KFF Health News' 'What the Health?': Trump Puts Obamacare Repeal Back on Agenda

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Julie Rovner KFF Health News @jrovner Read Julie's stories. 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.

Former president and current 2024 Republican front-runner Donald Trump is aiming to put a repeal of the Affordable Care Act back on the political agenda, much to the delight of Democrats, who point to the health law’s growing popularity.

Meanwhile, in Texas, the all-Republican state Supreme Court this week took up a lawsuit filed by more than two dozen women who said their lives were endangered when they experienced pregnancy complications due to the vague wording of the state’s near-total abortion ban.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of Johns Hopkins University and Politico Magazine, Victoria Knight of Axios, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Joanne Kenen Johns Hopkins Bloomberg School of Public Health and Politico @JoanneKenen Read Joanne's stories Victoria Knight Axios @victoriaregisk Read Victoria's stories Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories

Among the takeaways from this week’s episode:

  • The FDA recently approved another promising weight loss drug, offering another option to meet the huge demand for such drugs that promise notable health benefits. But Medicare and private insurers remain wary of paying the tab for these very expensive drugs.
  • Speaking of expensive drugs, the courts are weighing in on the use of so-called copay accumulators offered by drug companies and others to reduce the cost of pricey pharmaceuticals for patients. The latest ruling called the federal government’s rules on the subject inconsistent and tied the use of copay accumulators to the availability of cheaper, generic alternatives.
  • Congress will revisit government spending in January, but that isn’t soon enough to address the end-of-the-year policy changes for some health programs, such as pending cuts to Medicare payments for doctors.
  • “This Week in Medical Misinformation” highlights a guide by the staff of Stat to help lay people decipher whether clinical study results truly represent a “breakthrough” or not.

Also this week, Rovner interviews KFF Health News’ Rachana Pradhan, who reported and wrote the latest “Bill of the Month” feature, about a woman who visited a hospital lab for basic prenatal tests and ended up owing almost $2,400. If you have an outrageous or baffling medical bill you’d like to share with us, you can do that here.

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

Julie Rovner: KFF Health News’ “Medicaid ‘Unwinding’ Makes Other Public Assistance Harder to Get,” by Katheryn Houghton, Rachana Pradhan, and Samantha Liss.

Joanne Kenen: KFF Health News’ “She Once Advised the President on Aging Issues. Now, She’s Battling Serious Disability and Depression,” by Judith Graham.  

Victoria Knight: Business Insider’s “Washington’s Secret Weapon Is a Beloved Gen Z Energy Drink With More Caffeine Than God,” by Lauren Vespoli.

Sarah Karlin-Smith: ProPublica’s “Insurance Executives Refused to Pay for the Cancer Treatment That Could Have Saved Him. This Is How They Did It,” by Maya Miller and Robin Fields.

Also mentioned in this week’s episode:

Credits

Zach Dyer Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on SpotifyApple PodcastsPocket Casts, or wherever you listen to podcasts.

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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Adultos mayores, detectives contra avisos engañosos de Medicare Advantage

Después de una ofensiva sin precedentes contra las publicidades engañosas de las aseguradoras que venden planes privados de Medicare Advantage y de medicamentos, la administración Biden espera utilizar un arma especial para asegurarse que las empresas sigan las nuevas reglas: esa arma eres tú.

Funcionarios de los Centros de Servicios de Medicare y Medicaid (CMS) le han pedido a las personas mayores y a otros miembros de la comunidad que sean detectives contra el fraude, denunciando tácticas de venta engañosas al 800-MEDICARE, la línea de información las 24 horas de la agencia.

Entre los productos sospechosos se encuentran las tarjetas postales diseñadas para que parezcan del gobierno y los anuncios de televisión con famosos que prometen prestaciones y tarifas bajas que sólo están disponibles para algunas personas en ciertos condados.

Las nuevas normas, vigentes desde el 30 de septiembre, describen lo que las aseguradoras pueden decir en anuncios y otros materiales promocionales, y durante el proceso de inscripción.

Las campañas publicitarias de las aseguradoras se lanzan cada otoño, cuando los adultos mayores pueden comprar pólizas que comienzan el 1 de enero. Las personas con cobertura tradicional de Medicare pueden añadir o cambiar un plan de medicamentos recetados o inscribirse en un plan Medicare Advantage, que combina cobertura médica y de fármacos.

Aunque los planes privados Advantage ofrecen prestaciones adicionales no disponibles en el Medicare tradicional, algunos servicios requieren autorización previa y los beneficiarios están limitados a una red de proveedores de salud que puede cambiar en cualquier momento.

Los beneficiarios de Medicare tradicional pueden acudir a cualquier proveedor. La temporada de inscripción abierta termina el 7 de diciembre.

Los planes Medicare Advantage que cruzan alguna línea no son la única razón para estar atentos a los fraudes comerciales. La información precisa del plan puede ayudar a evitar trampas en la inscripción.

Aunque, en general, las aseguradoras y los profesionales que abogan por las personas mayores han acogido con satisfacción las nuevas normas de veracidad en la publicidad, que se cumplan es el gran reto.

Esperar que los beneficiarios controlen los argumentos de venta de las aseguradoras es pedir demasiado, afirmó Semanthie Brooks, trabajadora social y defensora de los adultos mayores en el noreste de Ohio. Lleva casi dos décadas ayudando a beneficiarios de Medicare a analizar sus opciones. “No creo que los afiliados deban hacer de policías”, dijo.

Elegir un plan de Medicare Advantage puede ser abrumador. En Ohio, por ejemplo, hay 224 y 21 planes de medicamentos para elegir que entrarán en vigencia el año que viene. La elegibilidad y las prestaciones varían según los condados.

“Los CMS deberían estudiar cómo educar a las personas para que cuando oigan hablar de las servicios en televisión, entiendan que se trata de un anuncio promocional y no necesariamente de una prestación que podrían utilizar”, señaló Brooks. “Si no se dan cuenta de que estos anuncios pueden ser fraudulentos, entonces no sabrán que deben denunciarlos”.

La agencia confía en los beneficiarios para ayudar a mejorar los servicios, declaró por escrito a KFF Health News Meena Seshamani, directora de Medicare en los CMS. “Las voces de las personas a las que servimos hacen que nuestros programas sean más fuertes”, dijo.

Las quejas de los beneficiarios motivaron la intervención del gobierno. “Es por eso que, después de escuchar a nuestra comunidad, tomamos nuevas medidas para proteger a las personas con Medicare del marketing confuso y potencialmente engañoso”, agregó.

Aunque alrededor de 31 millones de los 65 millones de personas con Medicare están inscritas en Medicare Advantage, esta gran cantidad de personas podría no ser suficiente para controlar el tsunami de publicidad en la televisión, la radio, Internet y el papel que llega a los buzones.

El año pasado hubo más de 9,500 anuncios diarios durante el período de comercialización de planes de nueve semanas, según un análisis de KFF. Más del 94% de los anuncios televisivos estaban patrocinados por aseguradoras, brokers y empresas de marketing, frente a sólo un 3% del gobierno federal que promocionaba el programa tradicional de Medicare.

Según los investigadores, durante una hora del noticiero de Cleveland en diciembre, los telespectadores vieron nueve anuncios de Advantage.

Por primera vez, los CMS pidieron este año a las compañías de seguros y de marketing que les presentaran sus anuncios televisivos de Medicare Advantage, para asegurarse de que cumplían las nuevas normas.

Entre el 1 de mayo y el 30 de septiembre, los funcionarios revisaron 1,700 anuncios, y rechazaron más de 300 por considerarlos engañosos, según informes de la prensa. También se rechazaron otros 192 anuncios, de un total de 250, de empresas de marketing. La agencia no reveló si se analizaron otros medios.

Las nuevas restricciones se aplican también a los vendedores, ya sea en un anuncio, en material escrito o en una conversación cara a cara.

Según una norma nueva e importante, el vendedor debe explicar en qué se diferencia el nuevo plan del actual seguro médico de una persona antes de que se pueda realizar cualquier cambio.

Esa información podría haber ayudado a una mujer de Indiana que perdió la cobertura de sus medicamentos recetados, que le cuestan más de $2,000 al mes, indicó Shawn Swindell, supervisor de voluntarios del Programa Estatal de Asistencia sobre Seguros de Salud para 12 condados del centro-este del estado.

Un representante inscribió a la mujer en un plan de Medicare Advantage sin decirle que no incluía cobertura de medicamentos porque el plan está dirigido a veteranos que pueden obtener esa cobertura a través del Departamento de Asuntos de Veteranos en lugar de Medicare. La mujer no es veterana, añadió Swindell.

En Nueva York, el Centro de Derechos de Medicare recibió una queja de un hombre que solo quería inscribirse para obtener una tarjeta de débito prepagada para comprar productos farmacéuticos no recetados, contó Emily Whicheloe, directora de educación de la organización. No sabía que el vendedor lo inscribiría en un nuevo plan de Medicare Advantage que ofrecía la tarjeta. Whicheloe reparó el error pidiendo a los CMS que permitieran al hombre volver a su plan Advantage anterior.

Las tarjetas de débito forman parte de la vertiginosa gama de ventajas adicionales no médicas que ofrecen los planes Medicare Advantage, junto con el transporte a las citas médicas, las comidas a domicilio y el dinero para servicios públicos, comestibles e incluso artículos para mascotas. El año pasado, los planes ofrecieron un promedio de 23 prestaciones adicionales, según los CMS. Sin embargo, algunas aseguradoras han comunicado a la agencia que sólo un pequeño porcentaje de pacientes las utiliza, aunque el uso real no se reporta.

Este mes, los CMS propusieron normas adicionales sobre Advantage para 2025, incluida una que obligaría a las aseguradoras a informar a sus afiliados sobre los servicios disponibles que aún no hayan utilizado. Los recordatorios “garantizarán que la gran inversión federal de dinero de los contribuyentes en estos beneficios llegue realmente a los beneficiarios y no se utilice principalmente como una estratagema de marketing”, según señalan las autoridades en una hoja informativa.

Por lo general, los afiliados a Medicare Advantage permanecen vinculados a sus planes durante todo el año, salvo raras excepciones, como el traslado fuera del área de servicio o la quiebra del plan.

Pero hace dos años, los CMS agregaron una vía de escape: las personas pueden abandonar un plan al que se han afiliado basándose en información engañosa o inexacta, o si descubren que las prestaciones prometidas no existen o no pueden ver a sus proveedores. Esta excepción también se aplica cuando representantes del plan, sin escrúpulos, ocultan información e inscriben a personas en una póliza Advantage sin su consentimiento.

Otra nueva norma, que debería evitar que las inscripciones salgan mal, prohíbe a los planes promocionar prestaciones que no están disponibles en el lugar donde vive el potencial afiliado. Las promesas vacías se han convertido en una fuente creciente de quejas de los clientes del Programa de Información sobre Seguros de Salud para Mayores de Louisiana, según Vicki Dufrene, su directora estatal. “Iban a tener todas estas opciones y estos extras, y cuando llega el momento, no tienen ni opciones ni extras, pero el vendedor siguió adelante y les inscribió en el plan”.

Así que esperamos ver más cláusulas de exención de responsabilidad en anuncios y correos como esta carta no solicitada que un plan Aetna Medicare Advantage envió a una mujer de Nueva York: “Las características y la disponibilidad del plan pueden variar según el área de servicio”, dice una advertencia incluida en letra chica. “El formulario y/o la red de farmacias pueden cambiar en cualquier momento”, continúa, refiriéndose a la lista de medicamentos cubiertos. “Recibirá un aviso cuando sea necesario”.

Sin embargo, las normas siguen permitiendo a las aseguradoras presumir de sus calificaciones de los CMS —cinco estrellas es la máxima—, aunque estas no reflejen el rendimiento del plan mencionado en un anuncio o mostrado en el sitio web del gobierno para encontrar planes de Medicare.

“No hay forma de que los consumidores sepan con qué exactitud la calificación por estrellas refleja el diseño específico del plan, la red de proveedores concreta o cualquier otro aspecto específico de una póliza en su condado”, afirmó Laura Skopec, investigadora del Urban Institute y coautora de un estudio reciente sobre el sistema de calificación.

Y como los datos de las calificaciones pueden tener más de un año de antigüedad y los planes cambian cada año, las publicadas este año no se aplican a los planes de 2024 que ni siquiera han empezado, a pesar de las afirmaciones en sentido contrario.

Cómo detectar argumentos de venta engañosos de Medicare Advantage y planes de medicamentos (y qué hacer al respecto)

Los Centros de Servicios de Medicare y Medicaid tienen nuevas reglas que toman medidas enérgicas contra la publicidad y promoción engañosas o inexactas de Medicare Advantage y los planes de medicamentos. Hay que tener cuidado con los avisos que:

  • Los beneficios sugeridos están disponibles para todos los que se registren cuando solo algunas personas califican.
  • Menciona los beneficios que no están disponibles en el área de servicio donde se anuncian.
  • Utiliza superlativos como “la mayoría” o “mejor”, a menos que estos datos estén respaldados por datos del año actual o anterior.
  • Reclama ahorros poco realistas, como $9,600 en ahorros en medicamentos, que se aplican sólo en circunstancias excepcionales.
  • Habla de cobertura sin nombrar el plan.
  • Muestra el nombre oficial de Medicare, la tarjeta de membresía o el logotipo sin la aprobación de los CMS.
  • Contacta al miembro de un plan Advantage o de medicamentos sobre otros productos sin autorización.
  • Finge ser del programa Medicare administrado por el gobierno, que no realiza llamadas de ventas no solicitadas a los beneficiarios.

Si crees que una empresa está violando las nuevas reglas, comuníquese con CMS al 800-MEDICARE, su línea directa de información las 24 horas. Si cree que eligió un plan basándose en información inexacta y desea cambiar de plan, comuníquese con CMS o con su Programa estatal de asistencia sobre seguros médicos: http://www.shiphelp.org o al 877-839-2675. Para obtener más información sobre cómo protegerse de las infracciones de marketing, visite http://www.shiphelp.org/about-medicare/blog/protecting-yourself-marketing-violations.

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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El altísimo costo de tener una enfermedad autoinmune en Estados Unidos

Después de años de debilitantes ataques de fatiga, Beth VanOrden finalmente pensó que había encontrado la respuesta a sus problemas cuando en 2016 le diagnosticaron la enfermedad de Hashimoto, un trastorno autoinmune.

Para VanOrden, como para millones de estadounidenses, esa es la causa más común de hipotiroidismo, una afección en la que la tiroides, una glándula con forma de mariposa ubicada en el cuello, no produce suficientes hormonas necesarias para que el cuerpo regule el metabolismo.

No hay cura para la enfermedad de Hashimoto o el hipotiroidismo. Pero VanOrden, que vive en Atenas, Texas, comenzó a tomar levotiroxina, una hormona tiroidea sintética muy recetada, que se usa para tratar síntomas comunes, como fatiga, aumento de peso, caída del cabello y sensibilidad al frío.

A la mayoría de los pacientes les va bien con la levotiroxina y sus síntomas desaparecen. Sin embargo, para otros, como VanOrden, el fármaco no es tan eficaz.

Para la mujer, significó ir de médico en médico, de prueba en prueba y de tratamiento en tratamiento, gastando alrededor de $5,000 al año.

“Luzco y actúo como una persona bastante enérgica”, dijo VanOrden, de 38 años, explicando que sus síntomas no son visibles. “Pero hay un agujero en mi tanque de gasolina”, dijo. Y “el estrés hace que el agujero sea más grande”.

Las enfermedades autoinmunes ocurren cuando el sistema inmunológico ataca y daña por error células y tejidos sanos. Otros ejemplos comunes incluyen la artritis reumatoide, el lupus, la enfermedad celíaca y la enfermedad inflamatoria intestinal. Hay más de 80 enfermedades de este tipo, que afectan a unos 50 millones de estadounidenses, desproporcionadamente a las mujeres. En general, el costo del tratamiento de enfermedades autoinmunes en el país se estima en más de $100 mil millones al año.

A pesar de ser muy frecuentes, encontrar ayuda para muchas enfermedades autoinmunes puede resultar frustrante y costoso. Recibir un diagnóstico puede ser un obstáculo importante porque la gama de síntomas se parece mucho a la de otras afecciones y, a menudo, no existen pruebas de identificación definitivas, explicó Sam Lim, director clínico de la División de Reumatología de la Facultad de Medicina de la Universidad Emory en Atlanta.

Además, algunos pacientes sienten que tienen que luchar para que les crean, incluso el médico. Y después de un diagnóstico, gastan fortunas explorando opciones de tratamiento.

“A menudo están molestos. Los pacientes se sienten desestimados”, dijo Elizabeth McAninch, endocrinóloga y experta en tiroides de la Universidad de Stanford, sobre algunos pacientes que acuden a ella en busca de ayuda.

La educación médica insuficiente y la falta de inversión en nuevas investigaciones son dos factores que dificultan la comprensión general del hipotiroidismo, según Antonio Bianco, endocrinólogo de la Universidad de Chicago y experto líder en esta afección.

Algunos pacientes se enojan cuando sus síntomas no responden a los tratamientos estándar, ya sea levotiroxina sola o en combinación con otra hormona, dijo Douglas Ross, endocrinólogo del Hospital General de Massachusetts, en Boston. “Tendremos que permanecer abiertos a la posibilidad de que nos falte algo aquí”, dijo.

Jennifer Ryan, de 42 años, dijo que ha gastado “miles de dólares de su bolsillo” buscando respuestas. Los médicos no recomendaron medicamentos con hormona tiroidea a la residente de Huntsville, Alabama, diagnosticada con Hashimoto después de años de fatiga y aumento de peso, porque sus niveles parecían normales. Recientemente cambió de médico y tiene esperanzas.

“No andas sufriendo todo el día y no tienes nada malo”, dijo Ryan.

Y las aseguradoras de salud suelen negar la cobertura de nuevos tratamientos para el hipotiroidismo, dijo Brittany Henderson, endocrinóloga y fundadora del Charleston Thyroid Center en Carolina del Sur, que atiende a pacientes de los 50 estados. “Las compañías de seguros quieren que se utilicen genéricos a pesar de que a muchos pacientes no les va bien con estos tratamientos”, dijo.

Mientras tanto, la magnitud de los problemas de tiroides de los estadounidenses se puede ver en la venta de medicamentos. La levotiroxina se encuentra entre los cinco medicamentos más recetados cada año en el país. Sin embargo, las investigaciones apuntan a una prescripción excesiva del fármaco en personas con hipotiroidismo leve.

Un estudio reciente, financiado por AbbVie (fabricante de Synthroid, una versión de marca de levotiroxina) dijo que una base de datos de reclamos médicos y farmacéuticos mostró que la prevalencia del hipotiroidismo, incluidas las formas más leves, aumentó del 9,5% de los estadounidenses en 2012 al 11,7%. en 2019.

El número de personas diagnosticadas aumentará a medida que la población envejezca, afirmó McAninch. Los disruptores endócrinos (químicos naturales o sintéticos que pueden afectar las hormonas) podrían explicar parte de ese aumento, dijo.

En su búsqueda de respuestas, los pacientes a veces se conectan a las redes sociales, donde hacen preguntas y describen sus niveles de hormona tiroidea, regímenes farmacológicos y síntomas. Algunas plataformas en línea ofrecen información que es, en el mejor de los casos, dudosa, pero en general, los medios de comunicación sociales han aumentado la comprensión de los pacientes sobre los síntomas difíciles de resolver, dijo Bianco.

También se animan unos a otros.

VanOrden, que ha estado activa en Reddit, tiene este consejo para otros pacientes: “No se rindan. Sigan siendo sus propios defensores. En algún lugar hay un médico que te escuchará”. Ha comenzado un tratamiento alternativo (medicación disecada para la tiroides, una opción no aprobada por la FDA) más una dosis baja de naltrexona, una droga para la adicción, aunque los datos son limitados. Ahora se está sintiendo mejor.

La investigación de la enfermedad tiroidea autoinmune recibe poca financiación, por lo que las causas subyacentes de la disfunción inmune no están bien estudiadas, afirmó Henderson. El establishment médico no ha reconocido plenamente a los pacientes con hipotiroidismo difíciles de tratar, pero un mayor reconocimiento de ellos y de sus síntomas ayudaría a financiar la investigación, afirmó Bianco.

“Me gustaría un reconocimiento muy claro y sólido de que estos pacientes existen”, dijo. “Estas personas son reales”.

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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Uncle Sam Wants You … to Help Stop Insurers’ Bogus Medicare Advantage Sales Tactics

After an unprecedented crackdown on misleading advertising claims by insurers selling private Medicare Advantage and drug plans, the Biden administration hopes to unleash a special weapon to make sure companies follow the new rules: you.

Officials at the Centers for Medicare & Medicaid Services are encouraging seniors and other members of the public to become fraud detectives by reporting misleading or deceptive sales tactics to 800-MEDICARE, the agency’s 24-hour information hotline. Suspects include postcards designed to look like they’re from the government and TV ads with celebrities promising benefits and low fees that are available only to some people in certain counties.

The new rules, which took effect Sept. 30, close some loopholes in existing requirements by describing what insurers can say in ads and other promotional materials as well as during the enrollment process.

Insurance companies’ advertising campaigns kick into high gear every fall, when seniors can buy policies that take effect Jan. 1. People with traditional government Medicare coverage can add or change a prescription drug plan or join a Medicare Advantage plan that combines drug and medical coverage. Although private Advantage plans offer extra benefits not available under the Medicare program, some services require prior authorization and beneficiaries are confined to a network of health care providers that can change anytime. Beneficiaries in traditional Medicare can see any provider. The open enrollment season ends Dec. 7.

Catching Medicare Advantage plans that step out of line isn’t the only reason to keep an eye out for marketing scams. Accurate plan information can help avoid enrollment traps in the first place.

Although insurers and advocates for older adults have generally welcomed the new truth-in-advertising rules, compliance is the big challenge. Expecting beneficiaries to monitor insurance company sales pitches is asking a lot, said Semanthie Brooks, a social worker and advocate for older adults in northeast Ohio. She’s been helping people with Medicare sort through their options for nearly two decades. “I don’t think Medicare beneficiaries should be the police,” she said.

Choosing a Medicare Advantage plan can be daunting. In Ohio, for example, there are 224 Advantage and 21 drug plans to choose from that take effect next year. Eligibility and benefits vary among counties across the state.

“CMS ought to be looking at how they can educate people, so that when they hear about benefits on television, they understand that this is a promotional advertisement and not necessarily a benefit that they can use,” Brooks said. “If you don’t realize that these ads may be fraudulent, then you won’t know to report them.”

The agency relies on beneficiaries to help improve services, Meena Seshamani, CMS’ Medicare director, told KFF Health News in a written statement. “The voices of the people we serve make our programs stronger,” she said. Beneficiary complaints prompted the government’s action. “That’s why, after hearing from our community, we took new critical steps to protect people with Medicare from confusing and potentially misleading marketing.”

Although about 31 million of the 65 million people with Medicare are enrolled in Medicare Advantage, even that may not be enough people to monitor the tsunami of advertising on TV, radio, the internet, and paper delivered to actual mailboxes. Last year more than 9,500 ads aired daily during the nine-week marketing period that started two weeks before enrollment opened, according to an analysis by KFF. More than 94% of the TV commercials were sponsored by health insurers, brokers, and marketing companies, compared with only 3% from the federal government touting the original Medicare program.

During just one hourlong Cleveland news program in December, researchers found, viewers were treated to nine Advantage ads.

For the first time, CMS asked insurance and marketing companies this year to submit their Medicare Advantage television ads, to make sure they complied with the expanded rules. Officials reviewed 1,700 commercials from May 1 through Sept. 30 and nixed more than 300 deemed misleading, according to news reports. An additional 192 ads out of 250 from marketing companies were also rejected. The agency would not disclose the total number of TV commercials reviewed and rejected this year or whether ads from other media were scrutinized.

The new restrictions also apply to salespeople, whether their pitch is in an ad, written material, or a one-on-one conversation.

Under one important new rule, the salesperson must explain how the new plan is different from a person’s current health insurance before any changes can be made.

That information could have helped an Indiana woman who lost coverage for her prescription drugs, which cost more than $2,000 a month, said Shawn Swindell, the State Health Insurance Assistance Program supervisor of volunteers for 12 counties in east-central Indiana. A plan representative enrolled the woman in a Medicare Advantage plan without telling her it didn’t include drug coverage because the plan is geared toward veterans who can get drug coverage through the Department of Veterans Affairs instead of Medicare. The woman is not a veteran, Swindell said.

In New York, the Medicare Rights Center received a complaint from a man who had wanted to sign up just for a prepaid debit card to purchase nonprescription pharmacy items, said the group’s director of education, Emily Whicheloe. He didn’t know the salesperson would enroll him in a new Medicare Advantage plan that offered the card. Whicheloe undid the mistake by asking CMS to allow the man to return to his previous Advantage plan.

Debit cards are among a dizzying array of extra nonmedical perks offered by Medicare Advantage plans, along with transportation to medical appointments, home-delivered meals, and money for utilities, groceries, and even pet supplies. Last year, plans offered an average of 23 extra benefits, according to CMS. But some insurers have told the agency only a small percentage of patients use them, although actual usage is not reportable.

This month, CMS proposed additional Advantage rules for 2025, including one that would require insurers to tell their members about available services they haven’t used yet. Reminders will “ensure the large federal investment of taxpayer dollars in these benefits is actually making its way to beneficiaries and are not primarily used as a marketing ploy,” officials said in a fact sheet.

Medicare Advantage members are usually locked into their plans for the year, with rare exceptions, including if they move out of the service area or the plan goes out of business. But two years ago, CMS added an escape hatch: People can leave a plan they joined based on misleading or inaccurate information, or if they discovered promised benefits didn’t exist or they couldn’t see their providers. This exception also applies when unscrupulous plan representatives withhold information and enroll people in an Advantage policy without their consent.

Another new rule that should prevent enrollments from going awry prohibits plans from touting benefits that are not available where the prospective member lives. Empty promises have become an increasing source of complaints from clients of Louisiana’s Senior Health Insurance Information Program, said its state director, Vicki Dufrene. “They were going to get all these bells and whistles, and when it comes down to it, they don’t get all the bells and whistles, but the salesperson went ahead and enrolled them in the plan.”

So expect to see more disclaimers in advertisements and mailings like this unsolicited letter an Aetna Medicare Advantage plan sent to a New York City woman: “Plan features and availability may vary by service area,” reads one warning packed into a half-page of fine print. “The formulary and/or pharmacy network may change at any time,” it continues, referring to the list of covered drugs. “You will receive notice when necessary.”

However, the rules still allow insurers to boast about their ratings from CMS — five stars is the top grade — even though the ratings do not reflect the performance of the specific plan mentioned in an ad or displayed on the government’s Medicare plan finder website. “There is no way for consumers to know how accurately the star rating reflects the specific plan design, specific provider network, or any other specifics of a particular plan in their county,” said Laura Skopec, a senior researcher at the Urban Institute who recently co-authored a study on the rating system.

And because ratings data can be more than a year old and plans change annually, ratings published this year don’t apply to 2024 plans that haven’t even begun yet — despite claims to the contrary.

How to spot misleading Medicare Advantage and drug plan sales pitches (and what to do about it)

The Centers for Medicare & Medicaid Services has new rules cracking down on misleading or inaccurate advertising and promotion of Medicare Advantage and drug plans. Watch out for pitches that:

  • Suggest benefits are available to all who sign up when only some individuals qualify.
  • Mention benefits that are not available in the service area where they are advertised (unless unavoidable because the media outlet covers multiple service areas).
  • Use superlatives like “most” or “best” unless claims are backed up by data from the current or prior year.
  • Claim unrealistic savings, such as $9,600 in drug savings, which apply only in rare circumstances.
  • Market coverage without naming the plan.
  • Display the official Medicare name, membership card, or logo without CMS approval.
  • Contact you if you’re an Advantage or drug plan member and you told that plan not to notify you about other health insurance products.
  • Pretend to be from the government-run Medicare program, which does not make unsolicited sales calls to beneficiaries.

If you think a company is violating the new rules, contact CMS at 800-MEDICARE, its 24-hour information hotline. If you believe you chose a plan based on inaccurate information and want to change plans, contact CMS or your State Health Insurance Assistance Program: www.shiphelp.org or 877-839-2675. For more information about protecting yourself from marketing violations, go to www.shiphelp.org/about-medicare/blog/protecting-yourself-marketing-violations.

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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Medicare Advantage Increasingly Popular With Seniors — But Not Hospitals and Doctors

A hospital system in Georgia. Two medical groups in San Diego. Another in Louisville, Kentucky, and nearly one-third of Nebraska hospitals. Across the country, health care providers are refusing to accept some Medicare Advantage plans — even as the coverage offered by commercial insurers increasingly displaces the traditional government program for seniors and people with disabilities.

As of this year, commercial insurers have enticed just over half of all Medicare beneficiaries — or nearly 31 million people — to sign up for their plans instead of traditional Medicare. The plans typically include drug coverage as well as extras like vision and dental benefits, many at low or even zero additional monthly premiums compared with traditional Medicare.

But even as enrollment soars, so too has friction between insurers and the doctors and hospitals they pay to care for beneficiaries. Increasingly, according to experts who watch insurance markets, hospital and medical groups are bristling at payment rates Medicare Advantage plans impose and at what they say are onerous requirements for preapproval to deliver care and too many after-the-fact denials of claims.

The insurers say they’re just trying to control costs and avoid inappropriate care. The disputes are drawing more attention now, during the annual open enrollment period for Medicare, which runs until Dec. 7.

Stuck in the middle are patients. People whose preferred doctors or hospitals refuse their coverage may have to switch Medicare Advantage plans or revert to the traditional program, although it can be difficult or even impossible when switching back to obtain what is called a “Medigap” policy, which covers some of the traditional plan’s cost-sharing requirements.

For example, more than 30,000 San Diego-area residents are looking for new doctors after two large medical groups affiliated with Scripps Health said they would no longer contract with Medicare Advantage insurers.

“The insurance companies running the Medicare Advantage plans are pushing physicians and hospitals to the edge,” said Chip Kahn, president and CEO of the Federation of American Hospitals, which represents the for-profit hospital sector.

The insurance industry’s lobbying arm, AHIP, said in a February letter to the Centers for Medicare & Medicaid Services that prior approvals and other similar reviews protect patients by reducing “inappropriate care by catching unsafe or low-value care, or care not consistent with the latest clinical evidence.”

AHIP spokesperson David Allen said in an email that Medicare Advantage plans are growing in enrollment because people like them, citing surveys conducted by an AHIP-backed coalition.

The vast majority, he wrote, said they were satisfied with their plans and the access to care they provide.

The disputes so far don’t appear to center on any particular insurer, region, or medical provider, although both UnitedHealthcare and Humana Inc. — the two largest Medicare Advantage insurers — are among those that have had contracts canceled.

Baptist Health in Louisville, Kentucky, said in a statement that all nine of its hospitals, along with its clinics and physician groups, would cut ties with Advantage plans offered by UnitedHealthcare and Wellcare Health Plans Inc. beginning in January unless they reach an agreement.

“Many Medicare Advantage plans routinely deny or delay approval or payment for medical care recommended by a patient’s physician,” Baptist Health said in its statement.

The system’s medical group, with nearly 1,500 physicians and other providers, left Humana’s network in September.

In a similar move, Brunswick, Georgia-based Southeast Georgia Health System, which includes two hospitals, two nursing homes, and a physician network, warned this fall that it would end its contract with Centene Corp.’s Wellcare Medicare Advantage plans in December, citing what it said was years of “inappropriate payment of claims and unreasonable denials.”

In some cases, health systems’ threats to abandon Advantage plans — as well as insurers’ threats not to include providers in their networks — are negotiating tactics, intended as leverage to win concessions on payment rates or other issues. And some have been resolved. Ohio’s Adena Regional Medical Center, for example, said in September it would drop Medicare Advantage plans offered by Elevance Health, formerly known as Anthem Inc., but reinstated them following additional negotiations.

Still, some hospital and policy experts say the conflicts may be the beginning of a trend.

“This seems different,” said David Lipschutz, associate director and senior policy attorney at the Center for Medicare Advocacy, who said hospitals and doctors are becoming “much more vocal” about their frustration with some cost-control efforts by Medicare Advantage insurers.

“There have been serious problems with payment suspensions and reviews that annoy the providers. I would not be surprised if we start to see more of this pushback” as the Medicare market becomes more concentrated among a handful of insurers, said Don Berwick, president emeritus and senior fellow at the Institute for Healthcare Improvement and a former CMS administrator.

While availability varies from county to county, Medicare beneficiaries can choose on average among 43 plans, according to KFF. UnitedHealthcare and Humana account for about half of the nationwide enrollment in Advantage plans.

Studies show that Medicare Advantage costs taxpayers more per beneficiary than the traditional program. But the plans enjoy the backing of many lawmakers, especially Republicans, because of their popularity.

The Health and Human Services Department’s inspector general reported last year that some Advantage plans have denied coverage for care that should have been provided under Medicare’s rules.

The report examined prior authorization requests — a requirement to seek insurers’ OK before certain treatments, procedures, or hospital stays — and claims denials, where insurers refuse to pay for all or part of care that’s already been performed.

Lawmakers have recently demanded additional information from Advantage insurers about the factors they use to make such determinations.

CMS proposed a rule this month to cap commissions for brokers who sell Medicare Advantage plans and require more detail on how the plans’ prior approval programs affect certain low-income enrollees and people with disabilities.

Lipschutz said the HHS inspector general’s study may have encouraged hospitals and doctors to be more outspoken.

The inspector general’s office found that 13% of the denied requests for treatment it reviewed and 18% of denied claims were for care that should have been covered. Responding in part to that report, the Biden administration issued a rule set to take effect in January that requires Medicare Advantage plans to provide “the same medically necessary care” as the traditional program. Every Advantage insurer must also annually review its own policies to make sure they match those in the traditional program.

The American Hospital Association, while lauding the administration’s action, questioned whether it would be enough. In a letter sent last month to CMS, the hospital lobbying group said its members “have heard from some [insurers] that they either do not plan to make any changes to their protocols” or “have made changes to their denial letter terminology or procedures in a way that appears to circumvent the intent of the new rules.” The letter urged “rigorous oversight” by CMS.

Allen, the AHIP spokesperson, did not respond to a request to comment on the AHA letter.

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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Back Pain? Bum Knee? Be Prepared to Wait for a Physical Therapist

At no point along his three-year path to earning a degree in physical therapy has Matthew Lee worried about getting a job.

Being able to make a living off that degree? That’s a different question — and the answer is affecting the supply of physical therapists across the nation: The cost of getting trained is out of proportion to the pay.

“There’s definitely a shortage of PTs. The jobs are there,” said Lee, a student at California State University-Sacramento who is on track to receive his degree in May. “But you may be starting out at $80,000 while carrying up to $200,000 in student debt. It’s a lot to consider.”

As many patients seeking an appointment can attest, the nationwide shortage of PTs is real. According to survey data collected by the American Physical Therapy Association, the job vacancy rate for therapists in outpatient settings last year was 17%.

Wait times are generally long across the nation, as patients tell of waiting weeks or even months for appointments while dealing with ongoing pain or post-surgical rehab. But the crunch is particularly acute in rural areas and places with a high cost of living, like California, which has a lower ratio of therapists to residents — just 57 per 100,000, compared with the national ratio of 72 per 100,000, according to the association.

The reasons are multifold. The industry hasn’t recovered from the mass defection of physical therapists who fled as practices closed during the pandemic. In 2021 alone, more than 22,000 PTs — almost a tenth of the workforce — left their jobs, according to a report by the health data analytics firm Definitive Healthcare.

And just as baby boomers age into a period of heavy use of physical therapy, and covid-delayed procedures like knee and hip replacements are finally scheduled, the economics of physical therapy are shifting. Medicare, whose members make up a significant percentage of many PT practices’ clients, has cut reimbursement rates for four years straight, and the encroachment of private equity firms — with their bottom-line orientation — means many practices aren’t staffing adequately.

According to APTA, 10 companies, including publicly held and private equity-backed firms, now control 20% of the physical therapy market. “What used to be small practices are often being bought up by larger corporate entities, and those corporate entities push productivity and become less satisfying places to work,” said James Gordon, chair of the Division of Biokinesiology and Physical Therapy at the University of Southern California.

There’s a shortage of physical therapists in all settings, including hospitals, clinics, and nursing homes, and it’s likely to continue for the foreseeable future, said Justin Moore, chief executive of the physical therapy association. “Not only do we have to catch up on those shortages, but there are great indicators of increasing demand for physical therapy,” he said.

The association is trying to reduce turnover among therapists, and is lobbying Congress to stop cutting Medicare reimbursement rates. The Centers for Medicare & Medicaid Services plans a 3.4% reduction for 2024 to a key metric that governs pay for physical therapy and other health care services. According to the association, that would bring the cuts to a total of 9% over four years.

Several universities, meanwhile, have ramped up their programs — some by offering virtual classes, a new approach for such a hands-on field — to boost the number of graduates in the coming years.

“But programs can’t just grow overnight,” said Sharon Gorman, interim chair of the physical therapy program at Oakland-based Samuel Merritt University, which focuses on training health care professionals. “Our doctoral accreditation process is very thorough. I have to prove I have the space, the equipment, the clinical sites, the faculty to show that I’m not just trying to take in more tuition dollars.”

All of this also comes at a time when the cost of obtaining a physical therapy doctorate, which typically takes three years of graduate work and is required to practice, is skyrocketing. Student debt has become a major issue, and salaries often aren’t enough to keep therapists in the field.

According to the APTA’s most recent published data, median annual wages range from $88,000 to $101,500. The association said wages either met or fell behind the rate of inflation between 2016 and 2021 in most regions.

A project underway at the University of Iowa aims to give PT students more transparency about tuition and other costs across programs. According to an association report from 2020, at least 80% of recent physical therapy graduates carried educational debt averaging roughly $142,000.

Gordon said USC, in Los Angeles’ urban core, has three PT clinics and 66 therapists on campus, several of whom graduated from the school’s program. “But even with that, it’s a challenge,” he said. “It’s not just hard to find people, but people don’t stay, and the most obvious reason is that they don’t get paid enough relative to the cost of living in this area.”

Fewer therapists plus growing demand equals long waits. When Susan Jones, a Davis, California, resident, experienced pain in her back and neck after slipping on a wet floor in early 2020, she went to her doctor and was referred for physical therapy. About two months later, she said, she finally got an appointment at an outpatient clinic.

“It was almost like the referral got lost. I was going back and forth, asking, ‘What’s going on?’” said Jones, 57. Once scheduled, her first appointment felt rushed, she said, with the therapist saying he could not identify an issue despite her ongoing pain. After one more session, Jones paid out-of-pocket to see a chiropractor. She said she’d be hesitant to try for a physical therapy referral in the future, in part because of the wait.

Universities and PT programs graduate about 12,000 therapists a year, Moore said, and representatives of several schools told KFF Health News they’re studying whether and how to expand. In 2018, USC added a hybrid model in which students learn mostly online, then travel to campus twice a semester for about a week at a time for hands-on instruction and practice.

That bumped USC’s capacity from 100 students a year to 150, and Gordon said many of the hybrid students’ professional skills are indistinguishable from those of students on campus full time.

Natalia Barajas received her PT doctorate from USC last year and was recently hired at a clinic in nearby Norwalk, with a salary of $95,000, a signing bonus, and the opportunity to earn more in incentives.

She’s also managing a lot of debt. Three years of tuition for the USC physical therapy program comes to more than $211,000, and Barajas said she owes $170,000 in student loans.

“If it were about money alone, I probably would have shifted to something else a while ago,” Barajas said. “I’m OK with my salary. I chose to do this. But it might not be the perfect situation for everybody.”

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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How the Thyroid Gland Mystifies Doctors and Patients

About 25 years ago, Andy Miller learned he had hypothyroidism, a condition that afflicts millions of other Americans. Curious about how this condition was affecting others, the KFF Health News journalist interviewed endocrinologists who treat hypothyroidism and several patients who live with it. Their stories revealed how mystifying thyroid and autoimmune conditions can be.

This illustrated report has been adapted from a KFF Health News article, “Among Hurdles for Autoimmune Disease Patients: Diagnosis, Costs, Inattentive Care” by Andy Miller.

Illustrations by Oona Tempest.

Creative direction and editing by Hannah Norman, with additional editing by Sabriya Rice.

Copy editing by Terry Byrne.

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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What Would a DeSantis Presidency Look Like for Health Care?

On the presidential campaign trail, Republican Ron DeSantis touts himself as a champion of medical freedom, outlawing vaccine mandates and protecting doctors who refuse to provide certain medical treatments on moral grounds.

His record as Florida’s governor suggests a presidency that would prioritize individual freedom over public health, but his push for such freedoms ends when it comes to abortion and treatment for gender dysphoria. In Florida, he has pushed restrictions on those medical services.

Critics contend those were the wrong priorities in a state where 7.4% of children had no medical insurance as of 2022. Since then more than 250,000 Florida children have lost the health insurance they had through Medicaid.

The DeSantis campaign did not return multiple requests for comment on the governor’s health policy campaign plans.

As he sets his sights on the White House, here’s a recap of his health care record:

Public Health

At campaign stops, DeSantis talks often of his handling of the covid-19 pandemic even as the issue has largely disappeared from the public’s radar.

DeSantis initially followed federal health guidance and ordered a statewide lockdown in April 2020. But the governor quickly changed course, beginning a phased reopening of Florida just one month later. Around then, Florida’s then-surgeon general, Scott Rivkees, was hustled out of a news conference and hardly seen for months after he said residents might have to socially distance themselves from others and wear masks until vaccines became available.

Florida was one of four states that reopened schools in August 2020, and DeSantis banned cities and counties from enforcing mask mandates. He later suspended local pandemic restrictions and outlawed vaccine passports.

DeSantis did initially champion covid-19 vaccines, especially for Florida’s older adults. That changed in 2021, when DeSantis appointed Joseph Ladapo as his next surgeon general. A Harvard-trained doctor, Ladapo had gained prominence as a skeptic of the scientific consensus on how to treat and prevent the spread of the virus.

Subsequently, Florida was the only state not to preorder covid-19 vaccine doses for children under 5 when those became available in 2022. At news conferences, DeSantis publicized covid-19 treatments such as monoclonal antibodies but didn’t urge residents to get vaccinated.

Later, DeSantis’ health department recommended against vaccines for young men and against people under 65 getting updated vaccines, guidance that contradicted that of the U.S. Centers for Disease Control and Prevention.

DeSantis as president would likely downplay the importance of the CDC, which is an advisory body, and instead might require states to invest more in public health infrastructure, said Jay Wolfson, a public health professor at the University of South Florida.

The pandemic exposed that Florida’s public health system had been underfunded and largely ignored by successive administrations, including DeSantis’, Wolfson said. Having led Florida through hurricanes Ian and Idalia, DeSantis may want a similar response to public health emergencies like covid-19, where states take the lead and the federal government’s role is to support them, he said.

Abortion

DeSantis has said he supports a “culture of life.” As governor, he’s signed the most anti-abortion modern-day legislation Florida has seen. But he has faced pushback from the anti-abortion crowd for his initial reluctance to endorse a federal ban and from other anti-abortion Republicans for signing a ban on most abortions after six weeks of pregnancy, which some have said is too extreme.

That bill, which DeSantis signed this year, has exceptions for rape, incest, and human trafficking up to 15 weeks into the pregnancy if the woman seeking an abortion has documentation proving her circumstances.

That bill has not taken effect, because of a pending court challenge over Florida’s current 15-week abortion ban, which DeSantis signed in 2022. That law does not have any exceptions for victims of rape or incest but does have exceptions for the health of the mother.

Opponents of Florida’s abortion restrictions say the threat of a felony arrest for violating the law makes it difficult for a doctor to provide an abortion they think is necessary.

After months of declining to directly answer whether he would support a nationwide abortion ban, DeSantis said during the second GOP presidential primary debate that he would sign a 15-week federal abortion ban.

The issue remains a difficult one for Republicans. A recent successful ballot measure in Ohio suggests that preserving abortion rights remains an effective issue for Democrats to drive turnout.

With Florida’s ban held up in legal challenges, the state continues to be one of the biggest providers of abortions in the Southeast. About 65,000 abortions have been recorded by the Florida Agency for Health Care Administration so far this year. Almost 6,000 were for out-of-state residents.

Medicaid

Even as states long opposed to Medicaid expansion such as South Dakota and North Carolina have recently reversed course, Florida remains in a group of 10 holdout states that refuse to expand the program as part of the Affordable Care Act.

The act provides extra federal funding to states that increase eligibility. In Florida’s case, doing so would help an estimated 514,000 residents gain health coverage, according to an October analysis by the Urban Institute.

Florida has had one of the highest child uninsured rates for many years, higher than poorer states such as neighboring Alabama, another state that has refused to expand Medicaid, said Joan Alker, executive director at the Georgetown University Center for Children and Families.

Almost 823,000 Floridians have lost Medicaid coverage since April, when states could remove recipients for the first time since the pandemic began. That includes at least 250,000 children. It’s unknown how many of those children are now covered through their parents’ insurance. But despite the state’s reassurance that kids who lose coverage would be referred to child health insurance programs like KidCare, Democratic state and federal lawmakers point to enrollment in the state program rising by only 25,000 children.

Florida is also the only state that has not taken advantage of federal waivers that would enable the state to keep more people on Medicaid while it transitions back to normal Medicaid operation.

Wolfson said Florida’s position reflects DeSantis’ belief that the program has become “an expensive and overextended giveaway” that discourages people from working hard to better their lives.

“We’re not going to be like California and have massive numbers of people on government programs without work requirements,” DeSantis said during the second Republican debate when asked why Florida’s uninsured rate — 11.2% in 2022, according to U.S Census Bureau estimates — was higher than the national average, which was 8%.

DeSantis has, however, approved bills that expanded Medicaid coverage based on needs, an approach that may be more illustrative of his handling of the health insurance program should he end up in the White House.

In 2021, DeSantis signed a bill to extend postpartum Medicaid coverage to up to 12 months. This year, he approved legislation for Medicaid to cover glucose monitors and for family members who are 18 or older to be able to be trained and paid under Medicaid as home health aides for medically fragile child relatives.

DeSantis also signed a bill to make more lower-income families eligible for KidCare, a set of child health insurance programs.

Gender Dysphoria Care

Like other GOP-led states, Florida has restricted the rights of transgender minors to access treatments such as puberty blockers and hormone therapy.

Florida health officials in 2022 approved rules prohibiting minors from accessing treatment for gender dysphoria. They then in 2023 prohibited minors from accessing that treatment even in clinical trials.

This past legislative session, Florida lawmakers passed a bill codifying that rule, which DeSantis signed into law. The decision runs counter to recommendations from major medical organizations. The legislation also requires that, for adults, gender dysphoria care, which the state calls “sex-reassignment prescriptions or procedures,” can be administered only by a physician.

In 2022, DeSantis’ administration published a report that created the foundation for a rule that prohibited Medicaid from covering gender dysphoria treatments for both minors and adults. To create the report, the Florida health agency veered from its standard protocol and brought in consultants who had known views that ran counter to major medical organizations’ guidance.

A judge has since struck that Medicaid ban down, but lawyers are arguing in court that DeSantis’ administration has been willfully defying the order and has continued to implement the Medicaid ban.

Medical Freedom

Earlier this year, DeSantis declared Florida the “medical freedom” state as he signed into law protections for medical providers who turn away patients on “conscience” grounds.

The law provides similar protections for insurance companies.

Opponents of the legislation worry it will allow doctors to discriminate against LGBTQ+ people or other groups. The legislation does not allow someone to opt out of providing care because of “race, color, religion, sex, or national origin.”

Federal laws protect health care workers from having to provide abortions if doing so goes against their personal beliefs. Florida’s new law is much broader, allowing a medical professional to deny nearly any procedure if it goes against their conscience.

This article was produced in partnership with the Tampa Bay 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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From Hospital to Hospitality: Spin Doctors Brand Getting Sick as an Adventure. It’s Not.

The last time I stepped on a plane for vacation, for fun, was more than three years ago. I haven’t been able to visit California, whose coast I adore. Nor Rome, where my husband and I lived for some time.

And yet, I’m told, I’ve been on a journey. Two journeys, actually: First, a “traumatic brain injury journey,” experienced at Johns Hopkins Hospital after I banged my head and developed trouble with my balance and gait. More recently, I’ve been a traveling companion on my husband’s “cancer journey” at Memorial Sloan Kettering, in New York City.

These are two of the highest-ranked hospitals in the country. The care was excellent in both places. But neither of these journeys resembled our bike ride in Ireland or the wine-tasting trip in Sonoma a few years before.

So much of being seriously ill has been rebranded in American health care as a kind of adventure. Experts speak of stroke journeys. Hospital systems invite people on kidney transplant journeys. The language has trickled down into advertising: Take a hair loss journey or a weight loss journey (newly popular because of Wegovy and similar drugs). The heart failure journey even comes with a map.

A map? But on these journeys, you don’t get to go anywhere — except maybe the hospital or doctor’s office, which is likely, too, to have bought into the travel concept. In the past two decades, American hospitals have gotten into the business of hotel-like hospitality (illness can be fun!) rather than confine themselves to the business of disease (what a downer). And although the care might stay solid, the focus on luxurious amenities and the fancy new buildings that house them is one of the factors that have helped send costs for patients soaring that much higher, to prices well above those in other developed countries.

In this version of health care, I’m no longer a patient. I’m a client, a customer, or (worse) a guest, no matter that I didn’t choose this journey cum illness. I appreciate a little luxury and privacy as much as the next person. But, at a time when Americans’ life spans are getting shorter and 4 in 10 adults say they’ve delayed or gone without necessary care because of cost, is it worth it?

In recent years, tight budgets, staffing shortages, and burnout have hit American hospitals. At the same time, many health centers in the U.S. — including the most prestigious ones, and even some community hospitals — have morphed into seven-star hotels. New hospital buildings, such as recent projects at the University of Michigan hospital system and Valley Hospital in Paramus, New Jersey, offer all-private rooms, in many cases with couches and flat-screen TVs. A hospital might now boast about its views, high-thread-count sheets, or food provided by a Michelin-starred chef.

Those commissioning and designing these pavilions cite research showing that private rooms are better for healing, because they offer a better chance at sleep and a lower chance of infection. (Actually, the evidence is pretty murky.)

But we’re suckers for this type of thing, and the industry knows that even small comforts can make us feel better, regardless of whether we’re actually getting better. In 2008, researchers at the National Bureau of Economic Research estimated that a hospital investing in amenities would increase demand by 38%, whereas a similar investment in clinical quality would lead to only a 13% increase. More recently, hospital executives told The Boston Globe that the main reason hospitals have moved in this direction is that “people’s expectations have changed,” and it creates a “competitive advantage” that can be marketed to potential customers.

And so the Mayo Clinic now offers complimentary concierge services, which can help with recommending nearby restaurants and finding pet care. I think that’s the hospitality version of what used to be called the hospital “help desk,” whose function was merely to explain to visitors how to get to patient rooms. Cleveland Clinic, which employs a team of curators, owns one of the largest contemporary art collections in the region, and its leaders see that collection as one tool for “positively affecting patient outcomes.” Patients at Cedars-Sinai can experience its “therapeutic art collection” of Chagalls, Picassos, and Oldenburgs.

Hospital food has gotten so good that in some areas people go to their local hospital for haute cuisine rather than medical needs. And when you look at the numbers on your hospital bill, remember that all of this adds up. For the amount that American patients (or their insurers) pay for some luxury hospital journeys, they could sign up for a Virgin Galactic suborbital joy ride.

This transformation from hospital to hospitality has filled up hospital C-suites with chief experience officers, whose function is to “manage patients’ experiences throughout their healthcare journey,” as described by the publication HealthTech. The Cleveland Clinic was the first major academic medical center to add one, back in 2007; now some health systems hire for this and similar positions directly from the hospitality industry, picking people who’d previously been managers at a Ritz-Carlton or a Trump hotel.

The American Hospital Association acknowledges and defends the transformation. “These are not just ‘nice to haves,’” Nancy Foster, AHA’s vice president of quality and patient-safety policy, wrote to me in an email. “Actions hospitals can take to reduce stress and provide other psychological support can have a meaningful impact on one’s physical and behavioral health, including the ability to recover more rapidly.” But pretending that illness is an Abercrombie & Kent safari is harmful. These amenities have a cost, and they are not worth nearly what we’re paying for them as we’re billed for $100,000 joint replacements and $9,000 CT scans. Room charges in many hospitals can exceed $1,000 a night. And “facility fees” for outpatient procedures and even office visits can reach hundreds of dollars, and simply don’t exist elsewhere. A hospital’s function is to diagnose and to heal, at a price that sick people can afford. I dream of a no-frills Target- or Ikea-like hospital for care.

That doesn’t mean hospitals need to resemble prisons. Hospitals certainly have room to improve on breakfasts featuring Lilliputian plastic cups of orange juice and rubbery eggs. But to understand one of the many reasons Americans pay so much for health care, consider this: The best hospitals in Europe are utilitarian structures that most resemble urban high schools. When I got stitches for a deep cut in my forehead in Gemelli Hospital — where the pope gets health care — I sat on a gurney in a big, dark room with other patients.

Instead of providing free coffee and a piano in a soaring, art-filled marble lobby, how about focusing on the very basic things that health systems in the U.S. should do, but — in my experience — in many cases do not, like making it easier for patients to schedule appointments? Shortening the now lengthy wait times to see physicians who take insurance plans? Paying for adequate staffing on nights and weekends, so patients don’t linger in bed pointlessly for two days until social workers return on Monday? Or ending those two-day stays in emergency rooms when all inpatient beds are full? (Hotels aspire to run at full occupancy to maximize revenue; hospitals, I’d argue, should not.)

This winter, I’m planning a journey for which I look forward to some good food and art. We haven’t yet determined the exact destination, but it will not be a U.S. hospital.

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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Out for Blood? For Routine Lab Work, the Hospital Billed Her $2,400

Reesha Ahmed was on cloud nine.

It was January and Ahmed was at an OB-GYN’s office near her home in Venus, Texas, for her first prenatal checkup. After an ultrasound, getting anti-nausea medication, and discussing her pregnancy care plan, she said, a nurse made a convenient suggestion: Head to the lab just down the hall for a standard panel of tests.

The lab was inside Texas Health Hospital Mansfield, which opened in December 2020 in a Dallas-Fort Worth suburb. Ahmed, just eight weeks pregnant, said the doctor told her everything about the visit was routine. “Nothing really stood out,” Ahmed said. “And, of course, there’s just a lot of excitement, and so I really didn’t think twice about anything.”

Her blood tests checked for multiple sexually transmitted infections, her blood type, and various hormones. Within days, Ahmed began bleeding and her excitement turned to fear. A repeat ultrasound in early February showed no fetus.

“My heart kind of fell apart at that moment because I knew exactly what that meant,” she said. She would have a miscarriage.

Then the bills came.

The Patient: Reesha Ahmed, 32, has an Anthem Blue Cross and Blue Shield policy through her employer.

Medical Services: An analysis of Pap smear results and several blood tests in tandem with Ahmed’s initial prenatal visit, including complete blood count, blood type, and testing for STIs such as hepatitis B, syphilis, and HIV.

Service Provider: Ahmed got her tests at Texas Health Mansfield, a tax-exempt hospital jointly operated by Texas Health Resources, a faith-based nonprofit health system, and AdventHealth, another religious nonprofit.

Total Bill: The hospital charged $9,520.02 for the blood tests and pathology services. The insurer negotiated that down to $6,700.50 and then paid $4,310.38, leaving Ahmed with a lab bill of $2,390.12.

What Gives: Ahmed’s situation reveals how hospital-based labs often charge high prices for tests. Even when providers are in network, a patient can be on the hook for thousands of dollars for common blood tests that are far cheaper in other settings. Research shows hospitals typically charge much more than physicians’ offices or independent commercial labs for the same tests.

The situation was particularly difficult for Ahmed because she had lost the pregnancy.

“To come to terms with it mentally, emotionally, physically — dealing with the ramifications of the miscarriage — and then having to muster up the fighting strength to then start calling your insurance, and the billing department, the provider’s office, trying to fight back a bill that you don’t feel like you were correctly sent? It’s just, it’s a lot,” she said.

In Texas, the same lab tests were at least six times as expensive in a hospital as in a doctor’s office, according to research from the Health Care Cost Institute, a nonprofit that examines health spending.

The markup can be even higher depending on the test. HCCI data, based on 2019 prices, shows the median price for a complete blood count in Texas was $6.34 at an independent lab and $58.22 at a hospital. Texas Health charged Ahmed $206.69 for that test alone.

“It is convenient to get your lab done right in the same building,” said Jessica Chang, a senior researcher at HCCI, but “many patients are not thinking about how highly marked up these lab tests are.” Chang said she suspects many hospitals tack on their overhead costs when they bill insurance.

Anthem also charged Ahmed for at least four tests that most insurance plans would consider preventive care and therefore covered at no cost to patients under the Affordable Care Act’s requirements for covering preventive care, which includes aspects of prenatal care. Her EOBs, or “explanation of benefits” notices, show she paid out-of-pocket for a test identifying her Rh factor — which detects a protein on the surface of red blood cells — as well as for tests for hepatitis B, hepatitis C, and syphilis.

Asked to review Ahmed’s tests, Anthem spokesperson Emily Snooks wrote in an email to KFF Health News that the claims “were submitted as diagnostic — not preventive — and were paid according to the benefits in the member’s health plan.”

There “definitely shouldn’t be” out-of-pocket costs for those screenings, said Sabrina Corlette, co-director of Georgetown University’s Center on Health Insurance Reforms.

The Centers for Disease Control and Prevention recommends screening pregnant patients for several infectious diseases that pose major risks during pregnancy. Ina Park, a professor of family community medicine at the University of California-San Francisco and an expert on STIs, said the tests Ahmed received didn’t raise red flags from a clinical perspective. “It’s really more what the actual lab charged based on what the tests actually cost,” Park said. “This is a really exorbitant price.”

For example, Ahmed paid $71.86 in coinsurance for a hepatitis B test for which the hospital charged $418.55. The hospital charged $295.52 to screen for syphilis; her out-of-pocket cost was $50.74.

“You just wonder, is the insurance company really negotiating with this provider as aggressively as they should to keep the reimbursement to a reasonable amount?” Corlette said.

The Resolution: Ahmed refused to pay the bills and Texas Health sent the debt to collections. When she tried to get answers about the costs, she said she was bounced between the doctor’s office and the hospital billing department. Ahmed submitted a complaint to the Texas attorney general’s office, which passed it to the Texas Health and Human Services Commission. She never heard back.

According to Ahmed, a hospital representative suggested her bloodwork might have been coded incorrectly and agreed the charges “were really unusually high,” Ahmed said, but she was told there was nothing the hospital could do to change it. The hospital did not comment on the reason behind the high charge. And in a March 7 email, an AdventHealth employee told Ahmed the doctor’s office had “no control” over the hospital’s billing.

Ahmed filed an appeal with Anthem, but it was denied. The insurance company stated the claims were processed correctly under her benefits, which cover 80% of what the insurer agrees to pay for in-network lab services after she meets her deductible. Ahmed has a $1,400 deductible and a $4,600 out-of-pocket maximum for in-network providers.

“We depend on health care providers to submit accurate billing information regarding what medical care was needed and delivered,” Snooks said. Asked about reimbursements to the Texas Health lab, she added, “The claim was reimbursed based on the laboratory’s contract with the health plan.”

After a KFF Health News reporter contacted Texas Health on Oct. 9, the hospital called Ahmed on Oct. 10 and said it would zero out her bills and remove the charges from collections. Ahmed was relieved, “like a giant burden’s just been lifted off my shoulders.”

“It’s just been fighting this for 10 months now, and it’s finally gone,” she said.

Texas Health Resources and AdventHealth declined to respond to detailed questions about Ahmed’s charges and the tests she was directed to obtain.

“We are sorry Ms. Ahmed did not get clarity on her care with us. Our top priority is to provide our patients with safe, effective and medically appropriate care,” Laura Shea, a spokesperson for the hospital, said in an emailed statement.

The Takeaway: Ahmed’s problem demonstrates the pitfalls of using a hospital lab for routine testing.

For standard bloodwork “it’s really hard to argue that there’s a quality difference” between independent labs and hospitals that would warrant higher prices, Chang said. That holds true for other services, too, like imaging. “There’s nothing special about the machines that hospitals use for a CT or MRI scan. It’s the same machine.”

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Broadly, state and federal lawmakers are paying attention to this issue. Congress is considering legislation that would equalize payments for certain services regardless of whether they are provided in a hospital outpatient department or a doctor’s office, although not lab services. Hospitals have tried to fend off such a policy, known as “site-neutral payments.”

For example, the Lower Costs, More Transparency Act would require the same prices under Medicare for physician-administered drugs regardless of whether they’re given in a doctor’s office or an off-campus hospital outpatient department. That bill also would require labs to make public the prices they charge Medicare for tests. Another bill, the Bipartisan Primary Care and Health Workforce Act, would ban hospitals from charging commercial health plans some facility fees — which they use to cover operating or administrative expenses.

According to the National Conference of State Legislatures, Colorado, Connecticut, Ohio, New York, and Texas have limited providers’ ability to charge privately insured patients facility fees for certain services. Colorado, Connecticut, Maryland, and New York require health facilities to disclose facility fees to patients before providing care; Florida instituted similar requirements for free-standing emergency departments.

Patients should keep copies of itemized bills and insurance statements. While not the only evidence, those documents can help patients avoid out-of-pocket costs for recommended preventive screenings.

For now, patients can proactively avoid such extreme bills: When your doctor says you need blood tests, ask that the requisition be sent to a commercial lab like Labcorp or Quest Diagnostics that is in your network and have the tests done there. If they can’t do it electronically, ask for a paper requisition.

“Don’t always just go to the lab that your doctor recommends to you,” Corlette said.

Stephanie O’Neill reported the audio story.

Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

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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Extra Fees Drive Assisted Living Profits

Assisted living centers have become an appealing retirement option for hundreds of thousands of boomers who can no longer live independently, promising a cheerful alternative to the institutional feel of a nursing home.

But their cost is so crushingly high that most Americans can’t afford them.

These highly profitable facilities often charge $5,000 a month or more and then layer on fees at every step. Residents’ bills and price lists from a dozen facilities offer a glimpse of the charges: $12 for a blood pressure check; $50 per injection (more for insulin); $93 a month to order medications from a pharmacy not used by the facility; $315 a month for daily help with an inhaler.

The facilities charge extra to help residents get to the shower, bathroom, or dining room; to deliver meals to their rooms; to have staff check-ins for daily “reassurance” or simply to remind residents when it’s time to eat or take their medication. Some even charge for routine billing of a resident’s insurance for care.

“They say, ‘Your mother forgot one time to take her medications, and so now you’ve got to add this on, and we’re billing you for it,’” said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, a nonprofit.

About 850,000 older Americans reside in assisted living facilities, which have become one of the most lucrative branches of the long-term care industry that caters to people 65 and older. Investors, regional companies, and international real estate trusts have jumped in: Half of operators in the business of assisted living earn returns of 20% or more than it costs to run the sites, an industry survey shows. That is far higher than the money made in most other health sectors.

Rents are often rivaled or exceeded by charges for services, which are either packaged in a bundle or levied à la carte. Overall prices have been rising faster than inflation, and rent increases since the start of last year have been higher than at any previous time since at least 2007, according to the National Investment Center for Seniors Housing & Care, which provides data and other information to companies.

There are now 31,000 assisted living facilities nationwide — twice the number of skilled nursing homes. Four of every five facilities are run as for-profits. Members of racial or ethnic minority groups account for only a tenth of residents, even though they make up a quarter of the population of people 65 or older in the United States.

A public opinion survey conducted by KFF found that 83% of adults said it would be impossible or very difficult to pay $60,000 a year for an assisted living facility. Almost half of those surveyed who either lived in a long-term care residence or had a loved one who did encountered unexpected add-on fees for things they assumed were included in the price.

Assisted living is part of a broader affordability crisis in long-term care for the swelling population of older Americans. Over the past decade, the market for long-term care insurance has virtually collapsed, covering just a tiny portion of older people. Home health workers who can help people stay safely in their homes are generally poorly paid and hard to find.

And even older people who can afford an assisted living facility often find their life savings rapidly drained.

Unlike most residents of nursing homes, where care is generally paid for by Medicaid, the federal-state program for the poor and disabled, assisted living residents or their families usually must shoulder the full costs. Most centers require those who can no longer pay to move out.

The industry says its pricing structures pay for increased staffing that helps the more infirm residents and avoids saddling others with costs of services they don’t need.

Prices escalate greatly when a resident develops dementia or other serious illnesses. At one facility in California, the monthly cost of care packages for people with dementia or other cognitive issues increased from $1,325 for those needing the least amount of help to $4,625 as residents’ needs grew.

“It’s profiteering at its worst,” said Mark Bonitz, who explored multiple places in Minnesota for his mother, Elizabeth. “They have a fixed amount of rooms,” he said. “The way you make the most money is you get so many add-ons.” Last year, he moved his mother to a nonprofit center, where she lived until her death in July at age 96.

LaShuan Bethea, executive director of the National Center for Assisted Living, a trade association of owners and operators, said the industry would require financial support from the government and private lenders to bring prices down.

“Assisted living providers are ready and willing to provide more affordable options, especially for a growing elderly population,” Bethea said. “But we need the support of policymakers and other industries.” She said offering affordable assisted living “requires an entirely different business model.”

Others defend the extras as a way to appeal to the waves of boomers who are retiring. “People want choice,” said Beth Burnham Mace, a special adviser for the National Investment Center for Seniors Housing & Care. “If you price it more à la carte, you’re paying for what you actually desire and need.”

Yet residents don’t always get the heightened attention they paid for. Class-action lawsuits have accused several assisted living chains of failing to raise staffing levels to accommodate residents’ needs or of failing to fulfill billed services.

“We still receive many complaints about staffing shortages and services not being provided as promised,” said Aisha Elmquist, until recently the deputy ombudsman for long-term care in Minnesota, a state-funded advocate. “Some residents have reported to us they called 911 for things like getting in and out of bed.”

‘Can You Find Me a Money Tree?’

Florence Reiners, 94, adores living at the Waters of Excelsior, an upscale assisted living facility in the Minneapolis suburb of Excelsior. The 115-unit building has a theater, a library, a hair salon, and a spacious dining room.

“The windows, the brightness, and the people overall are very cheerful and very friendly,” Reiners, a retired nursing assistant, said. Most important, she was just a floor away from her husband, Donald, 95, a retired water department worker who served in the military after World War II and has severe dementia.

She resisted her children’s pleas to move him to a less expensive facility available to veterans.

Reiners is healthy enough to be on a floor for people who can live independently, so her rent is $3,330 plus $275 for a pendant alarm. When she needs help, she’s billed an exact amount, like a $26.67 charge for the 31 minutes an aide spent helping her to the bathroom one night.

Her husband’s specialty care at the facility cost much more: $6,150 a month on top of $3,825 in rent.

Month by month, their savings, mainly from the sale of their home, and monthly retirement income of $6,600 from Social Security and his municipal pension, dwindled. In three years, their assets and savings dropped to about $300,000 from around $550,000.

Her children warned her that she would run out of money if her health worsened. “She about cried because she doesn’t want to leave her community,” Anne Palm, one of her daughters, said.

In June, they moved Donald Reiners to the VA home across the city. His care there costs $3,900 a month, 60% less than at the Waters. But his wife is not allowed to live at the veterans’ facility.

After nearly 60 years together, she was devastated. When an admissions worker asked her if she had any questions, she answered, “Can you find me a money tree so I don’t have to move him?”

Heidi Elliott, vice president for operations at the Waters, said employees carefully review potential residents’ financial assets with them, and explain how costs can increase over time.

“Oftentimes, our senior living consultants will ask, ‘After you’ve reviewed this, Mr. Smith, how many years do you think Mom is going to be able to, to afford this?’” she said. “And sometimes we lose prospects because they’ve realized, ‘You know what? Nope, we don’t have it.’”

Potential Buyers From the Bahamas

For residents, the median annual price of assisted living has increased 31% faster than inflation, nearly doubling from 2004 to 2021, to $54,000, according to surveys by the insurance firm Genworth. Monthly fees at memory care centers, which specialize in people with dementia and other cognitive issues, can exceed $10,000 in areas where real estate is expensive or the residents’ needs are high.

Diane Lepsig, president of CarePatrol of Bellevue-Eastside, in the Seattle suburbs, which helps place people, said that she has warned those seeking advice that they should expect to pay at least $7,000 a month. “A million dollars in assets really doesn’t last that long,” she said.

Prices rose even faster during the pandemic as wages and supply costs grew. Brookdale Senior Living, one of the nation’s largest assisted living owners and operators, reported to stockholders rate increases that were higher than usual for this year. In its assisted living and memory care division, Brookdale’s revenue per occupied unit rose 9.4% in 2023 from 2022, primarily because of rent increases, financial disclosures show.

In a statement, Brookdale said it worked with prospective residents and their families to explain the pricing and care options available: “These discussions begin in the initial stages of moving in but also continue throughout the span that one lives at a community, especially as their needs change.”

Many assisted living facilities are owned by real estate investment trusts. Their shareholders expect the high returns that are typically gained from housing investments rather than the more marginal profits of the heavily regulated health care sector. Even during the pandemic, earnings remained robust, financial filings show.

Ventas, a publicly traded real estate investment trust, reported earning revenues in the third quarter of this year that were 24% above operating costs from its investments in 576 senior housing properties, which include those run by Atria Senior Living and Sunrise Senior Living.

Ventas said the prices for its services were affordable. “In markets where we operate, on average it costs residents a comparable amount to live in our communities as it does to stay in their own homes and replicate services,” said Molly McEvily, a spokesperson.

In the same period, Welltower, another large real estate investment trust, reported a 24% operating margin from its 883 senior housing properties, which include ones operated by Sunrise‌, Atria, Oakmont Management Group, and Belmont Village.‌ Welltower did not respond‌‌ to requests for comment.

The median operating margin for assisted living facilities in 2021 was 23% if they offered memory care and 20% if they didn’t, according to David Schless, chief executive of the American Seniors Housing Association, a trade group that surveys the industry each year.

Bethea said those returns could be invested back into facilities’ services, technology, and building updates. “This is partly why assisted living also enjoys high customer satisfaction rates,” she said.

Brandon Barnes, an administrator at a family business that owns three small residences in Esko, Minnesota, said he and other small operators had been approached by brokers for companies, including one based in the Bahamas. “I don’t even know how you’d run them from that far away,” he said.

Rating the Cost of a Shower, on a Point Scale

To consistently get such impressive returns, some assisted living facilities have devised sophisticated pricing methods. Each service is assigned points based on an estimate of how much it costs in extra labor, to the minute. When residents arrive, they are evaluated to see what services they need, and the facility adds up the points. The number of points determines which tier of services you require; facilities often have four or five levels of care, each with its own price.

Charles Barker, an 81-year-old retired psychiatrist with Alzheimer’s, moved into Oakmont of Pacific Beach, a memory care facility in San Diego, in November 2020. In the initial estimate, he was assigned 135 points: 5 for mealtime reminders; 12 for shaving and grooming reminders; 18 for help with clothes selection twice a day; 36 to manage medications; and 30 for the attention, prompting, and redirection he would need because of his dementia, according to a copy of his assessment provided by his daughter, Celenie Singley.

Barker’s points fell into the second-lowest of five service levels, with a charge of $2,340 on top of his $7,895 monthly rent.

Singley became distraught over safety issues that she said did not seem as important to Oakmont as its point system. She complained in a May 2021 letter to Courtney Siegel, the company’s chief executive, that she repeatedly found the doors to the facility, located on a busy street, unlocked — a lapse at memory care centers, where secured exits keep people with dementia from wandering away. “Even when it’s expensive, you really don’t know what you’re getting,” she said in an interview.

Singley, 50, moved her father to another memory care unit. Oakmont did not respond to requests for comment.

Other residents and their families brought a class-action lawsuit against Oakmont in 2017 that said the company, an assisted living and memory care provider based in Irvine, California, had not provided enough staffing to meet the needs of residents it identified through its own assessments.

Jane Burton-Whitaker, a plaintiff who moved into Oakmont of Mariner Point in Alameda, California, in 2016, paid $5,795 monthly rent and $270 a month for assistance with her urinary catheter, but sometimes the staff would empty the bag just once a day when it required multiple changes, the lawsuit said.

She paid an additional $153 a month for checks of her “fragile” skin “up to three times a day, but most days staff did not provide any skin checks,” according to the lawsuit. (Skin breakdown is a hazard for older people that can lead to bedsores and infections.) Sometimes it took the staff 45 minutes to respond to her call button, so she left the facility in 2017 out of concern she would not get attention should she have a medical emergency, the lawsuit said.

Oakmont paid $9 million in 2020 to settle the class-action suit and agreed to provide enough staffing, without admitting fault.

Similar cases have been brought against other assisted living companies. In 2021, Aegis Living, a company based in Bellevue, Washington, agreed to a $16 million settlement in a case claiming that its point system — which charged 64 cents per point per day — was “based solely on budget considerations and desired profit margins.” Aegis did not admit fault in the settlement or respond to requests for comment.

When the Money Is Gone

Jon Guckenberg’s rent for a single room in an assisted living cottage in rural Minnesota was $4,140 a month before adding in a raft of other charges.

The facility, New Perspective Cloquet, charged him $500 to reserve a spot and a $2,000 “entrance fee” before he set foot inside two years ago. Each month, he also paid $1,080 for a care plan that helped him cope with bipolar disorder and kidney problems, $750 for meals, and another $750 to make sure he took his daily medications. Cable service in his room was an extra $50 a month.

A year after moving in, Guckenberg, 83, a retired pizza parlor owner, had run through his life’s savings and was put on a state health plan for the poor.

Doug Anderson, a senior vice president at New Perspective, said in a statement that “the cost and complexity of providing care and housing to seniors has increased exponentially due to the pandemic and record-high inflation.”

In one way, Guckenberg has been luckier than most people who run out of money to pay for their care. His residential center accepts Medicaid to cover the health services he receives.

Most states have similar programs, though a resident must be frail enough to qualify for a nursing home before Medicaid will cover the health care costs in an assisted living facility. But enrollment is restricted. In 37 states, people are on waiting lists for months or years.

“We recognize the current system of having residents spend down their assets and then qualify for Medicaid in order to stay in their assisted living home is broken,” said Bethea, with the trade association. “Residents shouldn’t have to impoverish themselves in order to continue receiving assisted living care.”

Only 18% of residential care facilities agree to take Medicaid payments, which tend to be lower than what they charge self-paying clients, according to a federal survey of facilities. And even places that accept Medicaid often limit coverage to a minority of their beds.

For those with some retirement income, Medicaid isn’t free. Nancy Pilger, Guckenberg’s guardian, said that he was able to keep only about $200 of his $2,831 monthly retirement income, with the rest going to paying rent and a portion of his costs covered by the government.

In September, Guckenberg moved to a nearby assisted living building run by a nonprofit. Pilger said the price was the same. But for other residents who have not yet exhausted their assets, Guckenberg’s new home charges $12 a tray for meal delivery to the room; $50 a month to bill a person’s long-term care insurance plan; and $55 for a set of bed rails.

Even after Guckenberg had left New Perspective, however, the company had one more charge for him: a $200 late payment fee for money it said he still owed.

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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