, con algunas excepciones, como las políticas destinadas a proteger a los niños.

Esa orden posiblemente sea inconstitucional, dijo Carmel Shachar, experta en políticas de salud de la Facultad de Derecho de Harvard. La autoridad para invalidar leyes estatales generalmente recae en el Congreso, explicó, y los legisladores federales consideraron en dos ocasiones, pero finalmente rechazaron, una disposición que prohibía a los estados regular la IA.

“Según nuestro conocimiento previo del federalismo y del equilibrio de poderes entre el Congreso y el Poder Ejecutivo, es muy probable que una impugnación tenga éxito”, dijo Shachar.

Algunos legisladores ven la orden de Trump con mucho escepticismo, y señalan que la administración ha eliminado controles y ha impedido que otros los establezcan, en un grado extremo.

“En este momento, no se trata de decidir si la regulación debe ser federal o estatal”, dijo Alex Bores. “La pregunta es si va a haber regulación a nivel estatal o directamente no va a haber ninguna”.

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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ASHEVILLE, N.C. — At around 2 a.m., 7-year-old twin brothers arrived at Mission Hospital in Asheville. Both had a fever, a cough, a rash, pink eye, and cold symptoms.

The boys sat in one waiting room and then another. Two hours and 20 minutes passed before the two were isolated, according to Centers for Medicare & Medicaid Services records obtained by KFF Health News. Then two more hours ticked by.

As the sun rose, an emergency room doctor called the state epidemiologist and described the symptoms. The public health official told him to keep the kids in the hospital and quarantine them. Shortly after that call, the patients were diagnosed.

It was measles.

Hospital staff gave the father instructions on how to quarantine the family and sent them home.

The virus exposed at least 26 other people in the hospital that January day, federal investigators determined. Health inspectors for CMS investigated the measles infections and other failures in care and concluded that the twins’ symptoms should have triggered an isolation procedure for which Mission Hospital staffers had trained seven months earlier. CMS designated Mission in “Immediate Jeopardy” for the exposures and other unrelated issues, one of the most severe sanctions a hospital can face, threatening to pull federal funding unless it remedied the problems.

A spokesperson for Mission said its staff was trained to manage airborne sickness and is following federal rules.

As U.S. hospitals face an increasing risk of encountering measles, and pressure to immediately spot it, health care workers face an unusual barrier: Many don’t know what it looks like.

“There’s a word, ‘morbilliform’ — it means measles-like, and there are lots of viruses that can cause a rash that looks like a measles rash in children,” said Theresa Flynn, a pediatrician in Raleigh and the president of the North Carolina Pediatric Society. In 30 years in health care, she’s never seen a measles case, she said.

North Carolina has reported more than 20 cases since mid-December, and more than 3,000 people nationwide have been infected since the beginning of 2025.

Children in areas with low immunization rates have been especially susceptible to outbreaks, triggering public health campaigns to promote the measles vaccine. CMS Administrator Mehmet Oz encouraged vaccination in a CNN interview on Feb. 8.

With two doses of the measles, mumps, and rubella vaccine, a person has a 3% chance of getting the virus after exposure. If exposed, an unvaccinated person has a 90% chance of being infected, according to the CDC. It can take a week or two before someone infected with measles shows symptoms.

But for the past year, the Trump administration has sown doubt about vaccine effectiveness. Health and Human Services Secretary Robert F. Kennedy Jr. was a longtime anti-vaccine activist before taking office, and under his leadership the Centers for Disease Control and Prevention has reduced the number of shots recommended to children.

After measles erupted in West Texas last year, Kennedy publicly recommended unconventional and unproven treatments for the virus, including steroids, antibiotics, and cod liver oil.

Infectious disease experts and doctors said federal policies have left health care workers to lean on their own experience or guidance from their state public health systems to fight a disease that many are preparing to see for the first time and that initially may behave like the common cold.

“As measles becomes more common, all of us are leveling up in our ability to recognize and immediately respond to suspected measles,” Flynn said.

Three C’s

Officially, the U.S. has maintained “measles elimination status” since 2000, meaning the U.S. has avoided significant spread of the virus. After outbreaks in Texas, Arizona, Utah, and now South Carolina, the nation is on track to lose that designation before the year is out. Its own adopted regulations tie elimination status to a lack of a continuous viral spread persisting for 12 months.

One county in South Carolina, an hour’s drive from Asheville, has had more than 900 cases in the current outbreak — more than Texas reported in all of 2025.

Symptoms of measles, a virus that attacks the lungs and airways, can include fever, cough, a blotchy rash, and red, watery eyes. Researchers consider measles among the most contagious diseases, and the virus may remain active for up to two hours after an infected person leaves a room.

It can be lethal, with 1 to 3 deaths per 1,000 cases in children.

In 2025, two children in Texas and one adult in New Mexico died of measles.

Along with tracking data, the CDC provides detailed summaries on its website for diagnosing measles. State public health agencies and some counties have developed dashboards tracing the disease as it surfaces in such places as hospitals, schools, grocery stores, and airports. Large hospital systems developed staff training protocols last year and shared them with area clinics.

Look for the three C’s, that guidance said: cough, coryza (cold symptoms), and conjunctivitis (pink eye). According to CMS inspection records, HCA Healthcare, which owns Mission Hospital, trained Mission staff on the three C’s early last year. On top of failing to isolate the twin patients right away, Mission staff didn’t have a designated area for patients with respiratory symptoms, federal inspectors found.

The CDC advises health workers to immediately place patients with measles or suspicious symptoms in a special isolation room, where airflow is controlled inward. The Mission patients were separated from other patients only by plastic partitions, according to the CMS records.

Mission spokesperson Nancy Lindell said the hospital was equipped and staffed to manage airborne illnesses like measles.

“Our hospital has been working with state and federal health officials on proactive preparedness, and we are following guidance provided by the CDC,” Lindell said.

(Dogwood Health Trust, a private foundation established as part of HCA’s purchase of Mission Health, helps fund KFF Health News coverage.)

Most U.S. clinics and hospitals have never experienced measles cases, said Patsy Stinchfield, a former president of the National Foundation for Infectious Diseases and a nurse practitioner. She called CMS’ Immediate Jeopardy penalty for Mission “extreme,” given the virus can be so difficult to identify.

“In the middle of winter right now, measles looks like every other viral respiratory infection that kids come in with,” Stinchfield said.

The CDC has been less communicative in the past year with clinics about their response to outbreaks, said health workers and infectious disease experts. This disconnect began soon after Trump took office, according to a KFF Health News investigation finding that health officials in West Texas were unable to talk with CDC scientists as measles surged last February and March.

“We certainly do not feel the support or guidance from the CDC right now,” said Brigette Fogleman, a pediatrician at Asheville Children’s Medical Center, where staff members have come up with their own method of staving off the virus: screening patients over the phone and in their cars before a visit.

In response to questions about how the CDC is supporting health care organizations during the measles resurgence, spokesperson Andrew Nixon said that “state and local health departments have the lead in investigating measles cases and outbreaks” and that the CDC provides support “as requested.” He pointed to numerous guides and simulation tools the agency has developed as the virus has spread.

Jennifer Nuzzo, an epidemiologist and director of the Pandemic Center at Brown University, acknowledged that diagnosing measles is a major challenge, emphasizing that coordination among public health agencies is critical in overcoming that challenge.

Stinchfield attributed the spread of measles to CDC leaders’ lack of communication to clinics and to the public — no ads on buses, no social media campaigns, no sense of urgency. “When you are at the highest level of measles cases in 30 years, we should be seeing lots more from our federal government,” Stinchfield said. “And I think it’s harming kids and causing an inordinate amount of work and expense that really doesn’t belong in health care right now.”

State Prepares for More Measles Cases

In North Carolina’s Buncombe County, home to Asheville and Mission Hospital, health officials had counted seven measles cases by mid-February and anticipated many more, according to state epidemiologist Zack Moore. It’s unclear how many of those are connected to the Mission exposure.

“We are preparing for a future in which we follow a trajectory like South Carolina,” Moore said, “where we see sort of a gradual accumulation of cases, and then all of a sudden it reaches kind of a tipping point, and we see a more explosive growth in the outbreak and spread across the state.”

Fogleman, who is also a pediatrician, and Buncombe health department director Jennifer Mullendore spoke during a recent Facebook livestream hosted by the county, urging families to get their children vaccinated, debunking vaccine misinformation, and updating parents on local case numbers.

Days before, a local private school had quarantined about 100 students after an exposure. Only 41% of students there were immunized, according to state data.

At Fogleman’s clinic, parents are asked to wait in their vehicles with their children, and staffers come out to screen them there. Some parents resist vaccination and note recently weakened federal recommendations around measles vaccines for children under 4, she said.

Kennedy handpicked the committee members who made those recommendations, with several members having spread medical misinformation in the past.

One parent recently told a nurse, “It’s only measles. It doesn’t kill anybody,” Fogleman said.

That’s not true, her team must explain.

As the clinic holds families in the parking lot, trying to figure out whether symptoms point to the dangerous virus, it’s difficult to get the message across, Fogleman said, especially when the nation’s top disease agency hasn’t conducted a widespread information campaign about the risks from measles — or the vaccine’s ability to almost entirely prevent it.

“We can’t change the past,” Fogleman said. “All we can do is try to educate and move forward.”

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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Dr. Ralph Abraham, the agency’s principal deputy director, has called the Covid vaccines “dangerous.” Other skeptics have recently left federal health roles.

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When Lisa Bonfield gave birth to daughter Adele in late November, she was thrust into the new world of parenting, and faced an onslaught of challenges and skills to learn: breastfeeding, diapering, sleep routines, colic, crying, and all the little warning signs that something could be wrong with the baby.

But unlike parents in most of the U.S., she had extra help that was once much more common: house calls.

Adele was only a few weeks old when a registered nurse showed up at Bonfield’s door on Dec. 10 to check on them and offer hands-on help and advice.

As a city resident who had recently given birth, she was eligible for up to three home visits from Family Connects New Orleans, a program of the city health department.

She didn’t need to feed and change the baby before packing everything up for a car trip to the pediatrician or a clinic. It was a relief; Bonfield was exhausted and was still trying to figure out how to use the infant car seat.

“Everything is so abstract before you have a baby,” Bonfield said. “You are going to have questions you never even thought about.”

Louisiana is among the worst-performing states in maternal and infant health outcomes. So New Orleans is trying to catch health issues early — and get families off to an easier start — by adding health visits during the crucial first months of life.

The hope is that health outcomes can be improved by returning to the old-fashioned medical practice of house calls.

The Family Connects model has been tried in communities across 20 states. It began in Durham, North Carolina, in 2008, as a partnership with Duke University. In 2023, New Orleans’ health director, Jennifer Avegno, helped launch a local version of the program.

Avegno was concerned by Louisiana’s particularly grim statistics for maternal and infant health.

The state has some of the highest rates of preterm births, unnecessary cesarean sections, and maternal and infant deaths, according to the March of Dimes. A recent analysis from the United Health Foundation found that Louisiana was the “least healthy” state for women and children.

“We got to do some real things real differently, unless you like being No. 50 all the time,” Avegno said.

The home visits are free and available to anyone who has just given birth in a New Orleans hospital, no matter their insurance status or income level.

Avegno describes the home visits as going “back to the future,” replicating a practice that was far more common a hundred years ago.

“There is no more critical time and vulnerable time than right at birth and in the few weeks to months following birth,” Avegno said.

The nurses arrive with diaper bags filled with newborn essentials, from diapers to nipple cream. They weigh, measure, and examine the babies, and check in with the mothers about their health and well-being. They offer referrals to other programs across the city.

They ask if the family has enough food, and whether there are guns in the house and how they’re stored, Avegno said.

In Bonfield’s case, the nurse stayed for over two hours. Bonfield especially liked their conversation about how to safely store breastmilk.

“I’ve never felt so well taken care of and listened to,” she said.

Broad Support

Louisiana has struggled a long time with poor maternal and infant health outcomes, but the problem has been complicated by the state’s strict abortion ban.

The 2022 law led to risky medical delays and unnecessary surgeries in obstetrical care, and confusion among doctors about what’s allowed in ending dangerous pregnancies or treating miscarriages.

Avegno opposes the state’s abortion policies, believing they are harmful to women’s health. But she says that Family Connects offers other ways to preserve and expand care for women. For example, the visiting nurse can check in with the mother about whether she needs help with birth control.

“We can’t give them abortion access,” she said. “That’s not the goal of this program, and that wouldn’t be possible anyway. But we can make sure they’re healthy and understand what their options are for reproductive health care.”

Abortion politics aside, the postpartum home visits seem to have bipartisan support in Louisiana, and state lawmakers want to expand their availability.

Last year, the Republican-dominated legislature passed a law requiring private insurance plans to cover the visits.

The new law is another way that Louisiana officials can be “pro-life,” said state Rep. Mike Bayham, who, as a Republican and an abortion opponent, sponsored the legislation.

“One of the slings used against advocates against abortion is that we’re pro-birth, and not truly pro-life,” Bayham said. “And this bill is proof that we care about the overall well-being of our mothers and our newborns.”

Improving Health and Help for Postpartum Depression

Two years in, there are already promising signs that the program is improving health.

Early data analyzed by researchers at Tulane University showed that families who got the visits were more likely to stick to the recommended schedule of pediatric and postpartum checkups. Moms and babies were also less likely to need hospitalization, and overall health care spending was down among families insured by Medicaid.

Research on Family Connects programs elsewhere has found similar results. In North Carolina, one study showed that three to seven home visits reduced trips to the emergency room by 50% in the year before a baby turned 1.

But the statistic that most excited Avegno related to the program’s role in screening mothers for postpartum depression.

The visiting nurses are helping spot more cases of postpartum depression — earlier — so that new moms can get treatment. About 10% of moms participating in the New Orleans program were eventually diagnosed with postpartum depression, compared with 6% of moms who did not get the visits.

Timely diagnosis is important to prevent depression symptoms from worsening, or leading to more severe outcomes, such as suicidal thoughts, thoughts of harming the baby, or problems bonding with their newborn.

Lizzie Frederick was one of the New Orleans mothers whose postpartum symptoms were caught early by a visiting nurse.

When she was pregnant, she and her husband took all the childbirth and newborn classes they could. They hired a doula to help with the birth. But Frederick still wasn’t prepared for the stresses of the postpartum period, she said.

“I don’t think there are enough classes out there to prepare you for all the different scenarios,” Frederick said.

When her son, James, was born in May, he had trouble breastfeeding. He was sleeping for only 90-minute stretches at night.

When the nurse arrived for the first visit a few weeks later, Frederick was busy trying to feed James. But the nurse reassured her that there was no rush. She could wait.

“I am here to support you and take care of you,” Frederick recalled the nurse saying.

The nurse weighed James, and Frederick was relieved to learn he was gaining weight. But for most of the visit, the nurse focused on Frederick’s needs. She was exhausted, anxious, and had started hearing what she called phantom cries.

The nurse walked her through a mental health questionnaire. Then she recommended that Frederick see a counselor and consider attending group therapy sessions for perinatal women.

Frederick followed up on these suggestions and was eventually diagnosed with postpartum depression.

“I think that I would have felt a lot more alone if I hadn’t had this visit, and struggled in other ways without the resources that the nurse provided,” Frederick said.

Home Visits Save Money

Melissa Goldin Evans, an assistant professor at Tulane’s School of Public Health, helped interview over 90 families participating in the Family Connects New Orleans program.

“It was overwhelmingly positive experiences,” she said. “This is like a gold-standard public health project, in my opinion.”

To operate, Family Connects costs the city about $1.5 million a year, or $700 per birth, according to Avegno. But the program also has the potential to save money: Research on North Carolina’s program found that every $1 invested in the program saved $3.17 in health care billing before the child turned 2.

That’s another reason to require the visits statewide, according to state Rep. Bayham.

“The nurses and medical practitioners will be able to monitor potential problems on the front end, so that they could be handled without a trip to the emergency room or something even more drastic,” he said.

Avegno is advocating that the program be included in Louisiana’s Medicaid program, since more than 60% of births in the state are covered by Medicaid. A recent legislative report made the same recommendation.

This article is from a partnership that includes WWNO, NPR, and KFF Health News.

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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Céline Gounder, KFF Health News’ editor-at-large for public health, discussed on CBS News 24/7’s The Daily Report on Feb. 16 how the recent deaths of two actors sparked searches for colorectal cancer information.

KFF Health News Southern correspondent Sam Whitehead discussed on WUGA’s The Georgia Health Report on Feb. 13 how the Justice Department is pulling back its oversight of Georgia’s system for people with disabilities.

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President Trump’s executive order aimed at spurring production of a pesticide has infuriated leaders of Health Secretary Robert F. Kennedy Jr.’s MAHA movement.

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Tamar Abrams had a lousy couple of years in 2022 and ’23. Both her parents died; a relationship ended; she retired from communications consulting. She moved from Arlington, Virginia, to Warren, Rhode Island, where she knew all of two people.

“I was kind of a mess,” recalled Abrams, 69. Trying to cope, “I was eating myself into oblivion.” As her weight hit 270 pounds and her blood pressure, cholesterol, and blood glucose levels climbed, “I knew I was in trouble health-wise.”

What came to mind? “Oh, oh, oh, Ozempic!” — the tuneful ditty from television commercials that promoted the GLP-1 medication for diabetes. The ads also pointed out that patients who took it lost weight.

Abrams remembered the commercials as “joyful” and sometimes found herself humming the jingle. They depicted Ozempic-takers cooking omelets, repairing bikes, playing pickleball — “doing everyday activities, but with verve,” she said. “These people were enjoying the hell out of life.”

So, just as such ads often urge, even though she had never been diagnosed with diabetes, she asked her doctor if Ozempic was right for her.

Small wonder Abrams recalled those ads. Novo Nordisk, which manufactures Ozempic, spent an estimated $180 million in direct-to-consumer advertising in 2022 and $189 million in 2023, according to MediaRadar, which monitors advertising.

By last year, the sum — including radio and TV commercials, billboards, and print and digital ads — had reached an estimated $201 million, and total spending on direct-to-consumer advertising of prescription drugs topped $9 billion, by MediaRadar’s calculations.

Novo Nordisk declined to address those numbers.

Should it be legal to market drugs directly to potential patients? This controversy, which has simmered for decades, has begun receiving renewed attention from both the Trump administration and legislators.

The question has particular relevance for older adults, who contend with more medical problems than younger people and are more apt to take prescription drugs. “Part of aging is developing health conditions and becoming a target of drug advertising,” said Steven Woloshin, who studies health communication and decision-making at the Dartmouth Institute.

The debate over direct-to-consumer ads dates to 1997, when the FDA loosened restrictions and allowed prescription drug ads on television as long as they included a rapid-fire summary of major risks and provided a source for further information.

“That really opened the door,” said Abby Alpert, a health economist at the Wharton School of the University of Pennsylvania.

The introduction of Medicare Part D, in 2006, brought “a huge expansion in prescription drug coverage and, as a result, a big increase in pharmaceutical advertising,” Alpert added. A study she co-wrote in 2023 found that pharmaceutical ads were much more prevalent in areas with a high proportion of residents 65 and older.

Industry and academic research have shown that ads influence prescription rates. Patients are more apt to make appointments and request drugs, either by brand name or by category, and doctors often comply. Multiple follow-up visits may ensue.

But does that benefit consumers? Most developed countries take a hard pass. Only New Zealand and, despite the decadelong opposition of the American Medical Association, the United States allow direct-to-consumer prescription drug advertising.

Public health advocates argue that such ads encourage the use and overuse of expensive new medications, even when existing, cheaper drugs work as effectively. (Drug companies don’t bother advertising once patents expire and generic drugs become available.)

In a 2023 study in JAMA Network Open, for instance, researchers analyzed the “therapeutic value” of the drugs most advertised on television, based on the assessments of independent European and Canadian organizations that negotiate prices for approved drugs.

Nearly three-quarters of the top-advertised medications didn’t perform markedly better than older ones, the analysis found.

“Often, really good drugs sell themselves,” said Aaron Kesselheim, senior author of the study and director of the Program on Regulation, Therapeutics, and Law at Harvard University.

“Drugs without added therapeutic value need to be pushed, and that’s what direct-to-consumer advertising does,” he said.

Opponents of a ban on such advertising say it benefits consumers. “It provides information and education to patients, makes them aware of available treatments and leads them to seek care,” Alpert said. That is “especially important for underdiagnosed conditions,” like depression.

Moreover, she wrote in a recent JAMA Health Forum commentary, direct-to-consumer ads lead to increased use not only of brand-name drugs but also of non-advertised substitutes, including generics.

The Trump administration entered this debate last September, with a presidential memorandum calling for a return to the pre-1997 policy severely restricting direct-to-consumer drug advertising.

That position has repeatedly been urged by Health and Human Services Secretary Robert F. Kennedy Jr., who has charged that “pharmaceutical ads hooked this country on prescription drugs.”

At the same time, the FDA said it was issuing 100 cease-and-desist orders about deceptive drug ads and sending “thousands” of warnings to pharmaceutical companies to remove misleading ads. Marty Makary, the FDA commissioner, blasted drug ads in an essay in The New York Times.

“There’s a lot of chatter,” Woloshin said of those actions. “I don’t know that we’ll see anything concrete.”

This month, however, the FDA notified Novo Nordisk that the agency had found its TV spot for a new oral version of Wegovy false and misleading. Novo Nordisk said in an email that it was “in the process of responding to the FDA” to address the concerns.

Meanwhile, Democratic and independent senators who rarely align with the Trump administration also have introduced legislation to ban or limit direct-to-consumer pharmaceutical ads.

Last February, independent Sen. Angus King of Maine and two other sponsors introduced a bill prohibiting direct-to-consumer ads for the first three years after a drug gains FDA approval.

King said in an email that the act would better inform consumers “by making sure newly approved drugs aren’t allowed to immediately flood the market with ads before we fully understand their impact on the general public.”

Then, in June, he and independent Sen. Bernie Sanders of Vermont proposed legislation to ban such ads entirely. That might prove difficult, Woloshin said, given the Supreme Court’s Citizens United ruling protecting corporate speech.

Moreover, direct-to-consumer ads represent only part of the industry’s promotional efforts. Pharmaceutical firms actually spend more money advertising to doctors than to consumers.

Although television still accounts for most consumer spending, because it’s expensive, Kesselheim pointed to “the mostly unregulated expansion of direct-to-consumer ads onto the web” as a particular concern. Drug sales themselves are bypassing doctors’ practices by moving online.

Woloshin said that “disease awareness campaigns” — for everything from shingles to restless legs — don’t mention any particular drug but are “often marketing dressed up as education.”

He advocates more effective educational campaigns, he said, “to help consumers become more savvy and skeptical and able to recognize reliable versus unreliable information.”

For example, Woloshin and Lisa Schwartz, a late colleague, designed and tested a simple “drug facts box,” similar to the nutritional labeling on packaged foods, that summarizes and quantifies the benefits and harms of medications.

For now, consumers have to try to educate themselves about the drugs they see ballyhooed on TV.

Abrams read a lot about Ozempic. Her doctor agreed that trying it made sense.

Abrams was referred to an endocrinologist, who decided that her blood glucose was high enough to warrant treatment. Three years later and 90 pounds lighter, she feels able to scramble after her 2-year-old grandson, enjoys Zumba classes, and no longer needs blood pressure or cholesterol drugs.

So Abrams is unsure, she said, how to feel about a possible ban on direct-to-consumer drug ads.

“If I hadn’t asked my new doctor about it, would she have suggested Ozempic?” Abrams wondered. “Or would I still weigh 270 pounds?”

The New Old Age is produced through a partnership with The New York Times.

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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Mary Agnes Carey KFF Health News @maryagnescarey Read Mary Agnes' stories.

The midterm elections are months away, yet changes at the Department of Health and Human Services suggest the Trump administration is focusing on how to win on health care, which remains a top concern for voters. Facing growing concern about the administration’s actions on vaccines in particular, the Food and Drug Administration this week reversed course and said it would review a new mRNA-based flu vaccine after all.

And some top HHS officials are changing seats as the Senate prepares for the long-delayed confirmation hearing of President Donald Trump’s nominee for surgeon general, Casey Means.

This week’s panelists are Mary Agnes Carey of KFF Health News, Tami Luhby of CNN, Shefali Luthra of The 19th, and Lauren Weber of The Washington Post.

Panelists

Tami Luhby CNN @Luhby Read Tami's stories. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories. Lauren Weber The Washington Post @LaurenWeberHP Read Lauren's stories.

Among the takeaways from this week’s episode:

  • After a week of bad press, the FDA announced it would review Moderna’s application for a new flu vaccine. Yet the agency’s original refusal fits a pattern of agency decision-making based on individual officials’ views rather than set guidelines — and reinforces a precedent that’s problematic for drug development.
  • Those caught up in the latest HHS leadership shake-up include Jim O’Neill, who, as acting director of the Centers for Disease Control and Prevention, signed off on changes to the childhood vaccine schedule. His removal from that role comes as the White House is showing more interest in controlling health care messaging ahead of the midterms — and as polling shows Americans are increasingly concerned about federal vaccine policy.
  • Senators will hear from Means next week as they consider her nomination as surgeon general. Means, a key figure in the “Make America Healthy Again” movement, is expected to be asked about her medical credentials and past, problematic claims about medicine.
  • And while early numbers show that Affordable Care Act marketplace enrollment has not dipped as much as feared, Americans are still absorbing the rising cost of health care this year. The collapse of congressional efforts to reach a deal on renewing enhanced premium subsidies could be an issue for voters come November.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:  

Mary Agnes Carey: Politico’s “Why Congress Failed To Reach an Obamacare Deal,” by Robert King and Simon J. Levien. 

Lauren Weber: NiemanLab’s “The Atlantic’s Elizabeth Bruenig on Her ‘Hypothetical,’ Heavily Reported Measles Essay,” by Laura Hazard Owen. 

Tami Luhby: The City’s “NewYork-Presbyterian Nurses Reject Contract by Overwhelming Margin,” by Claudia Irizarry Aponte and Ben Fractenberg. 

Shefali Luthra: NPR’s “Minneapolis Doctors Warn of Lasting Medical Effects, Even After ICE Agents Leave,” by Jasmine Garsd. 

Also mentioned in this week’s episode:

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Less than 36 hours before his wife was scheduled to undergo major surgery, New York Times personal finance columnist Ron Lieber got an unwelcome letter from his family’s insurance plan: It was denying prior authorization for the procedure. 

With no time to lodge an appeal, Lieber and his wife decided to proceed and bet on her doctors’ ability to reverse the decision post-surgery. They succeeded, but the experience troubled Lieber. Why had no one warned them sooner? He set out to find answers to help people avoid scrambling to deal with a last-minute denial.

In this episode of An Arm and a Leg, Lieber shares with host Dan Weissmann takeaways from his New York Times series about how doctors and other health care clinicians can do a better job of keeping patients informed.

Dan Weissmann @danweissmann @danweissmann.bsky.social Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on "All Things Considered," the BBC, "99% Invisible," and "Reveal," from the Center for Investigative Reporting.

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Emily Pisacreta Producer Claire Davenport Producer Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: NYT’s Ron Lieber: ‘These people are not going to win.’

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there. Let’s meet somebody. 

Ron Lieber: I’m Ron Lieber. I write the “Your Money” column for the New York Times. I write all sorts of books, and I live in Brooklyn, New York.

Dan:  Ron’s specialty is beating the system: How to not pay more than you really need to. His most recent book — about paying for college — we’ve practically worn out our copy around my house. 

Now, it’s possible Ron’s not the most prominent journalist in his household. A major Hollywood movie a few years ago had Zoe Kazan starring as Ron’s wife, Jodi Kantor. 

Zoe Kazan as Jodi Kantor: Hi. We’re from the New York Times. I believe you used to work for Harvey Weinstein.

Dan: She was one of the reporters who exposed the movie producer Harvey Weinstein’s history of sexual assault, and helped kick start the Me Too movement. I mean, that’s hard to beat. 

In 2024, Jodi was diagnosed with breast cancer, and she got scheduled for surgery at Memorial Sloan Kettering on a Monday morning in December.

Ron Lieber: And she was doing all the things you’re supposed to do to get ready for surgery. She did the meditation for a week and, you know, she wound down everything at work she went away for a couple days with friends.

Dan: So on Saturday, two days before surgery, Jodi is on that trip with friends. Ron spends the day with their 9-year-old, just the two of them.

Ron Lieber: And we get home and there’s a pile of mail and I put the 9-year-old to bed and I start going through the mail and there is a fat envelope from United Healthcare.

Dan: Ron says he suspects right away that it’s bad news about the surgery.

Ron Lieber: And sure enough it’s, you know, kind of pages of gobbledygook, but it’s clear from the cover page, that they’re issuing a partial denial, in effect, and we have, flunked partially, our prior authorization test.

Dan: Prior authorization. It rings a bell. He does a quick search to get his bearings– and quickly realizes: This is a HUGE phenomenon. It hasn’t hit him personally before, but it hits millions of people every year.

Ron Lieber: So at this point, a whole bunch of stuff goes through my head.

Dan: First, professional embarrassment. Ron’s a personal finance columnist at the New York Times. And he’s thinking: how could he have missed something that causes so much personal financial distress to so many people? 

Ron Lieber: I had that same feeling that I did in 2008.

Dan: When the financial crisis hit and he hadn’t seen it coming. 

Ron Lieber: Back in 2008. It was, you know, Ron, why did you not become an expert on mortgage securitization before now?

Dan: This time, it’s prior authorization. Ron manages to forgive himself pretty quickly on that score– and move on to more pressing concerns.

Ron Lieber: The first thing I gotta figure out is: What am I gonna say to Jodi?

Dan: Is he gonna crash her pre-op mellow she’s worked so hard for? 

And second: How worried should they be?

Ron Lieber: Should we show up on Monday? What’s the worst thing that can happen? And so I’m starting to do mental math, like what’s the rack rate for this procedure anyway, and I’m thinking, eh, probably 150- $200,000. Right?

Dan: Yeah, like real money. This is the point when a lot of people would decide to reschedule surgery. But Ron digs into the paperwork, and he can see this denial is a mistake. United isn’t even denying the reconstructive part of Jodi’s surgery — the part a plastic surgeon does. They’re denying the mastectomy itself.

That’s gotta be wrong. And Ron decides that is not going to stick.

Ron Lieber: These people are not going to win. I am going to win, because I’m Ron Lieber.

Dan: He’s a professional at beating the system. 

Ron Lieber: I’m gonna stand up for my wife.

Dan: And he’s not in this alone.

Ron Lieber: I work for a big company. We have excellent HR people. 

Dan: And he figures the hospital will hold up their end in this fight.

Ron Lieber: I imagine that there are 10, 15, 20 people at Memorial Sloan Kettering who do nothing but deal with nonsense, all day long. So one way or another, we’re gonna win.

Dan: One thing he says knows he WON’T do in this fight: Let on to anybody at the hospital or the insurance company that they should give him special treatment because he, you know, works for the New York Times.

Ron Lieber: We have the strictest ethics code, probably on the planet, right? We get fired for throwing our weight around. The moment you open your mouth at 1-800 United Healthcare and say, I work for the New York Times, stop messing around with me, you lose your job. There’s no second chances.

Dan: He DOES plan on taking notes. Because eventually, this could be a good story.

And I’ll just tell you right now. It was. Ron eventually put his family’s story in the New York Times, looking to help other people avoid — at the least — getting a scary notice that there’s some problem with their insurance with no time to do anything about it.

Hundreds of readers wrote back with their own stories, with suggestions, with complaints.

And Ron responded by coming back to the story with a tool he hoped people — actually people’s doctors — could use to prevent these kind of scary situations, at least some of them.

I freaking love it.

This is An Arm and a Leg — a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So the job we’ve chosen on this show is to take one of the most terrifying, enraging, depressing parts of American life, and bring you something entertaining, empowering, and useful.

Jodi comes home from her trip with friends on Sunday. Surgery is scheduled for the next morning, first thing. Ron tells her the news. She hits the roof.

Ron Lieber: She’s not angry, she’s just sad and she’s stressed all the things that should not happen, right, when you’re going into major surgery. 

Dan: Meanwhile, Ron does what he can to get the insurance thing resolved. Which, on a Sunday, isn’t much. 

Ron Lieber: There’s this stupid appeal form that you can send to a supposed emergency fax line. So, you know, I download E-fax for the first time in 19 years, um, and send the fax off into the ether. Nothing happens.

Dan: Next morning, they show up for surgery, and once Jodi’s under anesthesia, Ron figures he’s got 6 hours to kill, maybe eight.

So he starts roaming the hospital campus, looking for someone who could explain what was up, and what to do.

Ron Lieber: So I was just showing up at desks saying, Hey, check out this love letter I got from UnitedHealthcare.

Dan: And the people at those desks are like, Oh wow– we got one of these TODAY? 

Because Ron and Jodi’s story was playing out against the backdrop of a much bigger story, one that had started just a few days before.

Jessica Tisch: In Midtown Manhattan, early this morning, 50-year-old Brian Thompson, the CEO of UnitedHealthcare was shot and killed in what appears at this early stage of our investigation to be a brazen, targeted attack.

News announcer: Protestors have targeted United Healthcare, which reportedly denies one of every three claims. 

News reporter: CBS news also confirms law enforcement found shell casings at the crime scene with the words deny, defend, and depose written on them.

Dan: Those words – “deny, defend, depose”– they suggested to lots of people that issues like prior authorization played a role in the killer’s motivation. 

And: Police were chasing the suspected shooter– later identified as Luigi Mangione– that very morning. So when Ron shows up at the billing office with his UnitedHealthcare denial…

Ron Lieber: People are like, oh, is he still on the loose? They just, just couldn’t believe that like this thing, you know, that Luigi was clearly upset about, right, was presenting itself in real time while he was still being chased. 

Dan: They also quickly reassured Ron about his immediate situation.

Ron Lieber: The nice woman in the billing office, you know, clicks a bunch of keys on her keyboard and she pulls it up and she said, oh yeah. She said, this isn’t gonna be a problem. She said, it may take a while. But don’t worry about it.

Dan: And she said something else that gets Ron’s wheels spinning.

Ron Lieber: She said, we got notice of this, you know, seven or eight days ago. If we had thought that there was gonna be a problem, we would’ve called you right away and told you not to come.

Dan: Ron was thinking: I sure wish you’d have given us a heads-up — and this kind of reassurance — before now.

Ron Lieber: I’m mad because we didn’t find out about it until 36 hours ahead of time when it was too late to do anything ’cause it was Saturday night and the surgery was Monday morning. So why didn’t you just tell me?

Dan: And he’s thinking: Ok, what’s my next move?

Ron Lieber: There are three voices played simultaneously in my head at a minimum. Number one is I’ve got a personal situation on my hand that I gotta solve, you know, as cheaply as possible. Number two, this is a story and I ought to be taking really careful notes, not just for my own purposes, but to make sure that I’ve documented things correctly and so that I can, you know, make the best case to the reader and, and the best case to the entities involved when it comes time to ask them some questions. And then number three. Try to avoid as best as I can, compromising the story in any way. Right? So like, don’t lose your temper, don’t lose your patience. Try not to even utter the words the New York Times…

Dan: How do you not blow your cover? 

Ron Lieber: Exactly. Right.

Dan: And there’s another thought: UnitedHealthcare is like the day’s top story. It’s coming out that this issue — pre-authorization — seems to be one of the alleged killer’s big issues.

Ron Lieber: So then I have a conversation with my editors while Jodi is still under anesthesia saying, I think I wanna write about this right now. Right? So this is like an hour before they catch Luigi. We’re right on the news here and I think this is the thing that he was upset about and we should just go with it. And my editor correctly said “no.” In order this for this to be, um, a useful story for the reader and to make sure we are 182% in compliance, you know, with our ethical responsibilities, we gotta let this thing play out to its conclusion on its own.

Dan: Ron went back to focusing on what really mattered to him right then. Which was not getting a scoop. 

Ron Lieber: I was not the main character here. My wife was the main character, right? She was sick. We were trying to fix her. It was a big deal. and I was sort of relieved, you know, at two in the afternoon when my editor was basically like, hit the pause button on this thing.

Dan: And there was more relief coming right up.

Ron Lieber: Jodi does great. The surgery’s successful. The surgeons did an amazing job.They were happy. Recovery was perfect. And we feel real good and so I’m sort of watching the mail.

Dan: Waiting for a super-high bill from the hospital. Or some word from United. Weeks go by. Nothing.

Ron does something that I wouldn’t expect — or necessarily advise — any normal person to do, any civilian: He keeps waiting. 

Partly ‘cause he’s super-confident that this will work out, and as a reporter, he’s gathering data: What would the system do, just left to its own devices?

Finally, on March 1st — more than two and a half months after Jodi’s surgery — Ron calls United. He says, ‘Hey, you said in early December that you were denying us, and I faxed you an appeal. I was just wondering: any news?’

Ron Lieber: And they took a look and they said, oh yeah. Um, the appeal on this one just went today to the physician, uh, who’s going to review the appeal. And I said, you guys waited like two and a half months to do that. And they said, yep. Um, uh, and I thought, well, okay.

Dan: Ron gets off the phone. Waits another few weeks before he finally calls again and hears from a United rep: Yep, this seems to be resolved.

Eventually, Ron gets a bill. It’s reasonable. He pays it. And switches to reporter mode.

So Ron the Reporter gets to ask the same questions Ron the Civilian has been asking all along.

Couldn’t someone have given him and Jodi a heads-up earlier?

Ron: Why did you not just tell us immediately, not through the United States Mail, you know, which some people don’t even open and some people don’t get. Why did you not send up some kind of flare? Send us a text. Call us on her phone, send an email, um, do all three at once. Like fly a freaking, you know, banner over Prospect Park saying, ‘Ron and Jodi call UnitedHealthcare right now. You have a problem.’ 

Dan: There’s a whole HUGE set of questions to ask about prior authorization itself — like, why on EARTH would you deny a mastectomy for breast cancer??

But for this story, Ron’s keeping a narrow focus.

Ron Lieber: The conversation I wanna have with UnitedHealthcare is not, you’re terrible. The system is terrible. Prior authorization is terrible. All I wanted to know was, given that we have to live within this system for now, why didn’t you call us?

Dan: The first words of that question– GIVEN THAT WE HAVE TO LIVE WITHIN THIS SYSTEM FOR NOW — rang out so loud for me. Because, God help us, we do.

And it is such a reasonable question: Isn’t giving people a heads-up the LEAST you could do? So, Ron asked. On the record.

Ron Lieber: And here’s what they said. Um, they said, yeah, you know, we know more needs to be done here about prior auth, you know, blabbity, blah, blah. And then they said this: ‘We continue to make our own changes to help members navigate through these types of situations, including by offering the opt-in paperless communications.’

Dan: Opt-in. Like — oh, well. You COULDA opted in. Ron was like: Grr. You trying to say it’s my fault, because I didn’t opt in? He says he kept arguing to the United spokesperson — who he says was a total gentleman — you really should just go ahead and give people notice. He says it didn’t take. 

Ron Lieber: So I thought to myself, okay, UnitedHealthcare doesn’t seem that excited to change their processes 180 degrees and do what I’m telling them to do. 

Dan: And by the way, Ron says he has one idea about why they wouldn’t.

Ron Lieber:  If they sent out the kind of notices that I am suggesting, they would need twice as many phone reps and it would cost them a ton of money. And they actually do not want people calling about this. But then I had another idea about how to work around them.

Dan: And that is coming right up.

This episode of An Arm and a Leg is a co-production between Public Road Productions and KFF Health News. KFF Health News is a nonprofit newsroom covering health issues in America. Their journalists win all kinds of awards, every year. We are honored to work with them.

So Ron has another idea about how — if we have to live in a system where insurance companies issue stupefying, horrifying denials of care to millions of people — we don’t have to get the news at the last possible minute.

And it’s this: Maybe our PROVIDERS could help us out here. I mean, they want to treat us. They want to get paid. We’re a natural team.

So there was an obvious question to ask the folks at Memorial Sloan Kettering: the question he’d held back from pressing on the day of Jodi’s surgery.

That’s when the lady from the billing department told him they’d known about United’s denial for seven or eight days. Why didn’t you give us a heads up?

Ron Lieber: And, um, basically their response went like this, well, we just don’t wanna bother patients with this. We only wanna bother them with, uh, what they described as clinically necessary information. But here’s my response to that, right? Pre-surgery, mental health ought to be part of the institution’s concern, right? You want people walking in there with their heads clear, without too much worry, without too much fear.

Dan: And again: Ron didn’t find himself persuading Memorial Sloan Kettering to change their policy.

So when he wrote all this up in a column — in August, more than eight months after Jodi’s surgery — he basically had a couple pieces of advice for readers. 

One: Yeah, if your insurance requires you to OPT-IN to get a heads-up, then… OK, opt in.

And two: If you need some kind of treatment, ask your doctor’s office some questions: Is prior authorization gonna come into play here? Can you start requesting it ASAP, so we can avoid some last-minute scramble? And if you hit any roadblocks, can someone give me a heads-up right away? And if *I* find out about a problem, who in your office should I call?

That column got people’s attention. More than 500 people left comments. Ron says even for the New York Times, that’s a lot. A lot of them were supportive. A lot were from people who’d had much worse experiences than Jodi and Ron.

Ron Lieber: There were multiple notes from people who said, I was sent home the morning of surgery because they cannot work it out. And there was one person who had already had the anesthesia stuck in her arm and they yanked the needle out and had to send her away to come back and try another day. 

Dan: Oh my God.

Ron Lieber: And then there was like a small handful of readers that were basically like, you’re an idiot, right? How did you not investigate the possibility of an insurance denial ahead of time? 

Dan: He thought about giving that advice in a follow-up column: Never turn your back for a minute. Make multiple calls.

But he decided to take a different approach.

Ron Lieber: And I thought, okay, well how could this have been avoided, um, in our situation? Oh, they could have just given us a very plain spoken piece of paper, you know, upon diagnosis or when we scheduled the surgery.

Dan: Something to give them a heads-up that this kind of thing could happen. In his newsletter, he asked readers for suggestions about what that piece of paper should say.

He says he got lots of responses — including from some angry physicians. 

Ron Lieber: Who said to me, who are you to tell me how to run my medical practice? And then, and this was the loudest one. This is not my fault. Why are you putting this on me? And there were just as many doctors who wrote in who said, hey, in case I miss the story, can you send this to me when it comes out? 

Dan: And he got lots of good suggestions. So he published a column with a template for a note doctors could use.

Ron Lieber: It said: ‘Hey, um, here’s what prior authorization is, and here’s how it works. Um, sometimes people run into problems, um, where the insurance company says that they’re not gonna pay for stuff. We don’t want you to worry about this. You can call us here or email us here if you run into these issues, and we will try to take care of it. If you have any questions about this form, please call our billing specialist. We understand that you don’t want to take up valuable exam time talking about this with the doctor. Frankly, our doctors don’t either, but we wanna make sure that you know about this ahead of time.’

Dan: Again, lots of responses. Useful responses.

Ron Lieber: I got incredibly good critical feedback. And I realized that the note could get a lot better.

Dan: For instance, Ron’s initial memo included some grouching about insurance companies, from a doctor’s point of view. For instance:

“Often, a doctor will have to do what’s known as a peer review with someone from the insurance company. We find this burdensome, since the “peer” on the line with us may not have the same level of expertise as we do. That prolongs the call, adds to our overall operating expenses and keeps us from spending more time with you, the patient.”

And although lots of doctors say exactly those things in lots of forums, they don’t do it on hospital letterhead. 

Ron Lieber: There were some doctors who said, uh, There’s no way I could ever get this by our lawyers. Um, you know, nice try, uh, wish I wish I could, but ain’t gonna happen over here. To which I said, send it to your lawyer and have them call me and we can have a conversation about what would pass muster.

Dan: Other readers told Ron the language just needed to be simpler. They’d his note through software that analyzes a piece of text for reading difficulty. 

Ron Lieber: And then wrote me notes and said, this is written at a 12th grade level. And like, my patients don’t speak English at a first language, or they’re never gonna read this, and you need to write it at a fifth grade level. And so I, so I thought, okay, yeah, that’s, that’s pretty good advice.

Dan: Ron digested all the feedback on the memo he’d published.

Ron Lieber: And then I published another one, which was better, right? It was shorter, the language was plainer. I took out the the commentary.

Dan: We’ll have a link to that second version wherever you’re listening to this. If you’re a health care worker — or know some health care workers who might find it useful — please check it out, pass it around.

Of all the comments on Ron’s stories, one that stuck with me was from a reader who made a wish that was actually like a lament– on behalf of anybody who needed major medical care. Anyone in that situation, they wrote, Quote: “should be enrolled in a certificate course for how to navigate the healthcare system.

Ron Lieber: So this is the thing, Dan, right? This is why I have a job and I’m pretty sure this is why you have a job too. And I would love to be put out of business, right? But the way in which I would be put out of business. Is if there were mandatory certificate programs in 25 different categories of personal finance existence, right. And so that’s how I would be put outta business. But because nobody’s ever gonna require such a certificate in, in any of the areas of personal finance that we are forced, um, to wade through as human beings, I have a job and I’m just trying to do a better job of it.

Dan: ?I hear that. There is so much I appreciate about having my job, but I wish it weren’t so necessary. Lots of people end up in much worse circumstances than Ron Lieber and Jodi Kantor. 

In a book called “Coverage Denied,” coming out this spring, University of Pittsburgh professor Miranda Yaver cites estimates ranging from 850 million to 3 billion denials a year. 

She also cites data showing that appeals work more often than most of us think — about half the time. 

But appealing is hard work. The less privilege you have — like, say if you don’t have a flexible schedule to call and fax and everything else — the harder it is.

She calls the result “Rationing by inconvenience.”  

And we can all use all the help we can get making life less annoying and inconvenient. Which is why I’m gonna leave you with Ron Lieber’s answer to my last big question for him. 

Because hearing  one part of his advice on how not to get blindsided by an insurance denial led to another question — one that seemed like a good one to ask an expert at beating the system. 

I said:  Hey, you recommend opting in to emails and texts from your insurance company so they might give you a quicker heads-up. 

Let’s say I do. How the heck am I supposed to find that in my inbox — which keeps getting harder to sort through every day with things I don’t want and don’t need to look at? 

I asked him: How do you, Ron Lieber, manage the inbound?  How do you identify what actually needs your attention?

And he had a good answer:

Ron Lieber: ?Yeah. So I have three email inboxes. I have, you know, work email, I have personal email that is only personal correspondence and the most vital other stuff, you know, kids’ school, uh, college tuition payments. And then I have an old Yahoo email for everything else. And so, you know, I read the last 12 to 24 hours of the Yahoo email, you know, once a day or so. Uh, and then, you know, once a month, I’ll open the inbox and I won’t close it until I’ve unsubscribed to 10 things. And, and so that keeps it more or less manageable.

Dan: This is such good advice. I haven’t had a chance to implement it since I talked with Ron — hey, I was on deadline for this episode! — but honest:  I’m going to. 

Here’s one other thing I’m going to do in the next few weeks:  Have surgery myself. A hernia repair, it’s gonna be fine, I’m in great hands.  But it’s happening a few days before our next episode is scheduled to come out.

So, as it happens, I’ve got a great story from somebody ELSE to share with you then. We’ll have another new episode of our own for you when I’m back.

And meanwhile, we’ll keep the First Aid Kit newsletter coming. If you aren’t subscribed, it’s really good! 

My colleagues Emily and Claire have been serving up need-to-know information:  Like, when you get your annual checkup… what’s actually covered?  A lot of the time, it’s less than you’d think.

Which sucks, but is SO important to know. If you’re not signed up, check it out at arm and a leg show dot com, slash, newsletter.

I’ll catch you soon. Till then, take care of yourself.

This episode of An Arm and a Leg was produced me, Dan Weissmann, with help from Emily Pisacreta — and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Sarah Ballema is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

 Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news station.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially.

You can join in any time at arm and a leg show, dot com, slash: support.

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. You can also follow the show on FacebookInstagramLinkedIn, and Bluesky. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

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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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