If they couldn’t reach an agreement, he’d have to find new doctors or new health insurance.

“All my medical information is with Baylor Scott & White,” said Neary, 87, who retired from a career in financial services. His doctors are a five-minute drive from his house. “After so many years, starting over with that many new doctor relationships didn’t feel like an option.”

After several anxious weeks, Neary learned Humana and Baylor were parting ways as of this year, and he was forced to choose between the two. Because the breakup happened during the annual fall enrollment period for Medicare Advantage, he was able to pick a new Advantage plan with coverage starting Jan. 1, a day after his Humana plan ended.

Other Advantage members who lose providers are not as lucky. Although disputes between health systems and insurers happen all the time, members are usually locked into their plans for the year and restricted to a network of providers, even if that network shrinks. Unless members qualify for what’s called a special enrollment period, switching plans or returning to traditional Medicare is allowed only at year’s end, with new coverage starting in January.

But in the past 15 months, the Centers for Medicare & Medicaid Services, which oversees the Medicare Advantage program, has quietly offered roughly three-month special enrollment periods allowing thousands of Advantage members in at least 13 states to change plans. They were also allowed to leave Advantage plans entirely and choose traditional Medicare coverage without penalty, regardless of when they lost their providers. But even when CMS lets Advantage members leave a plan that lost a key provider, insurers can still enroll new members without telling them the network has shrunk.

At least 41 hospital systems have dropped out of 62 Advantage plans serving all or parts of 25 states since July, according to Becker’s Hospital Review. Over the past two years, separations between Advantage plans and health systems have tripled, said FTI Consulting, which tracks reports of the disputes.

CMS spokesperson Catherine Howden said it is “a routine occurrence” for the agency to determine that provider network changes trigger a special enrollment period for their members. “It has happened many times in the past, though we have seen an uptick in recent years.”

Still, CMS would not identify plans whose members were allowed to disenroll after losing health providers. The agency also would not say whether the plans violated federal provider network rules intended to ensure that Medicare Advantage members have sufficient providers within certain distances and travel times.

The secrecy around when and how Advantage members can escape plans after their doctors and hospitals drop out worries Sen. Ron Wyden of Oregon, the senior Democrat on the Senate Finance Committee, which oversees CMS.

“Seniors enrolled in Medicare Advantage plans deserve to know they can change their plan when their local doctor or hospital exits the plan due to profit-driven business practices,” Wyden said.

The increase in insurer-provider breakups isn’t surprising, given the growing popularity of Medicare Advantage. The plans attracted about 54% of the 61.2 million people who had both Medicare Parts A and B and were eligible to sign up for Medicare Advantage in 2024, according to KFF, a health information nonprofit that includes KFF Health News.

The plans can offer supplemental benefits unavailable from traditional Medicare because the federal government pays insurers about 20% more per member than traditional Medicare per-member costs, according to the Medicare Payment Advisory Commission, which advises Congress. The extra spending, which some lawmakers call wasteful, will total about $84 billion in 2025, MedPAC estimates. While traditional Medicare does not offer the additional benefits Advantage plans advertise, it does not limit beneficiaries’ choice of providers. They can go to any doctor or hospital that accepts Medicare, as nearly all do.

Sanford Health, the largest rural health system in the U.S., serving parts of seven states from South Dakota to Michigan, decided to leave a Humana Medicare Advantage plan last year that covered 15,000 of its patients. “It’s not so much about the finances or administrative burden, although those are real concerns,” said Nick Olson, Sanford Health’s chief financial officer. “The most important thing for us is the fact that coverage denials and prior authorization delays impact the care a patient receives, and that’s unacceptable.”

The National Association of Insurance Commissioners, representing insurance regulators from every state, Puerto Rico, and the District of Columbia, has appealed to CMS to help Advantage members.

“State regulators in several states are seeing hospitals and crucial provider groups making decisions to no longer contract with any MA plans, which can leave enrollees without ready access to care,” the group wrote in September. “Lack of CMS guidance could result in unnecessary financial or medical injury to America’s seniors.”

The commissioners appealed again last month to Health and Human Services Secretary Robert F. Kennedy Jr. “Significant network changes trigger important rights for beneficiaries, and they should receive clear notice of their rights and have access to counseling to help them make appropriate choices,” they wrote.

The insurance commissioners asked CMS to consider offering a special enrollment period for all Advantage members who lose the same major provider, instead of placing the burden on individuals to find help on their own. No matter what time of year, members would be able to change plans or enroll in government-run Medicare.

Advantage members granted this special enrollment period who choose traditional Medicare get a bonus: If they want to purchase a Medigap policy — supplemental insurance that helps cover Medicare’s considerable out-of-pocket costs — insurers can’t turn them away or charge them more because of preexisting health conditions.

Those potential extra costs have long been a deterrent for people who want to leave Medicare Advantage for traditional Medicare.

“People are being trapped in Medicare Advantage because they can’t get a Medigap plan,” said Bonnie Burns, a training and policy specialist at California Health Advocates, a nonprofit watchdog that helps seniors navigate Medicare.

Guaranteed access to Medigap coverage is especially important when providers drop out of all Advantage plans. Only four states — Connecticut, Massachusetts, Maine, and New York — offer that guarantee to anyone who wants to reenroll in Medicare.

But some hospital systems, including Great Plains Health in North Platte, Nebraska, are so frustrated by Advantage plans that they won’t participate in any of them.

It had the same problems with delays and denials of coverage as other providers, but one incident stands out for CEO Ivan Mitchell: A patient too sick to go home had to stay in the hospital an extra six weeks because her plan wouldn’t cover care in a rehabilitation facility.

With traditional Medicare the only option this year for Great Plains Health patients, Nebraska insurance commissioner Eric Dunning asked for a special enrollment period with guaranteed Medigap access for some 1,200 beneficiaries. After six months, CMS agreed.

Once Delaware’s insurance commissioner contacted CMS about the Bayhealth medical system dropping out of a Cigna Advantage plan, members received a special enrollment period starting in January.

Maine’s congressional delegation pushed for an enrollment period for nearly 4,000 patients of Northern Light Health after the 10-hospital system dropped out of a Humana Advantage plan last year.

“Our constituents have told us that they are anticipating serious challenges, ranging from worries about substantial changes to cost-sharing rates to concerns about maintaining care with current providers,” the delegation told CMS.

CMS granted the request to ensure “that MA enrollees have access to medically necessary care,” then-CMS Administrator Chiquita Brooks-LaSure wrote to Sen. Angus King (I-Maine).

Minnesota insurance officials appealed to CMS on behalf of some 75,000 members of Aetna, Humana, and UnitedHealthcare Advantage plans after six health systems announced last year they would leave the plans in 2025. So many provider changes caused “tremendous problems,” said Kelli Jo Greiner, director of the Minnesota State Health Insurance Assistance Program, known as a SHIP, at the Minnesota Board on Aging. SHIP counselors across the country provide Medicare beneficiaries free help choosing and using Medicare drug and Advantage plans.

Providers serving about 15,000 of Minnesota’s Advantage members ultimately agreed to stay in the insurers’ networks. CMS decided 14,000 Humana members qualified for a network-change special enrollment period.

The remaining 46,000 people — Aetna and UnitedHealthcare Advantage members — who lost access to four health systems were not eligible for the special enrollment period. CMS decided their plans still had enough other providers to care for them.

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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Ocurrió hace más de una década, pero el momento permanece en su memoria.

Sara Stewart conversaba con su madre, Barbara Cole, entonces de 86 años, en el comedor de su casa de Bar Harbor, en Maine. Stewart, abogada tenía en ese momento 59 años y estaba haciendo una de sus largas visitas desde fuera del estado.

Dos o tres años antes, Cole había comenzado a mostrar signos preocupantes de demencia, probablemente debido a una serie de pequeños derrames cerebrales. “No quería sacarla de su casa”, contó Stewart.

Así que, con un batallón de ayudantes —una empleada doméstica, visitas familiares frecuentes, un vecino atento y un servicio de entrega de comidas—, Cole pudo quedarse en la casa que ella y su difunto esposo habían construido 30 años atrás.

Se las arreglaba bien y solía parecer alegre y conversadora. Pero esta conversación en 2014 tuvo un dramático giro. “Me dijo: ‘¿De dónde nos conocemos? ¿de la escuela?’”, recordó su hija y primogénita. “Sentí como si me hubieran pateado”.

Stewart recuerda haber pensado: “En el curso natural de las cosas, se suponía que morirías antes que yo. Pero nunca se suponía que olvidaras quién soy”. Más tarde, sola, lloró.

Las personas con demencia avanzada suelen no reconocer a sus seres queridos, a sus parejas, hijos y hermanos. Para cuando Stewart y su hermano menor trasladaron a Cole a un centro de atención para la memoria un año después, la mujer ya había perdido casi por completo la capacidad de recordar sus nombres o vínculos.

“Es bastante común en las últimas etapas” de la enfermedad, dijo Alison Lynn, directora de trabajo social del Penn Memory Center, quien ha dirigido grupos de apoyo para cuidadores de personas con demencia por una década.

Ha escuchado muchas versiones de este relato, un momento descrito con dolor, ira, frustración, alivio o una combinación de estos sentimientos.

Estos cuidadores “ven muchas pérdidas, revierten hitos, y este es uno de esos momentos, un cambio fundamental” en una relación cercana, dijo. “Puede llevar a las personas a una crisis existencial”.

Es difícil determinar qué saben o sienten las personas con demencia —una categoría que incluye la enfermedad de Alzheimer y otros trastornos cognitivos—. “No tenemos forma de preguntarle a la persona ni de ver una resonancia magnética”, señaló Lynn. “Todo es pura deducción”.

Pero los investigadores están comenzando a investigar cómo reaccionan los familiares cuando un ser querido ya parece no reconocerlos. Un estudio cualitativo publicado recientemente en la revista Dementia analizó entrevistas en profundidad con hijos adultos que cuidaban de madres con demencia que, al menos en una ocasión, no los habían reconocido.

“Es muy desestabilizador”, dijo Kristie Wood, psicóloga clínica investigadora del Campus Médico Anschutz de la Universidad de Colorado y coautora del estudio. “El reconocimiento reafirma la identidad, y cuando desaparece, las personas sienten que han perdido parte de sí mismas”.

Aunque comprendían que no implicaba un rechazo sino un síntoma de la enfermedad de sus madres, algunos hijos adultos se culpaban a sí mismos, agregó.

“Se cuestionaban su papel. ‘¿Acaso no era lo suficientemente importante como para que me recuerde?'”, dijo Wood. Esto puede hacer que se alejen o que sus visitas se vuelvan menos frecuentes.

Pauline Boss, la terapeuta familiar que desarrolló hace décadas la teoría de la “pérdida ambigua”, señala que puede implicar ausencia física, como cuando un soldado desaparece en combate, o ausencia psicológica, incluyendo la falta de reconocimiento debido a la demencia.

La sociedad no tiene forma de reconocer la transición cuando “una persona está físicamente presente pero psicológicamente ausente”, dijo Boss. “No hay certificado de defunción, ni ritual donde amigos y vecinos vengan a sentarse contigo y te consuelen”.

“La gente se siente culpable si llora a alguien que aún está vivo”, continuó. “Pero si bien no es lo mismo que una muerte confirmada, es una pérdida real, que ocurre una y otra vez”.

La falta de reconocimiento adopta diferentes formas. Algunos familiares informan que, aunque un ser querido con demencia ya no puede recordar su nombre ni su parentesco exacto, todavía parecen felices de verlo.

“En un sentido narrativo, ya no sabe quién soy, que yo era su hija Janet”, contó Janet Keller, de 69 años, actriz de Port Townsend, Washington, hablando de su difunta madre, diagnosticada con Alzheimer en un correo electrónico. “Pero siempre supo que yo era alguien a quien apreciaba y con quien quería reír y a quien le agarraba la mano”.

A los cuidadores les reconforta seguir sintiendo una conexión. Sin embargo, una de las participantes en el estudio sobre demencia informó que ahora sentía a su madre como una extrañas, y que la relación ya no le proporcionaba ninguna recompensa emocional.

“Era como si estuviera visitando al cartero”, le dijo al entrevistador.

Larry Levine, de 67 años, administrador de atención médica jubilado de Rockville, Maryland, observó cómo la capacidad de su esposo para reconocerlo cambiaba de forma impredecible.

Levine y Arthur Windreich, pareja desde hacía 43 años, se habían casado en 2010, cuando Washington, DC, legalizó el matrimonio entre personas del mismo sexo. Al año siguiente, Windreich tuvo un diagnóstico de Alzheimer de inicio temprano.

Levine se convirtió en su cuidador hasta su fallecimiento a los 70 años, a finales de 2023.

“Su condición era zigzagueante”, dijo Levine. Windreich se había mudado a una unidad de cuidados de la memoria. “Un día, me llamaba ‘el hombre amable que viene de visita'”, dijo Levine. “Al día siguiente, me llamaba por mi nombre”.

Incluso en sus últimos años, cuando, como muchos pacientes con demencia, Windreich se volvió prácticamente silencioso, “había cierto reconocimiento”, dijo su esposo. “A veces se le veía en los ojos, ese brillo en lugar de la expresión vacía que solía tener”.

Sin embargo otras veces “no había ningún afecto”. Levine a menudo salía del centro llorando.

Buscó la ayuda de su terapeuta y sus hermanas, y recientemente se unió a un grupo de apoyo para cuidadores LGBTQ+ de personas con demencia, a pesar que su esposo ya había fallecido.

Los grupos de apoyo, en persona o por internet, “son medicina para el cuidador”, dijo Boss. “Es importante no aislarse”.

Lynn anima a los participantes de sus grupos a que también encuentren rituales personales para conmemorar la pérdida de reconocimiento y otros hitos que marcan un antes y un después. “Quizás enciendan una vela. Quizás recen una oración”, dijo.

Alguien que se sienta en shivá, parte del ritual de duelo judío, podría reunir a un pequeño grupo de amigos o familiares para recordar y compartir historias, aunque el ser querido con demencia no haya fallecido.

“Que alguien más participe puede ser muy reconfortante”, dijo Lynn. “Dice: ‘Veo el dolor que estás sintiendo'”.

De vez en cuando, la niebla de la demencia parece disiparse brevemente.

Investigadores de Penn y de otros centros han señalado un fenómeno sorprendente llamado “lucidez paradójica”. Alguien con demencia grave, luego de meses o años sin comunicarse, recupera repentinamente la lucidez y puede inventar un nombre, decir algunas palabras apropiadas, contar un chiste, hacer contacto visual o cantar con la radio.

Aunque comunes, estos episodios suelen durar solo unos segundos y no significan un cambio real en el deterioro de la persona. Los esfuerzos por recrear las experiencias tienden a fracasar.

“Es un instante”, dijo Lynn. Pero los cuidadores suelen reaccionar con sorpresa y alegría; algunos interpretan el episodio como evidencia de que, a pesar de la profundización de la demencia, no se les olvida del todo.

Stewart experimentó un pequeño incidente como esos unos meses antes de la muerte de su madre. Estaba en el apartamento de su madre cuando una enfermera le pidió que la acompañara al final del pasillo.

“Al salir de la habitación, mi madre me llamó por mi nombre”, dijo. Aunque Cole solía parecer contenta de verla, “no había usado mi nombre desde que tengo memoria”.

No volvió a ocurrir, pero eso no importó. “Fue maravilloso”, dijo Stewart.

La serie de columnas The New Old Age se producen a través de una alianza con 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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Josephine tiene 16 años y ha sido diagnosticada con mosaicismo de tetrasomía 8p, autismo severo, trastorno obsesivo-compulsivo grave y trastorno por déficit de atención con hiperactividad, entre otras afecciones. Todo esto significa que necesitará asistencia y acompañamiento constantes toda su vida.

Ortiz, de 25 años, es la cuidadora de Josephine. Esta inmigrante venezolana la ayuda a comer, bañarse y hacer tareas diarias que la adolescente no puede hacer sola en su casa en West Orange, Nueva Jersey.

Ortiz cuenta que, en los últimos dos años y medio, ha desarrollado un instinto que le permite detectar posibles factores desencadenantes de las crisis antes de que se agudicen. Por ejemplo, cierra las puertas y les quita las etiquetas de códigos de barras a las manzanas para reducir la ansiedad de Josephine.

Sin embargo, la posibilidad de trabajar en Estados Unidos puede estar en peligro para Ortiz. La administración Trump ordenó poner fin al programa de Estatus de Protección Temporal (TPS) para algunos venezolanos a partir del 7 de abril. El 31 de marzo, un juez federal suspendió la orden, dando a la administración una semana para apelar.

Si el programa se suspende, Ortiz tendrá que abandonar el país o arriesgarse a ser detenida y deportada.

“Nuestra familia quedaría devastada más allá de lo imaginable”, afirma Krysta Senek, la madre de Josephine, quien ha estado buscando un indulto para Ortiz.

Los estadounidenses dependen de muchos trabajadores nacidos en el extranjero para cuidar a sus familiares mayores, lesionados o discapacitados que no pueden valerse por sí mismos.

Según un análisis de la Oficina de Presupuesto del Congreso, casi 6 millones de personas reciben atención personal en un hogar privado o en una residencia grupal, y alrededor de 2 millones utilizan estos servicios en residencias para personas mayores u otras instituciones de cuidado a largo plazo.

Cada vez con más frecuencia, estos cuidadores son inmigrantes como Ortiz. En los centros de cuidados para adultos mayores, la proporción de trabajadores nacidos en el extranjero aumentó tres puntos porcentuales entre 2007 y 2021, hasta alcanzar aproximadamente el 18%, según un análisis de datos del Censo del Instituto Baker de Política Pública de la Universidad Rice, en Houston.

Además, los trabajadores nacidos en el extranjero representan una gran parte de otros proveedores de cuidados directos.

En 2022, más del 40% de los asistentes de salud a domicilio, el 28% de los trabajadores de cuidado personal y el 21% de los asistentes de enfermería habían nacido en el extranjero, un número superior al 18% de extranjeros en el total de la economía ese año, según datos de la Oficina de Estadísticas Laborales.

Esa fuerza laboral está en riesgo como consecuencia de la ofensiva contra los inmigrantes que Donald Trump lanzó en el primer día de su segunda administración.

El presidente firmó órdenes ejecutivas que ampliaron los casos en los que se pueden decidir las deportaciones sin audiencia judicial, suspendieron los programas de reasentamiento de los refugiados y, más recientemente, pusieron fin a los programas de permiso humanitario para ciudadanos de Cuba, Haití, Nicaragua y Venezuela.

Recurriendo a la Ley de Enemigos Extranjeros para deportar a venezolanos e intentando revocar la residencia permanente de otros, la administración Trump ha generado temor incluso entre aquellos que han seguido las reglas de inmigración del país.

"Hay una ansiedad general sobre lo que esto podría significar, incluso si alguien está aquí legalmente", dijo Katie Smith Sloan, presidenta de LeadingAge, una organización sin fines de lucro que representa a más de 5.000 residencias, hogares de cuidados asistidos y otros servicios para adultos mayores.

“Existe preocupación por la persecución injusta, por acciones que pueden ser traumáticas incluso si finalmente esas personas no terminan siendo deportadas. Pero toda esa situación, ya de por sí, altera el entorno de atención de salud”.

Según explicó Smith Sloan, cerrar las vías legales para que los inmigrantes trabajen en Estados Unidos también implica que muchos optarán por irse a países donde sí son bienvenidos y necesarios.

“Estamos compitiendo por el mismo grupo de trabajadores”, afirmó.

Más demanda, menos trabajadores

Se prevé que la demanda de trabajadores que realizan tareas de cuidado aumente considerablemente en el país, a medida que los baby boomers más jóvenes lleguen a la edad de su jubilación.

Según las proyecciones de la Oficina de Estadísticas Laborales, la necesidad de asistentes de salud y de cuidado personal a domicilio crecerá hasta cerca del 21% en el transcurso de la próxima década.

Esos 820.000 puestos adicionales representan el mayor aumento entre todas las actividades laborales. También se proyecta un crecimiento en la demanda de auxiliares de enfermería y camilleros, con un incremento de alrededor de 65.000 puestos.

El trabajo de cuidado suele ser mal remunerado y físicamente exigente, por lo que en general no atrae a suficientes estadounidenses nativos. El salario medio oscila, según la misma Oficina, entre $34.000 y $38.000 anuales.

Los hogares para adultos mayores, las residencias geriátricas con asistencia y las agencias de atención domiciliaria han lidiado durante mucho tiempo con altas tasas de rotación de personal y escasez de empleados, señaló Smith Sloan.

Ahora, además, temen que las políticas migratorias de Trump corten una fuente clave de trabajadores, dejando a muchas personas de edad avanzada, o con discapacidades, sin alguien que las ayude a comer, a vestirse y a realizar sus actividades cotidianas.

Con el gobierno de Trump reorganizando la Administración para la Vida Comunitaria —encargada de los programas que apoyan a adultos mayores y personas con discapacidades— y el Congreso considerando recortes radicales a Medicaid (el mayor financiador de cuidados a largo plazo en el país), las políticas antiinmigración del presidente están generando “la tormenta perfecta” para un sector que aún no se ha recuperado de la pandemia de covid-19, opinó Leslie Frane, vicepresidenta ejecutiva del Sindicato Internacional de Empleados de Servicios, que representa a estos trabajadores.

Frane señaló que la relación que los cuidadores construyen con sus pacientes puede tardar años en desarrollarse, y que hoy ya es muy complicado encontrar personas que los reemplacen.

En septiembre, la organización LeadingAge hizo un llamado al gobierno federal para que ayudara a la industria a cubrir sus necesidades de personal. Le propuso, entre otras recomendaciones, que aumentara los cupos de visas de inmigración relacionadas con estos trabajos, ampliara el estatus de refugiado a más personas y permitiera que los inmigrantes rindieran los exámenes de certificación profesional en su idioma nativo.

Pero, agregó Smith Sloan, “en este momento no hay mucho interés en nuestro mensaje”.

La Casa Blanca no respondió a las preguntas sobre cómo la administración abordaría la necesidad de aumentar el número de trabajadores en el sector de cuidados a largo plazo.

El vocero Kush Desai declaró que el presidente recibió “un mandato contundente del pueblo estadounidense para hacer cumplir nuestras leyes migratorias y poner a los estadounidenses en primer lugar”, al tiempo que -dijo- continúa con “los avances logrados durante la primera presidencia de Trump para fortalecer al personal del sector salud y hacer que la atención médica sea más accesible”.

En Wisconsin, refugiados trabajan con adultos mayores

Hasta que Trump suspendió el programa de reasentamiento de refugiados, en Wisconsin algunas residencias de adultos mayores se habían asociado con iglesias locales y programas de inserción laboral para contratar trabajadores nacidos en el extranjero, explicó Robin Wolzenburg, vicepresidente senior de LeadingAge Wisconsin.

Muchas de estas personas trabajan en el servicio de comidas y en la limpieza, funciones que liberan a las enfermeras y auxiliares de enfermería para que puedan atender directamente a los pacientes.

Sin embargo, Wolzenburg agregó que muchos inmigrantes están interesados en asumir funciones de atención directa, pero que se emplean en funciones auxiliares porque no hablan inglés con fluidez o no tienen una certificación válida estadounidense.

Wolzenburg contó que, a través de una asociación con el departamento de salud de Wisconsin y las escuelas locales, los hogares de adultos mayores han comenzado a ofrecer formación en inglés, español y hmong para que los trabajadores inmigrantes puedan convertirse en profesionales de atención directa.

Dijo también que el grupo planeaba impartir pronto una capacitación en swahili para las mujeres congoleñas que viven en el estado.

En los últimos dos años y medio, esta colaboración ayudó a los centros de cuidados para personas mayores de Wisconsin a cubrir más de una veintena de puestos de trabajo, dijo.

Sin embargo, Wolzenburg explicó que, por la suspensión de las admisiones de refugiados, las agencias de reasentamiento no están incorporando nuevos candidatos y han puesto una pausa a la incorporación de estos trabajadores.

Muchos inmigrantes mayores o que tienen alguna discapacidad, y a la vez son residentes permanentes, dependen de cuidadores nacidos en el extranjero que hablen su idioma y conozcan sus costumbres.

Frane, del sindicato SEIU, señaló que muchos miembros de la numerosa comunidad chino-estadounidense de San Francisco quieren que sus padres mayores reciban atención en casa, preferiblemente de alguien que hable su mismo idioma.

“Solo en California, tenemos miembros del sindicato que hablan 12 lenguas diferentes, dijo Frane. Esa habilidad se traduce en una calidad de atención y una conexión con los usuarios que será muy difícil de replicar si disminuye la cantidad de cuidadores inmigrantes”.

El ecosistema que depende del trabajo de un cuidador

Las tareas de cuidado son el tipo de trabajo que permite que otros trabajos sean posibles, sostuvo Frane. Sin cuidadores externos, la vida de los pacientes y de sus seres queridos se vuelve más difícil desde el punto de vista logístico y económico.

“Es como sacar el pilar que sostiene todo lo demás: el sistema entero tambalea”, agregó.

Gracias a la atención personalizada de Ortiz, Josephine ha aprendido a comunicar cuando tiene hambre o necesita ayuda. Ahora recoge su ropa y está comenzando a peinarse sola. Como su ansiedad está más controlada, las crisis violentas que antes solían repetirse semana tras semana se han vuelto mucho menos frecuentes, dijo Ortiz.

"Vivimos en el mundo de Josephine", explica Ortiz en español. "Intento ayudarla a encontrar su voz y a expresar sus sentimientos".

Ortiz llegó a Nueva Jersey desde Venezuela en 2022 a través de un programa de Au Pair para conectar trabajadores nacidos en el extranjero con personas mayores o niños con discapacidades que necesitan cuidados en su hogar.

Temerosa de la inestabilidad política y la inseguridad en su país, cuando su visa expiró obtuvo el TPS el año pasado. Quería seguir trabajando en Estados Unidos, y quedarse con Josephine.

Perder a Ortiz sería un golpe devastador para el progreso de Josephine, aseguró Senek. La adolescente no solo se quedaría sin su cuidadora, sino también sin una hermana y su mejor amiga. El impacto emocional sería enorme.

"Nosotros no tenemos ninguna manera de explicarle a Josephine que Alanys está siendo expulsada del país y que no puede volver'", dijo Senek.

No se trata solo de Josephine: Senek y su esposo también dependen de Ortiz para poder trabajar a tiempo completo y cuidar de sí mismos y de su matrimonio. “Ella no es solo una Au Pair”, dijo Senek.

La familia ha contactado a sus representantes en el Congreso en busca de ayuda. Incluso un familiar que votó por Trump le envió una carta al presidente pidiéndole que reconsiderara su decisión.

En el fallo judicial del 31 de marzo, el juez federal Edward Chen escribió que cancelar esta protección podría “ocasionar un daño irreparable a cientos de miles de personas cuyas vidas, familias y medios de subsistencia se verán gravemente afectados”.

“Solo estamos haciendo el trabajo que su propia gente no quiere hacer”

Las noticias sobre redadas migratorias que detienen incluso a inmigrantes con estatus legal y las deportaciones masivas están generando mucho estrés, incluso entre quienes han seguido todas las reglas, comentó Nelly Prieto, de 62 años, quien cuida a un hombre de 88 con Alzheimer y a otro de unos 30 con síndrome de Down en el condado de Yakima, Washington.

Nacida en México, Prieto emigró a Estados Unidos a los 12 años y se convirtió en ciudadana estadounidense en virtud de una ley impulsada por el presidente Ronald Reagan que ofrecía amnistía a cualquier inmigrante que hubiera entrado en el país antes de 1982. Así que ella no está preocupada por sí misma. Pero, dijo, algunos de sus compañeros de trabajo con visados H-2B tienen mucho miedo.

“Me parte el alma verlos cuando me hablan de estas cosas, el miedo en sus rostros”, dijo. “Incluso tienen preparadas cartas firmadas ante un notario diciendo con quién deben quedarse sus hijos, por si algo llega a pasar”.

Los trabajadores de salud a domicilio que nacieron en el extranjero sienten que están contribuyendo con un servicio valioso a la sociedad estadounidense al cuidar de sus miembros más vulnerables, dijo Prieto. Pero sus esfuerzos se ven ensombrecidos por los discursos y las políticas que hacen que los inmigrantes se sientan como si fueran ajenos al país.

“Si no pueden apreciar nuestro trabajo, si no pueden apreciar que cuidemos de sus propios padres, de sus propios abuelos, de sus propios hijos, entonces, ¿qué más quieren?”, dijo. “Solo estamos haciendo el trabajo que su propia gente no quiere hacer”.

En Nueva Jersey, Ortiz contó que su vida no ha sido la misma desde que recibió la noticia de que su permiso bajo el TPS está por terminar. Cada vez que sale a la calle, teme que agentes de inmigración la detengan solo por ser venezolana.

Se ha vuelto mucho más precavida: siempre lleva consigo documentos que prueban que tiene autorización para vivir y trabajar en Estados Unidos.

Ortiz teme terminar en un centro de detención. Aunque Estados Unidos ahora no es un lugar acogedor, consideró que regresar a Venezuela no es una opción segura.

“Puede que yo no signifique nada para alguien que apoya las deportaciones”, dijo Ortiz. “Pero sé que soy importante para tres personas que me necesitan”.

Esta historia fue producida por Kaiser Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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

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Josephine, 16, has been diagnosed with tetrasomy 8p mosaicism, severe autism, severe obsessive-compulsive disorder, and attention-deficit/hyperactivity disorder, among other conditions, which will require constant assistance and supervision for the rest of her life.

Ortiz, 25, is Josephine’s caregiver. A Venezuelan immigrant, Ortiz helps Josephine eat, bathe, and perform other daily tasks that the teen cannot do alone at her home in West Orange, New Jersey. Over the past 2½ years, Ortiz said, she has developed an instinct for spotting potential triggers before they escalate. She closes doors and peels barcode stickers off apples to ease Josephine’s anxiety.

But Ortiz’s ability to work in the U.S. has been thrown into doubt by the Trump administration, which ordered an end to the temporary protected status program for some Venezuelans on April 7. On March 31, a federal judge paused the order, giving the administration a week to appeal. If the termination goes through, Ortiz would have to leave the country or risk detention and deportation.

“Our family would be gutted beyond belief,” said Krysta Senek, Josephine’s mother, who has been trying to win a reprieve for Ortiz.

Americans depend on many such foreign-born workers to help care for family members who are older, injured, or disabled and cannot care for themselves. Nearly 6 million people receive personal care in a private home or a group home, and about 2 million people use these services in a nursing home or other long-term care institution, according to a Congressional Budget Office analysis.

Increasingly, the workers who provide that care are immigrants such as Ortiz. The foreign-born share of nursing home workers rose three percentage points from 2007 to 2021, to about 18%, according to an analysis of census data by the Baker Institute for Public Policy at Rice University in Houston.

And foreign-born workers make up a high share of other direct care providers. More than 40% of home health aides, 28% of personal care workers, and 21% of nursing assistants were foreign-born in 2022, compared with 18% of workers overall that year, according to Bureau of Labor Statistics data.

That workforce is in jeopardy amid an immigration crackdown President Donald Trump launched on his first day back in office. He signed executive orders that expanded the use of deportations without a court hearing, suspended refugee resettlements, and more recently ended humanitarian parole programs for nationals of Cuba, Haiti, Nicaragua, and Venezuela.

In invoking the Alien Enemies Act to deport Venezuelans and attempting to revoke legal permanent residency for others, the Trump administration has sparked fear that even those who have followed the nation’s immigration rules could be targeted.

“There's just a general anxiety about what this could all mean, even if somebody is here legally,” said Katie Smith Sloan, president of LeadingAge, a nonprofit representing more than 5,000 nursing homes, assisted living facilities, and other services for aging patients. “There's concern about unfair targeting, unfair activity that could just create trauma, even if they don't ultimately end up being deported, and that's disruptive to a health care environment.”

Shutting down pathways for immigrants to work in the United States, Smith Sloan said, also means many other foreign workers may go instead to countries where they are welcomed and needed.

“We are in competition for the same pool of workers,” she said.

Growing Demand as Labor Pool Likely To Shrink

Demand for caregivers is predicted to surge in the U.S. as the youngest baby boomers reach retirement age, with the need for home health and personal care aides projected to grow about 21% over a decade, according to the Bureau of Labor Statistics. Those 820,000 additional positions represent the most of any occupation. The need for nursing assistants and orderlies also is projected to grow, by about 65,000 positions.

Caregiving is often low-paying and physically demanding work that doesn’t attract enough native-born Americans. The median pay ranges from about $34,000 to $38,000 a year, according to the Bureau of Labor Statistics.

Nursing homes, assisted living facilities, and home health agencies have long struggled with high turnover rates and staffing shortages, Smith Sloan said, and they now fear that Trump’s immigration policies will choke off a key source of workers, leaving many older and disabled Americans without someone to help them eat, dress, and perform daily activities.

With the Trump administration reorganizing the Administration for Community Living, which runs programs supporting older adults and people with disabilities, and Congress considering deep cuts to Medicaid, the largest payer for long-term care in the nation, the president’s anti-immigration policies are creating “a perfect storm” for a sector that has not recovered from the covid-19 pandemic, said Leslie Frane, an executive vice president of the Service Employees International Union, which represents nursing facility workers and home health aides.

The relationships caregivers build with their clients can take years to develop, Frane said, and replacements are already hard to find.

In September, LeadingAge called for the federal government to help the industry meet staffing needs by raising caps on work-related immigration visas, expanding refugee status to more people, and allowing immigrants to test for professional licenses in their native language, among other recommendations.

But, Smith Sloan said, “There's not a lot of appetite for our message right now.”

The White House did not respond to questions about how the administration would address the need for workers in long-term care. Spokesperson Kush Desai said the president was given “a resounding mandate from the American people to enforce our immigration laws and put Americans first” while building on the “progress made during the first Trump presidency to bolster our healthcare workforce and increase healthcare affordability.”

Refugees Fill Nursing Home Jobs in Wisconsin

Until Trump suspended the refugee resettlement program, some nursing homes in Wisconsin had partnered with local churches and job placement programs to hire foreign-born workers, said Robin Wolzenburg, a senior vice president for LeadingAge Wisconsin.

Many work in food service and housekeeping, roles that free up nurses and nursing assistants to work directly with patients. Wolzenburg said many immigrants are interested in direct care roles but take on ancillary roles because they cannot speak English fluently or lack U.S. certification.

Through a partnership with the Wisconsin health department and local schools, Wolzenburg said, nursing homes have begun to offer training in English, Spanish, and Hmong for immigrant workers to become direct care professionals. Wolzenburg said the group planned to roll out training in Swahili soon for Congolese women in the state.

Over the past 2½ years, she said, the partnership helped Wisconsin nursing homes fill more than two dozen jobs. Because refugee admissions are suspended, Wolzenburg said, resettlement agencies aren’t taking on new candidates and have paused job placements to nursing homes.

Many older and disabled immigrants who are permanent residents rely on foreign-born caregivers who speak their native language and know their customs. Frane with the SEIU noted that many members of San Francisco’s large Chinese American community want their aging parents to be cared for at home, preferably by someone who can speak the language.

“In California alone, we have members who speak 12 different languages,” Frane said. “That skill translates into a kind of care and connection with consumers that will be very difficult to replicate if the supply of immigrant caregivers is diminished.”

The Ecosystem a Caregiver Supports

Caregiving is the kind of work that makes other work possible, Frane said. Without outside caregivers, the lives of the patient and their loved ones become more difficult logistically and economically.

“Think of it like pulling out a Jenga stick from a Jenga pile, and the thing starts to topple,” she said.

Thanks to the one-on-one care from Ortiz, Josephine has learned to communicate when she’s hungry or needs help. She now picks up her clothes and is learning to do her own hair. With her anxiety more under control, the violent meltdowns that once marked her weeks have become far less frequent, Ortiz said.

“We live in Josephine’s world,” Ortiz said in Spanish. “I try to help her find her voice and communicate her feelings.”

Ortiz moved to New Jersey from Venezuela in 2022 as part of an au pair program that connects foreign-born workers with people who are older or children with disabilities who need a caregiver at home. Fearing political unrest and crime in her home country, she got temporary protected status when her visa expired last year to keep her authorization to work in the United States and stay with Josephine.

Losing Ortiz would upend Josephine’s progress, Senek said. The teen would lose not only a caregiver, but also a sister and her best friend. The emotional impact would be devastating.

“You have no way to explain to her, ‘Oh, Alanys is being kicked out of the country, and she can't come back,’” she said.

It’s not just Josephine: Senek and her husband depend on Ortiz so they can work full-time jobs and take care of themselves and their marriage. “She's not just an au pair,” Senek said.

The family has called its congressional representatives for help. Even a relative who voted for Trump sent a letter to the president asking him to reconsider his decision.

In the March 31 court decision, U.S. District Judge Edward Chen wrote that canceling the protection could “inflict irreparable harm on hundreds of thousands of persons whose lives, families, and livelihoods will be severely disrupted.”

‘Doing the Work That Their Own People Don’t Want To Do’

News of immigration dragnets that sweep up lawfully present immigrants and mass deportations are causing a lot of stress, even for those who have followed the rules, said Nelly Prieto, 62, who cares for an 88-year-old man with Alzheimer’s disease and a man in his 30s with Down syndrome in Yakima County, Washington.

Born in Mexico, she immigrated to the United States at age 12 and became a U.S. citizen under a law authorized by President Ronald Reagan that made any immigrant who entered the country before 1982 eligible for amnesty. So, she’s not worried for herself. But, she said, some of her co-workers working under H-2B visas are very afraid.

“It kills me to see them when they talk to me about things like that, the fear in their faces,” she said. “They even have letters, notarized letters, ready in case something like that happens, saying where their kids can go.”

Foreign-born home health workers feel they are contributing a valuable service to American society by caring for its most vulnerable, Prieto said. But their efforts are overshadowed by rhetoric and policies that make immigrants feel as if they don’t belong.

“If they cannot appreciate our work, if they cannot appreciate us taking care of their own parents, their own grandparents, their own children, then what else do they want?” she said. “We’re only doing the work that their own people don’t want to do.”

In New Jersey, Ortiz said life has not been the same since she received the news that her TPS authorization was slated to end soon. When she walks outside, she fears that immigration agents will detain her just because she’s from Venezuela.

She’s become extra cautious, always carrying proof that she’s authorized to work and live in the U.S.

Ortiz worries that she’ll end up in a detention center. But even if the U.S. now feels less welcoming, she said, going back to Venezuela is not a safe option.

“I might not mean anything to someone who supports deportations,” Ortiz said. “I know I'm important to three people who need me."

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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Gerri Norington, 78, never wanted to be on her own as she grew old.

But her first marriage ended in divorce, and her second husband died more than 30 years ago. When a five-year relationship came to a close in 2006, she found herself alone — a situation that has lasted since.

“I miss having a companion who I can talk to and ask ‘How was your day?’ or ‘What do you think of what’s going on in the world?’” said Norington, who lives in an apartment building for seniors on the South Side of Chicago. Although she has a loving daughter in the city, “I don’t want to be a burden to her,” she said.

Norington is part of a large but often overlooked group: the more than 16 million Americans living alone while growing old. Surprisingly little is known about their experiences.

This slice of the older population has significant health issues: Nearly 4 in 10 seniors living alone have vision or hearing loss, difficulty caring for themselves and living independently, problems with cognition, or other disabilities, according to a KFF analysis of 2022 census data.

If help at home isn’t available when needed — an altogether too common problem — being alone can magnify these difficulties and contribute to worsening health.

Studies find that seniors on their own are at higher risk of becoming isolated, depressed, and inactive, having accidents, and neglecting to care for themselves. As a result, they tend to be hospitalized more often and suffer earlier-than-expected deaths.

Getting medical services can be a problem, especially if older adults living alone reside in rural areas or don’t drive. Too often, experts observe, health care providers don’t ask about older adults’ living situations and are unaware of the challenges they face.

***

During the past six months, I’ve spoken to dozens of older adults who live alone either by choice or by circumstance — most commonly, a spouse’s death. Some have adult children or other close relatives who are involved in their lives; many don’t.

In lengthy conversations, these seniors expressed several common concerns: How did I end up alone at this time of life? Am I OK with that? Who can I call on for help? Who can make decisions on my behalf if I’m unable to? How long will I be able to take care of myself, and what will happen when I can’t?

This “gray revolution” in Americans’ living arrangements is fueled by longer life spans, rising rates of divorce and childlessness, smaller families, the geographic dispersion of family members, an emphasis on aging in place, and a preference for what Eric Klinenberg, a professor of sociology at New York University, calls “intimacy at a distance” — being close to family, but not too close.

The most reliable, up-to-date data about older adults who live alone comes from the U.S. Census Bureau. According to its 2023 Current Population Survey, about 28% of people 65 and older live by themselves, including slightly fewer than 6 million men and slightly more than 10 million women. (The figure doesn’t include seniors living in institutions, primarily assisted living and nursing homes.)

By contrast, 1 in 10 older Americans lived on their own in 1950.

This is, first and foremost, an older women’s issue, because women outlive men and because they’re less likely to remarry after being widowed or divorcing. Twenty-seven percent of women ages 65 to 74 live alone, compared with 21% of men. After age 75, an astonishing 43% of women live alone, compared with only 24% for men.

The majority — 80% — of people who live alone after age 65 are divorced or widowed, twice the rate of the general population, according to KFF’s analysis of 2022 census data. More than 20% have incomes below $13,590, the federal poverty line in 2022, while 27% make between that and $27,180, twice the poverty level.

***

Of course, their experiences vary considerably. How older adults living alone are faring depends on their financial status, their housing, their networks of friends and family members, and resources in the communities where they live.

Attitudes can make a difference. Many older adults relish being independent, while others feel abandoned. It’s common for loneliness to come and go, even among people who have caring friends and family members.

“I like being alone better than I like being in relationships,” said Janice Chavez of Denver, who said she’s in her 70s. “I don’t have to ask anybody for anything. If I want to sleep late, I sleep late. If I want to stay up and watch TV, I can. I do whatever I want to do. I love the independence and the freedom.”

Chavez is twice divorced and has been on her own since 1985. As a girl, she wanted to be married and have lots of kids, but “I picked jerks,” she said. She talks to her daughter, Tracy, every day, and is close to several neighbors. She lives in the home she grew up in, inherited from her mother in 1991. Her only sibling, a brother, died a dozen years ago.

In Chicago, Norington is wondering whether to stay in her senior building or move to the suburbs after her car was vandalized this year. “Since the pandemic, fear has almost paralyzed me from getting out as much as I would like,” she told me.

She’s a take-charge person who has been deeply involved in her community. In 2016, Norington started an organization for single Black seniors in Chicago that sponsored speed dating events and monthly socials for several years. She volunteered with a local medical center doing outreach to seniors and brought health and wellness classes to her building. She organized cruises for friends and acquaintances to the Caribbean and Hawaii in 2022 and 2023.

Now, every morning, Norington sends a spiritual text message to 40 people, who often respond with messages of their own. “It helps me to feel less alone, to feel a sense of inclusion,” she said.

In Maine, Ken Elliott, 77, a retired psychology professor, lives by himself in a house in Mount Vernon, a town of 1,700 people 20 miles northwest of the state capital. He never married and doesn’t have children. His only living relative is an 80-year-old brother in California.

For several years, Elliott has tried to raise the profile of solo agers among Maine policymakers and senior organizations. This began when Elliott started inquiring about resources available to older adults living by themselves, like him. How were they getting to doctor appointments? Who was helping when they came home from the hospital and needed assistance? What if they needed extra help in the home but couldn’t afford it?

To Elliott’s surprise, he found this group wasn’t on anyone’s radar, and he began advocating on solo agers’ behalf.

Now, Elliott is thinking about how to put together a team of people who can help him as he ages in place — and how to build a stronger sense of community. “Aging without a mythic family support system — which everyone assumes people have — is tough for everybody,” Elliott said.

In Manhattan, Lester Shane, 72, who never married or had children, lives by himself in an 11-by-14-foot studio apartment on the third floor of a building without an elevator. He didn’t make much money during a long career as an actor, a writer, and a theater director, and he’s not sure how he’ll make ends meet once he stops teaching at Pace University.

“There are days when I’m carrying my groceries up three flights of stairs when I think, ‘This is really hard,’” Shane told me. Although his health is pretty good, he knows that won’t last forever.

“I’m on all the lists for senior housing — all lottery situations. Most of the people I’ve talked to said you will probably die before your number comes up,” he said with mordant humor.

Then, Shane turned serious. “I’m old and getting older, and whatever problems I have now are only going to get worse,” he said. As is the case for many older adults who live alone, his friends are getting older and having difficulties of their own.

The prospect of having no one he knows well to turn to is alarming, Shane admitted: “Underneath that is fear.”

Kate Shulamit Fagan, 80, has lived on her own since 1979, after two divorces. “It was never my intention to live alone,” she told me in a lengthy phone conversation. “I expected that I would meet someone and start another relationship and somehow sail off into the rest of my life. It’s been exceedingly hard to give up that expectation.”

When I first spoke to Fagan, in mid-March, she was having difficulty in Philadelphia, where she’d moved two years earlier to be close to one of her sons. “I’ve been really lonely recently,” she told me, describing how difficult it was to adjust to a new life in a new place. Although her son was attentive, Fagan desperately missed the close circle of friends she’d left behind in St. Petersburg, Florida, where she’d lived and worked for 30 years.

Four and a half months later, when I called Fagan again, she’d returned to St. Petersburg and was renting a one-bedroom apartment in a senior building in the center of the city. She’d celebrated her birthday there with 10 close friends and was meeting people in her building. “I’m not completely settled, but I feel fabulous,” she told me.

What accounted for the change? “Here, I know if I want to go out or I need help, quite a few people would be there for me,” Fagan said. “The fear is gone.”

As I explore the lives of older adults living alone in the next several months, I’m eager to hear from people who are in this situation. If you’d like to share your stories, please send them to khn.navigatingaging@gmail.com.

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

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This story can be republished for free (details).

I was also confident that when I reached older adulthood, the health care system would be ready to care for me.

I had been drawn to geriatrics for several reasons. I enjoyed caring for my older patients and I valued their appreciation for the care I provided. I also realized that there were 76 million baby boomers out there. The U.S. was on the cusp of a dramatic demographic shift that would have profound implications for its health care system. It was obvious that many health care professionals with specialized expertise in caring for older adults would be needed, and I was excited to be among the first.

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The Host

Julie Rovner
KFF Health News

@jrovner

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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

The presidential election is less than five months away, and while abortion is the only health policy issue expected to play a leading role, others are likely to be raised in the presidential and down-ballot races. This election could be critical in determining the future of key health care programs, such as Medicaid and the Affordable Care Act.

In this special episode of KFF Health News’ “What the Health?” taped at the Aspen Ideas: Health festival in Aspen, Colorado, Margot Sanger-Katz of The New York Times and Sandhya Raman of CQ Roll Call join Julie Rovner, KFF Health News’ chief Washington correspondent, to discuss what the election season portends for top health issues.

Panelists

Margot Sanger-Katz
The New York Times

@sangerkatz

Read Margot's stories.

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories.

Among the takeaways from this week’s episode:

• Policies surrounding abortion — and reproductive health issues, in general — likely will dominate in many races, as Democrats try to exploit an issue that is motivating their voters and dividing Republican voters. The topics of contraception and in vitro fertilization are playing a more prominent role in 2024 than they have in past elections.
• High prescription drug prices — which, for frustrated Americans, are a longtime symbol, and symptom, of the nation’s dysfunctional health care system — have been a priority for the Biden administration and, previously, the Trump administration. But the issue is so confusing and progress so incremental that it is hard to say whether either party has an advantage.
• The fate of many major health programs will be determined by who wins the presidency and who controls Congress after this fall’s elections. For example, the temporary subsidies that have made Affordable Care Act health plans more affordable will expire at the end of 2025. If the subsidies are not renewed, millions of Americans will likely be priced out of coverage again.
• Previously hot-button issues like gun violence, opioid addiction, and mental health are not playing a high-profile role in the 2024 races. But that could change case by case.
• Finally, huge health issues that could use public airing and debate — like what to do about the nation’s crumbling long-term care system and the growing shortage of vital health professionals — are not likely to become campaign issues.

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Transcript: Live From Aspen: Health and the 2024 Elections

KFF Health News’ ‘What the Health?’ Episode Title: ‘Live From Aspen: Health and the 2024 Elections’Episode Number: 352Published: June 21, 2024

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Mila Atmos: The future of America is in your hands. This is not a movie trailer and it’s not a political ad, but it is a call to action. I’m Mila Atmos and I’m passionate about unlocking the power of everyday citizens. On our podcast “Future Hindsight,” we take big ideas about civic life and democracy and turn them into action items for you and me. Every Thursday we talk to bold activists and civic innovators to help you understand your power and your power to change the status quo. Find us at futurehindsight.com or wherever you listen to podcasts.

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent at KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. I am joined tonight by a couple of our regular panelists: Margot Sanger-Katz, The New York Times.

Sanger-Katz: Hey, everybody.

Rovner: And Sandhya Raman of CQ Roll Call.

Raman: Good evening everyone.

Rovner: For those of you who aren’t regular listeners, we have a rotating panel of more than a dozen health policy reporters, all of whom just happen to be women, and every week we recap and analyze the week’s top health news. But tonight we’ve been given a slightly different assignment to talk about how health policy is likely to shape the 2024 elections and, vice versa, how the elections are likely to shape health policy.

So, this is actually my 10th presidential election season as a health reporter, which is terrifying, and I can say with some experience that health is one of those issues that’s always part of the political debate but is relatively rarely mentioned when pollsters ask voters what their top issue is. Of those of you who went to the pollsters session this afternoon might’ve seen that or said we’re not going to… it’s not going to be a health election this year.

This year, though, I think will be slightly different. As you’ll hear, I’ve divided these issues into three different buckets: Those that are likely to be pivotal or very important to how people vote; those that are likely to come up over the next few months in the presidential and/or congressional and Senate races; and finally, a couple of issues that aren’t as likely to come up but probably should. It would be good to have a debate about them.

So we will start with the political elephant in the room: reproductive health. Since the Supreme Court overturned Roe v. Wade two years ago next week, abortion has been front and center in just about every political contest, usually, though not always, with the abortion-right side prevailing. How do you two see abortion playing out both at the presidential and congressional level these next couple of months?

Raman: I see it playing out in kind of two different ways. We see already at the presidential level that President Joe Biden has been really going in, all in, that this is his No. 1 issue, and I think this will continue to play out, especially next week with the anniversary of the Dobbs [v. Jackson Women’s Health Organization] decision.

And a lot of the Democrats in the Senate have kind of been taking lead from that and also really amping up the issue. They’ve been doing kind of messaging votes on things within the reproductive health spectrum and it seems like they’re going to continue that in July. So we’re going to see it really focused on there. On the Republican side, they’ve been not focused on this issue as much.

Rovner: They’ve been ducking this issue.

Raman: Yes, they’ve been ducking this issue, so I think it’ll just be continued to be downplayed. They’ve really been going in on immigration more than any other of the issues that they’ve got this year.

Sanger-Katz: If you look at the public polling, abortion is one of really the only issues where the Democrats and Joe Biden seem to have a real advantage over the Republicans and Donald Trump. And so I think that that tells you that they’re going to have to be hitting it a lot. This is an issue where the voters are with the Democrats. They trust Biden more. They agree more with the policies the Democrats are promoting around reproductive health care. So it’s just impossible for me to imagine a scenario in which we don’t see Democrats kind of up and down the ticket really taking advantage of this issue, running ads on it, talking about it, and trying to really foreground it.

I think for Biden, in particular, it’s a hard issue. I think he has always had some personal ambivalence about abortion. He’s a Catholic. He, early in his career, had opposed certain abortion rights measures that other Democrats had endorsed, and you can kind of see him slowly getting comfortable with this issue. I think he said the word abortion for the first time just in the last six months. I think I would anticipate a real ramping up of discussion of this issue among Democrats. The other dynamic that I think is pretty important is that there are a number of states that have ballot initiatives to try to kind of permanently enshrine abortion rights into state constitutions.

And some of those are in states that are not pivotal to the election, and they will be important in those states, and for those state senate races and governor races and other things, because they may pull in more of these voters who care a lot about reproductive rights. But there are some of these ballot measures that are in pivotal states for the presidential race, the kind of battleground states that we’re all watching. And so there’s a big emphasis on those as well. And I think there’s some interesting tensions with those measures because abortion rights actually are valued by people across the political spectrum.

So I think we tend to think of this as a Democrat-Republican issue where Republicans want to restrict abortion rights, and Democrats want to promote them. But we’re seeing in the public polling now that’s not really true. There are a lot of Republicans that are uncomfortable with the kind of abortion bans that we’re seeing in certain parts of the country now. So it’s this question: Are they going to come out and vote and split their ticket where they’ll vote for constitutional measure to protect abortion rights and still vote for President Trump? Or will the abortion issue mobilize them so much that they will vote across the board as Democrats?

And I think that’s a big question, and I think it’s a big challenge. In fact, for many of the people that are running these campaigns to get these ballot measures passed, how much they want to kind of lean into the Democratic messaging and try to help prop up Democratic candidates in their state. And how much they want to just take a step back and try to get Republicans to support their particular measure, even if it doesn’t help Democratic candidates on the ticket.

Rovner: Well, of course, it’s not just abortion that’s on the ballot, literally and figuratively. There’s a not-insignificant portion of the anti-abortion movement that not only wants to ban abortion nationwide but wants to establish in law something called personhood. The concept that a person with full legal rights is created at fertilization.

That would result in outlawing many forms of contraception, as well as if we have seen rather vividly this spring, IVF. Unlike abortion, contraception and IVF are very widely supported, not nearly as divisive as abortion itself is. Are we potentially looking at a divorce between the Republican Party and its longtime absolutist, anti-abortion backers?

Raman: I think that Republicans have been toeing the line on this issue so far. We’ve seen them not support some of the Democrats’ bills on the state level, the federal level, that are related to IVF, but at the same time, kind of introducing their counterparts or issuing broad statements in support of IVF, in support of contraception. Even just like a couple of weeks ago, we had Sen. Rick Scott of Florida release an IVF-themed full ad.

And so we have a lot of messaging on this, but I think at the same time a lot of these are tiptoeing the line in that they might not add any new protections. They might not codify protections for any of these procedures. They might just issue support or not address some of the other issues there that people have been going back and forth with the personhood issue.

Sanger-Katz: I think this is a big challenge for the Republican Party, not just over the course of this particular election cycle, but I think thinking further into the future. The pro-life movement has been such a pivotal group of activists that have helped elect Republicans and have been so strongly allied with various other Republican interest groups across the last few decades. And you can see that those activists helped overturn Roe after nearly 50 years of having a constitutional right to abortion.

Many of them don’t want to give up there. They really want to abolish abortion. They think it’s a morally abhorrent and something that shouldn’t happen in this country. And they’re concerned that certain types of contraception are similar to abortion in certain ways and that IVF is also morally abhorrent. And we saw recently with the [Southern] Baptist Convention that there was a vote basically to say that they did not support in vitro fertilization and assisted reproductive technologies.

Yet, at the same time, you can see in public polling and in the way that the public responds to these kinds of messages that the activists are way out further than the typical voter and certainly way out further than the typical Republican voter. And there’s this interesting case study that happened a few months ago where the Alabama Supreme Court issued a ruling — the implications of which suggested that IVF might be imperiled in that state — and it was kind of uncertain what the result that would be.

And what happened, in fact, is that Republicans and the Alabama State Legislature and the Republican governor of Alabama, many of whom had sort of longtime pro-life connections and promises, immediately passed a bill to protect in vitro fertilization because they saw that it was something that their voters really cared about and that’s something that could really hurt them politically if they were being seen as being allied with a movement that wanted to ban it.

But the activists in this movement are really important part of the Republican coalition, and they’re very close to leadership. And I think this is going to be a real tension going forward about how does the party accommodate itself to this? Do they win hearts and minds? They figure out a way to get the public on their side? Or do they kind of throw over these people who have helped them for so long, and these ideological commitments that I do think that many Republican politicians really deeply do hold?

Rovner: How much wild card is Donald Trump can be in this? He’s been literally everywhere on this issue, on reproductive rights in general. He is not shy about saying he thinks that abortion is a loser of an issue for Republicans. He wants to just continue to say, “Let the states do whatever they want.”

But then, of course, when the states do things like perhaps ban IVF — that I would think would even make Donald Trump uncomfortable — he seems to get away with being anywhere he wants with these very strong evangelical and pro-life groups who have supported him because, after all, he appointed the two Supreme Court justices that overturned Roe. But I’m wondering if, down-ballot, how all these other candidates are going to cope with the forever sort of changing position of the head of their ticket.

Sanger-Katz: I think it’s pretty interesting. I was talking with a colleague about this recently. It seems like Trump’s strategy is to just have every position. If you look at his statements, he said just about every possible thing that you could possibly say about abortion and where he stands on it. And I think it’s actually quite confusing to voters in a way that may help him because I think if you’re only looking for the thing that you want to hear, you can find it.

If you’re someone who’s really a pro-life activist who cares a lot about restricting abortion, he brags about having been responsible for overturning Roe. And if you’re someone who really cares about protecting IVF, he’s said that he wants that. If you’re someone who want… lives in a state that has… continues to have legal abortion, he said, “We’re going to leave that up to the states.”

If you’re in a state that has banned abortion, that has very extreme bans, he said something that pleases you. And so, I don’t know. I did a story a few weeks ago where I interviewed voters who had been part of a New York Times/Siena poll, and these were voters who, they were asked a question: Who do you find responsible for the Dobbs decision for the overturning of Roe v. Wade? And these were voters who supported abortion rights but thought that Joe Biden was responsible. And there’re like… it’s not a lot of people, but it’s …

Rovner: But it’s like 20%, isn’t it?

Sanger-Katz: Yeah, it’s like 10[%], 15% of voters in battleground states, people whose votes are really going to matter and who support abortion rights. They don’t know who was responsible. They don’t really understand the dynamics of where the candidates are on this issue. And I think for those of us who are very politically engaged and who are following it closely, it’s kind of hard to imagine. But they’re just a lot of people who are not paying close attention.

And so I think that makes Trump being everywhere on the issue, it makes it easier for those people to not really engage with abortion. And I think that’s again why I think we’re going to see the Biden campaign and other Democrats kind of hitting it over and over and over again. “This is Trump’s fault. We are going to protect abortion rights.” Because I think that there are a lot of voters who don’t really know what to make of the candidates and don’t know what to make of Trump on this particular issue.

Rovner: Well, Sandhya, they keep trying to bring it up in Congress, but I don’t think that’s really breaking through as a big news story.

Raman: No, and I think that for Congress, we’ve seen the same thing this year, but we’ve also seen it in previous years where they coalesce around a certain week or a certain time and bring up different bills depending on who’s in control of that chamber to message on an issue. But it hasn’t really moved the needle either way that we get similar tallies, whether it was this year or three years ago or 10 years ago.

One thing that I think activists are really looking at on the pro-life side is just really Trump’s record on these issues. Regardless of what he’s saying this week or last week or in some of these different interviews that’s a little all over the place. They’ve pointed to a lot of things that he’s done, like different things that he’s expanded more than previous Republican presidents. And for them, that might be enough.

That’s if it’s just the dichotomy of Biden versus Trump, that to get to their end goal of more pro-life policies, then Trump is the easy choice. And in the past years, the amount of money that they have poured into these elections to just really support issues… candidates that are really active on these issues, has grown astronomically. So I don’t know that necessarily if he does make some of these statements it’s going to make a huge difference in their support.

Sanger-Katz: And I think it also comes back to Julie’s opening point, which is I think abortion is an issue on which the Democrats have a huge edge, and I do think it is an issue that is very mobilizing for certain types of voters. But I also think that this is an election in which a lot of voters, whatever their commitments are on abortion, may be deciding who to vote for based on another set of issues. Those people that I talked to who were kind of confused about abortion, they really cared a lot about the economy.

They were really concerned about the cost of groceries. And so I think for those people, they may have a preference on abortion. If they could sort of pick each individual issue, they might pick something different. But I think the fact that they supported abortion rights did not necessarily mean that even if they really understood where the candidates were that they were necessarily going to vote for Joe Biden. I think a lot of them were going to vote for Donald Trump anyway because they thought he was better on the issues that were affecting their daily lives more.

Rovner: Well, Margot, to your point about voters not knowing who’s responsible for what, I think another big issue in this campaign is going to be prescription drug prices. As we know, drug prices are kind of the stand-in for everything that’s currently wrong with the nation’s health care system. The system is byzantine. It can threaten people’s health and even their lives if they can’t afford it.

And just about every other country does it better than we do. Interestingly, both President Biden and former President Trump made drug prices a top health priority, and both have receipts to show what they have done, but it’s so confusing that it’s not clear who’s going to get credit for these things that have gotten done.

Trump said that Biden was lying when Biden said that he had done the insulin cap for Medicare, which in fact was done by the Democrats, although Trump had done sort of a precursor to it. So, who wins this point, or do you think it’s going to end up being a draw? Because people are not going to be able to figure out who was responsible for which parts of this. And by the way, we haven’t really fixed it anyway.

Raman: I would say it was a draw for two reasons. I think, one, when we deal with something like drug prices, it takes a while for you to see the effects. When we have the IRA [Inflation Reduction Act] that made it so that we can negotiate the price of some drugs under Medicare, the effects of that are over a long tailwind. And so it’s not as easy to kind of bring that up in political ads and that kind of thing when people aren’t seeing that when they go to the pharmacy counter.

And I think another thing is that for at least on the congressional level, there’s been a little bit of a gap in them being able to pass anything that kind of moves the point along. They made some efforts over the past year but weren’t able to get it over the finish line. I think it’s a lot more difficult to say, “Hey, we tried but didn’t get this done” without a … as a clear campaign message and to get votes on that.

Sanger-Katz: I also think it’s this issue that’s really quite hard because — setting aside $35 insulin, which we should talk about — most people have insurance, and so the price of the drug doesn’t always affect them in a direct way. A lot of times, when people are complaining about the high cost of drugs, they’re really complaining about the way that their insurance covers the drug. And so the price of the drug might, in fact, be astronomical, but it’s the $100 copayment that people are responding to.

And so it could be that the government is taking all these actions, or the companies by themselves, and the price has gone down, but if you’re still paying that $100 copayment, you’re not really experiencing the benefits of that change. So I do think that the Democrats and Joe Biden have done two things that are helpful in that regard. So, one, is this $35 cap on copayments for insulin. So that’s just for people in Medicare, so it’s not everyone. But I do think that is… it’s a great talking point. You can put that on an ad. It’s a real thing.

People are going to go to the pharmacy counter, and they’re not going to pay more than that. It’s easy to understand. The other thing that they did, and I think this is actually harder to understand, is they redesigned the drug benefit for people who have Medicare. So it used to be in Medicare that if you had a really expensive set of drugs that you took, like, say, you had cancer and you were taking one of these newer cancer drugs that cost tens of thousands dollars a year, you could be on the hook for tens of thousands of dollars a year out of your own pocket, on top of what your insurance covered.

If you took less-expensive drugs, your insurance kind of worked the way it works for people in the commercial market where you have some copayments, not that you don’t pay anything, but it wasn’t sort of unlimited. But for really high-cost drugs in Medicare, people in Medicare were on the hook for quite a lot of money, and the Inflation Reduction Act changed that. They changed the Medicare drug benefit, and now these people who have these really expensive health conditions have a limit. They only have to pay a couple of thousand dollars a year.

Rovner: But it doesn’t start until next year.

Sanger-Katz: But it doesn’t start until next year. So I just think a lot of this stuff around drug prices is, people feel this sense of outrage that the drugs are so expensive. And so I think that’s why there’s this huge appetite for, for example, having Medicare negotiate the price of drugs. Which is another thing that the Inflation Reduction Act enabled, but it’s not going to happen in time for the election.

But I don’t think that really hits people at the pharmacy counter. That is more the benefits of that policy are going to affect taxpayers and the government. They’re not going to affect individual people so much. And I think that’s part of why it’s such a hard issue. And I think that President Trump bumped up against this as well.

His administration was trying all of these little techniques deep in the works of the drug pricing and distribution system to try to find ways to lever down the prices of drugs. And some of them worked, and some of them didn’t. And some of them got finalized, and some of them didn’t. But I think very few of them had this obvious consumer impact. And so it was hard for them to go to the voters and say, “We did this thing. It affected your life.”

Rovner: I see some of these ads, “We’ve got to do something about the PBMs [Pharmacy Benefit Managers].” And I’m like, “Who’s this ad even aimed at? I cover this for a living, and I don’t really understand what you’re talking about.” I wonder, though, if some… if candidates really on both sides, I mean, this is a unique election in that we’ve got two candidates, both of whom have records behind them.

I mean, normally, you would have at least one who’s saying, “This is what I will do.” And, of course, when it comes to drug prices, the whipping boy has always been the drug companies. And I’m wondering if we’re not going to see candidates from both parties at all levels just going up against the drug companies because that’s worked in the past.

Raman: I think it’s kind of a difficult thing to do when I think so many candidates, congressional level especially, have good relationships with pharmaceutical companies as some of the top donors for their campaigns. And so there’s always that hesitation to go too hard on them when that is helping keep them in office.

So it’s a little bit more difficult there to see teeth-out going into an ad for something like that. I think when we go back to something like PBMs where it seems like everyone in Congress just has made that kind of the bully of this past couple years, then that might be something that’d be easier to throw into ads saying, “I will go after PBMs.”

Sanger-Katz: I think we’re likely to see, especially in congressional races, a lot of candidates just promising to lower your drug prices without a whole lot of detail under that.

I don’t know that it’s necessarily going to be like the evil pharmaceutical companies, and I don’t think it’s going to be detailed policy proposals for all the reasons I just said: because it’s complicated; doesn’t always affect people directly; it’s hard to understand. But I think it will be a staple promise that we’ll particularly see from Democrats and that I expect we will hear from President Trump as well because it’s something that has been part of his kind of staple of talking points.

Rovner: So let’s move on to some of the issues that are sort of the second-tier issues that I expect will come up, just won’t be as big as immigration and abortion. And I want to start with the Affordable Care Act. I think this is the first time in a presidential election year that it seems that the continuing existence of the ACA is no longer in question. If you disagree, do let me know, but that’s not to suggest …

Sanger-Katz: Maybe last time.

Rovner: Little bit. That’s not to suggest, though, that the fate of the Affordable Care Act is not also on the line in this election. The additional subsidies that the Democrats added in the Inflation Reduction Act, which will sunset at the end of next year unless they are renewed, are responsible in large part for the largest percentage of Americans with health insurance ever measured.

And conversely, the Congressional Budget Office estimates that enrollment would fall by an immediate 20% if the subsidies are allowed to expire. It’s hard to see how this becomes a campaign issue, but it’s obviously going to be really important to what… I mean who is elected is going to be really important to what happens on this issue, and it’s a lot of people.

Raman: Using the subsidies as a campaign point is a difficult thing to do. It’s a complicated issue to put in a digestible kind of ad thing. It’s the same thing with a lot of the prescription drug pricing policies where, to get it down to the average voter, is hard to do.

And I think had we not gotten those subsidies extended, we would’ve seen people more going into that in ads. But when it’s keeping the status quo, people aren’t noticing that anything has changed. So it’s an even more difficult thing to kind of get across.

Sanger-Katz: I think this is one of, in health care, one of the highest-stakes things. That I feel like there’s just a very obvious difference in policy depending on who is elected president. Whereas a lot of the things that we’ve talked about so far, drug prices, abortion, a little harder to predict. But just to get out of the weeds for a second, Congress increased the amount of money that poor and middle-class people can get when they buy their own health insurance on the Obamacare exchanges. And they also made it possible for way more people to get health insurance for free.

So there are a lot of Americans who were uninsured before who now have insurance that they don’t pay a single dollar for. And there are also a lot of Americans that are higher, the kind of people that were disadvantaged in the early years of Obamacare, sort of self-employed people, small business owners who bought their own insurance and used to just have sort of uncapped crazy premiums. People who earn more than $100,000 a year now have financial assistance for the first time ever. And that policy has been in place for several years, and we’ve seen record enrollment.

There’s lots more people with insurance now, and their insurance is more affordable than it’s ever been. And those things are, of course, related. I think it’s almost definitely going to go away if Trump is elected to the presidency and if Republicans take at least one house of Congress because basically it’s on a glide path to expiration. So if nothing is done, that money will go away. What needs to happen is for Congress to pass a new law that spends new money to extend those subsidies and for a president to sign it.

And I just think that the basic ACA, the stuff that passed in 2010, I think is relatively safe, as Julie says. But lots of people are going to face much more expensive insurance and maybe unaffordable insurance. And again, the CBO [Congressional Budget Office] projects that a lot of people will end up giving up their insurance as a result of those changes if these policies are allowed to expire. And so I don’t know. I think we don’t see candidates talking about it very much. But I don’t actually think it’s that hard to message on. You could just say, “If you vote for this guy, your insurance premiums are going to go up by 50% or whatever.”

That doesn’t seem like a terrible message. So I do wonder if we’ll see more of that, particularly as we get closer to the election. Because it does feel like a real pocketbook issue for people. The cost of health care, the cost of health insurance, like the cost of drugs, I think, is something that really weighs on people. And we’ve seen in these last few years that making insurance cheaper has just made it much more appealing, much more accessible for people. There’s lots more Americans who have health insurance now, and that’s at risk of going away.

Rovner: Well, also on the list of things that are likely to come up, probably not in the presidential race, but certainly lower down on the ballot, is gender-affirming care. Republicans are right now are all about parental control over what books their children read and what they’re taught in school, but not apparently about medical care for their children.

They want that to be determined by lawmakers. This is very much a wedge issue, but I’m wondering for which side. I mean, traditionally, it would’ve been the conservatives and the evangelicals sort of pushing on this. But as abortion has sort of flip-flopped in importance among voters, I’m wondering where this kind of falls into that.

Raman: I think that the messaging that I’ve seen so far has still prominently been from Republicans on this issue. Whether or not it’s bills that they’ve been introducing and kind of messaging on in Congress or just even in the ads, there’s still been a lot of parental safeguards and the language related to that with relation to gender-affirming care. I have not actually seen as many Democratic ads going super into this. I think they have been way more focused on abortion.

I’m thinking back to, I saw a statistic that 1 in 4 Democratic ads go into abortion, which is really high compared to previous years. And so I don’t know that it will be as big of an issue. I even see some people kind of playing it down because the more attention it gets, sometimes it rallies people up, and they don’t… It’s kind of the flip of Republicans not wanting to bring attention to the abortion issue. And I think a lot of Democrats are trying to shy away so that some of these things aren’t elevated, that we aren’t talking about some of the talking points and the messaging that Republicans are bringing up on the same thing.

Sanger-Katz: Yeah, it feels to me almost like a mirror image of the abortion issue in the sense that the Democrats have this challenge where their activists are out in front of their voters. There clearly are parts of the Democratic coalition that are really concerned about transgender rights and wanting to protect them and are very opposed to some of the action that we’re seeing at the state and local level, both in terms of what’s happening in schools, but also regulation of medical care. But I think voters I think are less comfortable with transgender rights.

Even Democratic voters, you see sort of there’s more of a generational split on this issue than on some of these other issues where I think older voters are just a little bit less comfortable. And so I do think that it is an issue where — particularly certain parts of it like transgender athletes — that seems to be an area where you see the Republican message really getting more traction among certain subsets of Democratic voters. And I think it’s a hard issue for Democrats except in the places where there’s really broad acceptance.

Rovner: So I want to move on to the things that are less likely to come up, but probably should. We’re going to start with Medicaid. During the pandemic, it grew to cover over 90 million Americans. That’s like a third more than Medicare, which most people still think of as the largest government health program.

But as states pare back their roles after the expiration of the public health emergency, it seems that lots of people — particularly children, who are still eligible — are getting dropped nonetheless. During the fight over repealing the Affordable Care Act in 2017, it was the fate of Medicaid in large part that saved the program.

Suddenly, people realized that their grandmother was getting Medicaid and that one out of every three births, maybe one of every two births, is paid for by Medicaid. But now it seems not so much. Has Medicaid gotten invisible again in national politics?

Raman: I think, in a way, it has. I mean, it doesn’t mean that it’s any less important, but I haven’t seen as big of a push on it, as many people talking about it. And I think it is more of a tricky thing to message on at this point, given that if you look at where the states that have been disenrolling a lot of people, a lot of the ones that are near the top, are blue states.

California is a bigger population, but it’s also the one where they’ve disenrolled the most people. And so messaging on this is going to be difficult. It’s a harder thing to kind of attack your opponent on if this is something that is also being … been difficult in your state. It’s something that states have been grappling with even before we even got to this point.

Sanger-Katz: I think this is another issue where, I think, the stakes of the election are actually quite high. I do think it’s relatively invisible as an issue. I think part of the reason is that we don’t really see the Republicans talking about it, and I think the Democrats don’t really know how to message on it. I think they were really good at, “We’re going to protect you. We’re going to prevent the Republicans from taking this away from you.” But I think they don’t have a good affirmative message about, “How we love this program and we want to support and extend it.”

I don’t think voters are really responding to that. But if you look at what President Trump did in his first administration, he had budgets every single year that proposed savage cuts to Medicaid, big changes to the structure and funding of the program. Those did not get enacted into law. But even after Obamacare repeal was abandoned, you did not see the Trump budgets and the Trump administration, economic officials and health officials, abandoning those plans to make significant cuts to Medicaid.

And I think there are quite a lot of people in the Republican health policy world who think that Medicaid is sort of a bloated and wasteful program that needs to be rethought in a kind of fundamental way, needs to be handed back to the states to give them more fiscal responsibility and also more autonomy to run the program in their own way. I think we will see that again. I also think it’s very hard to know, of course, I feel like anytime… whoever’s in power is always less concerned about the deficit than they are when they are running for election.

But something we haven’t talked about because it’s not a health care issue, is that the expiration of the Trump tax reform bill is going to come up next year, and all of our budget projections that we rely on now assume that those tax cuts are going to expire. I think we all know that most of them probably are not going to expire regardless of who is elected. But I think if Trump and the Republicans take power again, they’re going to want to do certainly a full renewal and maybe additional tax cuts.

And so I think that does put pressure, fiscal pressure on programs like Medicaid because that’s one of the places where there’s a lot of dollars that you could cut if you want to counterbalance some of the revenues that you’re not taking in when you cut taxes. I think Medicaid looks like a pretty ripe target, especially because Trump has been so clear that he does not want to make major cuts to Medicare or to Social Security, which are kind of the other big programs where there’s a lot of money that you could find to offset major tax cuts if you wanted to.

Rovner: Yet, the only big program left that he hasn’t promised not to cut, basically. I guess this is where we have to mention Project 2025, which is this 900-page blueprint for what could happen in a second Trump term that the Trump campaign likes to say, whenever something that’s gets publicized that seems unpopular, saying, “It doesn’t speak for us. That’s not necessarily our position.”

But there’s every suggestion that it would indeed be the position of the Trump administration because one of the pieces of this is that they’re also vetting people who would be put into the government to carry out a lot of these policies. This is another one that’s really hard to communicate to voters but could have an enormous impact, up and down, what happens to health.

Sanger-Katz: And I think this is true across the issue spectrum that I think presidential candidates, certainly congressional candidates and voters, tend to focus on what’s going to happen in Congress. What’s the legislation that you’re going to pass? Are you going to pass a national abortion ban, or are you going to pass a national protect-abortion law? But actually, most of the action in government happens in regulatory agencies. There’s just a ton of power that the executive branch has to tweak this program this way or that.

And so on abortion, I think there’s a whole host of things that are identified in that Project 2025 report that if Trump is elected and if the people who wrote that report get their way, you could see lots of effects on abortion access nationwide that just happened because the federal agencies change the rules about who can get certain drugs or how things are transported across state lines. What happens to members of the military? What kind of funding goes to organizations that provide contraception coverage and other related services?

So, in all of these programs, there’s lots of things that could happen even without legislation. And I think that always tends to get sort of undercovered or underappreciated in elections because sort of hard to explain, and it also feels kind of technical. I think, speaking as a journalist, one thing that’s very hard is that this Project 2025 effort is kind of unprecedented in the sense that we don’t usually have this detailed of a blueprint for what a president would do in all of these very detailed ways. They have, I mean, it’s 100…

Rovner: Nine-hundred …

Sanger-Katz: … 900-page document. It’s like every little thing that they could do they’ve sort of thought about in advance and written down. But it’s very hard to know whether this document actually speaks for Trump and for the people that will be in leadership positions if he’s reelected and to what degree this is sort of the wish casting of the people who wrote this report.

Rovner: We will definitely find out. Well, kind of like Medicaid, the opioid crisis is something that is by no means over, but the public debate appears to have just moved on. Do we have short attention spans, or are people just tired of an issue that they feel like they don’t know how to fix? Or the fact that Congress threw a lot of money at it? Do they feel like it’s been addressed to the extent that it can be?

Raman: I think this is a really difficult one to get at because it’s — at the same time where the problem has been so universal across the country — it has also become a little fragmented in terms of certain places, with different drugs becoming more popular. I think that, in the past, it was just so much that it was the prescription opioids, and then we had heroin and just different things. And now we have issues in certain places with meth and other drugs. And I think that some of that attention span has kind of deviated for folks. Even though we are still seeing over 100,000 drug-related deaths per year; it hasn’t dipped.

And the pandemic, it started going up again after we’d made some progress. And I’m not sure what exactly has shifted the attention, if it’s that people have moved on to one of these other issues or what. But even in Congress, where there have been a lot of people that were very active on changing some of the preventative measures and the treatment and all of that, I think some of those folks have also left. And then when there’s less of the people focused on that issue, it also just slowly trickles as like a less-hyped-up issue in Congress.

Sanger-Katz: I think it continues to be an issue in state and local politics. In certain parts of the country I think this is a very front-of-mind issue, and there’s a lot of state policy happening. There’s a lot also happening at the urban level where you’re seeing prosecutors, mayors, and others really being held accountable for this really terrible problem. And also with the ancillary problems of crime and homelessness associated with people who are addicted to drugs. So, at the federal level, I agree, it’s gotten a little bit sleepy, but I think in certain parts of the country, this is still a very hot issue.

And I do think this is a huge, huge, huge public health crisis that we have so many people who are dying of drug overdoses and some parts of the country where it is just continuing to get worse. I will say that the latest data, which is provisional, it’s not final from the CDC [Centers for Disease Control and Prevention], but it does look like it’s getting a little bit better this year. So it’s getting better from the worst ever by far. But it’s the first time in a long time that overdoses seem to be going down even a little. So I do think there’s a glimmer of hope there.

Raman: Yeah. But then the last time that we had that, it immediately changed again. I feel like everyone is just so hesitant to celebrate too much just because it has deviated so much.

Sanger-Katz: It’s definitely, it’s a difficult issue. And even the small improvements that we’ve seen, it’s a small improvement from a very, very large problem, so.

Rovner: Well, speaking of public health, we should speak of public health. We’re still debating whether or not covid came from a wet market or from a lab leak, and whether Dr. [Anthony] Fauci is a hero or a villain. But there seems to be a growing distrust in public health in general. We’ve seen from President Trump sort of threatened to take federal funds away from schools with vaccine mandates.

The context of what he’s been saying suggests he’s talking about covid vaccines, but we don’t know that. This feels like one of these issues that, if it comes up at all, is going to be from the point of view of do you trust or do you not trust expertise? I mean, it is bigger than public health, right?

Raman: Yeah. I think that… I mean, the things that I’ve seen so far have been largely on the distrust of whether vaccines are just government mandates and just ads that very much are aligning with Trump that I’ve seen so far that have gone into that. But it does, broader than expertise.

I mean, even when you go back to some of the gender-affirming care issues, when we have all of the leading medical organizations that are experts on this issue speaking one way. And then we having to all of the talking points that are very on the opposite spectrum of that. It’s another issue where even if there is expertise saying that this is a helpful thing for a lot of folks that it’s hard to message on that.

Sanger-Katz: And we also have a third-party candidate for the presidency who is, I think, polling around 10% of the electorate — and polling both from Democratic and Republican constituencies — whose kind of main message is an anti-vaccine message, an antipublic health message.

And so I think that reflects deep antipublic health sentiments in this country that I think, in some ways, were made much more prominent and widespread by the covid pandemic. But it’s a tough issue for that reason.

I think there is a lot of distrust of the public health infrastructure, and you just don’t see politicians really rushing into defend public health officials in this moment where there’s not a crisis and there’s not a lot of political upside.

Rovner: Finally, I have a category that I call big-picture stuff. I feel like it would be really refreshing to see broad debates over things like long-term care. How we’re going to take care of the 10,000 people who are becoming seniors every day. The future solvency of Medicare. President Trump has said he won’t cut Medicare, but that’s not going to help fix the financial issues that still ail at end, frankly, the structure of our dysfunctional health care system.

Everything that we’ve talked about in terms of drug prices and some of these other things is just… are all just symptoms of a system that is simply not working very well. Is there a way to raise these issues, or are they just sort of too big? I mean, they’re exactly the kinds of things that candidates should be debating.

Raman: That is something that I have been wondering that when we do see the debate next week, if we already have such a rich background on both of these candidates in terms of they’ve both been president before, they have been matched up before, that if we could explore some of the other issues that we haven’t had yet. I mean, we know the answers to so many questions. But there are certain things like these where it would be more refreshing to hear some of that, but it’s unclear if we would get any new questions there.

Rovner: All right. Well, I have one more topic for the panel, and then I’m going to turn it over to the audience. There are folks with microphones, so if you have questions, be thinking of them and wait until a microphone gets to you.

One thing that we haven’t really talked about very much, but I think it’s becoming increasingly important, is data privacy in health care. We’ve seen all of these big hacks of enormous storages of people’s very personal information. I get the distinct impression that lawmakers don’t even know what to do. I mean, it’s not really an election issue, but boy, it almost should be.

Sanger-Katz: I did some reporting on this issue because there was this very large hack that affected this company called Change Healthcare. And so many things were not working because this one company got hacked. And the impression I got was just that this is just an absolute mess. That, first of all, there are a ton of vulnerabilities both at the level of hospitals and at the level of these big vendors that kind of cut across health care where many of them just don’t have good cybersecurity practices.

And at the level of regulation where I think there just aren’t good standards, there isn’t good oversight. There are a lot of conflicting and non-aligned jurisdictions where this agency takes care of this part, and this agency takes care of that part. And I think that is why it has been hard for the government to respond, that there’s not sort of one person where the buck stops there. And I think the legislative solutions actually will be quite technical and difficult. I do think that both lawmakers and some key administration officials are aware of the magnitude of this problem and are thinking about how to solve it.

It doesn’t mean that they will reach an answer quickly or that something will necessarily pass Congress. But I think this is a big problem, and the sense I got from talking to experts is this is going to be a growing problem. And it’s one that sounds technical but actually has pretty big potential health impacts because when the hospital computer system doesn’t work, hospitals can’t actually do the thing that they do. Everything is computerized now. And so when there’s a ransomware attack on a main computer electronic health record system, that is just a really big problem. That there’s documentation has led to deaths in certain cases because people couldn’t get the care that they need.

Rovner: They couldn’t … I mean, couldn’t get test results, couldn’t do surgeries. I mean, there was just an enormous implications of all this. Although I did see that there was a hack of the national health system in Britain, too. So, at least, that’s one of the things that we’re not alone in.

Sanger-Katz: And it’s not just health care. I mean, it’s like everything is hackable. All it takes is one foolish employee who gives away their password, and you think, often, the hackers can get in.

Raman: Well, that’s one of the tricky parts is that we don’t have nationally, a federal data privacy law like they do in the E.U. and stuff. And so it’s difficult to go and hone in on just health care when we don’t have a baseline for just, broadly … We have different things happening in different states. And that’s kind of made it more difficult to get done when you have different baselines that not everyone wants to come and follow the model that we have in California or some of the other states.

Rovner: But apparently Change Healthcare didn’t even have two-factor authentication, which I have on my social media accounts, that I’m still sort of processing that. All right, so let’s turn it over to you guys. Who has a question for my esteemed panel?

[Audience member]: Private equity and their impact on health care.

Rovner: Funny, one of those things that I had written down but didn’t ask.

Sanger-Katz: I think this is a really interesting issue because we have seen a big growth in the investment of private equity into health care, where we’re seeing private equity investors purchasing more hospitals, in particular, purchasing more doctors’ practices, nursing homes. You kind of see this investment across the health care sector, and we’re just starting to get evidence about what it means. There’s not a lot of transparency currently. It’s actually pretty hard to figure out what private equity has bought and who owns what.

And then we really don’t know. I would say there’s just starting to be a little bit of evidence about quality declines in hospitals that are owned by private equity. But it’s complicated, is what I would say. And I think in the case of medical practices, again, we just don’t have strong evidence about it. So I think policymakers, there are some who are just kind of ideologically opposed to the idea of these big investors getting involved in health care. But I think there are many who are… feel a little hands-off, where they don’t really want to just go after this particular industry until we have stronger evidence that they are in fact bad.

Rovner: Oh, there’ve been some pretty horrendous cases of private equity buying up hospital groups, selling off the underlying real estate. So now that the… now the hospital is paying rent, and then the hospitals are going under. I mean, we’ve now seen this.

Sanger-Katz: Yeah, there’s… No, there’s… There have clearly been some examples of private equity investments in hospitals and in nursing homes that have led to really catastrophic results for those institutions and for patients at those places. But I think the broader question of whether private equity as a structure that owns health care entities is necessarily bad or good, I think that’s what we don’t know about.

Rovner: Yeah, I mean, there’s an argument that you can have the efficiencies of scale, and that there may be, and that they can bring some business acumen to this. There are certainly reasons that it made sense when it started. The question is what the private equity is in it for.

Is it there to try to support the organization? Or is it there to do what a lot of private equity has done, which is just sort of take the parts, pull as much value as you can out of them, and discard the rest, which doesn’t work very well in the health care system.

Sanger-Katz: I also think one thing that’s very hard in this issue — and I think in others that relate to changes in the business structure of health care — is that it’s, like, by the time we really know, it’s almost too late. There’s all of this incredible scholarship looking at the effects of hospital consolidation, that it’s pretty bad that when you have too much hospital concentration; particularly in individual markets, that prices go up, that quality goes down. It’s really clear. But by the time that research was done so many markets were already highly consolidated that there wasn’t a way to go back.

And so I think there’s a risk for private equity investment of something similar happening that when and if we find out that it’s bad, they will have already rolled up so much of medical practice and changed the way that those practices are run that there’s not going to be a rewind button. On the other hand, maybe it will turn out to be OK, or maybe it will turn out to be OK in certain parts of the health care system and not in others. And so there is, I think, a risk of over-regulating in the absence of evidence that it’s a problem.

Raman: Yeah. And I would just echo one thing that you said earlier is that about the exploratory stages. Everything that I can rack my brain and think of that Congress has done on this has been very much like, “Let’s have a discussion. Let’s bring in experts,” rather than like really proposing a lot of new things to change it. I mean, we’ve had some discussion in the past of just changing laws about physician-owned practices and things like that, but it hasn’t really gone anywhere. And some of the proponents of that are also leaving Congress after this election.

Rovner: And, of course, a lot of this is regulated at the state level anyway, which is part of the difficulty.

Sanger-Katz: And there is more action at the state level. There are a bunch of states that have passed laws that are requiring more transparency and oversight of private equity acquisitions in health care. That seems to be happening faster at the state level than at the federal level.

Raman: And so many times, it trickles from the state level to the federal level anyway, too.

Rovner: Maybe the states can figure out what to do.

Sanger-Katz: Yes.

Rovner: More questions.

[Audience member]: Oh, yeah. I have a question about access to health care. It seems that for the past few years, maybe since covid, almost everybody you talked to says, “I can’t get an appointment with a doctor.” They call, and it’s like six months or three months. And I’m curious as to what you think is going on because … in this regard.

Raman: I would say part of it is definitely a workforce issue. We definitely have more and more people that have been leaving due to age or burnout from the pandemic or from other issues. We’ve had more antagonism against different types of providers that there’ve been a slew of reasons that people have been leaving while there’s been a greater need for different types of providers. And so I think that is just part of it.

Rovner: I feel like some of this is the frog in the pot of water. This has been coming for a long time. There have been markets where people have… people unable to get in to see specialists. You break your leg, and they say, “We can see you in November.” And I’m not kidding. I mean, that’s literally what happens. And now we’re seeing it more with primary care.

I mean that the shortages that used to be in what we called underserved areas, that more and more of the country is becoming underserved. And I think because we don’t have a system. Because we’re all sort of looking at these distinct pieces, I think the health care workforce issue is going kind of under the radar when it very much shouldn’t be.

Sanger-Katz: There’s also, I think, quite a lot of regional variation in this problem. So I think there are some places where there’s really no problem at all and certain specialties where there’s no problem at all. And then there are other places where there really are not enough providers to go around. And rural areas have long had a problem attracting and retaining a strong health care workforce across the specialties.

And I think in certain urban areas, in certain neighborhoods, you see these problems, too. But I would say it’s probably not universal. You may be talking to a lot of people in one area or in a couple of areas who are having this problem. But, as Julie said, I think it is a problem. It’s a problem that we need to pay attention to. But I think it’s not a problem absolutely everywhere in the country right now.

Rovner: It is something that Congress… Part of this problem is because Congress, in 1997, when they did the Balanced Budget Act, wanted to do something about Medicare and graduate medical education. Meaning why is Medicare paying for all of the graduate medical education in the United States, which it basically was at that point? And so they put in a placeholder. They capped the number of residences, and they said, “We’re going to come back, and we’re going to put together an all-payer system next year.”

That’s literally what they said in 1997. It’s now 27 years later, and they never did it, and they never raised the cap on residencies. So now we’ve got all these new medical schools, which we definitely need, and we have all of these bright, young graduating M.D.s, and they don’t have residencies to go to because there are more graduating medical school seniors than there are residency slots. So that’s something we’re… that just has not come up really in the past 10 years or so. But that’s something that can only be fixed by Congress.

Raman: And I think even with addressing anything in that bubble we’ve had more difficulty of late when we were… as they were looking at the pediatric residency slots, that whole discussion got derailed over a back-and-forth between members of Congress over gender-affirming care.

And so we’re back again to some of these issues that things that have been easier to do in the past are suddenly much more difficult. And then some of these things are felt down the line, even if we are able to get so many more slots this year. I mean, it’s going to… it takes a while to broaden that pipeline, especially with these various specialized careers.

Rovner: Yeah, we’re on a trajectory for this to get worse before it gets better. There’s a question over here.

[Audience member]: Hi. Thanks so much. I feel like everybody’s talking about mental health in some way or another. And I’m curious, it doesn’t seem to be coming at the forefront in any of the election spaces. I’m curious for your thoughts.

Raman: I think it has come up some, but not as much as maybe in the past. It has been something that Biden has messaged on a lot. Whenever he does his State of the Union, mental health and substance use are always part of his bipartisan plan that he wants to get done with both sides. I think that there has been less of it more recently that I’ve seen that them campaigning on. I mean, we’ve done a little bit when it’s combined with something like gun violence or things like that where it’s tangentially mentioned.

But front and center, it hasn’t come up as much as it has in the past, at least from the top. I think it’s still definitely a huge issue from people from the administration. I mean, we hear from the surgeon general like time and time again, really focusing on youth mental health and social media and some of the things that he’s worried about there. But on the top-line level, I don’t know that it has come up as much there. It is definitely talked about a lot in Congress. But again, it’s one of those things where they bring things up, and it doesn’t always get all the way done, or it’s done piecemeal, and so …

Rovner: Or it gets hung up on a wedge issue.

Raman: Yep.

Sanger-Katz: Although I do think this is an issue where actually there is a fair amount of bipartisan agreement. And for that reason, there actually has been a fair amount of legislation that has passed in the last few cycles. I think it just doesn’t get the same amount of attention because there isn’t this hot fight over it. So you don’t see candidates running on it, or you don’t see people that…

There’s this political science theory called the Invisible Congress, which is that sometimes, actually, you want to have issues that people are not paying attention to because if they’re not as controversial, if they’re not as prominent in the political discourse, you can actually get more done. And infrastructure, I think, is a kind of classic example of that, of something like it’s not that controversial. Everybody wants something in their district. And so we see bipartisan cooperation; we got an infrastructure bill.

And mental health is kind of like that. We got some mental health investments that were part of the pandemic relief packages. There was some mental health investment that was part of the IRA, I believe, and there was a pretty big chunk of mental health legislation and funding that passed as part of the gun bill.

So I do think there’s, of course, more to do it as a huge problem. And I think there are probably more creative solutions even than the things that Congress has done. But I think just because you’re not seeing it in the election space doesn’t mean that there’s not policymaking that’s happening. I think there has been a fair amount.

Rovner: Yeah, it’s funny. This Congress has been sort of remarkably productive considering how dysfunctional it has been in public. But underneath, there actually has been a lot of lawmaking that’s gone on, bipartisan lawmaking. I mean, by definition, because the House is controlled by Republicans and the Senate by Democrats. And I think mental health is one of those issues that there is a lot of bipartisan cooperation on.

But I think there’s also a limit to what the federal government can do. I mean, there’s things that Congress could fix, like residency slots, but mental health is one of those things where they have to just sort of feed money into programs that happen. I think at the state and local level, there’s no federal… Well, there is a federal mental health program, but they’re overseeing grants and whatnot. I think we have time for maybe one more question.

[Audience member]: Hi. To your point of a lot of change happens at the regulatory level. In Medicaid one of the big avenues for that is 1115 waivers. And let’s take aside block granting or anything else for a minute. There’s been big bipartisan progress on, including social care and whole-person care models. This is not just a blue state issue. What might we expect from a Trump administration in terms of the direction of 1115s, which will have a huge effect on the kind of opportunity space in states for Medicaid? And maybe that we don’t know yet, but I’m curious. Maybe that 900-page document says something.

Sanger-Katz: Yeah, I think that’s an example of we don’t know yet because I think the personnel will really matter. From everything that I know about President Trump, I do not think that the details of Medicaid 1115 waiver policy are something that he gets up in the morning and thinks about or really cares that much about. And so I think …

Rovner: I’m not sure it’s even in Project 2025, is it?

Sanger-Katz: I think work requirements are, so that was something that they tried to do the last time. I think it’s possible that we would see those come back. But I think a lot really depends on who is in charge of CMS [Centers for Medicare & Medicaid Services] and Medicaid in the next Trump administration and what are their interests and commitments and what they’re going to say yes and no to from the states. And I don’t know who’s on the shortlist for those jobs, frankly. So I would just put that in a giant question-mark bin — with the possible exception of work requirements, which I think maybe we could see a second go at those.

Raman: I would also just point to his last few months in office when there were a lot of things that could have been changed had he been reelected; where they wanted to change Medicaid drug pricing. And then we had some things with block grants and various things that had we had a second Trump presidency we could have seen some of those waivers come to a fruition. So I could definitely see a push for more flexibility in asking states to come up with something new that could fall for under one of those umbrellas.

Rovner: Well, I know you guys have more questions, but we are out of time. If you enjoyed the podcast tonight, I hope you will subscribe. Listen to “What the Health?” every week. You can get it wherever you get your podcast. So good night and enjoy the rest of the festival. Thanks.

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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

With abortion shaping up as a key issue for the November elections, the movement that united to overturn Roe v. Wade is divided over going further, faster — including by punishing those who have abortions and banning contraception or IVF. Politicians who oppose abortion are already experiencing backlash in some states.

Meanwhile, bad actors are bilking the health system in various new ways, from switching people’s insurance plans without their consent to pocket additional commissions, to hacking the records of major health systems and demanding millions of dollars in ransom.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Roubein of The Washington Post, and Joanne Kenen of the Johns Hopkins schools of public health and nursing and Politico Magazine.

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Joanne Kenen
Johns Hopkins University and Politico

@JoanneKenen

Read Joanne's articles.

Rachel Roubein
The Washington Post

@rachel_roubein

Read Rachel's stories.

Among the takeaways from this week’s episode:

• It appears that abortion opponents are learning it’s a lot easier to agree on what you’re against than for. Now that the constitutional right to an abortion has been overturned, political leaders are contending with vocal groups that want to push further — such as by banning access to IVF or contraception.
• A Louisiana bill designating abortion pills as controlled substances targets people in the state, where abortion is banned, who are finding ways to get the drug. And abortion providers in Kansas are suing over a new law that requires patients to report their reasons for having an abortion. Such state laws have a cumulative chilling effect on abortion access.
• Some Republican lawmakers seem to be trying to dodge voter dissatisfaction with abortion restrictions in this election year. Sen. Ted Cruz of Texas and Sen. Katie Britt of Alabama introduced legislation to protect IVF by pulling Medicaid funding from states that ban the fertility procedure — but it has holes. And Gov. Larry Hogan of Maryland declared he is pro-choice, even though he mostly dodged the issue during his eight years as governor.
• Former President Donald Trump is in the news again for comments that seemed to leave the door open to restrictions on contraception — which may be the case, though he is known to make such vague policy suggestions. Trump’s policies as president did restrict access to contraception, and his allies have proposed going further.

Also this week, Rovner interviews Shefali Luthra of The 19th about her new book on abortion in post-Roe America, “Undue Burden.”

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

Julie Rovner: The 19th’s “What Happens to Clinics After a State Bans Abortion? They Fight To Survive,” by Shefali Luthra and Chabeli Carrazana. 

Alice Miranda Ollstein: Stat’s “How Doctors Are Pressuring Sickle Cell Patients Into Unwanted Sterilizations,” by Eric Boodman.  

Rachel Roubein: The Washington Post’s “What Science Tells Us About Biden, Trump and Evaluating an Aging Brain,” by Joel Achenbach and Mark Johnson.  

Joanne Kenen: ProPublica’s “Toxic Gaslighting: How 3M Executives Convinced a Scientist the Forever Chemicals She Found in Human Blood Were Safe,” by Sharon Lerner; and The Guardian’s “Microplastics Found in Every Human Testicle in Study,” by Damian Carrington. 

Also mentioned on this week’s podcast:

• NPR’s “Republicans Try To Soften Stance on Abortion as ‘Abolitionists’ Go Farther,” by Sarah McCammon.
• KFF Health News’ “Biden Leans Into Health Care, Asking Voters To Trust Him Over Trump,” by Phil Galewitz.
• KFF Health News’ “Exclusive: Senator Urges Biden Administration To Thwart Fraudulent Obamacare Enrollments,” by Julie Appleby.
• KFF Health News’ “KHN’s ‘What the Health?’: Un-Trumping the ACA,” featuring an interview with journalist Marshall Allen.

Click to open the Transcript

Transcript: Anti-Abortion Hard-Liners Speak Up

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Mila Atmos: The future of America is in your hands. This is not a movie trailer, and it’s not a political ad, but it is a call to action. I’m Mila Atmos, and I’m passionate about unlocking the power of everyday citizens. On our podcast Future Hindsight, we take big ideas about civic life and democracy and turn them into action items for you and me. Every Thursday, we talk to bold activists and civic innovators to help you understand your power and your power to change the status quo. Find us at futurehindsight.com or wherever you listen to podcasts.

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, May 23, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this. So, here we go. We are joined today via a video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Rachel Roubein of The Washington Post.

Rachel Roubein: Hi, thanks for having me.

Rovner: And Joanne Kenen of the Johns Hopkins schools of public health and nursing and Politico Magazine.

Joanne Kenen: Hi, everybody.

Rovner: Later in this episode, we’ll have my interview with podcast panelist Shefali Luthra of The 19th. Shefali’s new book about abortion in the post-Roe [v. Wade] world, called “Undue Burden,” is out this week. But first, this week’s news. We’re going to start with abortion this week with a topic I’m calling “Abolitionists in Ascendance,” and a shoutout here to NPR’s Sarah McCammon with a great piece on this that we will link to in the show notes. It seems that while Republican politicians, at least at the federal level, are kind of going to ground on this issue, and we’ll talk more about that in a bit, those who would take the ban to the furthest by prosecuting women, and/or banning IVF and contraception, are raising their voices. How much of a split does this portend for what, until the overturn of Roe, had been a pretty unified movement? I mean they were all unified in “Let’s overturn Roe,” and now that Roe has gone, boy are they dividing.

Ollstein: Yeah, it’s a lot easier to agree on what you’re against than on what you’re for. We wrote about the split on IVF specifically a bit ago, and it is really interesting. A lot of anti-abortion advocates are disappointed in the Republican response and the Republican rush to say, “No, let’s leave IVF totally alone” because these groups think, some think it some should be banned, some think that there should be a lot of restrictions on the way it’s currently practiced. So not a total ban, but things like you can only produce a certain number of embryos, you can only implant a certain number of embryos, you can only create the ones you intend to implant, and so that would completely upend the way IVF is currently practiced in the U.S.

So, we know the anti-abortion movement is good at playing the long game, and so some of them have told me that they see this kind of like the campaign to overturn Roe v. Wade. They understand that Republicans are reacting for political reasons right now, and they are confident in winning them over for restrictions in the long term.

Rovner: I’ve been fascinated by, I would say, by things like Kristan Hawkins of Students for Life [of America] who’s been sort of the far-right fringe of the anti-abortion movement looking like she’s the moderate now with some of these people, and their discussions of “We should charge women with murder and have the death penalty if necessary.” Sorry, Rachel, you want to say something?

Roubein: This is something that Republicans, they don’t want to be asked about this on the campaign. The more hard-line abolitionist movement is something more mainstream groups have been taking a lot of pains to distance themselves and say that we don’t prosecute women, and essentially nobody wants to talk about this ahead of 2024. GOP doesn’t want to be seen as that party that’s going after that.

Kenen: And the divisions existed when Roe was still the law of the land, and we would all write about the divisions and what they were pushing for, and it was partly strategic. How far do you push? Do you push for legislation? Do you push for the courts? Do you push for 20 weeks for fetal pain? But it was like rape exceptions and under what terms and things like that. So it was sort of much later in pregnancy, and with more restrictions, and the fight was about exactly where do you draw that line. This abolition of all abortion under all circumstances, or personhood, only a couple of years ago, were the fringe. Personhood was sort of like, “Oh, they’re out there, no one will go for that.” And now I don’t think it’s the dominant voice. I don’t think we yet know what their dominant voice is, but it’s a player in this conversation.

At the same time, on the other side, the pro-abortion rights people, there’s polls showing us this many Americans support abortion, but it’s subtler too. Even if people support abortion rights, it doesn’t mean that they’re not, some subset are in favor of some restrictions, or where that’s going to settle. Right now, a 15-week ban, which would’ve seemed draconian a year or two ago, now seems like the moderate position. It has not shaken out, and …

Rovner: Well, let’s talk …

Kenen: It’s not going to shake out for some time.

Rovner: Let’s talk about a few specifics. The Louisiana State Legislature on Tuesday approved a bill that would put the drugs used in medication abortion, mifepristone and misoprostol, on the state’s list of controlled substances. This has gotten a lot of publicity. I’m wondering what the actual effect might be here though since abortion is already banned in Louisiana. Obviously, these drugs are used for other things, but they wouldn’t be unavailable. They would just be put in this category of dangerous drugs.

Ollstein: So, officials know that people in banned states, including Louisiana, are obtaining abortion pills from out of state, whether through telehealth from states with shield laws or through these gray-area groups overseas that are mailing pills to anyone no matter what state they live in or what restrictions are in place. So I think because it would be very difficult to actually enforce this law, short of going through people’s homes and their mail, this is just one more layer of a chilling effect and making people afraid to seek out those mail order services.

Rovner: So it’s more, again, for the appearance of it than the actuality of it.

Ollstein: It also sets up another state versus federal law clash, potentially. We’ve seen this playing out in courts in West Virginia and in North Carolina, basically. Can states restrict or even completely ban a medication that the FDA says is safe and effective? And that question is percolating in a few different courts right now.

Rovner: Including sort of the Supreme Court. We’re still waiting for their abortion pill decision that we expect now next month. Meanwhile, in Kansas, where voters approved a big abortion rights referendum in 2022 — remember, it was the first one of those — abortion providers are suing to stop a new state law enacted over the governor’s veto that would require them to report to the state women’s reasons for having an abortion. Now it’s not that hard to see how that information could be misused by people with other kinds of intents, right?

Ollstein: Well, it also brings up right to free speech issues, compelled speech. I think I’ve seen this pop up in abortion lawsuits even before Dobbs [v. Jackson Women’s Health Organization], this very issue because there have been instances where either doctors are required to give information that they say that they believe is medically inaccurate. That’s an issue in several states right now. And then this demanding information from patients. A lot of clinics that I’ve spoken to are so afraid of subpoenas from officials in-state, from out of state, that they intentionally don’t ask patients for certain kinds of data even though it would really help medically or organizationally for them to have that data. But they’re so afraid of it being seized, they figure well, they can’t seize it if they’re … doesn’t exist in the first place. And so I think this kind of law is in direct conflict with that.

Roubein: It also gets at the question of medical privacy that we’ve been seeing in the Biden administration’s efforts over HIPAA and protecting patients’ records and making it harder for state officials to attempt to seize.

Rovner: Yeah, this is clearly going to be a struggle in a lot of states where voters versus Republican legislatures, and we will sort of see how that all plays out. So even while this is going on in a bunch of the states, a lot of Republicans, including some who have been and remain strongly anti-abortion, are doing what I’m calling ducking-and-covering on a lot of these issues. Case in point, Texas Republican Sen. Ted Cruz and Alabama Republican Sen. Katie Britt this week introduced a bill they say would protect IVF, which is kind of ironic given that both of them voted against a bill to protect IVF back in, checking notes, February. What’s the difference here? What are these guys trying to do?

Kenen: Theirs is narrower. They say that the original bill, which was a Democratic bill, was larded with abortion rights kinds of things. I have not read the entire bill, I just read the summary of it. And in this one, if a state restricts someone who had — someone feel free to correct me if I am missing something here because I don’t have deep knowledge of this bill — but if a state does not protect IVF, they would lose their Medicaid payment. And I was not clear whether that meant every penny of Medicaid, including nursing homes, or if it’s a subsection of Medicaid, because it seems like a big can of worms.

Ollstein: Yeah, so the key difference in these bills is the word ban. The Republican bill says that if states ban IVF, then these penalties kick in for Medicaid, but they say that there can be “health and safety regulations,” and so that is very open to interpretation. That can include the things we talked about before about you can only produce a certain number of embryos, you can only implant a certain number of embryos, and you can’t discard them. And so even what Alabama did was not an outright ban. So even something like that that cut off services for lots of people wouldn’t be considered a ban under this Republican bill. So I think there’s sort of a semantic game going on here where restrictions would still be allowed if they were short of a blanket ban, whereas the democratic bill would also prevent restrictions.

Rovner: Well, and along those exact same lines, in Maryland, former two-term Republican governor Larry Hogan, who’s managed to dodge the abortion issue in his primary run to become the Senate nominee, now that he is the Republican candidate for the open Senate seat, has declared himself, his words, “pro-choice,” and says he would vote to restore Roe in the Senate if given the opportunity. But as I recall, and I live in Maryland, he vetoed a couple of bills to expand abortion rights in very blue Maryland. Is he going to be able to have this both ways? He seems to be doing the [Sen.] Susan Collins script where he gets to say he’s pro-choice, but he doesn’t necessarily have to vote for abortion rights bills.

Kenen: Hogan is a very popular moderate Republican governor in a Democratic state. He is a strong Senate candidate. His opponent, a Democrat, Angela Alsobrooks, has a stronger abortion rights record. I don’t think that’s going to be the decisive issue in Maryland. I think it may help him a little bit, but I think in Maryland, if the Senate was 55-45, a lot of Democrats like Hogan and might want another moderate Republican in the Senate. But given that this is going to be about control of the Senate, abortion will be a factor, I don’t think abortion is going to be the dominant factor in this particular race.

If she were to win and there’s two black women, I mean that would be the first time that two black women ever served in the Senate at once, and I think they would only be number three and number four in history. So race and Affirmative Action will be factors, but I think that Democrats who might otherwise lean toward him, because he was considered a good governor. He was well-liked. This is a 50-50ish Senate, and that’s the deciding thing for anyone who pays attention, which of course is a whole other can of worms because nobody really pays attention. They just do things.

Roubein: I think it’s also worth noting this tact to the left comes as Maryland voters will be voting on an abortion rights ballot measure in 2024. So that all sort of in context, we’ve seen what’s happened with the other abortion measures, abortion rights have won, so.

Rovner: And Maryland is a really blue state, so one would expect it …

Kenen: There’s no question that the Maryland …

Rovner: Yeah.

Kenen: I mean, and all of us would fall flat on our faces if the abortion measure fails in Maryland. But I believe this is the first one on the ballot alongside a presidential election, and some of them have been in special elections. It’s unclear the correlation between, you can vote for a Republican candidate and still vote for a pro-abortion rights initiative. We will learn a lot more about how that split happens in November. I mean, is Kansas going to go for Biden? Unlikely. But Kansas went really strong for abortion rights. If you’re not a single-issue voter, you can, in fact, have it both ways.

Rovner: Yes, and we are already seeing that in the polls. Well, of course then there is the king of trying to have it both ways: former President Trump. He is either considering restrictions on contraception, as he told an interviewer earlier this week, promising a proposal soon, or he will, all caps, as he put on Truth Social, never advocate imposing restrictions on birth control. So which is it?

Ollstein: So this came out of Trump’s verbal tick of saying “We’ll have a plan in a few weeks,” which he says about everything. But in this context it made it sound like he was leaving the door open to restrictions on contraception, which very well might be the case. So what my colleague and I wrote about is he says he would never restrict contraception. A lot of things he did in his first administration did restrict access to contraception. It was not a ban. Again, we’re getting back into the semantics of ban. It was not a ban, but his Title X rule led to a drop in hundreds of thousands of people accessing contraception. He allowed more kinds of employers to refuse to cover their employees’ contraception on their health plans, and the plans his allies are creating in this Project 2025 blueprint would reimpose those restrictions and go even further in different ways that would have the effect of restricting access to contraception. And so I think this is a good instance of look at what people do, not what they say.

Rovner: So now that we’re on the subject of campaign 2024, President Biden’s campaign launched a $14 million ad buy this week that includes the warning that if Trump becomes president again he’ll try to repeal the Affordable Care Act. Maybe health care will be an issue in this election after all? I don’t have a rooting interest one way or the other. I’m just curious to see how much of an issue health will be beyond reproductive rights.

Kenen: Well, as Alice just pointed out, Trump’s promised plans often do not materialize, and we are still waiting to see his replacement plan eight years later. I think he’s being told to sort of go slow on this. I mean, not that you can control what Trump says, but he didn’t run on health care until the end, in 2016. It was a close race, and he ran against Hillary Clinton, and it was the last 10 or so days that he really came down hard because it was right when ACA enrollment was about to begin and premiums came in and they were high. He pivoted. So is this going to be a health care election from day one? And I’m putting abortion aside for one second in terms of my definition of health care for this particular segment. Is it going to be a health care election in terms of ACA, Medicare, Medicaid? At this point, probably not. But is it going to emerge at various times by one or the other side in politically opportune ways? I would be surprised if Biden’s not raising it. The ACA is thriving under Biden.

Rovner: Well, he is. That’s the whole point. He just took out a $14 million ad buy.

Kenen: Right. But again, we don’t know. Is it a health care election or is it a couple ads? We don’t know. So yes, it’s going to be a health care election because all elections are health care elections. How much it’s defined by health care compared to immigration? No, at this point, that’s not what we’re expecting. Compared to the economy? No, at this point. But is it an issue for some voters? Yes. Is it going to be an issue more prominently depending on how other things play out? It’ll have its peaks. We just don’t know how consistent it’ll be.

Roubein: Biden would love to run on the Inflation Reduction Act and politically popular policies like allowing Medicare to negotiate drug prices. One of the problems of that is polls, including from KFF, has shown that the majority of voters don’t know about that. And some of these policies, the big ones, have not even gone into effect. CMS [Centers for Medicare & Medicaid Services] is going through the negotiation process, but that’s not going to hit people’s pocketbooks until after the election.

Kenen: The cliff for the ACA subsidies, which is in 2025, I mean I would imagine Democrats will be campaigning on, “We will extend the subsidies,” and again, in some places more than others, but that’s a time-sensitive big thing happening next year.

Rovner: But talk about an issue that people have no idea that’s coming. Well, meanwhile, for Trump, reproductive health isn’t the only issue where he’s doing a not-so-delicate dance. Apparently worried about Robert F. Kennedy Jr. stealing anti-vax [vaccine] votes from him, Trump is now calling RFK Jr. a fake anti-vaxxer. Except I’m old enough to remember when Trump bragged repeatedly about how fast his administration developed and brought the covid vaccine to market. That used to be one of his big selling points. Now he’s trying to be anti-vax, too?

Kenen: Not only did he brag about bringing it to the market. The way he used to talk about it, it was like he was there in his lab coat inventing it. Operation Warp Speed was a success. It got vaccines out in record time, way beyond what many people expected. Democrats gave him credit for that one policy in health care. He got a vaccine out and available in less than a year, and he got vaccinated and boasted about being vaccinated. He was open about it. Now we don’t know if he’s been boosted. He really backed off. As soon as somebody booed him, and it wasn’t a lot of boos, at one rally when he talked about vaccination and he got pushed back, that was the end.

Rovner: So, yeah, so I expect that to sort of continue on this election season, too.

Kenen: But we don’t expect RFK to flip.

Rovner: No, we do not. Right. Well, moving on to this weekend’s “Cyber Hacks,” a new feature, the fallout continues from the hack of Ascension [health care company]. That’s the Catholic hospital system with facilities in 19 states. In Michigan, patients have been unable to use hospital pharmacies and their doctors have been unable to send electronic prescriptions, so they’re having to write them out by hand. And in Indiana orders for tests and test results are being delayed by as much as a day for hospital patients. Not a great thing.

And just in time, or maybe a little late, the U.S. Department of Health and Human Services, through the newly created ARPA-H [Advanced Research Projects Agency for Health] that we have talked about, this week announced the launch of a new program to help hospitals make security patches and updates to their systems without taking them offline, which is obviously a major reason so many of these systems are so vulnerable to cyberhacking.

Of course, this announcement from HHS is just to solicit ideas for grants to help make that happen. So it’s going to be a while before we get any of these security changes. I’m wondering, how many systems are going to try to build a lot more redundancy into them? In the meantime, are we hearing anything about what they can do in the short term? It feels like the entire health care system is kind of a sitting duck for this group of cyberhackers who think they can get in easily and get ransom.

Kenen: There’s a reason they think that.

Rovner: They can.

Roubein: Thinking about hospitals and doctors using this manually, paper-based system and how that’s delaying getting your results and just there’s been these stories about patients. Like the anxiety that that’s understandably causing patients, and we’ll see sort of whether Congress can grapple with this, and there’s not really much legislation that’s going to move, so …

Kenen: But I was surprised that they were calling on ARPA-H. I mean, that’s supposed to be a biotech- curing-diseases thing, and none of the four of us are cybersecurity experts, and none of us really specialize in covering the electronic side of the digital side of health, but it just seems to me, I just thought that was an odd thing. First of all, some of these are just systems that haven’t been upgraded or individual clinicians who don’t upgrade or don’t do their double authorization. Some of it’s sort of cyberhygiene, and some of it’s obviously like the change thing. They’re really sophisticated criminals, but it’s not something that one would think you can’t get ahead of, right? They’re smart, good-guy technology people. It’s not like the bad guys are the only ones who understand technology. So why are the smart good guys not doing their job? And also, probably, health care systems have to have some kind of security checks on their own members to make sure they are following all the safety rules and some kind of consequences if you’re not, other than being embarrassed.

Rovner: I’ve just been sort of bemused by all of this, how both patients and providers complain loudly and frequently about the frustrations of some of these electronic record systems. And of course, in the places that they’re going down and they’ve had to go back to paper, people are like, “Please give us our electronic systems back.” So it doesn’t take long to get used to some of these things and be sorry when they’re gone, even if it’s only temporarily. It’s obviously been …

Kenen: But like what Rachel said, if you’re in the hospital, you’re sick, and do your clinicians need your lab results? Yes. I mean some of them are more important than others, and I would hope that hospitals are figuring out how to prioritize. But yeah, this is a crisis. If you’re in the hospital and they don’t know what’s wrong with you and they’re trying to figure out do you have X, Y, or Z, waiting until next week is not really a great idea.

Rovner: But it wasn’t that many years ago that their existence …

Kenen: Right, no, no, no.

Rovner: … did not involve …

Kenen: [inaudible 00:21:28].

Rovner: … electronic medical record.

Kenen: Right. Right.

Rovner: They knew how to get test results back and forth even if it was sending an intern to go fetch them. Finally, this week, we have some updates on some stories that we’ve talked about in earlier episodes. First, thanks in part to the excellent reporting of my colleague and sometime-pod-panelist Julie Appleby, the Senate Finance Committee Chairman Ron Wyden is demanding that HHS [U.S. Department of Health and Human Services] officials do more to rein in rogue insurance brokers who are reaping extra commissions by switching patients’ Affordable Care Act plans without their knowledge, often subjecting them to higher out-of-pocket costs and separating them from the providers that they’ve chosen. Sen. Wyden said he would introduce legislation to make such schemes a crime, but in the meantime he wants Biden officials to do more, given that they have received more than 90,000 complaints in the first quarter of 2024 alone about unauthorized switches and enrollments. Criminals go where the money is, right? You can either cyberhack or you can become a broker and switch people to ACA plans so you can get more commissions.

Kenen: I would think there could be a bipartisan, I mean it’s hard to get anything done in Congress. There’s no must-pass bills in the immediate future that are relevant. And the idea that a broker is secretly doing something that you don’t want them to do and that’s costing you money and making them money. I could see, those 90,000 people are from red and blue states and they vote, it’s going to affect constituents nationwide. Maybe they’ll do something. Maybe the industry can also… There is the National Association … I forgot the acronym, but there’s a broker’s organization, that there are probably things that they can also do to sanction. States can also do some things to brokers, but whether there’s a national solution or piecemeal, I don’t know, but it’s so outrageous that it’s not a right-left issue.

Rovner: Yes, one would think that there’ll be at least some kind of congressional action built into something …

Kenen: Something or other, right.

Rovner: … Congress that manages to do before the end of the year. Well, and in one of those seemingly rare cases where legislation actually does what it was intended to do, the White House this week announced that it has approved more than a million claims under the 2022 PACT Act, which made veterans injured as a result of exposure to burn pits and other toxic substances eligible for VA [Veterans Affairs] disability benefits. On the other hand, the VA is still working its way through another 3 million claims that have been submitted. I feel like even if it’s not very often, sometimes it’s worth noting that there are bipartisan things from Washington, D.C., that actually get passed and actually help the people that they’re supposed to help. It’s kind of sad that this is notable as an exception of something that happened and is working.

Roubein: In sort of the, I guess, Department of Unintended Side Effects here, my colleague Lisa Rein had a really interesting story out this morning that talked about the PACT Act, but basically that despite a federal law that prohibits charging veterans for help in applying for disability benefits, for-profit companies are making millions. She did a review of up to like a hundred unaccredited for-profit companies who have been charging veterans anywhere from like $5,000 to $20,000 for helping file disability claims because …

Rovner: That’s the theme of this week. Anyplace that there’s a lot of money in health care, there were people who will want to come in and take what’s not theirs. That’s where we will leave the news this week. Now we will play my interview with Shefali Luthra, then we’ll come back with our extra credits.

I am so pleased to welcome back to the podcast my former colleague and current “What The Health?” panelist Shefali Luthra. You haven’t heard from her in a while because she’s been working on her first book, called “Undue Burden,” that’s out this week. Shefali, great to see you.

Luthra: Thank you so much for having me Julie.

Rovner: So as the title suggests, “Undue Burden” is about the difficulties for both patients and providers in the wake of the overturn of Roe v. Wade. We talk so much about the politics of this issue, and so little about the real people who are affected. Why did you want to take this particular angle?

Luthra: To me, this is what makes this topic so important. Health care and abortion are really critical political issues. They sway elections. They are likely to be very consequential in this coming presidential election. But this matters to us as reporters and to us as people because of the life-or-death stakes and even beyond the life-or-death stakes, the stakes of how you choose to live your life and what it means to be pregnant and to be a parent. These are really difficult stories to tell because of the resources involved. And I wanted to write a book that just got at all of the different reasons why people pursue abortion and why they provide abortion and how that’s changed in the past two years. Because it felt to me like one of the few ways we could really understand just how seismic the implications of overturning Roe has been.

Rovner: And unlike those of us who talk to politicians all the time, you were really on the ground talking to patients and doctors, right?

Luthra: That was really, really important to the book. I spent a lot of time traveling the country, in clinics talking to people who were able to get abortions, who were unable to get abortions, and it was just really compelling for me to see how much access to care had the capacity to change their lives.

Rovner: So what kind of barriers then are we talking about that cropped up? And I guess it wasn’t even just the wake of the overturn of Roe. In Texas we had sort of a yearlong dry run.

Luthra: Exactly, and the book starts before Roe is overturned in Texas when the state enacted SB 8, the six-week abortion ban that effectively cut off access. And the first main character readers meet is this young girl named Tiffany, and she’s a teenager when she becomes pregnant, and she would love to get an abortion. But she is a minor. She lives very far from any abortion provider. She does not know how to self-manage an abortion. She does not know where to find pills. She has no connections into the health care system. She has no independent income. And she absolutely cannot travel anywhere for care. As a result, she has a child before she turns 18. And what this story highlights is that there are just so many barriers to getting an abortion. Many already existed: The incredible cost for procedure not covered by health insurance, the geographic distance, people already had to travel, the extra restrictions on minors.

But the overturning of Roe has amplified these, it is so expensive to get an abortion. It can be difficult to know you’re pregnant, especially if you are not trying to become pregnant. You have a very short time window. You may need to find childcare. You may need to find a car, get time off work, and bring all of these different forces together so that you are able to make a journey that can be days and pay for a trip that can cost thousands of dollars.

Rovner: One of the things that I think surprised me was that states that proclaimed themselves abortion “havens” actually did so little to help their clinics that predictably got swamped by out-of-state patients. Why do you think that was the case, and is it any better now?

Luthra: I think things have certainly changed. We have seen much more action in states, such as Illinois, where we see more people traveling there for care than anywhere else in the country. But it is worth going back to the summer that Roe was overturned. The governor promised to call a special session and put all these resources into making sure that Illinois could be a sanctuary. He never called that special session. And clinics felt like they were hanging out to dry, just waiting to get some support, and in the meanwhile, doing the absolute best they could.

One thing that I think this book really gets at is we are starting to see more efforts from these bluer states, the Illinois, the Californias, the New Yorks, and they talk a lot about wanting to be abortion havens, in part because it’s great politics if you’re a Democrat, but there’s only so much you can do. California has seen also quite a large increase in out-of-state patients. But I’ve spoken to so many people who just cannot conceivably go to California. They can barely go to Illinois. Making that journey when you are young, if you don’t have a lot of money, if you live in South Texas, if you live in Louisiana, it’s just not really feasible. And the places that are set up as these access points just can’t really fill in the gaps that they say they will.

Rovner: As you point out in the book, a lot of this was completely predictable. Was there something in your reporting that actually did surprise you?

Luthra: That’s a great question, and what did surprise me was in part something that we’ve begun to see borne out in the reporting, is there are very effective telemedicine strategies. We have begun to see physicians living in blue states, the New Yorks, Massachusetts, Californias, prescribing and mailing abortion pills to people in states with bans. This is pretty powerful. It has expanded access to a lot of people. What was really striking to me, though, even as I reported about the experiences of patients seeking care, is that while that has done so much to expand access in the face of abortion bans, it isn’t a solution that everyone can use. There were lots of people I met who did not want a medication abortion, who did not feel safe having pills mailed into their homes, or whose pregnancy complications and questions were just too complex to be solved by a virtual consult and then pills being mailed to them to take in the comfort of their house.

Rovner: Aren’t these difficulties exactly what the anti-abortion movement wanted? Didn’t they want clinics so swamped they couldn’t serve everybody who wanted to come, and abortion to be so difficult to get that women would end up carrying their pregnancies to term instead?

Luthra: Yes and no, I would argue. I think you are absolutely right that one of the primary goals of the anti-abortion movement was to make abortion unavailable, to make it harder to acquire, to have more people not get abortions and instead have children. But when I speak to folks in the anti-abortion movement, they are very troubled by how many people are traveling out of state to get care. They see those really long wait times in Kansas, in, until recently, Florida, in Illinois, in New Mexico, as a symptom of something that they need to address, which is that so many people are still finding a way to fight incredible odds to access abortion.

Rovner: Is there one thing that you hope people take away after they’re finished reading this?

Luthra: There are two things that I have spent a lot of time thinking about as I’ve reported this book. The first is just who gets abortions and under what circumstances. And so often in the national press, in national politics, we talk about these really extreme life-or-death cases. We talk about people who became septic and needed an abortion because their water broke early, or we talk about children who have been sexually assaulted and become pregnant. But we don’t talk about most people who get abortions; who are usually mothers, who are usually people of color, who are in their 20s and just know that they can’t be pregnant. I think those are really important stories to tell because they’re the true face of who is most affected by this, and it was important to me that this book include that.

The other thing that I have thought about so often in reporting this and writing this is abortion demands have an unequal impact. That is true if you are poor, if you are a person of color, if you live in a rural area, et cetera. You will in all likelihood see a greater effect. That said, the overturning of Roe v. Wade is so tremendous that it has affected people in every state. It affects you if you can get pregnant. It affects you if you want birth control. It affects you if you require reproductive health care in some form. This is just such a seismic change to our health care system that I really hope people who read this book understand that this is not a niche issue. This is something worthy of our collective attention and concern as journalists and as people.

Rovner: Shefali Luthra, thank you so much for this, and we will see you soon on the panel, right?

Luthra: Absolutely. Thank you, Julie. I’m so glad we got to do this.

Rovner: OK, we are back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Joanne, why don’t you go first this week?

Kenen: This was a pair of articles, a long one and a shorter, related one. There’s an amazingly wonderful piece in ProPublica by Sharon Lerner, and it’s called “Toxic Gaslighting: How 3M Executives Convinced a Scientist the Forever Chemicals She Found in Human Blood Were Safe.” I’m going to come back and talk about it briefly in a second, but the related story was in The Guardian by Damian Carrington: “Microplastics Found in Every Human Testicle in Study.” Now, that was a small study, but there may be a link to the declining sperm count because of these forever chemicals.

The ProPublica story, it was a young woman scientist. She worked for 3M. They kept telling her her results was wrong, her machinery was dirty, over and over and over again until she questioned herself and her findings. She was supposed to be looking at the blood of 3M workers who were, it turned out, the company knew all this already and they were hiding it, and she compared the blood of the 3M workers to non-3M workers, and she found these plastic chemicals in everybody’s blood everywhere, and she was basically gaslit out of her job. She continued to work for 3M, but in a different capacity.

The article’s really scary about the impact for human health. It also has wonderfully interesting little nuggets throughout about how various 3M products were developed, some by accident. Something spilled on somebody’s sneaker and it didn’t stain it, and that’s how we got those sprays for our upholstery. Or somebody needed something to find the pages in their church hymnal, and that’s how we got Post-it notes. It’s a devastating but very readable, and it makes you angry.

Rovner: Yeah, I feel like there’s a lot more we’re going to have to say about forever chemicals going forward. Alice.

Ollstein: So I have a pretty depressing story from Stats. It’s called “How Doctors Are Pressuring Sickle Cell Patients Into Unwanted Sterilizations,” by Eric Boodman. And it is about people with sickle cell, and that is overwhelmingly black women, and they felt pressured to agree to be permanently sterilized when they were going to give birth because of the higher risks. And the doctors said, because we’re already doing a C-section and we’re already doing surgery on you, to not have to do an additional surgery with additional risks, they felt pressured to just sign that they could be sterilized right then and there and came to regret it later and really wanted more children. And so, this is an instance of people feeling coerced, and when people think about pro-choice or the choice debate about reproduction they mostly think about the right to an abortion. But I think that the right to have more children, if you want to, is the other side of that coin.

Rovner: It is. Rachel.

Roubein: My extra credit, it’s called “What Science Tells Us About Biden, Trump and Evaluating an Aging Brain,” by Joel Achenbach and Mark Johnson from The Washington Post. And basically, they kind of took a very science-based look at the 2024 election. They basically called it a crash course in gerontology because former President Donald Trump will be 78 years old. President Biden will be a couple weeks away from turning 82. And obviously that is getting a lot of attention on the campaign trail. They talked to medical and scientific experts who were essentially warning that news reports, political punditry about the candidates’ mental fitness, has essentially been marred by misinformation here about the aging process. One of the things they dived into was these gaffes or what the public sees as senior moments and what experts had told them is, that’s not necessarily a sign of dementia or predictive of cognitive decline. There need to be kind of further clinical evaluation for that. But there have been some calls for just how to kind of standardize and require a certain level of transparency for candidates in terms of disclosing their health information.

Rovner: Yes, which we’ve been talking about for a while, and will continue to. My extra credit this week is from our guest, Shefali Luthra, and her colleague at The 19th Chabeli Carrazana, and it’s called “What Happens to Clinics After a State Bans Abortion? They Fight To Survive.” And for all the talk about doctors and other staffers either moving out of or not moving into states with abortion bans, I think less has been written about entire enterprises that often provide far more than just abortion services having to shut down as well. We saw this in Texas in the mid-2010s, when a law that shut down many of the clinics there was struck down by the Supreme Court in 2016. But many of those clinics were unable to reopen. They just could not reassemble, basically, their leases and equipment and staff. The same could well happen in states that this November vote to reverse some of those bans. And it’s not just abortion, as we’ve discussed. When these clinics close, it often means less family planning, less STI [sexually transmitted infection] screening and other preventive services as well, so it’s definitely something to continue to watch.

Before we go this week, I want to note the passing of a health policy journalism giant with the death of Marshall Allen. Marshall, who worked tirelessly, first in Las Vegas and more recently at ProPublica, to expose some of the most unfair and infuriating parts of the U.S. health care system, was on the podcast in 2021 to talk about his book, “Never Pay the First Bill, and Other Ways to Fight the Health Care System and Win.” I will post a link to the interview in this week’s show notes. Condolences to Marshall’s friends and family.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcast. We’d appreciate it if you left us a review. That helps other people find us too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner. Joanne, where are you?

Kenen: We’re at Threads @JoanneKenen.

Rovner: Alice.

Ollstein: Still on X @AliceOllstein.

Rovner: Rachel.

Roubein: On X, @rachel_roubein.

Rovner: We will be back in your feed next week. Until then, be healthy.

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In early 2020, with reports of covid-19 outbreaks making dire headlines, Trever Schapers worried about her father’s safety in a nursing home in Queens.

She had delighted in watching her dad, John Schapers, blow out the candles on his 90th birthday cake that February at the West Lawrence Care Center in the New York City borough. Then the home went into lockdown.

Soon her father was dead. The former union painter spiked a fever and was transferred to a hospital, where he tested positive for covid, his daughter said, and after two weeks on a ventilator, he died in May 2020.

But when Trever Schapers sued the nursing home for negligence and wrongful death in 2022, a judge dismissed the case, citing a New York state law hastily passed early in the pandemic. It granted immunity to medical providers for “harm or damages” from an “act or omission” in treating or arranging care for covid. She is appealing the decision.

“I feel that families are being ignored by judges and courts not recognizing that something needs to be done and changed,” said Schapers, 48, who works in the medical field. “There needs to be accountability.”

The nursing home did not return calls seeking comment. In a court filing, the home argued that Schapers offered no evidence that the home was “grossly negligent” in treating her father.

More than four years after covid first raged through many U.S. nursing homes, hundreds of lawsuits blaming patient deaths on negligent care have been tossed out or languished in the courts amid contentious legal battles.

Even some nursing homes that were shut down by health officials for violating safety standards have claimed immunity against such suits, court records show. And some families that allege homes kept them in the dark about the health of their loved ones, even denying there were cases of covid in the building, have had their cases dismissed.

Schapers alleged in a complaint to state health officials that the nursing home failed to advise her that it had admitted covid-positive patients from a nearby hospital in March 2020. In early April, she received a call telling her the facility had some covid-positive residents.

“The call I received was very alarming, and they refused to answer any of my questions,” she said.

About two weeks later, a social worker called to say that her father had a fever, but the staff did not test him to confirm covid, according to Schapers’ complaint.

The industry says federal health officials and lawmakers in most states granted medical providers broad protection from lawsuits for good faith actions during the health emergency. Rachel Reeves, a senior vice president with the American Health Care Association, an industry trade group, called covid “an unprecedented public health crisis brought on by a vicious virus that uniquely targeted our population.”

In scores of lawsuits, however, family members allege that nursing homes failed to secure enough protective gear or tests for staffers or residents, haphazardly mixed covid-positive patients with other residents, failed to follow strict infection control protocols, and brazenly misled frightened families about the severity of covid outbreaks among patients and staff.

“They trusted these facilities to take care of loved ones, and that trust was betrayed,” said Florida attorney Lindsey Gale, who has represented several families suing over covid-related deaths.

“The grieving process people had to go through was horrible,” Gale said.

A Deadly Toll

KFF Health News found that more than 1,100 covid-related lawsuits, most alleging wrongful death or other negligent care, were filed against nursing homes from March 2020 through March of this year.

While there’s no full accounting of the outcomes, court filings show that judges have dismissed some suits outright, citing state or federal immunity provisions, while other cases have been settled under confidential terms. And many cases have stalled due to lengthy and costly arguments and appeals to hash out limits, if any, of immunity protection.

In their defense, nursing homes initially cited the federal Public Readiness and Emergency Preparedness Act, which Congress passed in December 2005. The law grants liability protection from claims for deaths or injuries tied to vaccines or “medical countermeasures” taken to prevent or treat a disease during national emergencies.

The PREP Act steps in once the secretary of Health and Human Services declares a “public health emergency,” which happened with covid on March 17, 2020. The emergency order expired on May 11, 2023.

The law carved out an exception for “willful misconduct,” but proving it occurred can be daunting for families — even when nursing homes have long histories of violating safety standards, including infection controls.

Governors of at least 38 states issued covid executive orders, or their legislatures passed laws, granting medical providers at least some degree of immunity, according to one consumer group’s tally. Just how much legal protection was intended is at the crux of the skirmishes.

Nursing homes answered many negligence lawsuits by getting them removed from state courts into the federal judicial system and asking for dismissal under the PREP Act.

For the most part, that didn’t work because federal judges declined to hear the cases. Some judges ruled that the PREP Act was not intended to shield medical providers from negligence caused by inaction, such as failing to protect patients from the coronavirus. These rulings and appeals sent cases back to state courts, often after long delays that left families in legal limbo.

“These delays have been devastating,” said Jeffrey Guzman, a New York City attorney who represents Schapers and other families. He said the industry has fought “tooth and nail” trying to “fight these people getting their day in court.”

Empire State Epicenter

New York, where covid hit early and hard, is ground zero for court battles over nursing home immunity.

Relatives of residents have filed more than 750 negligence or wrongful death cases in New York counties since the start of the pandemic, according to court data KFF Health News compiled using the judicial reporting service Courthouse News Service. No other area comes close. Chicago’s Cook County, a jurisdiction where private lawyers for years have aggressively sued nursing homes alleging poor infection control, recorded 121 covid-related cases.

Plaintiffs in hundreds of New York cases argue that nursing homes knew early in 2020 that covid would pose a deadly threat but largely failed to gird for its impact. Many suits cite inspection reports detailing chronic violations of infection control standards in the years preceding the pandemic, court records show. Responses to this strategy vary.

“Different judges take different views,” said Joseph Ciaccio, a New York lawyer who has filed hundreds of such cases. “It’s been very mixed.”

Lawyers for nursing homes counter that most lawsuits rely on vague allegations of wrongdoing and “boilerplate” claims that, even if true, don’t demonstrate the kind of gross negligence that would override an immunity claim.

New York lawmakers added another wrinkle by repealing the immunity statute in April 2021 after Attorney General Letitia James noted the law could give nursing homes a free pass to make “financially motivated decisions” to cut costs and put patients at risk.

So far, appeals courts have ruled lawmakers didn’t specify that the repeal should be made retroactive, thus stymying many negligence cases.

“So these cases are all wasting the courts’ time and preventing cases that aren’t barred by immunity statutes from being resolved sooner and clogging up the court system that was already backlogged from COVID,” said attorney Anna Borea, who represents nursing homes.

Troubled Homes Deflect Suits

Some nursing homes that paid hefty fines or were ordered by health officials to shut down at least temporarily because of their inadequate response to covid have claimed immunity against suits, court records show.

Among them is Andover Subacute and Rehabilitation nursing home in New Jersey, which made national headlines when authorities found 17 bodies stacked in a makeshift morgue in April 2020.

Federal health officials fined the facility $220,235 after issuing a critical 36-page report on covid violations and other deficiencies, and the state halted admissions in February 2022.

Yet the home has won court pauses in at least three negligence lawsuits as it appeals lower court rulings denying immunity under the federal PREP Act, court records show. The operators of the home could not be reached for comment. In court filings, they denied any wrongdoing.

In Oregon, health officials suspended operations at Healthcare at Foster Creek, calling the Portland nursing home “a serious danger to the public health and safety.” The May 2020 order cited the home’s “consistent inability to adhere to basic infection control standards.”

Bonnie Richardson, a Portland lawyer, sued the facility on behalf of the family of Judith Jones, 75, who had dementia and died in April 2020. Jones’ was among dozens of covid-related deaths at that home.

“It was a very hard-fought battle,” said Richardson, who has since settled the case under confidential terms. Although the nursing home claimed immunity, her clients “wanted to know what happened and to understand why.” The owners of the nursing home provided no comment.

No Covid Here

Many families believe nursing homes misled them about covid’s relentless spread. They often had to settle for window visits to connect with their loved ones.

Relatives of five patients who died in 2020 at the Sapphire Center for Rehabilitation and Nursing in the Flushing neighborhood in Queens filed lawsuits accusing the home’s operators of keeping them in the dark.

When they phoned to check on elderly parents, they either couldn’t get through or were told there was “no COVID-19 in the building,” according to one court affidavit.

One woman grew alarmed after visiting in February 2020 and seeing nurses wearing masks “below their noses or under their chin,” according to a court affidavit.

The woman was shocked when the home relayed that her mother had died in April 2020 from unknown causes, perhaps “from depression and not eating,” according to her affidavit.

A short time later, news media reported that dozens of Sapphire Center residents had died from the virus — her 85-year-old mother among them, she argued in a lawsuit.

The nursing home denied liability and won dismissal of all five lawsuits after citing the New York immunity law. Several families are appealing. The nursing home’s administrator declined to comment.

Broadening Immunity

Nursing home operators also have cited immunity to foil negligence lawsuits based on falls or other allegations of substandard care, such as bedsores, with little obvious connection to the pandemic, court records show.

The family of Marilyn Kearney, an 89-year-old with a “history of dementia and falls,” sued the Watrous Nursing Center in Madison, Connecticut, for negligence. Days after she was admitted in June 2020, she fell in her room, fracturing her right hip and requiring surgery, according to court filings.

She died at a local hospital on Sept. 16, 2020, from sepsis attributed to dehydration and malnutrition, according to the suit.

Her family argued that the 45-bed nursing home failed to assess her risk of falling and develop a plan to prevent that. But Watrous fired back by citing an April 2020 declaration by Connecticut Gov. Ned Lamont, a Democrat, granting health care professionals or facilities immunity from “any injury or death alleged to have been sustained because of the individual’s or health care facility’s acts or omissions undertaken in good faith while providing health care services in support of the state’s COVID-19 response.”

Watrous denied liability and, in a motion to dismiss the case, cited Lamont’s executive order and affidavits that argued the home did its best in the throes of a “public health crisis, the likes of which had never been seen before.” The operators of the nursing home, which closed in July 2021 because of covid, did not respond to a request for comment. The case is pending.

Attorney Wendi Kowarik, who represents Kearney’s family, said courts are wrestling with how much protection to afford nursing homes.

“We’re just beginning to get some guidelines,” she said.

One pending Connecticut case alleges that an 88-year-old man died in October 2020 after experiencing multiple falls, sustaining bedsores, and dropping more than 30 pounds in the two months he lived at a nursing home, court records state. The nursing home denied liability and contends it is entitled to immunity.

So do the owners of a Connecticut facility that cared for a 75-year-old woman with obesity who required a lift to get out of bed. She fell on April 26, 2020, smashing several teeth and fracturing bones. She later died from her injuries, according to the suit, which is pending.

“I think it is really repugnant that providers are arguing that they should not be held accountable for falls, pressure sores, and other outcomes of gross neglect,” said Richard Mollot, executive director of the Long Term Care Community Coalition, which advocates for patients.

“The government did not declare open season on nursing home residents when it implemented COVID policies,” he said.

Protecting the Vulnerable

Since early 2020, U.S. nursing homes have reported more than 172,000 residents’ deaths, according to Centers for Medicare & Medicaid Services data. That’s about 1 in 7 of all recorded U.S. covid deaths.

As it battles covid lawsuits, the nursing home industry says it is “struggling to recover due to ongoing labor shortages, inflation, and chronic government underfunding,” according to Reeves, the trade association executive.

She said the American Health Care Association has advocated for “reasonable, limited liability protections that defend staff and providers for their good faith efforts” during the pandemic.

“Caregivers were doing everything they could,” Reeves said, “often with limited resources and ever-changing information, in an effort to protect and care for residents.”

But patients’ advocates remain wary of policies that might bar the courthouse door against grieving families.

“I don’t think we want to continue to enact laws that reward nursing homes for bad care,” said Sam Brooks, of the Coalition for the Protection of Residents of Long-Term Care Facilities, a patient advocacy group.

“We need to keep that in mind if, God forbid, we have another pandemic,” Brooks said.

Bill Hammond, a senior fellow at the Empire Center for Public Policy, a nonpartisan New York think tank, said policymakers should focus on better strategies to protect patients from infectious outbreaks, rather than leaving it up to the courts to sort out liability years later.

“There is no serious effort to have that conversation,” Hammond said. “I think that’s crazy.”

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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En enero, Susanne Gilliam, de 67 años, estaba yendo a recoger el correo afuera de su casa cuando se cayó al resbalar sobre una capa de hielo negro.

Sintió una punzada de dolor en la rodilla y el tobillo de la pierna izquierda. Después de llamar a su marido por teléfono, logró regresar a su casa con dificultad.

Y así comenzó el vaivén interminable que tantas personas enfrentan cuando tienen que navegar el desorganizado sistema de salud de Estados Unidos.

El cirujano ortopédico de Gilliam, que la había tratado antes por problemas en la misma rodilla, la vio esa tarde pero le aclaró: “Yo no me ocupo de tobillos”.

La derivó a un especialista en tobillos que ordenó nuevas radiografías y una resonancia magnética. Gilliam pidió hacerse las pruebas en un hospital cerca de su casa en Sudbury, Massachusetts, que le resultaba más conveniente. Pero cuando llamó para pedir una cita, el hospital no tenía la orden del doctor, que finalmente llegó después de varias llamadas más.

Coordinar la atención que necesita para recuperarse, incluyendo sesiones de fisioterapia, se convirtió en un trabajo de medio tiempo para Gilliam. (Los terapeutas trabajan solo en una parte del cuerpo por sesión, y por lo tanto Gilliam requiere visitas separadas para su rodilla y su tobillo, varias veces a la semana).

“El peso de organizar todo lo que necesito es enorme”, dijo Gilliam. “Te queda una sensación de agotamiento físico y mental”.

En algunos casos, las deficiencias del sistema de salud son el precio que se paga por avances extraordinarios en el campo de la medicina. Pero también ponen en evidencia las incoherencias entre las capacidades de los adultos mayores y las demandas del sistema.

“La buena noticia es que sabemos mucho más y podemos hacer mucho más por las personas con distintas afecciones”, dijo Thomas H. Lee, director médico de Press Ganey, una consultoría que hace seguimiento de las experiencias de los pacientes con el sistema de salud. “La mala noticia es que el sistema se ha vuelto tremendamente complejo”.

Esto se agrava por las múltiples guías para tratar afecciones, la super especialización médica, y los incentivos financieros que hacen que los pacientes reciban cada vez más atención, dijo Ishani Ganguli, profesora asociada en la Escuela de Medicina de Harvard.

“No es raro que pacientes mayores tengan tres o más cardiólogos que les programan citas y pruebas regulares”, dijo. Si alguien tiene varios problemas de salud (por ejemplo, enfermedades cardíacas, diabetes y glaucoma), las interacciones con el sistema se multiplican.

Ganguli es la autora de un nuevo estudio que muestra que los pacientes de Medicare dedican aproximadamente tres semanas al año a hacerse pruebas médicas, ver a doctores, someterse a tratamientos o procedimientos médicos, buscar atención en salas de emergencia o pasar tiempo en el hospital o en centros de rehabilitación. (Los datos son de 2019, antes de la pandemia de covid, que alteró   los patrones de atención médica. Cada servicio recibido se contó como un día de contacto con el sistema de salud).

El estudio determinó que poco más de 1 de cada 10 personas mayores, incluyendo las que se estaban haciendo controles o recuperándose de enfermedades graves, pasaban más tiempo recibiendo atención médica: al menos 50 días al año.

“Hay aspectos de esto que son muy beneficiosos y valiosos para las personas, pero hay otros que son menos esenciales”, dijo Ganguli. “No hablamos lo suficiente sobre lo que les pedimos a los adultos mayores que hagan, y si tiene sentido”.

Victor Montori, profesor de medicina de la Clínica Mayo en Rochester, Minnesota, lleva muchos años advirtiendo sobre lo que llama la “carga de tratamiento” que enfrentan los pacientes.

Esto incluye el tiempo que dedican a recibir atención médica, programar citas, encontrar transporte para las visitas médicas, obtener y tomar medicamentos, comunicarse con las aseguradoras, pagar facturas médicas, monitorear su salud en casa y seguir consejos como cambios en la dieta.

Hace cuatro años, en un artículo titulado “¿Se siente mi paciente agobiado?”, Montori y sus colegas descubrieron que el 40% de los pacientes con enfermedades crónicas como asma, diabetes y trastornos neurológicos “sentían que su carga de tratamiento era insostenible”.

Cuando la carga de tratamiento es excesiva, las personas dejan de seguir las recomendaciones médicas y dicen que su calidad de vida empeora, según los investigadores. Los adultos mayores con múltiples afecciones médicas y bajo nivel de educación son especialmente vulnerables, ya que experimentan inseguridad económica y aislamiento social.

El uso cada vez más frecuente de sistemas telefónicos digitales y portales electrónicos para pacientes en los consultorios y la falta de tiempo por parte de los doctores profundizan las barreras. “Cada vez es más difícil para los pacientes acceder a doctores que puedan pasar tiempo con ellos, para ayudarlos a resolver problemas y responder sus preguntas”, dijo Montori.

Mientras tanto, los médicos rara vez preguntan a los pacientes sobre su capacidad para realizar las tareas que se les pide. “A menudo tenemos poca idea de qué tan compleja es la vida de nuestros pacientes”, escribieron médicos en un informe de 2022 sobre cómo reducir la carga de tratamiento.

Un ejemplo es lo que vivieron Jean Hartnett, de 53 años de Omaha, Nebraska, y sus ocho hermanos después que su madre de 88 años sufriera un derrame cerebral en febrero de 2021, mientras hacían compras en Walmart.

En ese momento, su madre estaba cuidando al padre de Hartnett, quien sufría de una enfermedad renal y necesitaba ayuda con las tareas diarias, como ducharse o ir al baño.

Durante el año posterior al derrame cerebral, los padres de Hartnett, ambos trabajadores agrícolas extremadamente independientes que vivían en Hubbard, Nebraska, sufrieron varios achaques y las crisis médicas se volvieron comunes.

Cuando un médico cambiaba el plan de atención de su mamá o su papá, eran necesarios nuevos medicamentos, suministros y equipos médicos, y programar nuevas sesiones de terapia ocupacional, física y del habla.

Ninguno de los padres podía quedarse solo si el otro necesitaba atención médica.

“No era inusual para mí estar llevando a uno de mis padres a su casa después del hospital o de la visita al médico y pasar una ambulancia o un familiar transportando al otro al doctor”, explicó Hartnett. “Se necesitaba muchísima coordinación”.

Hartnett se mudó a la casa de sus padres durante las últimas seis semanas de vida de su padre, cuando  los médicos decidieron que estaba demasiado débil como para someterse a diálisis. Falleció en marzo de 2022. Su madre murió meses después, en julio.

Entonces, ¿qué pueden hacer los adultos mayores y sus cuidadores y familiares para aliviar la carga de la atención médica?

Para empezar, es importante sincerarse  con el médico si el plan de tratamiento que recomienda no resulta factible, y explicarle por qué, dijo Elizabeth Rogers, profesora asistente de medicina interna en la Escuela de Medicina de la Universidad de Minnesota.

Recomendó preguntar sobre cuáles intervenciones serían las más importantes para mantenerse saludable y cuáles podrían ser prescindibles.

Los médicos pueden ajustar los planes, suspender los medicamentos que no producen beneficios significativos y programar visitas virtuales, en caso de que las personas puedan manejar la tecnología necesaria (muchos adultos mayores no pueden).

Pregunte también si un asistente de pacientes (también llamados navegadores) puede ayudarle a programar varias citas y exámenes en el mismo día, para minimizar la carga de ir y venir de los centros médicos. Estos profesionales también pueden ayudarlo a conectarse con recursos comunitarios, como servicios de transporte. (La mayoría de los centros médicos tienen personal de este tipo, pero los consultorios médicos no).

Si no entiende cómo hacer lo que su médico pide, pregunte: ¿Qué implicaría esto de mi parte? ¿Cuánto tiempo llevaría? ¿Qué necesitaré? Y pida materiales escritos, como guías de autocontrol del asma o la diabetes, que puedan ayudarle a comprender mejor los requisitos.

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

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This story can be republished for free (details).