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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Deadly Toll

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

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

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

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

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

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

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

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

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

Empire State Epicenter

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

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

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

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

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

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

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

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

Troubled Homes Deflect Suits

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

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

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

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

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

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

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

No Covid Here

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

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

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

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

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

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

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

Broadening Immunity

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

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

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

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

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

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

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

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

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

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

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

Protecting the Vulnerable

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Durante el boom de la telemedicina por la pandemia de covid-19, surgieron tiendas online que promocionaban la testosterona como remedio para las afecciones masculinas relacionadas con la edad, a pesar de las normas de la Administración de Drogas y Alimentos (FDA) emitidas hace años que restringen este tipo de publicidad sobre “testosterona baja”.

En anuncios de Google, Facebook y otros medios, los sitios web de telemedicina sobre testosterona pueden prometer una solución rápida para la “lentitud” y la libido baja en los hombres. Pero los médicos dicen que no hay pruebas de su eficacia, y que es más probable que las causas del decaimiento masculino para el que se promociona la testosterona como solución sean las afecciones crónicas, una dieta inadecuada o un estilo de vida sedentario.

De hecho, los médicos piden precaución, y la FDA recomienda que todos los suplementos de testosterona lleven la advertencia de que pueden aumentar el riesgo de infarto de miocardio y accidente cerebrovascular.

Existen razones médicas válidas para tratar a algunos hombres con testosterona. La hormona existe como medicamento desde hace décadas, y entre los pacientes actuales se encuentran hombres con hipogonadismo, algunos transexuales que la utilizan para facilitar la transición física y, en ocasiones, mujeres con síntomas menopáusicos. También ha sido utilizada durante décadas por fisicoculturistas y atletas para aumentar su fuerza.

Sin embargo, los dispensarios en internet pueden exagerar la idea de lo que a veces se denomina “menopausia masculina”, para impulsar las ventas de inyectables potenciadores de la testosterona, muy rentables, ignorando a menudo las directrices de seguridad que deberían impedir el uso de la hormona en hombres sanos. Algunos de los sitios web se dirigen a veteranos militares.

“He visto anuncios en Internet que se pasan de la raya”, afirmó Steven Nissen, médico y director académico del Heart, Vascular, and Thoracic Institute de la Clínica Cleveland. “Para el estado de ánimo y la baja energía, recetar testosterona aporta poco o ningún beneficio. Están promoviendo la testosterona para indicaciones que no figuran en la etiqueta”.

Casi todos los sitios web sobre testosterona citan un estudio publicado en 2002 por científicos de los New England Research Institutes, que descubrieron que los niveles de testosterona caen un 1% al año en hombres mayores de 40 años. Stefan Schlatt, director del Centro de Medicina Reproductiva y Andrología de la Universidad de Muenster, en Alemania, dijo que los datos que respaldaban la estadística incluían a hombres mayores con una salud deteriorada cuyos niveles disminuían a causa de enfermedades.

“Los hombres sanos no muestran ese descenso”, señaló.

Ese estudio de 2002 dio lugar a una avalancha de anuncios de “baja T” en la televisión estadounidense, anuncios que más tarde fueron prohibidos por la FDA, en una sentencia de 2015 que acusaba a la industria farmacéutica de exagerar el fenómeno de la baja T para asustar a los hombres y hacerles comprar medicamentos.

Según otro estudio, el mercado de suplementos de testosterona se situó en $1,850 millones en 2023.

El diluvio de anuncios “ha alimentado la demanda de un producto en gran parte no cubierto, lo que permite altos márgenes de beneficio”, explicó Geoffrey Joyce, director de políticas de salud en el USC Schaeffer Center for Health Policy & Economics e investigador del National Bureau of Economic Research. “El motor principal es la demanda fabricada”.

Barbara Mintzes, profesora de política farmacéutica basada en la evidencia en el Centro Charles Perkins de la Universidad de Sydney, Australia, dijo que el bajo nivel de testosterona debería considerarse realmente como un signo de una enfermedad que necesita tratamiento. Mintzes dijo que la diabetes, las cardiopatías, la hipertensión, la obesidad, la exposición a sustancias químicas tóxicas como los PFAS y el estrés pueden reducir los niveles de testosterona.

Varios de los sitios web analizados por KFF Health News se presentan como revistas de noticias y fitness, con anuncios insertados en los artículos que dirigen a los lectores hacia formularios para pedidos de terapia de sustitución de testosterona, abreviada como TRT.

Los precios de la TRT oscilan entre $120 y $135 al mes, sin incluir los análisis de sangre iniciales por correo, que cuestan unos $60. Algunos sitios prometen aumentar la libido y reducir la grasa del estómago.

Por ejemplo, los anuncios de Male Excel en Google dicen que la TRT “mejora el estado de ánimo” y “restaura la vitalidad”. Y su sitio dice que el tratamiento con testosterona proporcionará “definición muscular”, “pérdida de peso”, “impulso explosivo”, “sueño más profundo” y “energía restaurada” por encima de un enlace a una evaluación gratuita en su plataforma de telesalud en línea.

Craig Larsen, director general de la empresa, no respondió a varios intentos de establecer contacto por teléfono y correo electrónico.

Tanto Male Excel como Hone Health se encuentran entre los sitios que se dirigen a los veteranos militares. Hone Health incluía un video de un veterano que afirmaba que un hospital del Departamento de Asuntos de Veteranos le había denegado el tratamiento con testosterona.

Saad Alam, CEO y cofundador de Hone, afirmó que su empresa es “conservadora” en el mercado. Dijo que Hone receta sólo a los hombres que son hipogonadales y les hace pruebas cada 90 días, a diferencia de otras empresas que operan sitios web de telesalud a las que calificó de “cazadoras de dinero”.

“Estoy de acuerdo en que los pacientes deben ser tratados por sus médicos. Pero el sistema de salud estadounidense no está en condiciones de atender a los hombres que tienen este problema, y algunos endocrinólogos prefieren tratar a pacientes que proporcionan mayores beneficios”, dijo Hone. “Por eso la gente acude a nosotros”.

Una forma popular de TRT es el cipionato de testosterona inyectable. Según la base de datos de precios de venta de Medicare, cuesta $0,027 por miligramo. Los proveedores en internet que venden el fármaco directamente a los consumidores en viales de 200 mg/mL por un precio medio de $129 al mes están cobrando el equivalente a $1,55 por miligramo, un margen de beneficio de más de 50 veces el precio promedio de Medicare.

Según un estudio de 2022, los sitios web de telesalud de TRT crean una forma de eludir a los médicos que se niegan a recetar la hormona. En ese estudio, Justin Dubin, urólogo del Memorial Healthcare System de Florida, se hizo pasar por un consumidor. Declaró tener un nivel de testosterona por encima de lo normal y manifestó su deseo de formar una familia, a pesar de que este tipo de terapia puede frenar la producción de esperma. Sin embargo, seis de las siete clínicas online de TRT le recetaron testosterona a través de un profesional médico.

“Y eso es preocupante”, afirmó Dubin. “La telemedicina ayuda a los hombres con hipogonadismo que podrían sentirse demasiado avergonzados para hablar de disfunción eréctil. Pero tenemos que hacer un mejor trabajo para entender lo que es una atención apropiada”.

Aun así, aunque la FDA no permite la comercialización off-label (la práctica de recetar medicamentos para un uso distinto par el que han sido aprobados), sí permite las recetas off-label.

El uso off-label de reemplazo de testosterona se ha convertido en algo común entre los veteranos. Y entre los militares masculinos que recibieron TRT en 2017, menos de la mitad cumplieron con las pautas de práctica clínica, según un informe del ejército estadounidense.

Phil Palmer, veterano del Cuerpo de Marines, de 41 años, que vive en las afueras de Charleston, Carolina del Sur, dijo que paga de su bolsillo los análisis de sangre y las recetas para una forma de testosterona de implante cutáneo y para el clomifeno, un medicamento que puede ayudar a contrarrestar la infertilidad masculina que es un efecto secundario del tratamiento con testosterona.

Palmer explicó que el tratamiento es algo que le atrae tanto a él como a otros veteranos que se enfrentan a las secuelas de haber servido en las fuerzas armadas.

“El entorno en el que servimos y los niveles de estrés tienen mucho que ver”, afirmó Palmer. “Estuvimos expuestos a pozos de quema tóxicos. El ejército no te enseña a comer bien: comíamos mucha comida procesada”.

En el ámbito médico, la TRT puede acelerar la recuperación de los soldados que tienen problemas de densidad ósea o lesiones de la médula espinal, indicó Mark Peterson, profesor de medicina física y rehabilitación en la Facultad de Medicina de la Universidad de Michigan. Pero, agregó, “para los hombres en el rango normal de T, el uso de una receta en línea para comprar testosterona para reducir la grasa del estómago puede ser contraproducente”.

Quienes la utilizan también se arriesgan a tener que tomar medicación de testosterona indefinidamente, porque la TRT puede hacer que el cuerpo deje de producir su propia hormona.

Palmer, que fundó una organización sin fines de lucro que ayuda a los veteranos a recuperarse a través del ejercicio, la nutrición y la tutoría, dijo que la medicación le ha sido útil, pero insta a sus compañeros veteranos a recibir atención médica en lugar de lo que él llamó sitios web de “bro science” que promocionan la testosterona. (La “bro science” surge cuando los relatos anecdóticos de personas que practican fisicoculturismo en el gimnasio se consideran más creíbles que la investigación científica)

“No se trata de una píldora mágica”, concluyó.

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

The Alabama Supreme Court’s groundbreaking ruling last week that frozen embryos have legal rights as people has touched off a national debate about the potential fallout of the “personhood” movement. Already the University of Alabama-Birmingham has paused its in vitro fertilization program while it determines the ongoing legality of a process that has become increasingly common for those wishing to start a family. 

Meanwhile, former President Donald Trump is reportedly leaning toward endorsing a national, 16-week abortion ban. At the same time, former aides are planning a long agenda of reproductive health restrictions should Trump win a second term.

This week’s panelists are Julie Rovner of KFF Health News, Lauren Weber of The Washington Post, Rachana Pradhan of KFF Health News, and Victoria Knight of Axios.

Panelists

Victoria Knight
Axios

@victoriaregisk

Read Victoria's stories.

Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories.

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories.

Among the takeaways from this week’s episode:

• The Alabama Supreme Court’s decision on embryonic personhood could have wide-ranging implications beyond reproductive health care, with potential implications for tax deductions, child support payments, criminal law, and much more.
• Donald Trump is considering a national abortion ban at 16 weeks of gestation, according to recent reports. It is unclear whether such a ban would go far enough to please his conservative supporters, but it would be far enough to give Democrats ammunition to campaign on it. And some are looking into using a 19th-century anti-smut law, the Comstock Act, to implement a national ban under a new Trump presidency — no action from Congress necessary.
• New reporting from KFF Health News draws on many interviews with clinicians at Catholic hospitals about how the Roman Catholic Church’s directives dictate the care they may offer patients, especially in reproductive health. It also draws attention to the vast number of religiously affiliated hospitals and the fact that, for many women, a Catholic hospital may be their only option.
• Questions about President Joe Biden’s cognitive health are drawing attention to ageism in politics — as well as in American life, with fewer people taking precautions against the covid-19 virus even as it remains a serious threat to vulnerable people, especially the elderly. The mental fitness of the nation’s leaders is a valid, relevant question for many voters, though the questions are also fueled by frustration with a political system in which many offices are held by older people who have been around a long time.

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

Julie Rovner: Stat’s “New CMS Rules Will Throttle Access Researchers Need to Medicare, Medicaid Data,” by Rachel M. Werner.

Lauren Weber: The Washington Post’s “They Take Kratom to Ease Pain or Anxiety. Sometimes, Death Follows,” by David Ovalle.

Rachana Pradhan: Politico’s “Red States Hopeful for a 2nd Trump Term Prepare to Curtail Medicaid,” by Megan Messerly.

Victoria Knight: ProPublica’s “The Year After a Denied Abortion,” by Stacy Kranitz and Kavitha Surana.

Also mentioned on this week’s podcast:

• The New York Times’ “Trump Privately Expresses Support for a 16-Week Abortion Ban,” by Maggie Haberman, Jonathan Swan, and Lisa Lerer.
• The New York Times’ “Trump Allies Plan New Sweeping Abortion Restrictions,” by Lisa Lerer and Elizabeth Dias.
• Politico’s “Trump Allies Prepare to Infuse ‘Christian Nationalism’ in Second Administration,” by Alexander Ward and Heidi Przybyla.
• KFF Health News’ “The Powerful Constraints on Medical Care in Catholic Hospitals Across America,” by Rachana Pradhan and Hannah Recht.
• The Washington Post’s “Tax Records Reveal the Lucrative World of Covid Misinformation,” by Lauren Weber.
• KFF Health News’ “Do We Simply Not Care About Old People?” by Judith Graham.
• Stat’s “A Neuropsychologist Clarifies Science on Aging and Memory in Wake of Biden Special Counsel Report,” by Annalisa Merelli.

click to open the transcript

Transcript: Alabama Court Rules Embryos Are Children. What Now?

KFF Health News’ ‘What the Health?’Episode Title: Alabama Court Rules Embryos Are Children. What Now?Episode Number: 335Published: Feb. 22,2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Feb. 22, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this, so here we go. We are joined today via video conference by Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: Victoria Knight of Axios.

Victoria Knight: Hello, everyone.

Rovner: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Hi, there. Good to be back.

Rovner: Congress is out this week, but there is still tons of news, so we will get right to it. We’re going to start with abortion because there is lots of news there. The biggest is out of Alabama, where the state Supreme Court ruled last week that frozen embryos created for IVF [in vitro fertilization] are legally children and that those who destroy them can be held liable. In fact, the justices called the embryos “extrauterine children,” which, in covering this issue for 40 years, I never knew was a thing. There are lots of layers to this, but let’s start with the immediate, what it could mean to those seeking to get pregnant using IVF. We’ve already heard that the University of Alabama’s IVF clinic has ceased operations until they can figure out what this means.

Pradhan: I think that that is the immediate fallout right now. We’ve seen Alabama’s arguably flagship university saying that they are going to halt. And I believe some of the coverage that I saw, there was even a woman who was about to start a cycle or was literally about to have embryos implanted and had to encounter that extremely jarring development. Beyond the immediate, and of course, Julie, I’m sure we’ll talk about this, a bit about the personhood movement and fetal rights movement in general, but a lot of the country might say, “Oh, well, it’s Alabama. It’s only Alabama.” But as we know it, it really just takes one state, it seems like these days, to open the floodgates for things that might actually take hold much more broadly across the country. So that’s what I’m …

Rovner: It’s funny, the first big personhood push I covered was in 2011 in Mississippi, so next door to Alabama, very conservative state, where everybody assumed it was going to win. And one of the things that the opposition said is that this would ban most forms of birth control and IVF, and it got voted down in Mississippi. So here we are, what, 13 years later. But I mean, I think people don’t quite appreciate how IVF works is that doctors harvest as many eggs as they can and basically create embryos. Because for every embryo that results in a successful pregnancy, there are usually many that don’t.

And of course, couples who are trying to have babies using IVF tend to have more embryos than they might need, and, generally, those embryos are destroyed or donated to research, or, in some cases — I actually went back and looked this up — in the early 2000s there was a push, and it’s still there, there’s an adoption agency that will let you adopt out your unused embryos for someone else to carry to term. And apparently, all of this, I guess maybe not the adoption, but all the rest of this could theoretically become illegal under this Alabama Supreme Court ruling.

Pradhan: And one thing I just want to say, too, Julie, piggybacking on that point too is not just in each cycle that someone goes through with IVF — as you said, there are multiple embryos — but it often takes two people who want to start a family, it often takes multiple IVF cycles to have a successful pregnancy from that. It’s not like it’s a one-time shot, it usually takes a long time. And so you’re really talking about a lot of embryos, not just a one-and-done situation.

Rovner: And every cycle is really expensive. I know lots of people who have both successfully and unsuccessfully had babies using IVF and it’s traumatic. The drugs that are used to stimulate the extra eggs for the woman are basically rough, and it costs a lot of money, and it doesn’t always work. It seems odd to me that the pro-life movement has gotten to the point where they are stopping people who want to get pregnant and have children from getting pregnant and having children. But I guess that is the outflow of this. Lauren, you wanted to add something?

Weber: Yeah, I just wanted to chime in on that. I mean, I think we’re really going to see a lot of potential political ramifications from this. I mean, after this news came down, and just to put in context, the CDC [Centers for Disease Control and Prevention] reported in 2021 that there were 91,906 births via IVF. So that’s almost 92,000 families in 2021 alone. You have a political constituency of hundreds of thousands of parents across the U.S. that feel very strongly about this because they have received children that they paid a lot of money for and worked very hard to get. And it was interesting after this news came down — I will admit, I follow a lot of preppy Southern influencers who are very apolitical and if anything conservative, who all were very aggressively saying, “The only reason I could have my children is through this. We have to make a stand.”

I mean, these are not political people. These are people that are — you could even argue, veering into tradwife [traditional wife] territory in terms of social media. I think we’re really going to see some political ramifications from this that already are reflected in what Donald Trump has recently been reported as feeling about how abortion limits could cost him voters. I do wonder if IVF limits could really cause quite an uproar for conservative candidates. We’ll see.

Rovner: Yeah. Well, Nikki Haley’s already gotten caught up in this. She’s very pro-life. On the other hand, she had one of her children using IVF, which she’s been pretty frank about. She, of course, got asked about this yesterday and her eyes had the deer-in-the-headlights look, and she said, “Well, embryos are children,” and it’s like, “Well, then what about your extra embryos?” Which I guess nobody asked about. But yeah, I mean clearly you don’t have to be a liberal to use IVF to have babies, and I think you’re absolutely right. I want to expand this though, because the ruling was based on this 2018 constitutional amendment approved by voters in Alabama that made it state policy to, quote, “Recognize and support the sanctity of unborn life and the rights of unborn children.”

I should point out that this 2018 amendment did not directly try to create fetal personhood in the way that several states tried — and, as I mentioned, failed — in the 2010s, yet that’s how the Alabama Supreme Court interpreted it. Now, anti-abortion advocates in other states, Rachana, you mentioned this, are already trying to use this decision to apply to abortion bans and court cases there. What are the implications of declaring someone a person at the moment of fertilization? It obviously goes beyond just IVF, right?

Knight: Well, and I think you mentioned already, birth control is also the next step as well. Which basically they don’t want you to have a device that will stop a sperm from reaching an egg. And so I think that could have huge ramifications as well. So many young women across the U.S. use IUDs or other types of birth control. I know that’s one application that people are concerned about. I don’t know if there are others.

Rovner: Yeah, I’ve seen things like, if you’re pregnant, can you now drive in the HOV [high-occupancy vehicle] lane because you have another person?

Pradhan: I think that’s one of the more benign, maybe potential impacts of this. But I mean, if an embryo is a child, I mean it would affect everything from, I think, criminal laws affecting murder or any other … you could see there being criminal law impacts there. I think also, as far as child support, domestic laws, involving families, what would you — presumably maybe not everyone that I imagine who are turning to fertility treatments to start a family or to grow a family may not have a situation where there are two partners involved in that decision. I think it could affect everything, frankly. So much of our tax estate laws are impacted by whether people have children or not, and so …

Rovner: And whether those children have been born yet.

Pradhan: … tax deductions, can you claim an embryo as a dependent? I mean, it would affect everything. So I think they’re very wide, sweeping ramifications beyond the unfortunate consequences that some people might face, as Lauren said, which is that they’re just trying to start a family and now that’s being jeopardized.

Rovner: I think Georgia already has a law that you can take a tax deduction if you’re pregnant. I have been wondering, what happens to birthdays? Do they cease to mean anything? It completely turns on its head the way we think about people and humans, and I mean obviously they say, “Well, yeah, of course it is a separate being from the moment of fertilization, but that doesn’t make it a legal person.” And I think that’s what this debate is about. I did notice in Alabama — of course, what happened, what prompted this case was that some patient in a hospital got into the lab where the frozen embryos were kept and took some out and literally just dropped them on the floor and broke the vial that they were in. And the question is whether the families who belong to those embryos could sue for some kind of recourse, but it would not be considered murder because, under Alabama’s statutes, it has to be a child in utero.

And obviously frozen embryos are not yet in utero, they’re in a freezer somewhere. In that sense it might not be murder, but it could become — I mean, this is something that I think people have been thinking about and talking about obviously for many years, and you wonder if this is just the beginning of we’re going to see how far this can go, particularly in some of the more conservative states. Well, meanwhile, The New York Times reported last week that former President Trump, who’s literally been on just about every side of the abortion debate over the years, is leaning towards supporting a 16-week ban — in part, according to the story, because it’s a round number. Trump, of course, was a supporter of abortion rights until he started running for president as a Republican.

And, in winning the endorsement of skeptical anti-abortion groups in 2016, promised to appoint only anti-abortion judges and to reimpose government restrictions from previous Republican administrations. He did that and more, appointing the three Supreme Court justices who enabled the overturn of Roe v. Wade. But more recently, he’s seen the political backlash over that ruling and the number of states that have voted for abortion rights, including some fairly red states, and he’s been warning Republicans not to emphasize the issue. So why would he fail to follow his own advice now, particularly if it would animate voters in swing states? He keeps saying he’s not in the primaries anymore, that he’s basically running a general-election campaign.

Knight: I mean, I think to me, it seems like he’s clearly trying to thread the needle here. He knows some of the more social conservative of his supporters want him to do something about abortion. They want him to take a stand. And so he decided on allegedly 16 weeks, four months, which is less strict than some states. We saw Florida was 10 weeks. And then some other states …

Rovner: I think Florida is six weeks now.

Knight: Oh, sorry, six weeks. OK.

Rovner: Right. Pending a court decision.

Knight: Yeah. And then other states, in Tennessee, complete abortion ban with little room for exceptions. So 16 weeks is longer than some other states have enacted that are stricter. Roe v. Wade was about 24 weeks. So to me, it seems like he’s trying to find some middle ground to try to appease those social conservatives, but not be too strict.

Rovner: Although, I mean, one of the things that a 16-week ban would not do is protect all the women that we’ve been reading about who are with wanted pregnancies, who have things go wrong at 19 or 20 or 21 weeks, which are before viability but after 16 weeks. Well, unless they had — he does say he wants exceptions, and as we know, as we’ve talked about every week for the last six months, those exceptions, the devil is in the details and they have not been usable in a lot of states. But I’m interested in why Trump, after saying he didn’t want to wade into this, is now wading into this. Lauren, you wanted to add something?

Weber: Yeah, I wanted to echo your point because I think it’s important to note that 16 weeks is not based, it seems like, on any scientific reason. It sounds like to me, from what I understand from what’s out there, that 20 weeks is more when you can actually see if there’s heart abnormalities and other issues. So it sounds like from the reporting the Times did, was that he felt like 16 weeks was good as,  quote, “It was a round number.” So this isn’t exactly, these weak timing of bans, as I’m sure we’ve discussed with this podcast, are not necessarily tied towards scientific development of where the fetus is. So I think that’s an important thing to note.

Rovner: Yes. Rachana.

Pradhan: I mean, I think, and we’ve talked about this, but it’s the perennial danger in weighing in on any limit, and certainly a national limit, but any limit at all, is that 16 weeks, of course as the anti-abortion movement and I think many more people know now, the CDC data shows that the vast majority of abortions annually occur before that point in pregnancy. And so there are, of course, some anti-abortion groups that are trying to thread the needle and back a more middle-ground approach such as this one, 15 weeks, 16 weeks, banning it after that point. But for many, it’s certainly not anywhere good enough. And I think if you’re going to try to motivate your conservative base, I still have a lot of questions about whether they would find that acceptable. And I think it depends on how they message it, honestly.

If they say, “This is the best we can do right now and we’re trying,” that might win over some voters. But on the flip side, it’s still enough for Democrats to be able to run with it and say any national ban obviously is unacceptable to them, but it gives them enough ammunition, I think, to still say that former President Trump wants to take your rights away. And I think, as Lauren noted, genetic testing and things these days of course can happen and does happen before 16 weeks. So there might be some sense of whether there might be, your child has a lethal chromosomal disorder or something like that, that might make the pregnancy not viable. But the big scan that happens about midway through pregnancy is around 20 weeks, and that’s often when you, unfortunately, some people find out that there are things that would make it very difficult for their baby to survive so …

Rovner: Well, it seems that no matter what Trump does or says he will do if he’s elected in November, it’s clear that people close to him, including former officials, are gearing up for a second term that could go way further than even his very anti-abortion first term. According to Politico, a plan is underway for Trump to govern as a, quote, “Christian nationalist nation,” which could mean not just banning abortion, but, as Victoria pointed out, contraception, too, or many forms of contraception. A separate planning group being run out of the Heritage Foundation is also developing far-reaching plans about women’s reproductive health, including enforcement of the long-dormant 19th century Comstock Act, which we have talked about here many times before. But someone please remind us what the Comstock Act is and what it could mean.

Weber: I feel like you’re the expert on this. I feel like you should explain it.

Rovner: Oh boy. I don’t want to be the expert on the Comstock Act, but I guess I’ve become it. It’s actually my favorite tidbit about the Comstock Act is that it is not named after a congressman. It is named after basically an anti-smut crusader named Anthony Comstock in the late 1800s. And it bans the mailing of, I believe the phrase is “lewd or obscene” information, which in the late 1880s included ways to prevent pregnancy, but certainly also abortion. When the Supreme Court basically ruled that contraception was legal, which did not happen until the late 1960s — and early 1970s, actually —, the Comstock Act sort of ceased to be. And obviously then Roe v. Wade, it ceased to be.

But it is still in the books. It’s never been officially repealed, and there’s been a lot of chatter in anti-abortion movements about starting to enforce it again, which could certainly stop if nothing else, the distribution of the abortion pill in its tracks. And also it’s anything using the mail. So it could not just be the abortion pill, but anything that doctors use to perform abortions or to make surgical equipment — it seems that using Comstock, you could implement a national ban without ever having to worry about Congress doing anything. And that seems to be the goal here, is to do as much as they can without even having to involve Congress. Yes.

Pradhan: Julie, I’m waiting for the phrase “anti-smut crusader” to end up on a campaign sign or bumper sticker, honestly. I feel like we might see it. I don’t think this election has gotten nearly weird enough yet. So we still have nine months to go.

Rovner: Yeah. I’m learning way more about the Comstock Act than I really ever wanted to know. But meanwhile, Rachana, it does not take state or federal action to restrict access to reproductive health care. You have a story this week about the continuing expansion of Catholic hospitals and what that means for reproductive health care. Tell us what you found.

Pradhan: Well, yes, I would love to talk about our story. So myself and my colleague Hannah Recht, we started reporting the story, just for background, before the Supreme Court’s Dobbs decision, obviously anticipating that that is what was going to happen. And our story really digs into, based on ample interviews with clinicians, other academic experts, reading lots of documents about what the ethical and religious directives for Catholic health care services, which is what all, any health facility, a hospital, a physician’s office, anything that deems itself Catholic, has to abide by these directives for care, and they follow church teaching. Which we were talking about fertility treatments and IVF earlier actually, so in vitro fertilization is also something that the Catholic Church teaches is immoral. And so that’s actually something that they oppose, which many people may not know that.

But other things that the ERDs [ethical and religious directives] so to speak, impact are access to contraception, access to surgeries that would permanently prevent pregnancy. So for women that would be removing or cinching your fallopian tubes, but also, for men, vasectomies. And then, of course, anything that constitutes what they would call a direct abortion. And that affects everything from care for ectopic pregnancies, how you can treat them, to managing miscarriages. The lead story or anecdote in our story is about a nurse midwife who I spoke with, who used to work at a Catholic hospital in Maryland and talked to me about, relayed this anecdote about, a patient who was about 19 or 20 weeks pregnant and had her water break prematurely.

At that point, her fetus was not viable and that patient did not want to continue her pregnancy, but the medical staff there, what they would’ve done is induce labor with the intent of terminating the pregnancy. And they were unable to do that because of ERDs. And so, we really wanted to look at it systemically, too. So we looked at that combined with state laws that protect, shield hospitals from liability when they oppose providing things like abortions or even sterilization procedures on religious grounds. And included fresh new data analysis on how many women around the country live either nearby to a Catholic hospital or only have Catholic hospitals nearby. So we thought it was important.

Rovner: That’s a little bit of the lead because there’s been so much takeover of hospitals by Catholic entities over the last, really, decade and a half or so, that women who often had a choice of Catholic hospital or not Catholic hospital don’t anymore. That Catholic hospital may be the only hospital anywhere around.

Pradhan: Right and if people criticize the story, which we’ve gotten some criticism over it, one of the refrains we’ll hear is, “Well, just go to a different hospital.” Well, we don’t live in a country where you can just pick any hospital you want to go to — even when you have a choice, insurance will dictate what’s in-network versus what’s not. And honestly, people just don’t know. They don’t know that a hospital has a religious affiliation at all, let alone that that religious affiliation could impact the care that you would receive. And so there’s been research done over the years showing the percentage of hospital beds that are controlled by Catholic systems, et cetera, but Hannah and I both felt strongly that that’s a useful metric to a point, but beds is not relatable to a human being. So we really wanted to boil it down to people and how many people we’re talking about who do not have other options nearby. How many births occur in Catholic hospitals so that you know those people do not have access to certain care if they deliver at these hospitals, that they would have in other places.

Rovner: It’s a continuing story. We’ll obviously post the link to it. Well, I also want to talk about age this week. Specifically the somewhat advanced age of our likely presidential candidates this year. President [Joe] Biden, currently age 81, and former President Trump, age 77. One thing voters of both parties seem to agree on is that both are generically too old, although voters in neither party seem to have alternative candidates in mind. My KFF Health News colleague Judy Graham has a really interesting piece on increasing ageism in U.S. society that the seniors we used to admire and honor we now scorn and ignore. Is this just the continuing irritation at the self-centeredness of the baby boomers or is there something else going on here that old people have become dispensable and not worth listening to? I keep thinking the “OK, boomer” refrain. It keeps ringing in my ears.

Weber: I mean, I think there’s a mix of things going on here. I mean, her piece was really fascinating because it also touched upon the fact — which all of us here reported on; Rachana and I wrote a story about this back in 2021 — on how nursing homes really have been abandoned to some extent. I mean, folks are not getting the covid vaccine. People are dying of covid, they die of the flu, and it’s considered a way of life. And there is almost an irritation that there would be any expectation that it would be any differently because it’s a “Don’t infringe upon my rights” thought. And I do think her piece was fascinating because it asks, “Are we really looking at the elderly?”

I mean, I think that’s very different when we talk about politicians. I mean, the Biden bit is a bit different. I mean, I think there is some frustration in the American populace with the age of politicians. I think that reached a bit of a boiling point with the Sen. [Dianne] Feinstein issue, that I think is continuing to boil over in the current presidential election. But that said, we’re hurtling towards an election with these two folks. I mean, that’s where we’re at. So I think they’re a bit different, but I do think there is a national conversation about age that is happening to some degree, but is not happening in consideration to others.

Well, I was going to say, I think the other aspect is that these people are in the public all the time, or they’re supposed to be. President Biden is giving speeches. Potential candidate President Trump, GOP main candidate, he’s in the spotlight all the time, too. And so you can actually see when they mess up sometimes. You can see potentially what people are saying is signs of aging. And so I think it’s different when they’re literally in front of your eyes and they’re supposed to be making decisions about the direction of this country, potentially. So I think it’s somewhat a valid conversation to have when the country is in their hands.

Rovner: Yeah, and obviously the presidency ages you. [Barack] Obama went in as this young, strong-looking guy and came out with very gray hair, and he was young when he went in. Bill Clinton, too, was young when he was elected and came out looking considerably older. And so Biden, if people have pointed out, looks a lot older now than he did when he was running back in 2020. But meanwhile, despite what voters and some special councils think — including the one who said that Biden was what a kindly old man with a bad memory — neuroscientists say that it’s actually bunk that age alone can determine how mentally fit somebody is, and that even if memory does start to decline, judgment and wisdom may improve as you age. Why is nobody in either party making this point? I mean, the people supporting Biden are just saying that he’s doing a good job and he deserves to continue doing a good job. I mean, talk about the elephant in the room and nobody’s talking about it at all with Trump.

Pradhan: Yeah, I mean, I think probably the short answer is that it’s not really as politically expedient to talk about those things. I thought it was really interesting. Yeah, I really appreciated Stat News had this really interesting Q&A article. And then also there was this opinion piece in The New York Times that, this line struck me so much about, again, both about Biden’s age and his memory. And this line I thought was so fascinating because it just is telling how people’s perceptions can change so much depending on the discourse. So it pointed out that Joe Biden is the same age as Harrison Ford, Paul McCartney, Martin Scorsese. He’s younger than Berkshire Hathaway CEO Warren Buffett, who is considered to be one of the shrewdest and smartest investors, I think, and CEOs of modern times. And no one is saying, “Well, they’re too old to be doing their jobs” or anything. I’m not trying to suggest that people who have concerns about both candidates’ age[s] are not valid, but I think we sometimes have to double-check why we might be being led to think that way, and when it’s not really the same standards are not applied across the board to people who are even older than they are.

Rovner: I do think that some of the frustration, I think, Lauren, you mentioned this, is that in recent years, the vast majority of leadership positions in the U.S. government have been held by people who are, shall we say, visibly old. I mean Nancy Pelosi is still in Congress, but she at least figured out that she needed to step down from being speaker because I think the three top leaders in the House were all in their either late 70s or early 80s. The Senate has long been the land of very old people because you get elected to a six-year term. I mean, Chuck Grassley is 90 now, is he not? Feinstein wasn’t even, I don’t think, the oldest member of the Senate. So I think it’s glaring and staring us in the face. Rachana, you wanted to add something before we moved on.

Pradhan: Well, I think probably, and a lot of that too is just I think probably a reflection of voters’ broader gripes or concerns about the fact that we have people who hold office for an eternity, to not exaggerate it. And so people want to see new leadership, new energy, and when you have public officeholders who hold these jobs for … they’re career politicians, and I think that that is frustrating to a lot of people. They want to see a new generation, even regardless of political party, of ideas and energy. And then when you have these octogenarians holding onto their seats and run over and over and over again, I think that that’s frustrating. And people don’t get energized about those candidates, especially when they’re running for president. They just don’t. So it’s a reflection of just, I think, broader concerns.

Knight: And I think one more thing too was, I mean, Sen. Feinstein died while she was in office. I mean, people also may be referencing Ruth Bader Ginsburg on the Supreme Court, and it’s the question of, should you be holding onto a position that you may die in it, and not setting the way for the new person to take over and making that path available for the next people? Is that the best way to lead in whatever position you’re in? I think, again, Rachana said that’s frustrating for a lot of people.

Rovner: And I think what both parties have been guilty of, although I think Democrats even more than Republicans, is preparing people, making sure that that next generation is ready, that you don’t want to go from these people with age and wisdom and experience to somebody who knows nothing. You need those people coming up through the ranks. And I think there’s been a dearth of people coming up through the ranks lately, and I think that’s probably the big frustration.

Pradhan: I’m not sure if this is still true now, but I certainly remember, I think when Paul Ryan was speaker of the House, I remember the average age of the House Republican conference was significantly younger than that of Democrats. And they would highlight that. They would say, “Look, we are electing a new generation of leaders and look at these aging Democrats over here.” And that might still be true, but I certainly remember that that was something that they tried to capitalize on, oh-so-long ago.

Rovner: As we talked about last week, there are now a lot of those not-so-young Republicans, but not really old, who are just getting out because it is no fun anymore to be in Congress. Which is a good segue because … oh, go ahead.

Knight: Oh, I was just saying one thing Republicans do do in the House, at least they do have term limits on the chairmanships to ensure people do not hold onto those leadership positions forever. And Democrats do not have that. That’s at least in the House.

Rovner: But then you get the expertise walking out the door. It’s a double-edged sword.

Knight: Which is, not all the ones that are leaving have reached their term limits, which is the interesting thing actually. But yes, that expertise can walk out the door.

Rovner: Well, speaking of Congress, here in Washington, as I mentioned at the top, Congress is in recess, but when they come back, they will have I believe it is three days before the first raft of temporary spending bills expire. Victoria, is this the time that the government’s going to actually shut down, or are we looking at yet another round of short-term continuing resolutions? And at some point automatic cuts kick in, right?

Knight: Yeah, the eternal question that we’ve had all of this Congress, I think both sides do not want to shut down. I saw some reporting this morning that was saying [Senate Majority Leader] Chuck Schumer is talking to [House Speaker] Mike Johnson, but he also, Schumer did not want to commit to a CR [continuing resolution] yet either. So it’s possible, but we said that every time and they’ve pulled it off. I think they just know a shutdown is so, not even maybe necessarily politically toxic, but potentially —because I don’t know how much the public understands what that means …

Rovner: Because they don’t understand who’s at fault.

Knight: Right. Who’s at fault …

Rovner: … when it does shut down. They just know that the Social Security office is closed.

Knight: Right, but I just know they know it’s dysfunctional or it just can make things messy when that happens; it’s harder for agencies and things like that. So we’ll see. So the deadline is next Friday for the first set of bills. It’s just four bills then, and then the next deadline is March 8 for the other eight bills. There’s some talk that we may see a package over the weekend, but it’s Mike Johnson’s deciding moment. Again, he’s getting pressure from the House Freedom Caucus to push for either spending cuts or policy riders that include anti-abortion riders, anti-gender-affirming care, a lot. There’s a whole list of things that they sent yesterday they want in bills, and so he’s going to have to …

Rovner: Culture wars is the shorthand for a lot of those.

Knight: Yes, exactly. And so House Freedom Caucus sent a letter yesterday, and so Mike Johnson’s going to have to decide does he want to acquiesce to any House Freedom Caucus demands or does he want to work? But if he doesn’t want to do that, then he’s going to have to pass any funding bills with Democratic votes because he does not have enough votes with the Republicans alone, if Freedom Caucus people and people aligned in that direction don’t vote for any funding bills. If he does that, if he works with Democrats, then there is talk that they might file a motion to vacate him out of the speakership. So it’s the same problem that Kevin McCarthy had. The one thing going for Johnson is that he doesn’t have the baggage that Kevin McCarthy had, a lot of political baggage. A lot of people had ill will towards him, just built up over the years. Johnson doesn’t seem to have that as much, and also Republicans, do they want to be leadership-less again?

Rovner: Because that worked so well the first two times.

Knight: Right, so he has got to decide again who he wants to work with. And it doesn’t seem like we know yet how that’s going to go, and that will determine whether the government shuts down or not.

Rovner: But somebody also reminded me that on April 1, if they haven’t done full-year funding, that automatic cuts kick in. I had forgotten that. So I mean, they can’t just keep rolling these deadlines indefinitely. This presumably is the last time they can roll a deadline without having other ramifications.

Knight: Absolutely. And Freedom Caucus, actually, I think that’s partly why they don’t want to agree to something, because they want the 1% cuts across the board. So that was part of the deal made last year under Kevin McCarthy was, if they don’t come up with full funding bills by April 1, there will be a 1% cut put into place. And so the more hard-liners [are] like, “Great, we’re going to cut funding, so we want to do that.” And then Democrats don’t want that to happen. And so yeah, it’s the last time that they can potentially do a CR before that.

Rovner: Yeah, just a reminder, for those who are not keeping track, that April 1 is six months, halfway through the fiscal year for them to have not finished the fiscal year spending bills.

Knight: And one more note is that usually they’re starting on this coming year spending bills by this point in Congress. So we’re still working on FY24 bills. We should be working on FY25 bills already. So they’re already behind. It’s dysfunctional.

Rovner: I think it’s fair to say the congressional budget process has completely broken down. Well, moving on to “This Week in Medical Misinformation,” we have a case of doing well by doing no good. Lauren, tell us about your story looking into the profits that accrued to anti-vaccine and anti-science groups during the pandemic.

Weber: So I took a look at a bunch of tax records, and what I found is that four major nonprofits that rose to prominence during the covid pandemic by capitalizing on the spread of misinformation collectively gained more than $118 billion from 2020 to 2022. And were able to deploy that money to gain influence in statehouses, courtrooms, and communities across the country. And it’s a pretty staggering figure to tabulate all together. And what was particularly interesting is there was four of these different groups that I was directed to look at by experts in the field, and one of them includes Children’s Health Defense, which was founded by Robert F. Kennedy Jr., and they received, in 2022, $23.5 million in contributions, grants, and other revenue. That was eight times what they got before the pandemic. And that kind of story was reflected in these other groups as well. And it just shows that the fair amount of money that they were able to collect during this time as they were promoting content and other things.

Rovner: Yeah, I mean literally misinformation pays. While we’re on this subject, I would also note that this week there’s a huge multinational study of 99 million people vaccinated against covid that confirmed previous studies showing an association between being vaccinated and developing some rare complications. But a number of stories, at least I thought, overstated the risks of the study that it actually identified. Most failed to include the context that almost every vaccine has the possibility of causing adverse reactions in some very small number of people. The question of course, when you’re evaluating vaccines, is if the benefit outweighs the benefit of protecting against whatever this disease or condition outweighs the risk of these rare side effects.

I would also point out that this is why the U.S. actually has something called the [National] Vaccine Injury Compensation Program, which helps provide for people, particularly children, who experience rare complications to otherwise mandatory vaccines. Anyway, that is the end of my rant. I was just frustrated by the idea that yes, yes, we know vaccines sometimes have side effects. That’s the nature of vaccines. That’s one of the reasons we study them.

All right, anyway, that is the news for this week. Now it is time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Victoria, why don’t you go first this week?

Knight: So my extra credit this week is a story in ProPublica called “The Year After a Denied Abortion.” It’s by [photographer] Stacy Kranitz and [reporter] Kavitha Surana. And it was a very moving photo essay and story about a woman who was denied an abortion in Tennessee literally weeks to a month after Roe v. Wade was overturned in June 2022, and this was in July 2022. She got pregnant and was denied an abortion. And so it followed her through the next year of her life after that happened. And in Tennessee, it’s one of the strictest abortion bans in the nation. Abortion is banned and there are very rare exceptions. And so this woman, Mayron Michelle Hollis, she already had some children that had been taken out of her care by the state, and so she was already fighting custody battles and then got pregnant. And Tennessee is also a state that doesn’t have a very robust safety-net system, so it follows her as she has a baby that’s born prematurely, has a lot of health issues, doesn’t have a lot of state programs to help her.

She was afraid to go through unemployment because she had had issues with that before. The paperwork situation’s really tough. There’s just so much stress involved also with the situation. She eventually ends up kind of relapsing, starting drinking too much alcohol, and she ends up in jail at the end of the story. And so it just talks about how if there is not a robust safety net in a state, if you’re kind of forced to have a pregnancy that you maybe are not able to take care of, it can be really tough financially and psychologically and tough for the mother and the child. So it was a really moving story and there were photos following her through that year.

Rovner: Lauren.

Weber: I wanted to shout out my colleague who I actually sit next to, David Ovalle, who is wonderful at The Washington Post. He wrote an article called “They Take Kratom to Ease Pain or Anxiety. Sometimes, Death Follows.” And, as our addiction reporter for the Post, he did a horribly depressing but wonderful job actually calculating how many kratom deaths or deaths associated with kratom have happened in recent years. And what he found through requests is that at least 4,100 deaths in 44 states and D.C. were linked to kratom between 2020 and 2022, which is public service journalism at its best. I mean, I think people are clear that there is more risks with this, but I think that it’s emerging actually how those risks are. And he catalogs through the hard numbers, which is often what it requires for folks to pay attention, that this is something that is interactive with other medications which is causing death, in some cases, on death certificates. So pretty moving story, he talked to a lot of the families of folks that have died and it really makes you wonder about the state of regulation around kratom.

Rovner: Yeah, and then, I mean, all food diet supplements that are basically unregulated by the FDA because Congress determined in the 1990s that they should be unregulated because the supplement industry lobbied them very heavily and we will talk about that at some other time. Rachana.

Pradhan: My extra credit is a story in Politico by Megan Messerly. It’s titled “Red States Hopeful for a 2nd Trump Term Prepare to Curtail Medicaid.” The short version is work requirements are in, again. There was an effort previously that Republicans wanted to impose employment as a condition of receiving Medicaid benefits, and then they were very quickly, a couple of states, were sued. Only one program really got off the ground, Arkansas. And what happened as a result is because of the paperwork burdens and other things, thousands of people lost coverage. So currently the Biden administration, of course, is not OK at all with tying any type of work, volunteer service, you name it, to Medicaid benefits. But I think Republicans would be — the story talks about how Republicans would be eager to go and pursue that policy push again and curtail enrollment as a result of that.

So I thought that was, it’s an interesting political story. One thing it did make me wonder though, just as an aside is, there’s also been discussion on the flip side, the states in the story, which focus on South Dakota and Louisiana, states that many of them have already expanded coverage to cover the ACA [Affordable Care Act] population, but there are also still states that have not expanded Medicaid under the ACA’s income thresholds. And those conservative states might find it slightly more palatable to do so if you allow them to impose these types of conditions on the program. And so I think we will see what happens.

Rovner: Although, as we talked about not too long ago, Georgia, one of the states that has not expanded Medicaid under the Affordable Care Act now has a work requirement for Medicaid. And they’ve gotten something in the neighborhood, I believe, of like 2,700 people who’ve signed up out of a potential 100,000 people who could be covered if they actually expanded Medicaid. So another space that we will watch.

Well, my extra credit this week is from Stat News and, warning, it’s super nerdy. It’s called “New CMS Rules Will Throttle Access Researchers Need to Medicare, Medicaid Data.” It’s by Rachel Werner, who’s a physician researcher at the University of Pennsylvania, and it’s about a change recently announced by the Centers for Medicare & Medicaid Services that will make it more difficult and more expensive for researchers to work with the program’s data, of which there is a lot. Since the new policy was announced earlier this month, according to CMS, in response to an increase in data breaches, I’ve heard from a lot of researchers who are worried that critical research won’t get done and that new researchers won’t get trained if these changes are implemented because only certain people will have access to the data because you’ll have to pay every time somebody else gets access to the data. Again, it’s an incredibly nerdy issue, but also really important. So the department is taking comment on this and we’ll see if they actually follow through.

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

Pradhan: Still on X, hanging on, @rachanadpradhan.

Rovner: Victoria.

Knight: I’m also on X @victoriaregisk.

Rovner: Lauren?

Weber: Still on X @LaurenWeberHP.

Rovner: I think people have come sort of slithering back. We will be back in your feed next week. Until then, be healthy.

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

A federal judge in Texas has turned back the first challenge to the nascent Medicare prescription-drug negotiation program. But the case turned on a technicality, and drugmakers have many more lawsuits in the pipeline.

Meanwhile, Congress is approaching yet another funding deadline, and doctors hope the next funding bill will cancel the Medicare pay cut that took effect in January.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Lauren Weber of The Washington Post.

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories.

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories.

Among the takeaways from this week’s episode:

• Rep. Cathy McMorris Rodgers (R-Wash.), chair of the powerful House Energy and Commerce Committee, announced she would retire at the end of the congressional session, setting off a scramble to chair a panel with significant oversight of Medicare, Medicaid, and the U.S. Public Health Service. McMorris Rodgers is one of several Republicans with significant health expertise to announce their departures.
• As Congress’ next spending bill deadline approaches, lobbyists for hospitals are feverishly trying to prevent a Medicare provision on “site-neutral” payments from being attached.
• In abortion news, anti-abortion groups are joining the call for states to better outline when life and health exceptions to abortion bans can be legally permissible.
• Senate Finance Chairman Ron Wyden (D-Ore.) is asking the Federal Trade Commission and the Securities and Exchange Commission to investigate a company that collected location data from patients at 600 Planned Parenthood sites and sold it to anti-abortion groups.
• And in “This Week in Health Misinformation”: Lawmakers in Wyoming and Montana float bills to let people avoid getting blood transfusions from donors who have been vaccinated against covid-19.

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

Julie Rovner: Stateline’s “Government Can Erase Your Medical Debt for Pennies on the Dollar — And Some Are,” by Anna Claire Vollers.

Alice Miranda Ollstein: Politico’s “‘There Was a Lot of Anxiety’: Florida’s Immigration Crackdown Is Causing Patients to Skip Care,” by Arek Sarkissian.

Rachel Cohrs: Stat’s “FTC Doubles Down in Welsh Carson Anesthesia Case to Limit Private Equity’s Physician Buyouts,” by Bob Herman. And Modern Healthcare’s “Private Equity Medicare Advantage Investment Slumps: Report,” by Nona Tepper.

Lauren Weber: The Wall Street Journal’s “Climate Change Has Hit Home Insurance. Is Health Insurance Next?” by Yusuf Khan.

Also mentioned on this week’s podcast:

• The Washington Post’s “U.S. Investigates Alleged Medicare Fraud Scheme Estimated at $2 Billion,” by Dan Diamond, Lauren Weber, and Dan Keating.
• Super Bowl ads from Pfizer, Power to the Patients, and the American Values 2024 super PAC.
• KFF Health News’ “Rapper Fat Joe Says No One Is Making Sure Hospitals Post Their Prices,” by Julie Appleby.

click to open the transcript

Transcript: Biden Wins Early Court Test for Medicare Drug Negotiations

KFF Health News’ ‘What the Health?’Episode Title: Biden Wins Early Court Test for Medicare Drug NegotiationsEpisode Number: 334Published: Feb. 15, 2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Feb. 15, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go.

We are joined today via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi everyone.

Rovner: No interview this week, but we do have a special Valentine’s Day surprise. But first, the news. We’re going to start this week in federal district court, where the drug industry has lost its first legal challenge to the Biden administration’s Medicare drug price negotiation program, although on a technicality. Rachel, which case was this, and now what happens?

Cohrs: This was the capital “P” PhRMA trade association. And this case was a little bit of a stretch, anyways, because they were trying to find some way to get a judge in Texas to hear it. Because the broader strategy is for companies and trade groups to spread out across the country and try to get conflicting decisions from these lower courts.

Rovner: Which would force the Supreme Court to take it?

Cohrs: Exactly, yes. Or make it more likely. So PhRMA, in this case, they had recruited, there’s a national group that represents infusion centers and that was headquartered in Texas. The judge ultimately ended up ruling that this association didn’t follow the right procedure to qualify for judicial review and threw them off the case. And then they were like, well, if you throw them off the case, then there’s nobody in Texas, you can’t hear this here. So that was the ultimate decision there, but this could come back up. It was dismissed without prejudice. So this isn’t the end of the road for this lawsuit.

And it’s important to keep in mind that this wasn’t a ruling on any of the substance of the arguments. And trade groups generally are going to have less of an argument for standing, or it’s going to be a harder argument than the companies themselves that actually have drugs up for negotiation.

Rovner: And they’re suing too, the drug companies?

Cohrs: They are suing too. Yeah, just for everybody to keep on your calendars, there’s a judge in New Jersey who is hoping to have a quadruple oral argument on four of these cases, so stay tuned. That could be coming early next month. But these are very much moving. I think we are going to get insight on some of these arguments pretty soon, but this case is not quite that test case yet.

Rovner: All right, well, we’ll get to it eventually. Well, moving on to Capitol Hill. When we were taping last week, Sen. Bernie Sanders was holding his much-publicized hearing to grill drug company CEOs about their too-high prices. Rachel, you were there. Did anything significant happen?

Cohrs: I think it was kind of expected. I don’t think we were trying to find any innovative legislative solutions here. Honestly, it seemed, just from a candid take, that a lot of these lawmakers were not very well-prepared for questioning. There were a couple of notable exceptions, but we didn’t learn a whole lot new about why drug prices are high in the United States, how our system works differently from other countries.

I did find some useful nuggets in the CEO’s testimony about how low the net prices are for some of their medications, that they’re already offering a 70% discount, a 90% discount, which to me just kind of put into perspective some of the discounts we could be hearing in the Medicare negotiation program. That oh, even if it’s a 90% discount, that might not even be different from what they’re paying now. So just interesting to file a way for the future, but I think it was mostly a non-event for the CEOs who, for some reason, had to, under the threat of subpoena, come make these arguments. So it seemed like much ado about not a whole lot of substance.

Rovner: That was sort of my theory going in, but you always have to watch just in case. Well, also on Capitol Hill, the chairman of the powerful House Energy and Commerce Committee announced she will retire at the end of the Congress. Cathy McMorris Rodgers, who’s a Republican from Washington, was in her first term as chair of the committee that oversees parts of Medicare, all of Medicaid, as well as the entire U.S. Public Health Service.

I imagine this is going to set off a good bit of jockeying to take her place. And why would somebody step down early from such a powerful position? Do we have any idea?

Cohrs: Have you seen …? Oh, go ahead.

Ollstein: Facing Congress is what you say? Yes. This is part of a wave of retirements we’ve been seeing recently, including from some other committee chairs who could have theoretically continued to be powerful committee chairs for several years to come. People are taking this as part of the bad sign for Republicans. Either a sign that they don’t believe they’re going to hold the majority after this November’s election, or they’re just so fed up with the struggles they’ve had governing over the last few years and the inability to get anything done. And people are thinking, well, maybe I can get something done in a different role, not in Congress, because certainly, we’re not doing too much here to be proud of.

Rovner: Yeah, I feel like Cathy McMorris Rodgers is kind of this poster child for a very conservative Republican who’s not the far-right-wing MAGA type, who actually wants to do legislation. She just wants to do Republican legislation, and that seems to be getting harder in the House.

Ollstein: Right, right. And there’s a concern that, particularly on the right within Republicans, that we’re losing a health policy brain trust. We’re losing the people that have been really integral to a lot of the nitty-gritty policy work over the years, and they’re not being replaced with people who have that interest. They’re being replaced with people who are more focused on culture wars and other things. And so there’s concern in the future about the ability to cobble together things like Medicare reimbursement rates, or these technical things that aren’t really part of the culture wars.

Rovner: Yeah, I think we mentioned at some point that Mike Burgess is also retiring, also high up on the Energy and Commerce Committee. And he’s a doctor who’s really had his hands into some of this really nerdy stuff, like on Medicare physician reimbursement. And that will be obviously just a big loss of institutional memory there.

Cohrs: For the future of the committee, I know congressman Brett Guthrie has kind of thrown his hat in the ring to succeed her. Unclear who exactly is going to win this race, but he is the chairman of the health subcommittee, does bring some health expertise. So the E&C committee deals with a lot of different priorities, but if he were to succeed her, then I think we would see, at least at the top of the committee, some of the expertise remain.

Rovner: Well, meanwhile, in all of this jockeying, the next round of temporary government funding bills expires on March 1 and March 8, respectively, which is getting pretty close. And that brings back efforts to cancel the 3.4% pay cut that doctors got for Medicare patients in January. Where are we on funding, and are any of these health issues that people are out lobbying on going to make it into this next round? Is there going to be a next round?

Cohrs: Yeah, we don’t know if there’s going to be a next round, I don’t think. But at least the sources I’ve talked to have said that a full cancellation of the 3.4% cut for Medicare or payments to doctors is off the table at this point. They are hoping to do some sort of partial relief. They haven’t decided on percentages for that yet. And it’s unclear how much money will be available from pay-fors. It is still very much squishy, not finalized, two, three weeks out from the deadline, but I think …

Rovner: Two weeks.

Cohrs: There is some agreement on some relief, which has not been the case thus far for doctors. So I think that’s a positive sign.

Ollstein: Yeah. Overall, the chatter is about the need for yet another CR [continuing resolution] because the work is not getting done in time to meet these deadlines. That seems to be where we’re headed. Obviously, that will piss off a lot of members on the right who don’t want another CR, who didn’t want the last couple CRs. And so once again, we are staring down a possible shutdown.

Rovner: And I had forgotten, somebody reminded me, that even if they get another temporary funding bill, starting in April, there are automatic cuts if they’re not finished with this year’s funding bills. Which, I don’t know, is there any indication that they’re going to be finished with them by April either? I have not seen a lot of progress here. They’ve been fighting over other things, which is fine to fight over other things, but I’m not noticing a lot happening on the spending bills.

I’m seeing a lot of shaking heads. I guess nobody else is noticing either. Well, we will obviously keep watching that space because next week, we will only be one week away.

Well, another Medicare policy that supporters are hoping to get into one or another of these spending bills is creating something called more site-neutral payments in Medicare. Currently, Medicare pays hospitals and hospital outpatient departments, and sometimes even hospital-owned physician practices, more than it pays non-hospital affiliated providers for the exact same service.

The theory is that hospitals need higher payments because they have higher fixed costs, like keeping emergency rooms open 24/7. But it costs Medicare many billions of taxpayer dollars for this differential in payments. And this has become quite the lobbying frenzy for the hospital industry, yes?

Cohrs: Yes. I think it’s something that they can all get on board with hating, and I think they view it similarly to the drug pricing debate as a slippery slope. The policy Congress really is looking at now is a $3 billion, very small slice of all the services that could potentially be subjected to site-neutral payments. But the whole pie here is $150 billion potentially for Medicare.

We’re talking hundreds of billions of dollars for commercial payments. So I think they are really pushing to get to lawmakers, especially, from what I’ve talked to Senate Republicans, they are just not on board with it, they’re worried about the rural hospitals. And if they can connect to those things, which they have been successful in doing so far, they’re just not going to get very far.

I mean, if you look at the Senate Finance Committee, you have Mike Crapo from Idaho, Republican leadership. You have [John] Barrasso from Wyoming. There’s really just so many rural states that even Chuck Grassley, who is a moderate on a lot of health policy issues, talked about his rural hospitals in Iowa as soon as I asked him about this. So they’re not there yet right now, but I think hospitals are trying to keep it that way.

Rovner: And it was ever thus that the Senate is much more rural-focused than the House because pretty much every single senator has at least part of a rural area that they represent. Lauren, you wanted to add something?

Weber: Yeah, I just wanted to say, I always find it funny when rural hospitals come up as a cudgel by the big hospital associations, who don’t seem to look out for them the vast majority of the time when they’re closing. But as you pointed out, the Senate is much more rural-focused. So I do agree with all of you all, that I question whether or not this will have much ground to gain.

Rovner: Yeah. And the other thing that I keep wanting to point out is that there’s all this talk on Capitol Hill among Republicans of cutting the spending bills, the appropriations, and we’re going to balance the budget. Well, there’s just not enough money in the appropriation bills to do anything to the deficit. The money is in things like Medicare. I mean, that’s where, if you really want to make a dent in the deficit, you’re going to do it. And, as we’re seeing with this particular fight, every time they want to do something that’s going to save money, it’s going to hurt somebody. And I mean, there are obviously legitimate concerns about rural hospitals that are in trouble, particularly in states that haven’t expanded Medicaid, but that’s one of the reasons. It’s not so much the spending bills that make it hard to do anything about the deficit. It’s fights like these.

Meanwhile, for better or worse, another reason that Medicare costs so much is that it’s subject to a lot of fraud. Lauren, I have seen a lot of Medicare fraud stories over the years, but you’ve got one that was discovered in a pretty novel way. So tell us about it.

Weber: Yeah, my colleagues Dan Diamond, Dan Keating, and I found out early last week — we got a tip from the National Association of ACOs [Accountable Care Organizations] saying that they had seen this massive spike in catheter billing. When we did some digging into the companies they had identified — and to be clear, that spike of catheter billing was worth an alleged $2 billion in billings to Medicare. So when we talk about site-neutral payments, that’s almost what you would get for site-neutral payments: the $2 billion in Medicare fraud, but regardless.

So my colleagues and I dug in. So Dan, Dan, and I called around, and we found links between the seven companies that were charging Medicare for catheters that folks never received. I want to point out, I spoke to this lovely woman in Ponta Vedra Beach, Florida. She’s 74, Aileen Hatcher, who spotted this diligently going through her Medicare form, but as she said, she went to her — literally, these are her words — she’s like, “I went to my old lady luncheon and told them all this was on my Medicare statement.” And they said, “Oh, we don’t read those because we don’t pay Medicare the money. So we don’t read the explanation of benefits to see what we’ve been charged.”

And, unfortunately, I think that is what happens a lot of times with Medicare fraud. It goes unnoticed because folks aren’t the ones paying the dollars. But the bottom line is this was so large and so many people called into Medicare that Dan and I discovered that there is an ongoing federal investigation. Three of the companies, former owners that I called, confirmed to me that FBI had interviewed them or was talking to them about these folks that had taken over the companies and started charging Medicare this much money. And Dan also got some sources on that front as well.

So, I mean, it’s a pretty massive Medicare fraud scheme. I’ll give a call-out here. If anyone here has been affected by catheter and Medicare fraud, please give me an email. We’d love to hear more. I think it speaks to the fact that Medicare fraud — we all know this because we cover this — Medicare fraud is as old as time. It continues to happen, especially durable medical equipment Medicare fraud. But this is so much money. And it is wild that even though we talked to so many people that called Medicare over and over and over again, these folks were able to get away with billing for a very long time.

Rovner: What I found really fascinating about the story, though, is that it was the doctors in the ACOs that spotted it because — we’ve talked about these accountable care organizations — they’re accountable for how much it costs to take care of their patients.

The patients aren’t paying for it, as they point out, but these doctors, it’s coming right out of their bonuses and what they’re charged and how much they get for Medicare. So there’s finally somebody with a real incentive to spot this kind of fraud, because, basically, it was taking money from them. Right?

Weber: That’s exactly right. I think that’s why they were so hot to have some movement on this because, as they pointed out, they could lose millions of dollars in bonuses for better taking care of their patients.

It’s wild that it gets to this point. Like I said, we had all these people that called in to Medicare and many fraud lawyers we talked to said, “Look, why aren’t the NPIs [National Provider Identifiers] turned off?” Great question.

Rovner: Yeah. Anyway, I was fascinated by this story, and as I told Lauren earlier, I’m not a big fan of Medicare fraud stories just because there are so many of them. But this one is like, oh, maybe we finally have somebody … the ACOs can become bounty hunters for Medicare fraud, which would not be a bad thing.

All right, well, moving on to abortion this week, we have spent a lot of time talking about how doctors who perform abortions and patients who need them in emergencies have been trying to get state officials to spell out when the exceptions to state bans apply. Well, now it seems that it’s the other side looking for clarification.

Stat News reports that several anti-abortion groups have joined doctors and patients in urging the Texas Medical Board to spell out which conditions would qualify for the exception to the ban, and not subject doctors who guess wrong to potential prison terms and loss of their medical licenses.

Meanwhile, legislation moving through the House in South Dakota, endorsed by multiple anti-abortion groups, would require the state to make a video explaining how its ban works and under what circumstances. Alice, what’s going on here?

Ollstein: I think it’s this interesting confluence and it’s an interesting development because, at first, anti-abortion groups were insisting that the laws were perfectly clear. And that doctors were either willfully or mistakenly misinterpreting them. As more and more stories came forward of women being turned away while experiencing a medical emergency and suffering harm as a result, a lot of those women are part of lawsuits now.

They were saying the law is fine. In some cases, these anti-abortion groups wrote the laws themselves or advised on them saying, your interpretation is what’s wrong. The law is fine. But I think as so many of these stories are coming out, that’s not proving enough. And now they’re going back and saying, OK, well, maybe there do need to be some clarifications. They don’t want changes. There’s different camps because some people do want changes. Some people say, OK, we need more exceptions. We need more carve-outs to avoid these painful stories. Whereas other anti-abortion forces and elected officials say, no, we don’t need to change the law. We just need to clarify it and explain it. And so I think that’s going to be an ongoing tension.

Rovner: Yeah, I know one of the big themes earlier in this whole fight — I won’t say earlier this year, it was mostly last year — was redefining things as not abortions. That if you’re terminating an ectopic pregnancy, that’s not an abortion. Well, that is an abortion.

Ollstein: Medically, yes.

Rovner: So apparently, the … right. The renaming has not worked so far. So now I guess they’re trying to clarify things. Lauren, you wanted to add something?

Weber: Yeah, I just wanted to say, when you kick things to the medical board, I think people see that as an unbiased unpolitical organization. But medical boards are often appointed by the governor. So, in this case, Gov. [Greg] Abbott. And also take Ohio, for example: I believe that one of their medical board leaders is the head of the right-to-life movement.

I haven’t looked at Texas’. But kicking it to the medical board to make a decision — putting aside the fact that most medical boards are incredibly inadequate at their actual job, which is disciplining doctors, they’re not necessarily known for their competence — is that you also deal with some of the politics involved in this as well.

Rovner: So in South Dakota, it would kick this to the South Dakota Department of Health, which, of course, is controlled by the governor, who’s a Republican and pro-lifer. And so it’s hard to imagine what sort of doing a video explaining this is going to do to clarify things any further than they already think the law has gone. But at least … I’m fascinated by the effort here, that this is going on in multiple states. Speaking of state legislators, in Missouri, they’re working on a bill to create an abortion ban exception for children 12 and under — obviously thinking of the 10-year-old in Ohio in 2022 [who] had to go to Indiana to get a pregnancy terminated. But one Republican state senator complained that “a 1-year-old could get an abortion under this.” This is a serious question: Should legislators have to pass a basic biology test to make laws about reproductive health? As we know, 1-year-olds cannot get pregnant.

Ollstein: I mean, this was a more glaring example. We see this over and over in a lot more subtle ways, too, where doctors and medical societies are pointing out that these laws are drafted using language that is not medically accurate at all. And it can be small things in terms of when someone should qualify for a medical exemption to an abortion ban. Some states have language around if it would cause “irreversible damage.” That’s not a term doctors use in that circumstance, things like that. Or a major bodily function would be impaired if they don’t get an abortion. Well, what is a major bodily function? That’s not defined. And so, yes, this was an almost laughable example of this, but I think that it’s a sign of something more pervasive and maybe less obvious.

Rovner: Yeah, I mean, I have listened to a lot of state debates with a lot of legislators saying things that are, as I say, kind of laughably inaccurate. Sorry, Lauren.

Weber: Oh, I would just say as a Missourian and as someone who lived in Missouri until a year ago, this gentleman, in particular, it does seem like has a history of making somewhat inflammatory statements that he knows will be picked up by the media. I mean, I think he brought a flamethrower to an event. I mean, I think that’s part of the shtick. But welcome to Missouri politics. You never know what you’re going to get.

Ollstein: And of course, we have the famous assertion that people can’t get pregnant as a result of rape because the body knows how to shut it down, which is obviously not …

Rovner: Which happened in a Missouri Senate race.

Ollstein: Yes. Yep. Exactly. So Missouri, once again, covering itself in glory.

Rovner: All right, well, something we haven’t talked about a lot recently are crisis pregnancy centers, which are usually storefronts for anti-abortion organizations that often lure women seeking abortions by offering free pregnancy tests and ultrasounds so that they can then talk them into carrying their pregnancies to term. The centers are getting more and more public support from states. One estimate is that government support totaled some $344 million in fiscal 2022. So that was a couple of years back. And increasingly as abortion clinics close in states with bans, crisis pregnancy centers, which typically don’t have medical professionals on staff and aren’t technically medical facilities, may be the only resource available to pregnant women. It seems that could have some pretty serious ramifications. Yes?

Ollstein: I mean, I think people don’t realize just how vast the network of these centers are. They outnumber abortion clinics by a lot in a lot of states, including states that support abortion rights. They’re very, very pervasive. And this is becoming a huge focus for the anti-abortion movement. It was basically the theme of this year’s March for Life, was these sort of resources. In part, it is an attempt to show a kinder face of the movement and change public opinion. Obviously, like we discussed, there are all these painful stories coming out about people being denied care. And so promoting these stories of places that provide some form of something, some services, it’s not necessarily medical care, but …

Rovner: They provide diapers and strollers and car seats. I mean, they do actually … many of them actually provide services for babies once they’re born.

Ollstein: Right. Right, right, right. And so I think there is going to be a huge focus on this in the policy space, both in terms of directing more taxpayer funding to these centers, which progressives vehemently oppose.

And so I think this is going to be a big focus going forward. It already has in Texas. Texas has directed a lot of money towards what they call alternatives to abortion, which include these centers. And so I think it’s going to be a big focus going forward.

Rovner: Well, one other thing about crisis pregnancy centers, because they are not medical facilities, they are not subject to HIPAA medical privacy rules. And it turns out that is important. According to an investigation by Senate Finance Committee Chairman Ron Wyden, a company gathered and sold location data for people whose phones were in or around 600 separate Planned Parenthood locations, without the patients’ consent, to use an anti-abortion advertising.

Wyden is asking the SEC and the FTC to investigate the company, but this raises broader questions about information privacy, particularly in the reproductive health space. I remember right after Roe v. Wade was overturned, there were lots of warnings to women who were using period-tracking apps and other things about the concern about people who you may not want to know your private medical situation being able to find out your private medical situations. Is there any indication that there’s any way from the federal government point of view to crack down on this?

Ollstein: So I don’t know about that specifically, but there is a bigger effort on privacy and digital privacy and how it relates to abortion. We’re still waiting on the release of the final HIPAA rule from the Biden administration, which will extend more protections around abortion data, I think. But, because it’s HIPAA, it does only apply to certain entities and these centers are not among them. Another area I’ve been hearing concern about is research. A researcher at a university who is studying people who have abortions or don’t have abortions, their data is not protected. And so they are very stressed out about that, and that’s compromising medical research right now. So there’s a lot of these different areas of concern. And as we so often see, technology evolves a hell of a lot faster than government evolves to regulate it and address it. And that is just an ongoing concern.

Rovner: Yes, it is. And at some point, we’ll talk about artificial intelligence, but not today. Actually, right now, I want to turn to the Super Bowl. Yes, the Super Bowl. In between all the ads for blockbuster movies, beer, cars, and snack foods, and, right, a football game, there were three ads aimed directly at health policy issues.

In one, the nonprofit price transparency advocacy group Power to the Patients got musicians Jelly Roll, Lainey Wilson, and Valerie June to basically call hospitals and insurance companies greedy. It’s not clear to me if this was a free PSA or if this group paid for it, but I suspect the latter.

Does anybody know who this group is? They seem to have lots of access to big names for what seems to be a kind of obscure health issue. I mean, everybody’s for transparency, but I don’t think I’ve ever seen a Super Bowl ad about it.

Cohrs: This is not their first Super Bowl. It’s backed by Cynthia Fisher who is married to the CEO of Sam Adams, parent company. And he’s also a member of the Koch family. But she has been passionate about health care price transparency for years. I mean, was in President [Donald] Trump’s ear, has made the legal argument that the authority existed under the Affordable Care Act. Lobbied to get these regulations passed. And she has definitely employed unusual or unorthodox techniques, like Super Bowl ads, like painting murals, like hosting parties and concerts for health staff and health policy people in D.C. And I think she’s also lobbying for the codification of these transparency regulations.

And it is a little wonky, but I think her frustration is that she lobbied so hard to get these price transparency regulations and everyday people don’t even know that it should be available for them. And obviously academics disagree over how useful that information is for everyday people. But I think she has just taken it upon herself to do the PR campaign for these regulations that she believes could help people make more educated decisions about care that isn’t necessarily emergency care, like MRIs, that kind of thing. So she’s been around for years and has been very active.

I think Fat Joe is another celebrity that she’s brought onto the case. Jelly Roll — I hadn’t seen him do an event with her before or an ad. But I think there’s an ever-expanding cast of celebrities where this is just … it seems like a pretty noncontroversial issue. So I mean, Busta Rhymes, like French Montana, there’s been a lot of people involved in this campaign and I expect it to be ongoing.

Rovner: I feel like she’s kind of the Mark Cuban of price transparency, where Mark Cuban is all into drug prices. Alice, you want to add something?

Ollstein: Well, it’s just funny to me because, as we’ve discussed many, many times on this podcast, transparency goes not very far in helping actual patients. And so it’s funny that a group called Power to the Patients is going all in on this issue when, as we know, the vast majority of health care people need they cannot shop around for and, even when they can, it’s not something people are always able or willing to do.

And so transparency gets a lot of bipartisan support and sounds good in theory, but we’ve seen in terms of what’s been implemented so far in terms of hospital prices, et cetera, that it doesn’t do that much to bring down prices or empower people.

Rovner: Although, I don’t know, getting famous people to care about health policy can’t be a terrible thing. Lauren, did you want to add something too?

Weber: No, I just wanted to say, I mean, I will say as much as we’re all clear on price transparency, what this all means, the Super Bowl is a new audience. So, I mean, if you’re going to spend your money, at least you’re spending it — and that was the most watched TV program, I believe, of all time — so you’re spending it in a way that you’re getting some eyeballs on it.

Rovner: All right, well, that was not the only ad. Next, a company that clearly did pay for its ad was Pfizer, which used a soundtrack by Queen and talking paintings and statues to celebrate science and declare war on cancer. This is also one I don’t think I had seen before. I mean, what is Pfizer up to here? I mean, obviously, Pfizer can afford a Super Bowl ad. There’s no question about that, but why would they want to?

Cohrs: I mean, Pfizer has not been performing great financially lately. And I think they pulled out of the lobbying organization biome and chose to spend money on a Super Bowl ad, which I think is a really interesting choice. I mean, I don’t know what the dues are, but a Super Bowl ad is an expensive thing.

And I think there has been this attack on science, as a whole, and I think there’s an outstanding question of how to rebuild trust. And I think that this was Pfizer’s unorthodox tactic of trying to equate themselves with more credible, historical scientists who are less controversial. Yeah, my colleague did a good story on it.

Rovner: Yeah, like Einstein.

Cohrs: Right.

Rovner: Well, we’ll link to all of these ads. If you haven’t seen them there, they’re definitely worth watching. Well, finally, and in keeping with the occasional politics that does creep into Super Bowl ads, the super PAC supporting the presidential candidacy of independent anti-vaxxer Robert F. Kennedy Jr. paid $7 million for an ad that was basically a remake of the 1960 ad for his uncle John F. Kennedy, when he was running for president, which provoked an outcry from several of his Kennedy cousins who have repeatedly disavowed RFK Jr.’s candidacy and his causes.

For his part, the candidate apologized to his family members and said he didn’t have anything to do with the ad directly, because it was the super PAC. But then he pinned it to his Twitter profile, where he has more than 2½ followers. I can’t help but wonder if they’re going after football fans who actually believe the whole Taylor Swift-Travis Kelsey thing is a conspiracy.

No comment on Robert F. Kennedy Jr. and pissing off his entire family? We will move ahead then.

Speaking of conspiracy theories, in “This Week in Health Misinformation,” we have — drum roll — blood transfusions. Seems that there are a significant number of people who believe that getting blood from someone who has been vaccinated against covid, using the mRNA vaccines, will somehow change their DNA or otherwise harm them. And state legislators are listening.

In Wyoming, a state representative has introduced a bill that would require the labeling of blood from a covid-vaccinated donor. So prospective recipients could refuse it, at least in nonemergency situations. And in Montana, there’s a bill that would go even further, banning blood donations from the covid-vaccinated. That one appears to not be going anywhere, but this could have serious implications. It would create blood shortages, I imagine, even in rural areas where fewer people are vaccinated than in some of the urban areas. But I mean, this strikes me as not an insignificant kind of movement.

Ollstein: Well, it seems troubling on two fronts. One, we already have blood shortages and we already have dangerously low vaccination rates and not just covid vaccination rates. The hesitancy and anti-vax sentiment is spilling over into routine childhood vaccinations and all kinds of things.

And so I think anything that appears to give that sort of stigma and conspiracy a veneer of credibility, like state law for instance, threatens to further entrench those trends.

Rovner: All right, well, that is this week’s news. We will do our extra credits in a minute, but first, as promised, we have the winners of the KFF Health News “Health Policy Valentines” contest. This year’s winner, and we will post the link to the poem and its accompanying illustration, is from Jennifer Reck.

It goes, “Darling, this Valentine’s Day, let’s grab our passports and fly away to someplace where the same drugs cost a fraction of what they do in the States.” I have asked the panel to each choose a finalist of their own to read. So, Lauren, why don’t you start?

Weber: “The paperwork flirts with my affections, a dance of denials, full of rejections. My heart yearns for you, my sweet medication, but insurance insists on prior authorization.”

Rovner: And who’s that from?

Weber: That’s from Sally Nix. Excellent work, Sally.

Rovner: Alice.

Ollstein: OK, I have one from Kara Gavin. It’s “My love for you, darling, is blinding / Like a clinical trial pre-findings / But I fear we shall part / And I’ll lose my heart/ Because of Medicaid unwinding!” Very topical.

Rovner: Very. Rachel.

Cohrs: OK, this is from Andrea Ferguson. “Parental love is beautiful and guess what makes it stronger? A paid parental leave policy to stay with baby longer.”

Rovner: Very nice. Thank you all who entered. And we’ll do this again next year. All right, now it is time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?

Ollstein: I have a piece from my colleague Arek Sarkissian, down in Florida, and it is about how the state’s immigration law is deterring immigrants from seeking health care. And one of the areas they’re most concerned about is maternal health care. We already are in a maternal health crisis and the law requires hospitals that receive Medicaid funding to ask people about their immigration status when they come in for care. What a lot of people don’t know is that they don’t have to answer, but this fear of being asked and potentially being flagged for deportation enforcement, et cetera, is making people avoid care. And so there’s just a lot of concern about this and a lot of attempts to educate folks in the immigrant community. Obviously, Florida has a very large immigrant community. And it just reminded me of the fears that were happening early in the pandemic when the public charge rule under Trump was in effect and it was deterring immigrants from seeking care.

And in the middle of a pandemic, when we’re dealing with an infectious disease that doesn’t care if you have citizenship or not, having a large segment of the population avoid care is dangerous for everyone.

Rovner: Indeed. Lauren.

Weber: So I chose an article titled “Climate Change Has Hit Home Insurance. Is Health Insurance Next?” by Yusuf Khan in The Wall Street Journal. And, I mean, look, the insurers are — they’re looking out for their bottom line. And the bottom line is that climate change does have health impacts. So the question is, will that start to hit premiums? The sad answer, in part of this article, is that, unfortunately, the people often most affected by climate change don’t have health insurance. So that may not affect premiums as much as we expect, but I think this is a really fascinating test case of how when climate change comes for your money, you’ll start to see it validated more. So I’ll be curious to see how this plays out with the various health insurers.

Rovner: Yeah, obviously, we’re already seeing people not being able to get home insurance in places like Florida and California because of increasing fires and increasing hurricanes and increasing flooding in some places. Rachel?

Cohrs: So mine is a package deal. It’s two stories related to private equity investment in health care. The first is a piece in Modern Healthcare by Nona Tepper on a Medicare Advantage report by the Private Equity Stakeholder Project. And it just kind of highlighted the downturn in investment in Medicare Advantage, like marketing companies and brokers, consultants.

And I thought it was an interesting take because, I think so often, we see reporting about how private equity is expanding its investment in a certain sector. But this, I think, was an interesting indicator where, oh, it’s turning downward so dramatically. And I think that it’s interesting to track the tail end of more regulation or whatever rule comes out. How does that impact investment? And we talk a lot about that in the pharmaceutical space. But I thought this was a great interesting creative take on the Medicare Advantage side of things.

And also just highlighting some reporting from my colleague Bob Herman about the FTC doubling down on the Welsh Carson’s anesthesia case to limit private equity’s physician buyouts. So the FTC is taking on Welsh Carson, a powerful private equity firm, and other private equity firms asked for the case to be dismissed. And Bob does a great job breaking down these really complicated arguments by the FTC as to why they’re not backing down. They’re not going to cut a deal, they want this case to go forward.

So it will be interesting to watch as this develops, but I think Bob makes a great argument. There are applications for other cases as well and for the FTC and being able to attack these complex corporate arrangements where they’re using subsidiaries to drive prices up for physician services and other things. So definitely worth a read from Bob.

Rovner: Yes, another theme of the Federal Trade Commission getting more and more involved in health care in general and private equity in health care in particular. My extra credit this week is from Stateline by Anna Claire Vollers, and it’s called “Government Can Erase Your Medical Debt for Pennies on the Dollar — And Some Are.” It’s about how a growing number of states and cities are buying up and forgiving medical debt for their residents. Backers of the plans point out that medical debt is a societal problem that deserves a societal solution. And that relieving people’s debt burdens can actually add to economic growth. So it’s a good return on a small investment. It’s obviously not going to solve the medical debt problem, but it may well buy some government goodwill for some of the people of these states and cities.

All right, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our technical guru, Francis Ying, and to Stephanie Stapleton, filling in this week as our editor. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Lauren, where are you these days?

Weber: Still just on Twitter @LaurenWeberHP, or X, I guess.

Rovner: Alice.

Ollstein: On X @AliceOllstein and on Bluesky @alicemiranda.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on X and also getting more engaged on LinkedIn lately. So feel free to follow me there.

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

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

For the first time, a jury has convicted a parent on charges related to their child’s mass-shooting crime: A Michigan mother of a school shooter was found guilty of involuntary manslaughter. What remains unclear is whether this case succeeded because of compelling evidence of negligence by the shooter’s mother or if this could become a new avenue for gun control advocates to pursue.

Meanwhile, a prominent publisher of medical journals has retracted two articles that lower-court judges used in reaching decisions that the abortion pill mifepristone should be restricted. The case is before the Supreme Court, with oral arguments scheduled for March 26.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Alice Miranda Ollstein of Politico, and Rachana Pradhan of KFF Health News.

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories.

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories.

Among the takeaways from this week’s episode:

• Sage Journals, a major medical publisher, has retracted two studies central to abortion opponents’ arguments in a federal court case over access to the abortion pill mifepristone. Although the retraction came before next month’s Supreme Court hearing on the case, the now-discredited studies have permeated the public debate over mifepristone.
• Florida’s Supreme Court has until April 1 to stop a measure about the availability of abortion from appearing on the November ballot. The decision could be pivotal in determining abortion access in the South, as Florida’s current 15-week ban (compared with near-total bans in surrounding states) has made it a regional destination for abortion care.
• In Medicaid news, the nation is about halfway through the “unwinding,” the redetermination process states are undergoing to strip ineligible beneficiaries from the program’s rolls. Although the process will amount to the biggest purge of the Medicaid and Children’s Health Insurance Program rolls in a one-year period, it is expected that, when all is said and done, overall enrollment will look much as it did before the pandemic — though how many people are left uninsured remains to be seen.
• In the states, Georgia is suing the Biden administration to extend its Medicaid work-requirement program. Meanwhile, some states are using Medicaid funding to address housing issues. Despite evidence that addressing housing insecurity can improve health, it is also clear that state budgets would need to be adjusted to meet those needs.
• And in “This Week in Health Misinformation,” PolitiFact awarded a “Pants on Fire!” rating to the claim — in a fundraising ad for Rep. Matt Rosendale (R-Mont.) — that Anthony Fauci, former director of the National Institute of Allergy and Infectious Diseases, “brought COVID to Montana” a year before it spread through the U.S., among other spurious claims.

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

Julie Rovner: Alabama Daily News’ “Alabama Lawmakers Briefed on New ‘ALL Health’ Insurance Coverage Expansion Plan,” by Alexander Willis.

Alice Miranda Ollstein: Stat’s “FDA Urged to Move Faster to Fix Pulse Oximeters for Darker-Skinned Patients,” by Usha Lee McFarling.

Sarah Karlin-Smith: The Atlantic’s “GoFundMe Is a Health-Care Utility Now,” by Elisabeth Rosenthal.

Rachana Pradhan: North Carolina Health News’ “Atrium Health: A Unit of ‘Local Government’ Like No Other,” by Michelle Crouch and the Charlotte Ledger.

Also mentioned on this week’s podcast:

• Sage Journals’ “Retraction Notice.”
• KFF Health News’ “Halfway Through ‘Unwinding,’ Medicaid Enrollment Is Down About 10 Million,” by Phil Galewitz.
• KFF Health News’ “Congressman Off-Base in Ad Claiming Fauci Shipped Covid to Montana Before the Pandemic,” by Katheryn Houghton.

click to open the transcript

Transcript: To End School Shootings, Activists Consider a New Culprit: Parents

KFF Health News’ ‘What the Health?’Episode Title: To End School Shootings, Activists Consider a New Culprit: ParentsEpisode Number: 333Published: Feb. 8, 2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Feb. 8, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this, so here we go. Today, we are joined via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Karlin-Smith: Hi, everybody.

Rovner: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Hi, Julie.

Rovner: No interview today, so we will get straight to the news. We’re going to start in Michigan this week, where a jury convicted the mother of a teenager, who shot 10 of his high school classmates and killed four of them, of involuntary manslaughter. This is the first time the parent of an underage mass school shooter has been successfully prosecuted. The shooter’s father will be tried separately starting next month. Some gun control advocates say this could open the door to lots more cases like this, but others think this may have been a one-off because prosecutors had particularly strong evidence that both parents should have known that their son was both in mental distress and had easy access to their unlocked gun. Is this possibly a whole new avenue to pursue for the whole “What are we going to do about school shooters?” problem?

Ollstein: I mean, it seems like we’re just in an era where people are just trying various different things. I mean, there was ongoing efforts to try to hold gun manufacturers liable. There were efforts on a lot of different fronts. And the goal is to prevent more shootings in the future and prevent more deaths. And so, I think the goal here is to impress upon other parents to be more responsible in terms of weapon storage and also in terms of being aware of their child’s distress.

So, whether or not that happens, I think, remains to be seen, but these shootings have just gone on and on and on and not slowed down. And so, I think there’s just a desperation to try different solutions.

Rovner: Yeah. Apparently in other states they’re starting to look at this, but I guess we talk so much about the chilling effect. That’s actually what they’re going for here, right? As you say, to try and get parents to at least be more careful if they have guns in the house of how they’re storing them, and who has access to them.

Well, we will turn to abortion now. As we noted last week, the Supreme Court will hear the case challenging the FDA’s approval of the abortion drug mifepristone on March 26. We’ll get to some of the amicus briefs that are flooding in, in a minute. But I think the most surprising thing that happened this week is that two of the journal studies that the appeals court relied on in challenging the FDA’s actions were officially retracted this week by the journal’s publisher, Sage.

In a very pointed statement, Sage editors wrote that it had been unaware that the authors, and in one case one of the peer reviewers, were all affiliated with anti-abortion advocacy organizations and that the articles were found by a new set of peer reviewers to have, “fundamental problems with study design and methodology, unjustified or incorrect factual assumptions, material errors in the author’s analysis of the data.” And a lot more problems I won’t get into, but we will post the link to the entire statement in our show notes.

Now, close listeners to the podcast might remember that we talked about this last August, when a pharmacy professor in Georgia alerted the journals to some of the substantive and political problems, and Sage printed something at the time called an expression of concern. Alice, these articles were cited many times in both the lower-court and the appeals-court rulings. What does it mean that they’ve been formally disavowed by their publisher?

Ollstein: It’s really hard to tell what it’s going to mean because we’re in an era where facts don’t always matter in the courts. I mean, we had recently a whole Supreme Court case about a wedding website designer that was based on facts that did not turn out to be true about their standing. The football coach who prayed on the 50-yard line turned out to not be a true story.

And so, it’s really hard to tell. And pro-abortion rights groups have been arguing that evidence cited by the lower court was not scientifically sound. And so, it’s this “flood the zone with competing studies.” And the average person is just confused and throws up their hands. So, in terms of how much it’ll matter, I’m not sure. You already have the groups in question behind the retracted study accusing the publisher of bias. I think this back-and-forth and finger-pointing will continue, and it’s unclear what effect it’ll actually have in court.

Pradhan: I think the thing that I find troubling about it is it’s … and it’s happened with other issues too. It certainly happened during the covid-19 pandemic, where people would say that there would be research or science via press release instead of academic research really undergoing the controls that it is meant to undergo before it’s released and published in a journal. And I hope at the very least that it leads to this, if we’re going to get some amount of good change, it’s that it really does reinforce the need for really rigorous checks, regardless of what the subject of the study is, because clearly these things, it has real consequences.

And frankly, I mean, look at one of the best-known examples of a retracted study which links vaccines to autism. I mean, that happened. It was widely discredited after the fact, and it is still doing harm in society, even though it’s been retracted and the researcher discredited. So, I think it really underscores the importance. I hope that frankly some of these journals get their act together before they publish things that … because it’s too little too late by the time that the damage has been done already.

Rovner: Yeah, I feel like I would say the judicial version of the journalistic “he said, she said.”

Ollstein: I mean, that’s such a good point by Rachana about how the damage is already done in the public understanding of it. But I also am pretty cynical about the ramifications in court specifically, particularly given the fact that the same lower court that cited these studies also cited things that weren’t peer-reviewed or published in medical journals at all. Things that were just these online surveys of self-reported problems with abortion pills. And so, there doesn’t seem to be a clear bar for scientific rigor in the courts.

Karlin-Smith: I was going to say that gets to this fundamental issue in this case, which is: Are judges capable of really assessing the kinds of evidence you need to make these decisions or whether we should trust the FDA and the people we’ve charged with that to do that? Because they know how to look at research papers and the range of research papers out there and evaluate what science is credible, what’s been replicated, look for these problems.

Because if you want to make an argument, you probably can always find one scientific paper or two scientific paper that might seem like it was published in some journal somewhere that can help support your point, but it’s being able to really understand how science works and back it up with that breadth of evidence and the accurate and really reliable evidence.

Rovner: Yeah. I would note that one of the amicus briefs came from a bunch of former heads of the FDA who are very concerned that judges are taking on, basically, the kind of scientific questions that have been ceded to the expertise of the FDA over many, many generations. I don’t remember another amicus brief like this coming from former FDA commissioners banding together. Have you seen this before?

Karlin-Smith: Yeah. I mean, I certainly can’t think of something like it, but I haven’t necessarily scoured the history books to make sure of it, but it is pretty unusual. I did actually note that [former President Donald] Trump’s two FDA commissioners are not among the alive possible FDA commissioners who could have joined in, that didn’t join in on this one, which is interesting.

Ollstein: Oh, I just think that we’re seeing a lot of the medical community that has previously tried to stay above the fray now feeling like this is such a threat to the practice of medicine and regulatory scientific bodies that they feel like they have to get involved, where they didn’t before. And now you’ve reported a lot on how much the AMA [American Medical Association] has changed over time.

But I think seeing these folks in the medical community that aren’t exactly waving a flag at the front of the abortion rights parade really speaking out about this, and it’s a really interesting shift.

Pradhan: It’s certainly a case that challenges the administrative state, if you will, right? Like the one about mifepristone, about FDA’s expertise in science and scientific background in assessing whether a drug should be approved or not.

But as you all know, there’s another case going before the Supreme Court that challenges what’s known as the Chevron doctrine, which is how the agencies are relied upon to interpret federal laws and court rulings, and it’s their expertise that is deferred to, that also is now, I think being questioned and very well could be undermined potentially next year. So, who else? I guess it’s either judges or lawmakers that are supposed to be the ones that truly know how to implement various laws, instead of the folks that are working at these agencies.

Rovner: As you say, this is a lot broader than just the abortion pill. One of the briefs that I didn’t expect to see came from the former secretaries of the Army, Navy, and Air Force who argued that restricting medication abortion would threaten military readiness by hurting recruitment and retainment and the ability for active women service members in states that ban abortion to basically be able to serve. I did not have that particular amicus on my bingo card, but, Alice, this is becoming a bigger issue. Right?

Ollstein: Well, it’s just interesting because I think about the Biden administration policy supporting service members traveling across state lines for an abortion if they’re stationed in a state where it’s now banned. And the administration has been defending that policy from attacks from Capitol Hill, et cetera, and saying, “Look, we’re not backing this policy because it’s some high-minded abortion right priority. We’re backing this because they think it’s good for the military itself.”

And so, I think this amicus brief is making that same case and saying, having tens of thousands of service members lose access to decision-making ability would really hurt the military. So, I think that’s an interesting argument. Again, like these medical groups, you don’t see the military making this kind of case very often and you might not see it under a different administration.

Rovner: Yeah. It’s yet another piece of this that’s flowing out. Well, not everything on abortion is happening in Washington. The states are still skirmishing over whether abortion questions should even appear on ballots this fall. The latest happened in Florida this week, where the Supreme Court there heard arguments about a ballot question that would broadly guarantee abortion rights in the state. Alice, you were watching that, yes?

Ollstein: Yeah. It was an interesting mixed bag because most of the current state Supreme Court was appointed by [Republican Gov.] Ron DeSantis. These are very conservative people, a lot of them are very openly anti-abortion, and were making that clear during the oral arguments, and they were repeating anti-abortion talking points about what the amendment would do. But at the same time, they seemed really skeptical of the state’s argument that they should block it and kill it.

They were saying, “Look, it’s not our job to decide whether this amendment is good or not. It’s our job to decide whether the language is deceptive or not, whether voters who go to vote on it will understand what they’re voting for and against.” And so, they had this whole analogy of, “Is this a wolf in sheep’s clothing or is it just a wolf?” They seem to be leaning towards “it’s just a wolf” and voters can decide for themselves if they think it’s good or bad.

Rovner: Well, my favorite fun fact out of this case yesterday is that one of the five Republican members of the seven-member Florida Supreme Court is Charles Kennedy, who, when he was serving in the House in the 1990s, was the first member of Congress to introduce a bill to ban “partial-birth” abortion. So, he was at the very, very forefront of that very, very heated debate for many years. And now he is on the Florida Supreme Court, and we will see what they say.

Do we have any idea when we’re expecting a decision? Obviously, ballots are going to have to be printed in the not-too-distant future.

Ollstein: Yes. So, the court has to rule before April 1, otherwise the ballot measure will automatically go forward. And so, they can either rule to block it and kill it, they can rule to uphold it, or they can do nothing and then it’ll just go forward on its own.

Pradhan: The thing that — what I keep thinking about too is so, OK, they’ve indicated that they have to rule, right, by April 1. But then we also have this separate pending matter of what is the status of the six-week ban that is still blocked currently? And I just keep wondering, I’m like, how much could change over the course of 2024? We still don’t have a decision on that, even though that’s been pending for much longer. No?

Rovner: Yeah. Where is the Florida six-week ban? It’s not in effect, right?

Ollstein: Yes. There was the hearing on the 15-week ban, and if that gets upheld, the six-week ban automatically goes into effect after a certain period of time. So, we’re waiting on a ruling on the 15-week ban, which will determine the fate of the six-week ban, and then the ballot measure could wipe out both, potentially.

Pradhan: Right. So, it’s very topsy-turvy.

Ollstein: It’s very simple, very simple.

Pradhan: Right. Yeah. I mean, even just the 15-week ban and the six-week ban, to me, at first it was counterintuitive to think, “Oh, so either both of them stand or neither of them do.” So, it seems like we could be in for many, many changes in Florida this year, but I’m very curious about when that is going to happen because it’s been much longer since … rather than the abortion rights ballot measure for this year.

Rovner: And meanwhile, I mean, Florida is a really key state in this whole issue because it’s one of the only states in the South where abortion is still available, right?

Ollstein: Right. And we saw how important it’s become in the data where the number of abortions taking place plummeted in so many states, but in Florida, they’ve actually gone up since Dobbs, even with the 15-week ban in place. A lot of that is people coming from surrounding states. And so, it is really pivotal, and I think that’s why you’re seeing these big national groups like Planned Parenthood really prioritizing it, and there’s so many different ballot measure fights going on, but I think you’re seeing a lot of resources go to Florida, in part for that reason.

Rovner: We will keep an eye on it. Well, we have not talked about Medicaid in a while, and conveniently, my KFF Health News colleague Phil Galewitz has an interesting story this week that halfway through the largest eligibility redetermination in history, Medicaid rolls nationwide are down net about 10 million people or at roughly the number that they were before the pandemic. Rachana, you spend a lot of time looking at Medicaid. Does that surprise you, that the rolls ended up where they were before?

Pradhan: I think, no, not necessarily. Our esteemed KFF colleague Larry Levitt put it really well in the story Phil wrote, which is that the rapid clip at which this is happening is obviously notable, right? It is not normal for how fast enrollment is declining.

I do think the thing that I wish we had, and we only, I think maybe from a state or two know this, but we certainly don’t have nationwide data and won’t for several years, but how many of these people are becoming uninsured? I think at the end of the day, that’s really what big picture-wise matters. Right? But I think certainly, I mean, the unwinding is still occurring. We’re still probably going to have disenrollments that will, I think at least through basically the first half of this year, certain states are still going to take that long. And so, we really won’t know the full picture for obviously a little bit, but I thought that Phil’s piece was really interesting and on point, for sure.

Rovner: Yeah. We talked about how many more people joined the exchanges this year, on now ACA [Affordable Care Act] coverage. Anecdotally, we know that a lot of those came from being disenrolled from Medicaid, and obviously Medicaid is always full of churn. People get jobs and they get job insurance, and they go on, and then other people lose jobs and they lose their job insurance and they qualify for Medicaid. So, there’s always a lot of ups and downs.

But I’m just wondering, the rolls had gotten so swell during the pandemic when states were not allowed to take people off, that I think it will be interesting that when this is all said and done, Medicaid rolls end up where you would’ve expected them to be had there not been a pandemic, right?

Pradhan: Right. I think that what’ll be interesting to see is, I mean, we have some sense of ACA marketplace enrollment, the way it increased this past open enrollment, but again, we don’t know if some of those Medicaid enrollees, how many of them have shifted to job-based plans, if they have at all, or if they’ve just fallen off the rolls entirely.

One of the other things I think about also is the macro-level picture, of course, is important and good, but knowing who has lost their coverage is also … and so, children, I think have been impacted quite a lot by these disenrollments, and so that’s certainly something to keep in mind and keep an eye on. Right?

Rovner: Yeah. And I know, I mean, the federal government obviously has, I think, more data than they’re sharing about this because we know they’ve quietly or not so quietly told some states that they wish they were doing things differently and they should do things differently. But I think they’re trying very hard not to politicize this. And so, I think it’s frustrating for people who are trying to follow it because we know that they know more than we know, and we would like to know some of the things that they know, but I guess we’re not going to find out, at least not right away.

Well, so remember that work requirement that Georgia got permission to put in, as opposed to just expanding Medicaid? Georgia, remember, is one of the 10 states that have yet to expand Medicaid under the Affordable Care Act. Well, now Georgia is suing the Biden administration to try to keep their experiment going, which seems like a lot of trouble for a program that has enrolled only 2,300 of a potential pool of 100,000 people. Why does Georgia think that extending its program is going to increase enrollment substantially? Clearly, this is not going over in a very big way for the work requirements. Alice, you’ve been our work-requirement person. I’ll bet you’re not surprised.

Ollstein: So, the state’s argument is that all of the back-and-forth with the administration before they launched this partial, limited, whatever you want to call it, expansion, they say that that didn’t give them enough time to successfully implement it and that they shouldn’t be judged on the small amount of people they’ve enrolled so far. They should be given more time to really make it a success.

We don’t have a ton of data of what it looks like when states really go all in on these work requirements, but what we have shows that it really limits enrollment and a lot of people who should qualify are falling through the cracks. So, I don’t know if more time would help here, in Georgia and in some other states that haven’t expanded yet. There’s a real tussle right now between the people who just want to take the federal help and just do a real, full expansion like so many other states have done, and those who want to put more of a conservative stamp on the idea and feel like they’re not just wholeheartedly embracing something that they railed against for so many years.

Rovner: Yeah. Just a gentle reminder that the majority of people on Medicaid either are working or cannot work or are taking care of someone who cannot work. And that in the few states that tried to implement work requirements, the problem wasn’t so much that they weren’t working, it’s that they were having trouble reporting their work hours, that that turned out to be a bigger issue than actually whether or not they were … the perception that, I guess, from some of these state leaders that people on Medicaid are just sitting at home and collecting their Medicaid, turns out not to be the case, but that doesn’t mean that people don’t get kicked off the program likely when they shouldn’t.

I mean, that’s what we saw, Alice, you were in … it was Arkansas, right, that tried to do this and it all blew up?

Ollstein: That’s right. And there were other factors there that made it harder for folks to use the program. But I mean, everywhere that’s tried this, it shows that the administrative burdens of having to report hours trip people up and make it so that people who are working still struggle to prove they’re working or to prove they’re working in the right way in order to qualify for insurance that they theoretically should be entitled to.

Rovner: Well, before we leave Medicaid for this week, I want to talk about the newest state trend, which is using Medicaid money to help pay for housing for people who are homeless or at risk of eviction. California is doing it, so are Arizona and Oregon; even Arkansas is joining the club. All of them encouraged by the Biden administration.

The idea is to keep people from ending up in places that are even more expensive for taxpayers, in hospitals or jails or nursing homes, and that so very many health problems cannot be addressed unless patients have a stable place to live. But pouring money earmarked for health services into housing is a really slippery slope, isn’t it? I mean, we obviously have a housing crisis, but it’s hard to feel like Medicaid’s going to be able to plug that hole very effectively.

Karlin-Smith: I feel like that’s where some of the debate is moving next, which is there’s certainly lots of evidence that shows how much being unhoused impacts somebody’s health and their life span and so forth. But state Medicaid programs have to balance their budget and are usually not unlimited. And for me, in following drugs, that’s been a big issue with some of the really new expensive drugs coming on the market is it’s not that Medicaid doesn’t necessarily want to cover it, it’s that if they cover it, they might have to cut some other health service somewhere else, which they also don’t want to cut.

So, I think maybe this evidence of the ability to improve health through housing might have to lead to thinking about, OK, how do we change our budgets or our systems to ensure we’re actually tackling that? But I’m not sure that long-term, unless we really expand the funding of Medicaid, you can really continue doing that and serve all the traditional health needs Medicaid serves.

Pradhan: Yeah, I mean, if you think about Medicaid, I mean, just going back to the bread and butter of reimbursement of providers. I mean, everyone knows that it’s bad, right? It’s too low, it’s lower than Medicare, it’s lower than commercial insurance, and it affects even a Medicaid enrollee’s ability to see a primary care doctor, specialists. I mean, because there are clinicians that will not accept Medicaid as a form of insurance because they lose too much money on it.

And so, I think this is, it’s interesting, I think there’s this big philosophical debate of, is this Medicaid’s problem? Should it be paying for this type of need when there are so many other, you could argue, unmet needs in the program that you could be spending money on? But these states are not necessarily doing that. And so, I think, obviously, I think it would help to have housing stability, but it, for me, raises these broader questions of, but look at all these other things. Like Sarah said, being able to afford drugs that are expensive, but also are quite effective potentially and could really help people. But they’re already scrambling to do those basic things and now they’re moving on to, is it a new shiny toy? Or, something that’s obviously important, but then you’re ignoring some of the other challenges that have existed for a long time.

Rovner: And housing is only one of these social determinants of health that people are trying to address. And it’s absolutely true. I mean, nobody suggests that not having housing and nutrition and lots of other things very much affect your health, and if people have them, they’re very much likely to do better health-wise. But whether that should all fall to the Medicaid program is something that I think is going to have to be sorted out.

Well, back here in Washington, Congress is having some kind of week, mostly not on health care. So, if you’re interested in the gory details, you’re going to have to find them someplace else. But in the midst of the chaos, the House yesterday did manage to pass a bill called the Protecting [Health] Care for [All] Patients Act [of 2022], which certainly sounds benign enough. Its purpose is to ban the use of a measurement called quality-adjusted life years or QALYs, as they’re known. But Sarah, this is way more controversial than it seems, right? Particularly given the bill passed on a party-line vote.

Karlin-Smith: To back up a little bit, quality-adjusted life years, or QALYs, it’s basically a way to figure out cost-effectiveness or what’s a fair price of a product based on the dollar amount that they’re saying it costs per year of quality of your life extended. So, it’s not just taking into account if your life’s extended, but the quality of your life during that time.

And a lot of people have trouble with that metric because they feel like it unfairly penalizes people with disabilities or conditions where the quality of your life might not seem quite the same as somebody who a drug can make you almost perfectly healthy, if that makes sense? And so actually, Democrats are fairly in alignment with Republicans on not being huge fans of the QALY, that particular measure. It’s actually already banned in Medicare, but they are concerned that the way Republicans drafted this bill, it could make it pretty much hard to use any kind of metric that tries to help programs, state agencies, the VA, figure out what’s a fair price to pay for a drug. And then you get into really difficult problems figuring out what to cover, how to negotiate with a drug company for that.

So, Democrats have actually been pushing Republicans to take out some language that might basically narrow the bill or ensure you could use some other measures that are similar to QALYs, but they argue is a bit fairer for the entire populace. So, something that potentially down the road there could be some bipartisan agreement to ban this measure. I think the concern from people who work in the health economist space is that it does make people, I think, uncomfortable thinking about placing this dollar value on life.

But the flip side is, is that again, every drug that saves your life, we can’t spend a billion dollars on it. Right? And so, we have to come up with some way to effectively figure out how to bargain and deal with the drugmakers to figure out what is a fair price for the system. And these are tools to do it, and they’re really not meant to penalize people on an individual basis, because, again, if the drug is priced way too high, regardless of how beneficial it is, the system and you are not going to be able to afford it. It’s a way of figuring out, OK, what is a fair price based on what this does for you? And also then incentivize drug companies to develop drugs that at the price are really a good benefit for the price.

Rovner: It’s so infuriating because I mean, Congress and health policy experts and economists have been talking about cost-effectiveness measures for 30 years, and this was one of the few that there were, and obviously everybody agrees that it is far from perfect and there are a lot of issues. But on the other side, you don’t want to say, “Well, we’re just not going to measure cost-effectiveness in deciding what is allowed.” Which essentially is where we’ve been and what makes our system so expensive, right?

Karlin-Smith: Right. I mean, you can imagine, like, if you thought about other things that are crucial in your life, like I sometimes think about it, it makes it easier if I think about water, OK, everybody needs water to live. If we let the water utilities charge us $100,000 for every jug of water, we would get into problems.

So again, I think the people that use these metrics and try and think about it, they’re not trying to penalize people or put a price on life in the way I think the politicians use it to get out of this. They’re trying to figure out, how do we fairly allocate resources in society in an equitable way? But it can be easily politicized because it is so hard to talk about these issues when you’re thinking about your health care and what you have access to or not.

Rovner: We will watch this as it moves through what I’m calling the chaotic Congress. Turning to “This Week in Health Misinformation,” we have a story from KFF Health News’ Katheryn Houghton for PolitiFact that earned a rare “Pants on Fire!” rating. It seems that a fundraising ad for Republican congressman Matt Rosendale of Montana, who’s about to become Senate candidate Matt Rosendale of Montana, claims that former NIH [National Institutes of Health] official Tony Fauci brought covid to Montana a year before the pandemic. In other forums, Rosendale has charged that an NIH researcher at Rocky Mountain Laboratories infected bats with covid from China. It actually turns out that the laboratory was studying another coronavirus entirely, not the coronavirus that causes covid, the covid that we think of, and that the virus wasn’t actually shipped, but rather its molecular sequence was provided. To quote from this story, “Rosendale’s claim is wrong about when the scientists began their work, what they were studying, and where they got the materials.” But other than that, these kinds of scary claims keep getting used because they work in campaigns. Right?

Karlin-Smith: It taps into this theme that we’ve seen that Republicans on the Hill have certainly been tapping into over the past year or two of whether covid came from a lab and what funding from the U.S. to China contributed to that, and what do people in the U.S., particularly connected to Democrats, know that they’re not saying.

So, even though as you start to dig into this story and you see every level how it’s just not true, the surface of it, people have already been primed to believe that this is occurring, and it’s been how we do this sort of research in this country has already been politicized. So, if you just see a clip, people are easily persuaded.

Rovner: Yes. I think it was Alice, we started out by saying we’ve become a fact-free society. I think this is another example of it. All right, well that is this week’s news.

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

Pradhan: Oh, sure. The story I wanted to highlight was from North Carolina Health News. It is focusing on a very large health system known as Atrium Health, which is based in Charlotte, North Carolina. And basically, it’s really interesting, it talks about how Atrium actually operates under a public hospital authority. So, it enjoys certain benefits of being a public or government entity, including they avoid millions in state and federal taxes. They have the power of eminent domain, and they are not subject to antitrust regulations.

And again, this is one of the largest health systems in North Carolina, but it’s playing it both ways. Right? It tries to use the advantages of being a public entity like the ones I just named, but when it comes to other requirements to have checks and balances in government, as we do with various levels of government, like having open public meetings, being able to ask for public comment at these meetings and the like, Atrium does not behave like a government entity at all.

I would also note, as an aside, Atrium was, in the past, one of the most litigious hospital systems in North Carolina. They sued their patients for outstanding medical debt until they ended the practice last year. And so, it’s a really interesting story. So, I enjoyed it.

Rovner: It was a really interesting story. Sarah.

Karlin-Smith: I looked at a piece in the Atlantic from KFF [Health] News editor Elisabeth Rosenthal, “GoFundMe Is a Health-Care Utility Now,” and she tracks the rise of people in the U.S. using GoFundMe to help pay for medical bills, which I think, at first, maybe doesn’t seem so bad if people are having another way to help them pay for medical expenses. But she shows how it’s a band-aid for much bigger problems in an unfair and inequitable system. And, really, also documents how it tends to perpetuate the already existing socioeconomic disparities.

So, if you’re somebody who’s famous or has a lot of friends or just has a lot of friends with money, you’re more likely to actually have your crowdfunding campaign succeed than not. And talking about how health systems are actually directing patients there to fund their medical debt. So, it’s just one of those trends that highlights the state of where the U.S. health system is and that our health insurance system, which is in theory supposed to do what GoFundMe is now an extra band-aid for, which is, you pay money over time so that when you are sick, you’re not hit with these huge bills. But that obviously isn’t the case for many people.

Rovner: Indeed. Alice.

Ollstein: So, I have a piece from Stat’s Usha Lee McFarling, and it’s about the FDA coming under pressure to act more quickly now that they know that pulse oximeters, which were really key during the worst months of the covid pandemic for detecting who needed to be hospitalized, that they don’t work on people of color, they don’t work as well on detecting blood oxygen.

And so, it’s a really fascinating story about, now that we know this, how quickly are regulators going to act and how can they act? But also going forward, this is what happens when there’s not enough diversity in clinical trials. You don’t find out about really troubling racial disparities in efficacy until it’s too late and a lot of people have suffered. So, really curious about what reforms come out of this.

Rovner: Yeah, me too. Well, my extra credit this week is from the Alabama Daily News, and it comes with the very vanilla-sounding headline “Alabama Lawmakers Briefed on New ‘ALL Health’ Insurance Coverage Expansion Plan,” by Alexander Willis. Now, Alabama is also one of the 10 remaining states that have not expanded Medicaid under the Affordable Care Act, much to the chagrin of the state’s hospitals, which would likely have to provide much less free care if more low-income people actually had insurance, even Medicaid, which, as Rachana points out, doesn’t pay that well. The plan put forward by the state hospital association would create a public-private partnership where those who are in the current coverage gap, the ones who earn too much for Medicaid now, but not enough to qualify for Affordable Care Act subsidies, would get full Medicaid benefits delivered through a private insurer. Ironically, this is basically how neighboring Arkansas, another red state, initially expanded Medicaid back in 2013. I did go and look this up when this happened. And it wasn’t even new then. But still, the plan could provide a quarter of a million people in Alabama with insurance at apparently no additional cost to the state for at least the first five years and maybe the first 10. So, another place where we will watch that space.

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

Karlin-Smith: I’m on Twitter a little bit, @SarahKarlin. And Bluesky, I’m @sarahkarlin-smith, other platforms as well.

Rovner: Alice?

Ollstein: @AliceOllstein on X, and @alicemiranda on Bluesky.

Rovner: Rachana?

Pradhan: I’m @rachanadpradhan on X, although my presence lately has been a little lacking.

Rovner: Well, you can definitely find all of us. And we will be back in your feed next week. Until then, be healthy.

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The number of older adults with disabilities — difficulty with walking, seeing, hearing, memory, cognition, or performing daily tasks such as bathing or using the bathroom — will soar in the decades ahead, as baby boomers enter their 70s, 80s, and 90s.

But the health care system isn’t ready to address their needs.

That became painfully obvious during the covid-19 pandemic, when older adults with disabilities had trouble getting treatments and hundreds of thousands died. Now, the Department of Health and Human Services and the National Institutes of Health are targeting some failures that led to those problems.

One initiative strengthens access to medical treatments, equipment, and web-based programs for people with disabilities. The other recognizes that people with disabilities, including older adults, are a separate population with special health concerns that need more research and attention.

Lisa Iezzoni, 69, a professor at Harvard Medical School who has lived with multiple sclerosis since her early 20s and is widely considered the godmother of research on disability, called the developments “an important attempt to make health care more equitable for people with disabilities.”

“For too long, medical providers have failed to address change in society, changes in technology, and changes in the kind of assistance that people need,” she said.

Among Iezzoni’s notable findings published in recent years:

Most doctors are biased. In survey results published in 2021, 82% of physicians admitted they believed people with significant disabilities have a worse quality of life than those without impairments. Only 57% said they welcomed disabled patients.

“It’s shocking that so many physicians say they don’t want to care for these patients,” said Eric Campbell, a co-author of the study and professor of medicine at the University of Colorado.

While the findings apply to disabled people of all ages, a larger proportion of older adults live with disabilities than younger age groups. About one-third of people 65 and older — nearly 19 million seniors — have a disability, according to the Institute on Disability at the University of New Hampshire.

Doctors don’t understand their responsibilities. In 2022, Iezzoni, Campbell, and colleagues reported that 36% of physicians had little to no knowledge of their responsibilities under the 1990 Americans With Disabilities Act, indicating a concerning lack of training. The ADA requires medical practices to provide equal access to people with disabilities and accommodate disability-related needs.

Among the practical consequences: Few clinics have height-adjustable tables or mechanical lifts that enable people who are frail or use wheelchairs to receive thorough medical examinations. Only a small number have scales to weigh patients in wheelchairs. And most diagnostic imaging equipment can’t be used by people with serious mobility limitations.

Iezzoni has experienced these issues directly. She relies on a wheelchair and can’t transfer to a fixed-height exam table. She told me she hasn’t been weighed in years.

Among the medical consequences: People with disabilities receive less preventive care and suffer from poorer health than other people, as well as more coexisting medical conditions. Physicians too often rely on incomplete information in making recommendations. There are more barriers to treatment and patients are less satisfied with the care they do get.

Egregiously, during the pandemic, when crisis standards of care were developed, people with disabilities and older adults were deemed low priorities. These standards were meant to ration care, when necessary, given shortages of respirators and other potentially lifesaving interventions.

There’s no starker example of the deleterious confluence of bias against seniors and people with disabilities. Unfortunately, older adults with disabilities routinely encounter these twinned types of discrimination when seeking medical care.

Such discrimination would be explicitly banned under a rule proposed by HHS in September. For the first time in 50 years, it would update Section 504 of the Rehabilitation Act of 1973, a landmark statute that helped establish civil rights for people with disabilities.

The new rule sets specific, enforceable standards for accessible equipment, including exam tables, scales, and diagnostic equipment. And it requires that electronic medical records, medical apps, and websites be made usable for people with various impairments and prohibits treatment policies based on stereotypes about people with disabilities, such as covid-era crisis standards of care.

“This will make a really big difference to disabled people of all ages, especially older adults,” said Alison Barkoff, who heads the HHS Administration for Community Living. She expects the rule to be finalized this year, with provisions related to medical equipment going into effect in 2026. Medical providers will bear extra costs associated with compliance.

Also in September, NIH designated people with disabilities as a population with health disparities that deserves further attention. This makes a new funding stream available and “should spur data collection that allows us to look with greater precision at the barriers and structural issues that have held people with disabilities back,” said Bonnielin Swenor, director of the Johns Hopkins University Disability Health Research Center.

One important barrier for older adults: Unlike younger adults with disabilities, many seniors with impairments don’t identify themselves as disabled.

“Before my mom died in October 2019, she became blind from macular degeneration and deaf from hereditary hearing loss. But she would never say she was disabled,” Iezzoni said.

Similarly, older adults who can’t walk after a stroke or because of severe osteoarthritis generally think of themselves as having a medical condition, not a disability.

Meanwhile, seniors haven’t been well integrated into the disability rights movement, which has been led by young and middle-aged adults. They typically don’t join disability-oriented communities that offer support from people with similar experiences. And they don’t ask for accommodations they might be entitled to under the ADA or the 1973 Rehabilitation Act.

Many seniors don’t even realize they have rights under these laws, Swenor said. “We need to think more inclusively about people with disabilities and ensure that older adults are fully included at this really important moment of change.”

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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Thousands of readers reacted to the articles in the “Dying Broke” series about the financial burden of long-term care in the United States. They offered their assessments for the government and market failures that have drained the lifetime savings of so many American families. And some offered possible solutions.

In more than 4,200 comments, readers shared their struggles in caring for spouses, older parents, and grandparents. They expressed anxieties about getting older themselves and needing help to stay at home or in institutions like nursing homes or assisted living facilities.

Many suggested changes to U.S. policy, like expanding the government’s payments for care and allowing more immigrants to stay in the country to help meet the demand for workers. Some even said they would rather end their lives than become a financial burden to their children.

Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for depleting the financial resources of older people, leaving the federal-state Medicaid programs to take care of them once they were destitute.

“It is incorrect to say the money isn’t there to pay for elder care,” Jim Castrone, 72, a retired financial controller in Placitas, New Mexico, commented. “It’s there, in the form of profits that accrue to the owners of these facilities.”

“It is a system of wealth transference from the middle class and the poor to the owners of for-profit medical care, including hospitals and the long-term care facilities outlined in this article, underwritten by the government,” he added.

Other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some relayed their concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.

What Other Nations Provide

Other countries’ treatment of their older citizens was repeatedly mentioned. Readers contrasted the care they observed older people receiving in foreign countries with the treatment in the United States, which spends less on long-term care as a portion of its gross domestic product than do most wealthy nations.

Marsha Moyer, 75, a retired teaching assistant in Memphis, Tennessee, said she spent 12 years as a caregiver for her parents in San Diego County and an additional six for her husband. While they had advantages many don’t, Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”

By contrast, her sister-in-law’s mother lived to 103 in a “fully funded, lovely elder care home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career, and helping her healthy but very old mother,” Moyer said. “She could have both. I had to choose.”

Birgit Rosenberg, 58, a software developer in Southampton, Pennsylvania, said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility is her pittance of Social Security, about $180 a month,” she said. “A friend recently had to put her mother into a nursing home here in the U.S. Twice, when visiting, she has found her mother on the floor in her room, where she had been for who knows how long.”

Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, dumping their $650-a-month long-term care policy because care is so much more affordable south of the border. Brad, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she can afford with her Social Security payments and an annuity. She is receiving “amazing” care, he said.

“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is amazing, all health care, here, actually. At her home, they address her as Mom or Barbarita, little Barbara.”

Insurance Policies Debated

Many, many readers said they could relate to problems with long-term care insurance policies, and their soaring costs. Some who hold such policies said they provided comfort for a possible worst-case scenario while others castigated insurers for making it difficult to access benefits.

“They really make you work for the money, and you’d better have someone available who can call them and work on the endless and ever-changing paperwork,” said Janet Blanding, 62, a technical writer in Fancy Gap, Virginia.

Derek Sippel, 47, a registered nurse in Naples, Florida, cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought a policy. He pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefit[s], but it makes me feel better knowing that I have it if I need it,” he said in his comment. He said he could not make that kind of money by investing on his own.

“It’s the risk you take with any kind of insurance,” he said. “I don’t want to be a burden on anyone.”

Pleas for More Immigrant Workers

One solution that readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank executive in Woodside, California, said that over time, his parents had six caretakers who were immigrants. “There is no magic bullet,” he said, “but one obvious step — hello, people — we need more immigrants! Who do you think does most of this work?”

Victoria Raab, 67, a retired copy editor in New York, said that many older Americans must use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margins of labor regulations.”

“These exemplary populations should be able to fill caretaker roles transparently in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers of their skill and positive cultural attitudes toward the elderly,” Raab said.

Federal Fixes Sought

Other readers called for the federal government to create a comprehensive, national long-term care system, as some other countries have. In the United States, federal and state programs that finance long-term care are mainly available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are fairly nonexistent.

“I am a geriatric nurse practitioner in New York and have seen this story time and time again,” Sarah Romanelli, 31, said. “My patients are shocked when we review the options and its costs. Medicaid can’t be the only option to pay for long-term care. Congress needs to act to establish a better system for middle-class Americans to finance long-term care.”

John Reeder, 76, a retired federal economist in Arlington, Virginia, called for a federal single-payer system “from birth to senior care in which we all pay and profit-making [is] removed.”

Other readers, however, argued that people needed to take more responsibility by preparing for the expense of old age.

Mark Dennen, 69, in West Harwich, Massachusetts, said people should save more rather than expect taxpayers to bail them out. “For too many, the answer is, ‘How can we hide assets and make the government pay?’ That is just another way of saying, ‘How can I make somebody else pay my bills?’” he said, adding, “We don’t need the latest phone/car/clothes, but we will need long-term care. Choices.”

Questioning the Value of Life-Prolonging Procedures

A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.

Thomas Thuene, 60, a consultant in Boston’s Roslindale neighborhood, described how a friend’s mother who had heart failure was repeatedly sent from the elder care facility where she lived to the hospital and back, via ambulance. “There was no arguing with the care facility,” he said. “However, the moment all her money was gone, the facility gently nudged my friend to think of end-of-life care for his mother. It seems the financial ruin is baked into the system.”

Joan Chambers, 69, an architectural draftsperson in Southold, New York, said that during a hospitalization on a cardiac unit she observed many fellow patients “bedridden with empty eyes,” awaiting implants of stents and pacemakers.

“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die from heart failure. It will take courage for a family member to refuse a ‘simple’ procedure that will keep a loved one’s heart beating for a few more years, but we have to stop this cruelty.

“We have to remember that even though we are grateful to our health care professionals, they are not our friends. They are our employees and we can say no.”

One physician, James Sullivan, 64, in Cataumet, a neighborhood of Bourne, Massachusetts, said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of heartache, treating demented people for pneumonia, urinary tract infections, cancers, things that are going to kill them sooner or later, for no meaningful benefit,” Sullivan said. “I would not want my son to spend his good years, and money, helping to maintain me alive if I don’t even know what’s going on,” he said.

Considering ‘Assisted Dying’

Others went further, declaring they would rather arrange for their own deaths than suffer in greatly diminished capacity. “My long-term care plan is simple,” said Karen Clodfelter, 65, a library assistant in St. Louis. “When the money runs out, I will take myself out of the picture.” Clodfelter said she helped care for her mother until her death at 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”

Some suggested that medically assisted death should be a more widely available option in a country that takes such poor care of its elderly. Meridee Wendell, 76, of Sunnyvale, California, said: “If we can’t manage to provide assisted living to our fellow Americans, could we at least offer assisted dying? At least some of us would see it as a desirable solution.”

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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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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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.

What to Know About Assisted Living

The facilities can look like luxury apartments or modest group homes and can vary in pricing structures. Here’s a guide.

Read More

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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