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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For her and millions of other Americans, that’s the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, doesn’t produce enough of the hormones needed for the body to regulate metabolism.

There’s no cure for Hashimoto’s or hypothyroidism. But VanOrden, who lives in Athens, Texas, started taking levothyroxine, a much-prescribed synthetic thyroid hormone used to treat common symptoms, like fatigue, weight gain, hair loss, and sensitivity to cold.

Most patients do well on levothyroxine and their symptoms resolve. Yet for others, like VanOrden, the drug is not as effective.

For her, that meant floating from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year.

“I look and act like a pretty energetic person,” said VanOrden, 38, explaining that her symptoms are not visible. “But there is a hole in my gas tank,” she said. And “stress makes the hole bigger.”

Autoimmune diseases occur when the immune system mistakenly attacks and damages healthy cells and tissues. Other common examples include rheumatoid arthritis, lupus, celiac disease, and inflammatory bowel disease. There are more than 80 such diseases, affecting up to an estimated 50 million Americans, disproportionately women. Overall, the cost of treating autoimmune diseases is estimated at more than $100 billion annually in the U.S.

Despite their frequency, finding help for many autoimmune diseases can prove frustrating and expensive. Getting diagnosed can be a major hurdle because the range of symptoms looks a lot like those of other medical conditions, and there are often no definitive identifying tests, said Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta. In addition, some patients feel they have to fight to be believed, even by a clinician. And after a diagnosis, many autoimmune patients rack up big bills as they explore treatment options.

“They’re often upset. Patients feel dismissed,” Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, said of some patients who come to her for help.

Insufficient medical education and lack of investment in new research are two factors that hinder overall understanding of hypothyroidism, according to Antonio Bianco, a University of Chicago endocrinologist and leading expert on the condition.

Some patients become angry when their symptoms don’t respond to standard treatments, either levothyroxine or that drug in combination with another hormone, said Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We will have to remain open to the possibility that we’re missing something here,” he said.

Jennifer Ryan, 42, said she has spent “thousands of dollars out-of-pocket” looking for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident — diagnosed with Hashimoto’s after years of fatigue and weight gain — because her levels appeared normal. She recently switched doctors and hopes for the best.

“You don’t walk around hurting all day long and have nothing wrong,” Ryan said.

And health insurers typically deny coverage of novel hypothyroidism treatments, said Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which sees patients from all 50 states. “Insurance companies want you to use the generics even though many patients don’t do well with these treatments,” she said.

Meanwhile, the extent of Americans’ thyroid problems can be seen in drug sales. Levothyroxine is among the five most prescribed medications in the U.S. every year. Yet research points to some overprescribing of the drug for those with mild hypothyroidism.

A recent study, paid for by AbbVie — maker of Synthroid, a brand-name version of levothyroxine — said a medical and pharmacy claims database showed that the prevalence of hypothyroidism, including milder forms, rose from 9.5% of Americans in 2012 to 11.7% in 2019.

The number of people diagnosed will rise as the population ages, said McAninch. Endocrine disruptors — natural or synthetic chemicals that can affect hormones — could account for some of that increase, she said.

In their search for answers, patients sometimes connect on social media, where they ask questions and describe their thyroid hormone levels, drug regimens, and symptoms. Some online platforms offer information that’s dubious at best, but overall, social media outlets have increased patients’ understanding of hard-to-resolve symptoms, Bianco said.

They also offer one another encouragement.

VanOrden, who has been active on Reddit, has this advice for other patients: “Don’t give up. Continue to advocate for yourself. Somewhere out there is a doctor who will listen to you.” She has started an alternative treatment — desiccated thyroid medication, an option not approved by the FDA — plus a low dose of the addiction drug naltrexone, though the data is limited. She’s feeling better now.

Research of autoimmune thyroid disease gets little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment hasn’t fully recognized hard-to-treat hypothyroid patients, but increased acknowledgment of them and their symptoms would help fund research, Bianco said.

“I would like a very clear, solid acknowledgment that these patients exist,” he said. “These people are real.”

For an illustrated version of this article, click here.

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

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El cansancio y las náuseas de su marido fueron tan intensas que no fue a trabajar por tres días. Pero bebió agua con lima en lugar de ir al médico porque no tienen seguro médico. “A mucha gente le pasa esto”, agregó.

No existen normas federales para proteger a los trabajadores como los García cuando los días son excesivamente calurosos. Y sin el apoyo bipartidista del Congreso, incluso con la atención urgente de la administración Biden, es posible que el alivio no llegue en años.

El presidente Joe Biden encargó en 2021 a la Administración de Seguridad y Salud Ocupacional (OSHA) la elaboración de normas para prevenir los accidentes y las enfermedades causados por el calor.

Pero ese proceso de 46 pasos puede llevar más de una década y podría estancarse si un republicano es elegido presidente en 2024, porque el Partido Republicano se ha opuesto generalmente a las regulaciones de salud laboral en los últimos 20 años.

Estas normas podrían obligar a los empleadores a proporcionar abundante agua potable, descansos y un espacio para refrescarse a la sombra o con aire acondicionado cuando las temperaturas superen un determinado umbral.

El 7 de septiembre, OSHA comenzó reuniones con propietarios de pequeñas empresas para discutir sus propuestas, incluidas las medidas que deberían adoptar las empresas cuando las temperaturas llegan a los 90 grados.

Como este verano se han batido récords de calor, la congresista Judy Chu (demócrata de California) y otros miembros del Congreso han impulsado una legislación que aceleraría el proceso de elaboración de normas de OSHA.

El proyecto de ley lleva el nombre de Asunción Valdivia, una trabajadora agrícola que se desmayó mientras recogía uvas en California en un día de 105 grados en 2004. Su hijo la recogió del campo y Valdivia murió de un golpe de calor en el trayecto a su casa.

“Ya sea en una granja, conduciendo un camión o trabajando en un almacén, los trabajadores como Asunción mantienen nuestro país en funcionamiento mientras soportan algunas de las condiciones más difíciles”, dijo Chu en declaraciones en julio en la que instaba al Congreso a aprobar el proyecto de ley.

Las organizaciones profesionales que representan a los empresarios se han opuesto a las normas, calificándolas de “exageradas”. También afirman que faltan datos que justifiquen regulaciones generales, dada la diversidad de trabajadores y lugares de trabajo, desde restaurantes de comida rápida hasta granjas.

La Cámara de Comercio de Estados Unidos, uno de los grupos de presión más poderosos de Washington, argumentó que tales medidas carecen de sentido “porque cada empleado experimenta el calor de forma diferente”. Además, según la Cámara, normas como los ciclos de trabajo-descanso “amenazan con perjudicar directa y sustancialmente… la productividad de los empleados y, por lo tanto, la viabilidad económica de su empleador”.

“Muchos de los problemas relacionados con el calor no son consecuencia del trabajo agrícola ni de la mala gestión del empresario, sino del moderno estilo de vida de los empleados”, escribió el Consejo Nacional del Algodón en su respuesta a la legislación propuesta.

Por ejemplo, el aire acondicionado hace más difícil que las personas se adapten a un ambiente caluroso después de haber estado en una vivienda o un vehículo fríos, y señaló que “los trabajadores más jóvenes, más acostumbrados a un estilo de vida más sedentario, no pueden aguantar un día trabajando al aire libre”.

La Asociación de Recursos Forestales, que representa a los propietarios de terrenos forestales, la industria maderera y los aserraderos, agregó que “las enfermedades y muertes relacionadas con el calor no figuran entre los riesgos laborales más graves a los que se enfrentan los trabajadores”. Citaron cifras de OSHA: la agencia documentó 789 hospitalizaciones y 54 muertes relacionadas con el calor a través de investigaciones e infracciones de 2018 a 2021.

OSHA admite que sus datos son cuestionables. Ha dicho que sus cifras “sobre enfermedades, accidentes y muertes relacionadas con el calor en el trabajo son probablemente grandes subestimaciones”.

Los accidentes y enfermedades no siempre se registran, las muertes provocadas por las altas temperaturas no siempre se atribuyen al calor, y los daños relacionados con el calor pueden ser acumulativos, provocando infartos, insuficiencia renal y otras dolencias después de que la persona haya abandonado su lugar de trabajo.

El efecto de la temperatura

Para establecer normas, OSHA debe conocer los efectos del calor en los que trabajan en interiores y al aire libre. La justificación es una parte necesaria del proceso, porque las normativas aumentarán los costos para los empresarios que necesiten instalar sistemas de aire acondicionado y ventilación en el interior, y para aquellos cuya productividad pueda bajar si se permite a los que trabajan a la intemperie tomar descansos o reducir las jornadas cuando suban las temperaturas.

Lo ideal sería que los empresarios tomaran medidas para proteger a los trabajadores del calor independientemente de las normas, afirmó Georges Benjamin, director ejecutivo de la Asociación Americana de Salud Pública. “Tenemos que hacer un mejor trabajo para convencer a los empresarios de que hay una compensación entre la eficiencia y los trabajadores enfermos”, dijo.

García y su marido sufrieron los síntomas del golpe de calor: vómitos, náuseas y fatiga. Pero sus casos forman parte de los miles que no se contabilizan cuando la gente no va al hospital ni presenta denuncias por miedo a perder su empleo o estatus migratorio.

Los trabajadores agrícolas están notoriamente subrepresentados en las estadísticas oficiales sobre accidentes y enfermedades laborales, según David Michaels, epidemiólogo de la Universidad George Washington y ex administrador de OSHA.

Investigadores que encuestaron a trabajadores agrícolas de Carolina del Norte y Georgia encontraron que más de un tercio presentaba síntomas de enfermedad por calor durante los veranos analizados, una cifra muy superior a la registrada por OSHA. En particular, el estudio de Georgia reveló que el 34% de los trabajadores agrícolas no tenía descansos regulares, y una cuarta parte no tenía acceso a espacios con sombra.

Incluso los casos en los que los trabajadores son hospitalizados pueden no atribuirse al calor si los médicos no documentan la conexión. Muchos estudios relacionan los accidentes laborales con el estrés térmico, que puede causar fatiga, deshidratación y vértigo.

En un estudio realizado en el estado de Washington, se observó que los trabajadores agrícolas se caían de las escaleras con más frecuencia en junio y julio, unos de los meses más calurosos y húmedos. Y en un informe de 2021, investigadores calcularon que las temperaturas más cálidas causaron aproximadamente 20,000 accidentes laborales al año en California entre 2001 y 2018, según los reclamos de compensación de los trabajadores.

Las lesiones renales por calor también aparecen en la base de datos de OSHA de trabajadores lesionados gravemente en el trabajo, como el caso de un empleado de una planta de procesamiento de carne hospitalizado por deshidratación y lesión renal aguda en un caluroso día de junio en Arkansas.

Sin embargo, la investigación revela que el daño renal provocado por el calor también puede ser gradual. Un estudio de trabajadores de la construcción que estuvieron durante un verano en Arabia Saudita reveló que el 18% presentaba signos de lesión renal, lo que los ponía en riesgo de insuficiencia renal futura.

Además de cuantificar las lesiones y muertes causadas por el calor, OSHA trata de atribuirles un costo para poder calcular el ahorro potencial derivado de la prevención. “Hay que medir las cosas, como ¿cuánto vale una vida?”, afirmó Michaels.

Para los trabajadores y sus familias, el sufrimiento tiene consecuencias de largo alcance que son difíciles de enumerar. Los gastos médicos son más obvios. Por ejemplo, OSHA calcula que el costo directo de la postración por calor (sobrecalentamiento debido a insolación o hipertermia), es de casi $80,000 en costos directos e indirectos por caso.

Si esto parece elevado, hay que pensar en un trabajador de la construcción de Nueva York que perdió el conocimiento en un día caluroso y se cayó de una plataforma, y sufrió una laceración renal, fracturas faciales y varias costillas rotas.

El precio de los golpes de calor

Investigadores también han intentado determinar el costo que supone para los empresarios la pérdida de productividad. El trabajo es menos eficiente cuando suben las temperaturas, y si los trabajadores se ausentan por enfermedad y tienen que ser reemplazados, la producción disminuye mientras se entrena a nuevos trabajadores.

Cullen Page, cocinero de Austin, Texas, y miembro del sindicato Restaurant Workers United, trabaja durante horas frente a un horno de pizza, donde, según dijo, las temperaturas oscilaron entre los 90 y los 100 grados cuando las olas de calor golpeaban la ciudad en agosto.

“Es brutal. Afecta tu forma de pensar. Estás confundido”, dijo. “Me dio un sarpullido por calor que no se me quitaba”. Como hace tanto calor, agregó, el restaurante tiene un alto índice de rotación de empleados. Una campana extractora adecuada sobre los hornos y un mejor aire acondicionado ayudarían, pero los propietarios aún no han hecho las mejoras, dijo.

Via 313, la cadena de pizzerías en la que trabaja Page, no respondió al pedido de comentario.

Page no es el único. Una organización que representa a los empleados de restaurantes, Restaurant Opportunities Centers United, encuestó a miles de trabajadores, muchos de los cuales informaron de condiciones inseguras por el calor: el 24% de los trabajadores de Houston, por ejemplo, y el 37% de los de Philadelphia.

“Los trabajadores estuvieron expuestos a temperaturas de hasta 100 grados después de que se rompieron los aparatos de aire acondicionado y los ventiladores de las cocinas, lo que les dificultaba respirar”, escribió el Sindicato Internacional de Empleados de Servicios, que incluye a trabajadores del sector de comida rápida, en una nota a OSHA. “No hay razón para retrasar más la creación de una norma cuando conocemos la magnitud del problema y sabemos cómo proteger a los trabajadores”, dijeron.

Investigadores del Atlantic Council calculan que Estados Unidos perderá una media de $100,000 millones anuales por la baja de la productividad laboral inducida por el calor a medida que el clima se vuelve más cálido. “A los empresarios les cuesta mucho dinero no proteger a sus trabajadores”, afirmó Juley Fulcher, defensora de salud y  seguridad de los trabajadores de Public Citizen, organización de Washington D.C. que aboga por que el proyecto de ley Asunción Valdivia permita a OSHA promulgar normas el año que viene.

Como modelo, Fulcher sugirió fijarse en California, Maryland, Nevada, Oregon y Washington, los únicos estados con normas que obligan a que todos los trabajadores al aire libre tengan acceso a agua, descanso y sombra.

Aunque las normas no siempre se hacen cumplir, parece que surten efecto. Después de que California instaurara la suya en 2005, se registraron menos accidentes en los reclamos de indemnización de los trabajadores cuando las temperaturas superaban los 85 grados.

Michaels afirmó que OSHA ha demostrado que puede actuar con más rapidez de lo habitual cuando el Congreso se lo permite.

En los primeros días de la epidemia de VIH/SIDA, la agencia aprobó rápidamente normas para evitar que médicos, enfermeras y dentistas se infectaran accidentalmente con agujas. Ahora existe una urgencia similar, dijo. “Dada la crisis climática y la prolongación de los períodos de calor extremo”, señaló, “es imperativo que el Congreso apruebe una legislación que permita a OSHA promulgar rápidamente una norma que salve vidas”.

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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The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

For the first time since 2004, it appears health insurance coverage will not be a central issue in the presidential campaign, at least judging from the first GOP candidate debate in Milwaukee Wednesday night. The eight candidates who shared the stage (not including absent front-runner Donald Trump) had major disagreements over how far to extend abortion restrictions, but there was not even a mention of the Affordable Care Act, which Republicans have tried unsuccessfully to repeal since it was passed in 2010.

Meanwhile, a new poll from KFF finds that health misinformation is not only rampant but that significant minorities of the public believe things that are false, such as that more people have died from the covid vaccine than from the covid-19 virus.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Victoria Knight of Axios, and Margot Sanger-Katz of The New York Times.

Panelists

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Victoria Knight
Axios

@victoriaregisk

Read Victoria's stories

Margot Sanger-Katz
The New York Times

@sangerkatz

Read Margot's stories

Among the takeaways from this week’s episode:

• The first Republican presidential debate of the 2024 cycle included a spirited back-and-forth about abortion, but little else about health care — and that wasn’t a surprise. During the primary, Republican presidential candidates don’t really want to talk about health insurance and health care. It’s not a high priority for their base.
• The candidates were badly split on abortion between those who feel decisions should be left to the states and those who support a national ban of some sort. Former Vice President Mike Pence took a strong position favoring a national ban. The rest revealed some public disagreement over leaving the question completely to states to decide or advancing a uniform national policy.
• Earlier this summer, Stanford University’s Hoover Institute unveiled a new, conservative, free-market health care proposal. It is the latest sign that Republicans have moved past the idea of repealing and replacing Obamacare and have shifted to trying to calibrate and adjust it to make health insurance a more market-based system. The fact that such plans are more incremental makes them seem more possible. Republicans would still like to see things like association health plans and other “consumer-directed” insurance options. Focusing on health care cost transparency could also offer an opportunity for a bipartisan moment.
• In a lawsuit filed this week in U.S. District Court in Jacksonville, two Florida families allege their Medicaid coverage was terminated by the state without proper notice or opportunity to appeal. It seems to be the first such legal case to emerge since the Medicaid “unwinding” began in April. During covid, Medicaid beneficiaries did not have to go through any kind of renewal process. That protection has now ended. So far, the result is that an estimated 5 million people have lost their coverage, many because of paperwork issues, as states reassess the eligibility of everyone on their rolls. It seems likely that more pushback like this is to come.
• A new survey released by KFF this week on medical misinformation found that the pandemic seems to have accelerated the trend of people not trusting public health and other institutions. It’s not just health care. It’s a distrust of expertise. In addition, it showed that though there are people on both ends — the extremes — there is also a muddled middle.
• Legislation in Texas that was recently signed into law by Republican Gov. Greg Abbott hasn’t gotten a lot of notice. But maybe it should, because it softens some of the state’s anti-abortion restrictions. Its focus is on care for pregnant patients; it gives doctors some leeway to provide abortion when a patient’s water breaks too early and for ectopic pregnancies; and it was drafted without including the word “abortion.” It bears notice because it may offer a path for other states that have adopted strict bans and abortion limits to follow.

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

Julie Rovner: KFF Health News’ “Doctors and Patients Try to Shame Insurers Online to Reverse Prior Authorization Denials,” by Lauren Sausser.

Margot Sanger-Katz: KFF Health News’ “Life in a Rural ‘Ambulance Desert’ Means Sometimes Help Isn’t on the Way,” by Taylor Sisk.

Joanne Kenen: The Atlantic’s “A Simple Marketing Technique Could Make America Healthier,” by Lola Butcher.

Victoria Knight: The New York Times’ “The Next Frontier for Corporate Benefits: Menopause,” by Alisha Haridasani Gupta.

Also mentioned in this week’s episode:

• NPR’s “Two Families Sue Florida for Being Kicked off Medicaid in ‘Unwinding’ Process,” by Selena Simmons-Duffin
• NPR’s “Texas Has Quietly Changed Its Abortion Law,” by Selena Simmons-Duffin.
• KFF’s “Poll: Most Americans Encounter Health Misinformation, and Most Aren’t Sure Whether It’s True or False.”

Click to open the transcript

Transcript: A Not-So-Health-y GOP Debate

[Editor’s note: This transcript, generated using transcription software, 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, Aug. 24, 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 Margot Sanger-Katz of The New York Times.

Margot Sanger-Katz: Good morning.

Rovner: Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: And Victoria Knight of Axios News.

Victoria Knight: Hello, everyone.

Rovner: No interview this week, but we’ll have an entire interview episode next week. More on that later. First, we will get to this week’s news. Well, Wednesday night saw the first Republican presidential debate of the 2024 cycle, minus front-runner Donald Trump, in what could only be called a melee, on Fox News Channel. And while there was a spirited debate about abortion, which we’ll get to in a minute, I didn’t hear a single word about anything else health-related — not Medicare or Medicaid, nor any mention of the Affordable Care Act. Was anybody surprised by that? For the record, I wasn’t. I wasn’t really expecting anything except abortion.

Kenen: Well, somebody, I think it was [former New Jersey Gov. Chris] Christie actually pointed out that nobody was talking about it.

Knight: Mike Pence. It was [former Vice President] Mike Pence, actually.

Kenen: Oh, Pence. OK. “Nobody’s talking about Medicare and Social Security.” And then he didn’t talk about it, and nobody mentioned the ACA.

Rovner: Is the ACA really gone as a Republican issue, for this cycle, do we think?

Kenen: Well, I think it’s become, like, a guerrilla warfare. Like, they’re still trying to undermine it. They’re not trying to repeal it, but they’re looking at its sort of soft underbelly, so to speak, and trying to figure out where they can put more market forces on, which we can sort of come back to later. But they spent 10 years trying to repeal it, and they just figured out what they’ve got to do now is pretend it’s not there. Right now, abortion is their topic.

Rovner: Well, let us turn to that.

Sanger-Katz: Yeah, I was just going to say that we’ve been seeing this happen a little bit over the last couple of cycles. In the 2020 race — I went through the transcripts of all of the speakers during the Republican National Convention and was really staggered by how few mentions of Obamacare there were relative to the way that the issue had been discussed in the past. But I think — just a note, that this is the Republican debate. Republicans don’t really want to be talking about health insurance and health care, because they don’t really have affirmative plans to put forward and because I think that they see that there are some real political liabilities in staking out a strong position on these issues. But in a general election, I think it will be impossible for them to avoid it, because, I think, Joe Biden has a lot of things that he wants to say. I think he is very committed to, in particular, broadcasting that he wants to protect Medicare. I think he’s quite proud of the expansions that he’s made of the Affordable Care Act. And so, this is a little bit of a weird moment in the race because, you know, we really only have one party that’s having a primary, and its leading candidate is not participating in the debates. And so, I think these candidates are trying to focus elsewhere. But it is — I will say, as someone who’s covered a couple of these now — it is a weird experience to have health care and health policy feel like a second-tier issue, because it was so central — Obamacare, in particular — was just so central to so many of these election cycles and such an animating and unifying issue among Republican voters, that this kind of post-failure-of “repeal and replace” era feels very different.

Kenen: One really quick thing is, they’re going to hit Biden on inflation. Economically, it’s his most vulnerable point, and health care costs are a burden. And I was a little surprised, without going into Obamacare and repeal and all that stuff, they mentioned the price of food, the price of gas, they mentioned interest rates and housing. It would have been really easy, and I expect that at some point they will start doing it, to talk about the cost of health care, because Biden’s done a huge amount on coverage and making insurance more affordable and accessible. But the cost of health care, as we all know, is still high in America.

Rovner: And at very least, the cost of prescription drugs, which has been a bipartisan issue going back many, many years. All right. Well, the one health issue that, not surprisingly, did get a lot of attention last night was abortion. With the exception of Mike Pence, who has been an anti-abortion absolutist for his entire tenure in Congress, as governor of Indiana, and as vice president, everyone else looked pretty uncomfortable trying to walk the line between the very anti-abortion base of the party and the recognition that anti-abortion absolutism has been a losing electoral strategy since the Supreme Court overturned Roe last year. What does this portend for the rest of the presidential race and for the rest of the down-ballot next year? Rather than trying to bury the fact that they all disagree, they all just publicly disagreed?

Knight: And I think they also, like, if you listened, [former U.S. ambassador to the United Nations] Nikki Haley kind of skirted around how she would address it. She talked about some other things, like contraception and saying that there just weren’t enough votes in the Senate to pass any kind of national abortion ban. [Florida Gov.] Ron DeSantis also, similarly, said he was proud of his six-week bill but didn’t quite want to answer about a national abortion ban. There were the few that did say, like, Hey, we’re into that. And some said, You know, it needs to go back to the states. So there definitely was kind of this slew of reactions on the stage, which I think just shows that the Republican Party is figuring out what message, and they don’t have a unified one on abortion, for sure.

Rovner: I do want to talk about Nikki Haley for a second, because this is what she’s been saying for a long time that she thinks that there’s a middle ground on abortion. And, you know, bless her heart. I’ve been covering this for almost 40 years and there has never been a middle ground. And she says, well, everybody should be for contraception. Well, guess what? There’s a lot of anti-abortion stalwarts who think that many forms of contraception are abortion. So there isn’t even a consensus on contraception. Might she be able to convince people that there could be a middle ground here?

Sanger-Katz: Oh, what I found sort of interesting about her answers: I think on their face they were kind of evasive. They were like, I don’t need to answer this question because there’s not a political consensus to do these things. But I do think it was sort of revealing of where the political consensus is and isn’t that I think she’s right. Like, realistically, there aren’t the votes to totally ban abortion; there aren’t the votes to renew the Roe standard. And I think she was in some ways very honestly articulating the bind that Republicans find themselves in, where they, and I think a lot of their voters, have these very strong pro-life values. At the same time, they recognize that getting into discussions about total abortion bans gives no favors politically and also isn’t going to happen in the near future. So, I felt like, as a journalist, you know, thinking about how I would feel having asked her that question, I felt very dissatisfied by her answer, because she really didn’t answer what she would like to do. But I do think she channeled the internal debate that all these candidates are facing, which is, like, is it worth it to go all the way out there with a policy that I know will alienate a lot of American voters when I know that it cannot be achieved?

Rovner: I was actually glad that she said that because I’ve been saying the opposite is true also — everybody says, well, why didn’t, you know, Congress enshrine abortion rights when they could have? The fact is, they never could have. There have never been 60 votes in the Senate for either side of this debate. That’s why they tried early after Roe to do national bans and then a constitutional amendment. They could never get enough votes. And they tried to do the Freedom of Choice Act and other abortion rights bills, and they couldn’t get those through either. And this is where I get to remind everybody, for the 11,000th time, the family planning law, the Title X, the federal Family Planning [Services and Public Research] Act, hasn’t been reauthorized since 1984 because neither side has been able to muster the votes even to do that. Sorry, Joanne, you wanted to say something.

Kenen: No, I thought Haley’s response on abortion was actually really pretty interesting on two points, right? She didn’t technically answer the question, but she also said this question is a fantasy — you know, face it. And, you know, she said that, and then she mentioned the word contraception. She did not dwell on it. She sort of said it sort of quickly. She missed an opportunity, maybe, just for one or two more sentences. You know, she said we need to make sure that contraception … she’s the only woman on that stage. She’s a mother; she’s got two kids. And, you know, there is uncertainty. After Dobbs there were advocacy groups saying, you know, they’re going to ban contraception tomorrow, and that didn’t happen. And we still don’t know how that fight will play out and what types of contraception will be debated. But I noticed that she said that on a stage full of Republicans, and I noticed that nobody else — all men — didn’t pick up on it.

Rovner: The big divide seemed to be, do you want to leave it completely to the states or do you want to have some kind of national floor of a ban? And they seemed, yeah —

Kenen: Yeah, and the moderators didn’t pick up on that. I mean, there was such a huge brouhaha on the stage. You know, the moderators had a lot of trouble moderating last night. It wouldn’t have been easy for them to get off of abortion and follow up on contraception. But I thought it was just sort of an interesting thing that she noted it.

Sanger-Katz: I will say also, and I agree with Julie: With the possible exception of Mike Pence, even the candidates that were endorsing some kind of national abortion policy, we’re talking about a 15-week gestational limit. There really wasn’t anyone who was coming out and saying, “Let’s ban all abortions. Let’s even go to six weeks,” which many of the states, including Florida, have done. So I do think, again, like, even the candidates that were more willing to take an aggressive stand on whether the federal government should get involved in this issue were moderating the position that you might have expected for them before Dobbs.

Kenen: But even 15 weeks shows how the parameters of this conversation have changed, because what the Republicans had been doing pre-Dobbs was 20 weeks, with their so-called fetal-pain bills. So 15 weeks, which would have sounded extremely radical two years ago — compared to six weeks, 15 sounds like, oh, you know, this huge opportunity for the pro-choice people. And it is another sign of how this space has shrunk.

Sanger-Katz: Yeah, no, I don’t mean that it’s a huge opportunity for the pro-choice people, but I think it reflects that even the candidates who were willing to go the most out on the limb in wanting to enforce a national abortion restriction understand the politics do not permit them to openly advocate going all the way towards a full ban.

Rovner: While we are on the subject of Republicans and health, there actually is a new Republican plan to overhaul the health system. Sort of. It’s from the Hoover Institution at Stanford, from which a lot of conservative policy proposals emanate. And it’s premised on the concept that consumers should have better control of the money spent on their health care and a better idea of what things cost. Now, this has basically been the theme of Republican health plans for as long as I can remember. And the lead author of this plan is Lanhee Chen, who worked for Republicans in the Senate and then led presidential candidate Mitt Romney’s policy shop, and whose name has been on a lot of conservative proposals. But I find this one notable more for its timing. Republicans, as we mentioned, appear to have internalized the idea that the only thing they can agree on when it comes to health care is that they don’t like the Affordable Care Act. Is that changing or is this just sort of hope from the Republican side of the policy wonk shop?

Sanger-Katz: I think this is connected to the discussion that we had about the debate, but it feels to me like we are in a bit of a post Obamacare era where the fights about “Are we going to continue to have Obamacare or not?” have sort of faded from the mainstream of the discussion. But there’s still plenty of discussion to be had about the details. The Democrats clearly want to expand Obamacare in various ways. Some of those they have done in a temporary fashion. Others are still on the wish list. And I think this feels very much like the kind of calibration adjustment, you know, small changes, tinkers on the Republican side to try to make the health insurance market a little bit more market-based. But this is not a big overhaul kind of plan. This is not a repeal-and-replace plan. This is not a plan that is changing the basic architecture of how most Americans get their insurance and how it is paid for. This is a plan that is making small changes to the regulation of insurance and to the way that the federal government finances certain types of insurance. That said, I think the fact that it’s more incremental makes it feel like these are things that are more likely to potentially happen because they feel like there are things that you could do without having a huge disruptive effect and a big political backlash and that you could maybe develop some political consensus around.

Rovner: It does, although I do feel like, you know, this is a very 2005 plan. This is the kind of thing that we would have seen 15 years ago. But as Democrats have gotten the Affordable Care Act and discovered that the details make it difficult, Republicans have actually gotten a lot on the transparency side and, you know, helping people understand what things cost. And that hasn’t worked very well either. So there’s a long way to go, I think, on both sides to actually make some of these things work. Victoria, did you want to add something?

Knight: Yeah, I’ve been talking to Republicans a lot, trying to figure out like what is their next go-to going to be. And I think they’re pretty understanding that ACA is set in place, but they still don’t want to give up that there are alternative types of health insurance that they want to put out there. And I think that seems that’s kind of what they realize they can accomplish if they get another Republican president and they’re going to try to do association health plans again. They’re going to try to expand some of these what they call health reimbursement arrangements, things like that, to just like kind of try to add some other types of health insurance options, because I think they know that ACA is just too entrenched and that there’s not much else they can do outside of that. And then, yeah, I think focus a little more on the transparency and cost because they know that’s a winning message and that is the one thing in Congress right now on the health care end that seems to have bipartisan momentum for the most part.

Rovner: Yeah, I think you’re absolutely right. Well, another issue that could have come up in last night’s debate but didn’t was the unwinding of Medicaid coverage from the pandemic. The news this week is that the first lawsuit has been filed accusing a state of mistreating Medicaid beneficiaries. The suit filed against Florida by the National Health Law Program and other groups is on behalf of two kids, one with a disability, and a mom who recently gave birth. All would seem to still be eligible, and the mom says she was never told how to contest the eligibility determination that she was no longer eligible, and that she was cut off when she tried to call and complain. State officials say their materials have been approved by the Centers for Medicare & Medicaid Services, which they have, and that Florida, in fact, has a lower procedural disenrollment rate than the average state, which is also true. But with 5 million people already having been dropped from Medicaid, I imagine we’re going to start to see a little more pushback from advocacy groups about people who are, in all likelihood, still eligible and have been wrongly dropped. I’m actually a little surprised that it took this long.

Kenen: Many of the people who have been dropped, if they’re still eligible, they can get recertified. I mean, there’s no open enrollment season for Medicaid. If you’re Medicaid-eligible, you’re Medicaid-eligible. The issue is, obviously, she didn’t understand this. It’s not being communicated well. If you show up at the hospital, they can enroll you. But people who are afraid that they aren’t covered anymore may be afraid of going to the hospital even if they need to. So there’s all sorts of bad things that happen. In some of these cases, there are simple solutions if the person walks in the door and asks for help. But there are barriers to walking in the door and asking for help.

Rovner: I was going to say one of the plaintiffs in this lawsuit is a child with a disease …

Kenen: Cystic fibrosis.

Rovner: Right. That needs expensive drugs and had not been able to get her drugs because she had been cut off of Medicaid. So there’s clearly stuff going on here. It’s probably true that Florida is better than the average state, which means that the average state is probably not doing that well at a lot of these things. And I think we’re just starting to see, you know, it’s sort of mind-numbing to say, oh, 5 million people have been separated from their health insurance. And again, we have no idea how many of those have gotten other health insurance, how many of those don’t even know and won’t know until they show up to get health care and find out they’re no longer covered. And how many people have been told they’re no longer covered but can’t figure out how to complain and get back on?

Sanger-Katz: And it’s this very extreme thing that’s happening right now. But it is, in many ways, the normal system on steroids. You know, if you’ve been covering Medicaid for any period of time, as all of us have, like, people get disenrolled all of the time from Medicaid for these administrative reasons, because of some weird hiccup in the system, they move, their income didn’t match in some database. This is a problem that a lot of states face because they have financial incentives often to drop people off of Medicaid because they have to pay a portion of the cost of providing health care. And a lot of them have rickety systems, and they’re dealing with a population that often has unstable housing or complicated lives that make it hard for them to do a lot of paperwork and respond to letters in a timely way. And so part of the way that I’ve been thinking about this unwinding is that there’s a particular thing that’s happening now, and I think there’s a lot of scrutiny on it, appropriately. And I think that there should be to make sure that the states are not cutting any corners. But I also think in some ways it’s sort of like a way of pressure-testing the normal system and reminding us of all of the people who slip through the cracks in normal times and will continue to do so after this unwinding is over. And these stories in Florida, to me, do not feel that dissimilar from the kinds of stories that I have heard from patients and advocates in states long before this happened.

Rovner: Yeah, I think you’re right. It’s just shining a light on what happens. I mean, it was the oddity that they were … states were not allowed to redetermine eligibility during the pandemic because normally states are required to redetermine eligibility at least once a year. And I think some do it twice a year. So it’s, you know, these redeterminations happen. They just don’t happen all in a huge pile the way they’re happening now. And I think that’s the concern.

Sanger-Katz: And it also, I think, really shines a light on the way that Medicaid is structured, where the Affordable Care Act simplified it quite a lot because, [for example], you’re in an expansion state and you earn less than a certain amount of money, then you can get Medicaid. But there are all of these categories of eligibility where, you know, you have to be pregnant, you have to be the parent of a child of a certain age. You have to demonstrate that you have a certain disability. And I think [it] is a reminder that this is a pretty complicated safety net, Medicaid. You know, there’s lots of things that beneficiaries have to prove to states in order to stay eligible. And there’s lots of things, honestly, you know, if states really want to make sure that they are reserving resources for the people who need them, that they do need to be checking on. And so I think we’re all just sort of seeing that this is a messy, complicated process. And I think we’re also seeing that there are these gaps and holes in who Medicaid covers. And it’s not the case that we have a perfect and seamless system of universal coverage in this country. We have this patchwork and people do fall between the cracks.

Kenen: And this is one of the most vulnerable populations, obviously. Some of the elderly are also very vulnerable, but these are people who may not speak either English or Spanish. They don’t have access to computers necessarily. I mean, we’re giving the least assistance to the population that needs the most assistance. And, you know, I mean, I think if Biden wanted to be really savvy about fixing it, he’d come out with some slogan about “Instead of Medicare unwinding, it’s time to have Medicare rewinding,” or something like that, because they’re going to have to figure … I mean, they have taken some steps, but it’s a huge mess, and the uninsurance rate is going to go up, and hospitals are going to have patients that are no longer covered, and it’s not going to be good for either the health care system or certainly the people who rely on Medicaid.

Rovner: I think it’s noteworthy how much the administration has been trying not to politicize this, that apparently, you know, we keep hearing that they won’t even tell us which states, although you can … people can sort of start to figure it out. But, you know, states that are having a more difficult time keeping eligible people on the rolls, shall we say, when the administration could have … I mean, they could be trumpeting, you know, which states are doing badly and trying to shame them. And they are rather very purposely not doing that. So I do think that there’s at least an attempt to keep this as collegial, if you will, as possible in a presidential election year. So my colleagues here at KFF have a depressing, but I guess not all that surprising, poll out this week about medical misinformation and how much of the public believes things that simply aren’t true — like that more people died from the covid vaccine than covid itself, or that ivermectin is a useful treatment for the virus. It’s not. It’s for parasites. And the survey didn’t just ask about covid. People have been exposed to, and a significant percentage believe, things like that it’s harder to get pregnant if you’ve been on birth control and stop. It isn’t. Or that people who keep guns in their house are less likely to be killed by a gun than those who don’t. They’re not. But what’s really depressing is the fact that the pandemic seems to have accelerated an already spiraling trend in distrust of public institutions in general: government, local and national media, and social media. Are we ever going to be able to start to get that back? I mean, you know, we talk about the woes with public health, but this goes a lot deeper than that, doesn’t it?

Kenen: And it’s not just health care. When you look at historical metrics about trust — which I’ve had to for a course I teach — we were never a very trusting society, it turns out. We’ve had large sectors of the population haven’t been trusting of many institutions and sectors of society for decades. We’re just not too huggy in this country. It’s gotten way worse. And what you said is right, but it’s broad. It’s not just doctors. It’s not just vaccines, it’s expertise. This distrust is really corrosive. But of all the things in that survey, one that really blew me away was we’re like, what, 13 years since Obamacare was passed? Only 7% or 8% — “only,” I should say only in quotes, you know — only 7% or 8% still thought there were death panels, but something like 70% wasn’t sure if there were death panels. Like, has anyone known anyone who went before a death panel? Since 2010? And yet 70% — I mean, I may be a little off, I didn’t write it down — but it’s something like 70% weren’t sure. And that is a mind-blowing number. It just says, you know, they weren’t ready to come out and say, yes, there are death panels. But that meant that a lot of Democrats also weren’t sure if there were death panels There are no death panels.

Knight: I was just gonna say, I also thought it was interesting that it showed people do use social media to get a lot of their information, but then they also don’t trust the information that they get on there. So it’s kind of like, yeah …

Rovner: And they’re right not to!

Knight: Yeah, they’re absolutely right not to. But then it’s also like, well, they’re then just not getting health information at all, or if they’re getting it, they just don’t trust it. So just showcasing how difficult it is to fill that void of health information, like, people just aren’t getting it or don’t trust it.

Rovner: I feel like some of this is social literacy. I mean, you know, we talk about health literacy and things that people can understand, but, you know, people don’t understand the way journalism works, the difference between the national news and what you see on Facebook. And I think that’s, Joanne, going back to your point about people not trusting expertise, it’s also not being able to figure out what expertise is and who has expertise. I mean, that’s really sort of the bottom line of all this, isn’t it?

Kenen: Well, I mean, I was doing some research — I can’t remember the exact details, this was something I read several months ago — but there was one survey maybe a couple of years ago where the majority of people said they don’t trust the news they read, but they’re still getting their news from something that they don’t trust. So it sounds sort of funny, but it’s actually not. I mean, it’s really a crisis of people don’t know what to believe. The uncertainty is corrosive, and it’s health care and politics, this widening chasm of people with alternative sets of facts — or alternative worldviews, anyway. So it’s not good. I mean, it was a really good survey, it was a really interesting survey, but some of it wasn’t so surprising. I mean, that there’s still people who, like, the fertility issues and the vaccines. You can sort of understand why those have lingered in the environment we’re in. I had actually had a conversation the other day with a political scientist who had studied the death panel rumors 10 years ago. And I said, what about now? And, you know, he was sort of … he hadn’t looked at it and he was sort of saying, well, you know, there aren’t any. And people have probably figured that out by now. Well, no. I have to email him the study, right?

Sanger-Katz: Anytime that I read a study like this, I am also reminded — and I think it is useful for all of us to be reminded of this and probably most people who are listening to the podcast — that the average American is just not as tuned in on the news and on the Washington debate and on the minutia of public policy, as all of us are. So, you know, and I think that that is part of the reason why you see so many people not sure about these things. It’s clearly the case that they are being exposed to bad information and that is contributing to their uncertainty. And I think the rise of misinformation about both health policy and about actual, you know, health care, in the case of covid, is a bad and relatively newer phenomenon. But I also think a lot of people just aren’t paying that close attention, you know, and it’s good to be reminded of that.

Kenen: The book I just read that I referred to — it’s by an MIT political scientist named Adam Berinsky, and it’s called “Political Rumors.” And it just came out, and he was talking about exactly that, that we’re all exposed to misinformation. We can’t avoid it. It’s everywhere. And that for people who aren’t as engaged with day-to-day politics, they end up uncertain. That’s this messy middle, which they also use in the KFF survey. They came up with a very similar conclusion about the “muddled middle,” I think was the phrase they used. And what this political scientist said to me the other day was that, you know, pollsters tend to not look at the “I don’t know, I’m uncertain, no opinion.” They sort of shunt them aside and they look at the “yes” or “no” people. And he was saying, no, no, no, you know, this is the population we really need to pay attention to, the “Uncertains” because they’re probably the ones you can reach more. And in the real world, we saw that with vaccination, right? I mean, in the primary series — I mean, booster takeup was low — but in the primary when there was a lot of uncertainty about the vaccines, the people who said “no way I am ever going to get the vaccine” — I mean, KFF was surveying this every month — most of them didn’t. You know, a few on the margins did, but most of them who were really militantly against the vaccine didn’t take it. The ones who were “I don’t know” and “I’m a little scared” and “I’m waiting and seeing” … a lot of them did take it. They were reached. And that’s sort of an important lesson to shift the focus as we deal with distrust, as we deal with disinformation and we deal with messaging, which is good, and truth-building and confidence-building, it is that muddled middle that’s going to have to be more of a target than we have traditionally thought.

Rovner: Well, in the interest of actually giving good information, we have a couple of updates on the reproductive health front. For those of you keeping score, abortion bans took effect this week in South Carolina and Indiana after long drawn-out court battles. Meanwhile, in Texas, an update to our continuing discussion of women with pregnancy complications who’ve been unable to get care because doctors fear running afoul of that state’s ban, a couple of weeks ago, reports Selena Simmons-Duffin at NPR, Texas Gov. Greg Abbott very quietly signed a law that created a couple of exceptions to the ban for ectopic pregnancies and premature rupture of membranes, both of which are life-threatening to the pregnant woman, but just not necessarily immediately life-threatening. I had not heard a word about this change in the law until I saw Selena’s story. Had any of you?

Kenen: In fact, it should have come up because of this court case in Texas about, you know, a broader health exception — it’s not even “health,” it’s life-threatening. It’s like, at what point do you get sick enough that your life is in danger as opposed to, you know, should you be treating that woman before … you see what direction it’s going, and you don’t let them go to the brink of death? I mean, that was the court case and Abbott fought that. But yeah, it was interesting.

Rovner: It was a really interesting story that was also, you know, pushed by a state legislator who was trying very hard not to … never to say the word abortion and to just make sure that, you know, this was about health care and not abortion. It’s an interesting story, we will link to it.

Sanger-Katz: I wonder if other states will do this as well. It seems like, as we’ve discussed, you know, abortion bans are not as popular as I think many Republican politicians thought they would [be]. And I do think that these cases of women who face really terrible health crises and are unable to get treated are contributing to the public’s dislike of these policies. And on the one hand, I think that there is a strong dislike of exceptions among people who support abortion bans because they don’t want the loopholes to get so big that the actual policy becomes meaningless. On the other hand, it seems like there is a real incentive for them in trying to fix these obvious problems, because I think it contributes to bad outcomes for women and children. And I think it also contributes to political distaste for the abortion ban itself.

Kenen: But it’s very hard to legislate every possible medical problem …  I mean, what Texas did in this case was they legislated two particular medical problems. And some states … they have the ectopic — I mean, ectopic is not … there’s no stretch of the imagination that that’s viable. Right? The only thing that happens with an ectopic pregnancy is it either disintegrates or it hemorrhages. I mean, the woman is going to have a problem, but making a list of “you get this condition, you can have a medical emergency abortion, but if you have that condition and your state legislator didn’t happen to think about it, then you can’t.” I mean, the larger issue is: How do you balance the legal restrictions and medical judgments? And that’s … I don’t think any state that has a ban has completely figured that out.

Rovner: Right. And we’re back to legislators practicing medicine, which is something that I think the public does seem to find distasteful.

Sanger-Katz: I mean, I don’t think that this solves the problem at all, but I think it does show a surprising responsiveness to the particular bad outcomes that are getting the most publicity and a sort of new flexibility among the legislators who support these abortion bans. So it’s interesting.

Rovner: All right. Meanwhile, another shocking story about pregnant women being treated badly. The Centers for Disease Control and Prevention reported this week that a survey conducted this April found that 1 in 5 women reported being mistreated by medical professionals during pregnancy or delivery. For women of color, the rate was even higher: more than 1 in 4. Mistreatment included things like getting no response to calls for help, being yelled at or scolded, and feeling coerced into accepting or rejecting certain types of treatment. We know a lot of cases where women in labor or after birth reported problems that went ignored. Among the most notable, of course, was tennis legend Serena Williams, who gave birth to her second child this week after almost not surviving the birth of her first. We’re hearing so much about the high maternal mortality rate in the U.S. What is it going to take to change this? This isn’t something that can be solved by throwing more money at it. This has got to be sort of a change in culture, doesn’t it?

Kenen: No. I mean, it’s … if someone who’s just given birth, particularly if it’s the first time and you don’t know what’s normal and what’s not and what’s dangerous and what’s not dangerous, and, you know, it’s a trauma to your body. I mean, you know, I had a very much-wanted child, but labor is tough, right? I always say that evolution should have given us a zipper. But the philosophy should be, if someone who’s just been through this physical and emotional ordeal, has discomfort or a question or a fear, that you respect it and that you calm it down, you don’t dismiss it or yell at somebody. When you’re pregnant, you read all these books and you go to Lamaze workshops and you learn all this stuff about labor and delivery. You learn nothing about what happens right after. And it’s actually quite uncomfortable. And no one had ever told me what to expect. And I didn’t know. And I always, like, when younger women are having babies, I let them know that, you know, talk to your doctor or learn about this or be prepared for this, because that is a really vulnerable point. And that this survey — and it’s more Black and poor women, and Latina women in this survey, it’s not that … it’s disproportionate like everything else in health care — they’re being disrespected and not listened to. And some of them are going to have bad medical outcomes because of that.

Rovner: As we are seeing. All right. Well, that is this week’s news now. We will take a quick break. Then we will come back and do our extra credit.

Hey, “What the Health?” listeners: You already know that few things in health care are ever simple. So if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health journalist and my friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you get your podcasts.

OK, we’re back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry, if you missed 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 is from The New York Times, and the story is called “The Next Frontier for Corporate Benefits: Menopause.” It basically details how a lot of companies are realizing that, you know, as more women get into leadership positions, high-level leadership, executive positions, they’re in their 40s, late 40s, early 50s, that’s when menopause or perimenopause starts happening. And that’s something that can last for a while. I didn’t realize the stories, that it can last almost 10 years sometimes. And so it was talking about how, you know, it affects women for a long period of time. It can also affect their productivity in the workplace and their comfort and being able to accomplish things. And so they were realizing, you know, we kind of need to do something to help these women stay in these positions. And there was actually an interesting tidbit at the very end where it was talking about some companies may even be, like, legally compelled to make accommodations. And that’s due to the new Pregnant Workers Fairness Act, which says that employers have to provide accommodations for people experiencing pregnancy but also related medical conditions. They’re saying menopause could be included in that. And just some of the benefits some of these companies were offering were access to virtual specialists, but they were talking about, like, if they need to do other things like cooling rooms and stuff like that. So I thought it was kind of interesting. And another employer benefit that maybe some employers are thinking about adding.

Kenen: I think all offices should have, like, little nap cubicles and man-woman, pregnant-not pregnant. And, you know, just like “life is rough.” [laughter]

Knight: I agree.

Kenen: Just a little corner!

Rovner: Joanne, why don’t you go next?

Kenen: Mine is from The Atlantic. It’s by Lola Butcher. And it is “A Simple Marketing Technique Could Make America Healthier.” And it’s basically talking about how some medical practices are doing what we in the news business and the tech industry knows of as “A-B testing.” You know, a tech company may try a big button or a little button and see which one consumers like. Newsrooms change headlines— headline A, headline B and see which one draws more readers — and that hospitals and medical practices have been trying to do. In some cases, it’s text messaging two different kinds of reminders to figure out, you know … one example was the message with something like 78 characters got women to book a mammogram, but a message with 155 characters did not. Two text messages were better than one for booking children’s vaccines. So some people are very excited about this. It’s getting people to do preventive care and routine care. And some people think this is just not the problem with health care, that it’s way deeper and more systemic and that this isn’t really going to move the needle. But it was an interesting piece.

Rovner: Any little thing helps.

Kenen: Right. This was an interesting piece.

Rovner: Margot.

Sanger-Katz: I wanted to talk about an article in KFF Health News from Taylor Sisk. The headline is “Life in a Rural ‘Ambulance Desert’ Means Sometimes Help Isn’t on the Way,” and it’s a really interesting exploration of some of the challenges of ambulance care in rural areas, which is a topic that is near and dear to my heart. Because when I was a reporter in New Hampshire covering rural health care delivery, I spent the better part of a year writing about ambulance services and the challenges there. And I think this story is highlighting a real challenge for people in these communities. And I think it’s also really a reminder that the ambulance system is this weird, off-to-the-side part of our health care system that I think is often not well integrated and not well thought of. It tends to be regulated as transportation, not as health care. It tends to be provided by local governments or by contractors hired by local governments as opposed to health care institutions. It tends to have a lot of difficulty with billing a very high degree of surprise billing for its patients, and also just a real lack of health services research about best practices for how fast ambulances should arrive, what level of care they should provide to people, and on and on. And I just think that it’s good that she’s highlighted this issue. And also, I think it is a reminder to me that ambulances are probably worth a little bit more attention from reporters overall.

Rovner: Well, my story is also something that’s near and dear to my heart because I’ve been covering it for a long time. It’s from my KFF Health News colleague Lauren Sausser. It’s called “Doctors and Patients Try to Shame Insurers Online to Reverse Prior Authorization Denials.” And it is a wonderful 2023 update to a fight that Joanne and I have been covering since, what, the late 1990s. It even includes comments from Dr. Linda Peeno, who testified about inappropriate insurance company care denials to Congress in 1996. I was actually at that hearing. The twist, of course, now is that while people who were wrongly denied care at the turn of the century needed to catch the attention of a journalist or picket in front of the insurance company’s headquarters. Today, an outrage post on Instagram or TikTok or X can often get things turned around much faster. On the other hand, it’s depressing that after more than a quarter of a century, patients are still being caught in the middle of appropriateness fights between doctors and insurance companies. Maybe prior authorization will be the next surprise medical bill fight in Congress. We shall see. All right. That is our show for the week. 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 amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me or X me or whatever. I’m @jrovner, also on Bluesky and Threads. Joanne?

Kenen: I am also on Twitter, @JoanneKenen; and I’m on Threads, @joannekenen1; and Bluesky, JoanneKenen.

Rovner: Margot.

Sanger-Katz: I’m @sangerkatz.

Rovner: Victoria.

Knight: I’m @victoriaregisk on X and Threads.

Rovner: Well, we’re going to take a week off from the news next week, but watch your feed for a special episode. We will be back with our panel after Labor Day. 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.

Ohio voters — in a rare August election — turned out in unexpectedly high numbers to defeat a ballot measure that would have made it harder to pass an abortion-rights constitutional amendment on the ballot in November. The election was almost a year to the day after Kansas voters also stunned observers by supporting abortion rights in a ballot measure.

Meanwhile, the percentage of Americans without health insurance dropped to an all-time low of 7.7% in early 2023, reported the Department of Health and Human Services. But that’s not likely to continue, as states boot from the Medicaid program millions of people who received coverage under special eligibility rules during the pandemic.

This week’s panelists are Julie Rovner of KFF Health News, Emmarie Huetteman of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachel Roubein of The Washington Post.

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Emmarie Huetteman
KFF Health News

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Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Rachel Roubein
The Washington Post

@rachel_roubein

Read Rachel's stories

Among the takeaways from this week’s episode:

• It should not have come as much of a surprise that Ohio voters sided with abortion-rights advocates. Abortion rights so far have prevailed in every state that has considered a related ballot measure since the Supreme Court overturned Roe v. Wade, including in politically conservative states like Kentucky and Montana.
• Moderate Republicans and independents joined Democrats in defeating the Ohio ballot question. Opponents of the measure — which would have increased the threshold of votes needed to approve state constitutional amendments to 60% from a simple majority — had not only cited its ramifications for the upcoming vote on statewide abortion access, but also for other issues, like raising the minimum wage.
• A Texas case about exceptions under the state’s abortion ban awaits the input of the state’s Supreme Court. But the painful personal experiences shared by the plaintiffs — notable in part because such private stories were once scarce in public discourse — pressed abortion opponents to address the consequences for women, not fetuses.
• The uninsured rate hit a record low earlier this year, a milestone that has since been washed away by states’ efforts to strip newly ineligible Medicaid beneficiaries from their rolls as the covid-19 public health emergency ended.
• The promise of diabetes drugs to assist in weight loss has attracted plenty of attention, yet with their high price tags and coverage issues, one thorny obstacle to access remains: How could we, individually and as a society, afford this?
• Lawmakers are asking more questions about the nature of nonprofit, or tax-exempt, hospitals and the care they provide to their communities. But they still face an uphill battle in challenging the powerful hospital industry.

Also this week, Rovner interviews Kate McEvoy, executive director of the National Association of Medicaid Directors, about how the “Medicaid unwinding” is going as millions have their eligibility for coverage rechecked.

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

Julie Rovner: KFF Health News’ “How the Texas Trial Changed the Story of Abortion Rights in America,” by Sarah Varney.

Joanne Kenen: Fox News’ “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’,” by Melissa Rudy.

Rachel Roubein: Stat’s “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Mohana Ravindranath.

Emmarie Huetteman: KFF Health News’ “The NIH Ices a Research Project. Is It Self-Censorship?” by Darius Tahir.

Also mentioned in this week’s episode:

• Politico’s “Abortion Rights Won Big in Ohio. Here’s Why It Wasn’t Particularly Close,” by Madison Fernandez, Alice Miranda Ollstein, and Zach Montellaro.
• KFF Health News’ “Seeking Medicare Coverage for Weight Loss Drugs, Pharma Giant Courts Black Influencers,” by Rachana Pradhan.
• Stat’s “Alarmed by Popularity of Ozempic and Wegovy, Insurers Wage Multi-Front Battle,” by Elaine Chen.

click to open the transcript

Transcript: On Abortion Rights, Ohio Is the New Kansas

KFF Health News’ ‘What the Health?’Episode Title: On Abortion Rights, Ohio Is the New KansasEpisode Number: 309Published: Aug. 10, 2023

[Editor’s note: This transcript, generated using transcription software, 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 a day early this week, on Wednesday, Aug. 9, at 3:30 p.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 Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hey, everybody.

Rovner: Rachel Roubein of The Washington Post.

Rachel Roubein: Hi, everybody.

Rovner: And my colleague and editor here at KFF Health News Emmarie Huetteman.

Emmarie Huetteman: Hey, everyone. Glad to be here.

Rovner: So later in this episode, we’ll have my interview with Kate McEvoy, executive director of the National Association of Medicaid Directors. She’s got her pulse on how that big post-public health emergency “Medicaid unwinding” is going. And she’ll share some of that with us. But first, this week’s news. I guess the biggest news of the week is out of Ohio, which, in almost a rerun of what happened in Kansas almost exactly a year ago, voters soundly defeated a ballot issue that would have made it harder for other voters this fall to reverse the legislature’s strict abortion ban. If you’re having trouble following that, so did they in Ohio. [laughs] This time, the fact that the abortion rights side won wasn’t as much of a surprise because every statewide abortion ballot question has gone for the abortion rights side since Roe v. Wade was overturned last year. What do we take away from Ohio? Other than it looked a lot like … the split looked a lot like Kansas. It was almost 60-40.

Kenen: It shows that there’s a coalition around this issue that is bigger than Democrat or Republican. Ohio was the classic swing state that has turned into a conservative Republican-voting state — not on this issue. This was clearly independents, moderate Republicans joined Democrats to … 60-40, roughly, is a pretty big win. Yes, we’ve seen it in other states. It’s still a pretty big win.

Roubein: I agree. And I think one of my colleagues, Patrick Marley, and I spent some time just driving around and traveling Ohio in July. And one of the things that we did find is that — this ballot measure to increase the threshold for constitutional amendments is 60% — it had in some, in many, ways turned into a proxy war over abortion. But, in some ways, both sides also didn’t talk about abortion when they were, you know, canvassing different voters. You know, they use different tools in the toolbox. I was following around someone from Ohio Right to Life and, you know, he very much said, “Abortion is the major issue to me.” But, you know, they tried to kind of bring together the side that supported this. Other issues like legalizing marijuana and raising the minimum wage, and, you know, the abortion rights side was very much a part of, you know, the opposition here. But when some canvassers went out — my colleague Patrick had traveled and followed some, and some, you know, kind of focused on other issues like, you know, voters having a voice in policy and keeping a simple majority rule.

Rovner: Yeah, I think it’s important — for those who have not been following this as closely as we have — what the ballot measure was was to make future ballot measures — and they said they were not going to have them in August anymore, which, this was the last one — in order to amend the constitution by referendum, you would need a 60% majority rather than a 50% majority. And just coincidentally, there is an abortion ballot measure on Ohio’s ballot for November, and it’s polling at about 58%. But, yes, this would have applied to everything, and it was defeated.

Kenen: And it’s part of a larger trend. It began before the overturning of Roe v. Wade. Over the last couple of years, you’ve seen conservative states move to tighten these rules for ballot initiatives. And that’s because more liberal positions have been winning. I mean, Medicaid, the Medicaid expansion on the ballot, has won, and won big. Only one was even close …

Rovner: In very red states!

Kenen: They often won very big in a number of very, very conservative states, places like Idaho and Nebraska. So, you know, there’s always been … the conventional wisdom is that, you know, the political parties are more extreme than many voters, that the Democratic Party is for the left and the Republican Party is for the right. And there are a lot of people who identify with one party or the other but aren’t … who are more moderate or, in this case, more liberal on Medicaid. And Medicaid … what was it, seven states? I think it’s seven. Seven really conservative states. And then the abortion has won in every single state. And there’s a little bit of conversation and it’s … very early. And I don’t know if it’s going to go anywhere, but if I’ve heard it and written a bit about it, conservative lawmakers have heard about it, too, which is there are groups interested in trying to get some gun safety initiatives on ballots. So that’s complicated. And it may not happen. But they’re seeing, I mean, that’s the classic example of both a criminal justice and a public health issue — so we can talk about it — a classic example where the country is much more in the center.

Rovner: Well, let us move to Texas, because that’s where we always end up when we talk about abortion. You may remember that lawsuit where several women who nearly died from pregnancy complications sued the state to clarify when medical personnel are able to intercede without being subjected to fines and/or jail sentences. Well, the women won, at least for a couple of days. A Texas district judge who heard the case ruled in their favor, temporarily blocking the Texas ban for women with pregnancy complications. But then the state appealed, and a Texas appeals court blocked the lower-court judge’s blocking of part of the ban. If you didn’t follow that, it just means that legally nothing has changed in Texas. And now the case goes to the Texas Supreme Court, which has a conservative majority. So we pretty much know what’s going to happen. But whether these women ultimately win or lose their case may not be the most important thing. And, to explain why I’m going to do my extra credit early this week. It’s by my KFF Health News colleague Sarah Varney. It’s called “How the Texas Trial Changed the Story of Abortion Rights in America.” She writes that this trial was particularly significant because it put abortion foes on the defensive by graphically depicting harm to women of abortion bans — rather than to fetuses. And it’s also about the power of people publicly telling their stories. I’ve done a lot of stories over the years about women whose very wanted pregnancies went very wrong, very late. And, I have to tell you, it’s been hard to find these women. And when you find them, it’s been really hard to get them to talk to a journalist. So, the fact that we’re seeing more and more people actually come out publicly, you know, may do for this issue what, you know, perhaps what gay rights, you know, what people coming out as gay did for gay marriage? I don’t know. What do you guys think?

Kenen: Well, I think these stories have been really compelling, but they’re also, they’re the most dramatic and maybe easiest to push back. But it’s, you know, there’s a whole lot of other reasons women want abortions. And the focus — and it’s life and death, so the focus, quite rightfully, has to be on these really extreme cases. But that’s not … it’s still in some ways shifting attention from the larger political discussion about choice and rights. But, clearly, some of these states, we’ve seen so many stories of women who, their lives are at stake, their doctors know it, and they just don’t think they have the legal power; they’re afraid of the consequences if they’re second-guessed. There are tremendous financial and imprisonment [risks] for a doctor who is deemed to have done an unnecessary abortion. And this idea that’s taken hold … among some conservatives is that there’s never a need for a medical abortion. And that’s just not true.

Rovner: And yet, I mean, what this trial and a lot of things in Sarah’s piece too point out is that that line between miscarriage and abortion is really kind of fuzzy in a lot of cases. You know, if you go to the hospital with a miscarriage and they’re going to say, “Well, did you initiate this miscarriage?” And we’ve seen women thrown in jail before for losing pregnancies, with them saying, “You know, you threw yourself down the stairs to end this pregnancy.” That actually happened, I think it was in Indiana. So this is —

Kenen: And miscarriage is very common.

Rovner: That was what I was saying.

Kenen: Early miscarriage is very common. Very, very common.

Huetteman: One of the things that’s so striking about the past year, since Dobbs overturned Roe v. Wade ,is that we’ve seen this kind of national education about what pregnancy is and how dangerous it can be and how care needs to really be flexible to meet those sorts of challenges. And this actually got me thinking about something that another familiar voice on this podcast, Alice Miranda Ollstein, and some colleagues wrote this morning about the Ohio outcome, which is they pointed out that the anti-abortion movement really hasn’t evolved in terms of the arguments that they’re making in the past year about why abortion should continue to be less and less available. Meanwhile, we’ve got these, like, really incredible, really emotional, moving stories from women who have experienced this firsthand. And that’s a hard message to overcome when you’re trying to reach voters in particular.

Rovner: And it’s interesting; both sides like to take — you know, they all go to the hardest cases. So, for years and years, the anti-abortion side has, you know, has gone to the hardest cases. And that’s why they talk about abortion in the ninth month up till birth, which isn’t a thing, but they talk about it. And you know, now the abortion rights side has some hard cases now that abortions are harder to get. Well, while we are on the subject of Texas lawsuits, States Newsroom — and thank you for sending this my way, Joanne — has a story reporting that the publisher of the scientific paper that both the lower court judge and the appeals court judges used to conclude that the abortion drug mifepristone causes frequent complications — it does not — is being reviewed for potential scientific misconduct. The paper comes from the Charlotte Lozier Institute, which is the research arm of the anti-abortion group the Susan B. Anthony List. Sage, which is the publisher of the journal that the paper appeared in, has posted something called an expression of concern, saying that the publisher and editor, quote, “were alerted to potential issues regarding the representation of data in the article and author conflicts of interest. SAGE has contacted the authors of this article and an investigation is underway.” This was sort of a whistleblower by a pharmacist who looked at the way the data in this paper was put together and says, “No, that’s really very misleading.” I don’t think I’ve ever seen this, though; I’ve never seen a scientific paper that’s now being questioned for its political bent, a peer-reviewed scientific paper. I mean, this could change a lot of things, couldn’t it?

Kenen: Well, not if people decide that they still think it’s true. I mean, look at — you know, the vaccine autism paper was retracted. That wasn’t initially political. It’s become more political over the years; it wasn’t political at the time. That was retracted. And people have been jumping up and down screaming, “It was retracted! It was retracted!” And, you know, millions of people still believe it. So, I mean, legally, I’m not sure how much it changes. I mean, I thought we had all heard that there were flaws in this study. This article was good because I hadn’t been aware of how deeply flawed and in all the many ways it was flawed. And also the whistleblower yarn was interesting. I’m not sure how much it changes anything.

Rovner: Well, I’m thinking not in terms of this case. And by the way, I think we didn’t say this, that the study was of emergency room visits by women who’d had either surgical or medical abortions. And the contention was that medical abortions were more dangerous than surgical abortions because more women ended up in the emergency room. But as several people have pointed out, more people ended up in the emergency room after medical abortions because there have been so many more medical abortions over the years. I mean, you don’t actually have to be a data scientist to see some of the problems.

Kenen: Right. And some of them also weren’t that — really, were nervous, and they didn’t know what was normal and they went to the ER because they were scared and they really were safe. They were not — they didn’t need — you know, they just weren’t sure how much pain and discomfort or bleeding you’re supposed to have. And they went and they were reassured and were sent home. So it’s not even that they really had a medical emergency or that they were harmed.

Rovner: Or that they had a complication.

Kenen: Right. There were many flaws pointed out with this research.

Rovner: But my broader question is, I mean, if people are going to start questioning the politics of scientific papers, I mean, I could see the other side going after this.

Kenen: Well, there’s climate science, too, that’s bad. I mean, I don’t think this is actually unique. I think it’s egregious. But there were studies minimizing the risk of smoking, which was also a political business, commercial. Climate is certainly political. I mean, I think this is sort of the most politicized and most acute example, but I don’t think it’s the only one.

Roubein: And I think, Julie, as you’d mentioned, I think when [U.S. District Judge] Matthew Kacsmaryk in Texas came down with his decision — you know, for instance, there are media outlets — that my colleagues at the Post did a story just kind of unpacking some of the kind of flaws and some of the studies that were used to make, you know, a court decision.

Rovner: Yeah, to give the judge what he assumes to be evidence that this is a dangerous drug. So it’s — yeah.

Kenen: Which he came in believing, we know, from the profiles of him and his background.

Rovner: Right. All right, well, let us move on. The official Census Bureau estimate of how many people lack health insurance won’t be out until next month. But the Department of Health and Human Services is out with a report based on that other big federal population survey that shows the uninsured rate early this year was at its lowest level since records started being kept, which I think was in the 1980s: 7.7%. Now, that’s clearly going to be the high point for the fewest number of people uninsured, at least for a while, because clearly not all of the millions of people who are losing or about to lose their Medicaid coverage are going to end up with other insurance. But I remember — Joanne, you will, too — when the rate was closer to 18% … was a huge news story, and the thing that triggered the whole health reform debate in the first place. I’m surprised that there’s been so little attention paid to this.

Kenen: Because, you know … [unintelligible] … it’s so yesterday. And also, as you alluded to, you know, we’re in the middle of the Medicaid unwinding. So the numbers are going up again now. And we don’t know. We know that it’s a couple of million people. I think 3 million might be the last —

Rovner: I think it’s 4 [million], it’s up to 4.

Kenen: Four, OK. And some of them will get covered again and some of them will find other sources of coverage. But right now, there’s an uptick, not a downtick.

Roubein: And I think when you look at just, like, estimates of what the insured and the uninsured rates would be in 2030, like, the CMS’ [Centers for Medicare & Medicaid Services] analysis, one of the other questions is, you know, whether the enhanced Obamacare subsidies continue past 2025. So there’s Medicaid and then there’s also some other kind of question marks and cliffs coming up on how and whether it will fluctuate.

Rovner: No, it’s worth watching. And remember, when the census numbers come out, those will be for 2022. Well, moving on, we have two stories this week looking at the potential cost of those breakthrough obesity drugs, but through two very different lenses. One is from my KFF Health News colleague Rachana Pradhan, details how the makers of the current “it” drug, Ozempic, which is Novo Nordisk, in an effort to get the votes to lift the Medicare payment ban on weight loss drugs, is quietly contributing large amounts of money to groups like the Congressional Black Caucus Foundation and the Congressional Hispanic Caucus Institute. It’s sort of a backdoor lobbying that’s pretty age-old, but that doesn’t mean it doesn’t work. The other story, by Elaine Chen at Stat, looks at how health insurers are pushing back hard against the off-label use of diabetes medications that also work to help people lose weight. They’re doing things like allowing the more expensive weight loss drugs only if people have tried and failed other methods or disallowing them if the other methods had been slightly successful. So, if you take a lesser drug and you lose enough weight, they won’t let you take the better drug because, look, you lost weight on the other drug. We’ve talked about this, obviously, before: These drugs, on the one hand, have the potential to make a lot of people both healthier and happier. There’s a study out this week that shows that Mounjaro, the Eli Lilly drug, actually reduces heart disease by 20%.

Kenen: In people who have heart disease.

Rovner: Right, in people who have heart disease.

Kenen: It’s not lowering everybody’s risk.

Rovner: But still, I mean, everybody’s — well, I mean, there are medical indications for using these drugs for weight loss. But if everybody who wants them could get them, it would literally break the bank. Nobody can afford to give everybody who’s eligible for these drugs these drugs. Is the winner here going to be the side with the most effective lobbying, or is that too cynical?

Huetteman: Isn’t that always the winner? Speaking of cynical.

Rovner: Yeah, in health care.

Kenen: Well, I mean, I also think there’s questions about, like, these drugs clearly are really wonderful for people who they were designed for; you don’t have to be on insulin. They’re having not just weight loss and diabetes. There are apparently cardiac and other — you know, these are probably really good drugs. But there are a lot of people who do not have diabetes or heart disease who want them because they want to lose 20 pounds. And some of them are being told you have to take it for the rest of your life. I mean, I just know this anecdotally, and I’m sure we all know it anecdotally.

Rovner: Right. It’s like statins.

Kenen: Yes.

Rovner: Or blood pressure medication. If you stop taking your blood pressure medication, your blood pressure goes back up.

Kenen: Right. So, I mean, should the goal for the weight loss be, “OK, this is going to help you take off that weight and then you’re going to have to maintain it through diet and exercise and healthy lifestyle,” blah, blah, blah, which is hard for people. We know that. Or are we putting healthy people on a really expensive drug that changes an awful lot of things about their body indefinitely? We don’t have safety data for lifelong use in otherwise healthy people. So, you know, I’m always a little worried because even the best clinical trial is small compared to the entire — it’s small and it’s time-limited. And maybe these drugs are going to turn out to be absolutely phenomenal and we’re going to all live another 20 healthy years. But maybe not, you know. Or maybe they’re going to be really great for a certain subpopulation, but, you know, we’re not going to want to put it in the water supply. So, I still think that there’s this sort of pell-mell rush. And I think it’s partly because there’s a lot of money at stake. And it’s also, like, most people who are overweight have tried to lose it, and it’s very difficult to lose and maintain weight. So, you know, people want an easier way to do it. And I think the other thing is right now it’s an injection. There are side effects for some people on discomfort. There probably will be an oral version, a pill, sometime fairly soon, which will open — you know, there are people who don’t want to take a shot who would take a pill. It also means you might be able to tell — I mean, I don’t know the science of the pills, but it would make sense to me that you could take a lower dose, you know, maybe ease into it without the side effects, or could you stay on it longer with fewer problems? I mean, we’re just the very beginning of this, but it’s a huge amount of money.

Rovner: Yeah. You could see — I mean, my big question, though, is why can’t we force the drugmakers to lower the price? That would, if not solve the problem, make it a lot better. I mean, really, we’re going to have to wait until there is generic competition?

Kenen: It’s not just this.

Rovner: Yeah.

Kenen: I mean, it’s all sorts of cancer treatments and it’s hepatitis treatments. And it’s, I mean, there’s a lot of expensive drugs out there. So, this one just has a lot of demand because it makes you skinny.

Rovner: Well, that was the thing. We went through this with the hepatitis C drugs, which were really super expensive. It’s much more like that.

Kenen: Well, they seemed super expensive at the time —

Rovner: Not so much anymore.

Kenen: — but maybe for a thousand dollars, in retrospect.

Rovner: All right. Well, let’s move on. So, speaking of powerful lobbies, let’s talk about hospitals. Iowa Republican Sen. Chuck Grassley and Massachusetts Democrat Elizabeth Warren — now, there is an unlikely couple — are among those asking the IRS to more carefully examine tax-exempt hospitals to make sure they’re actually benefiting the community in exchange for not paying taxes, which is supposed to be the deal. Now, Sen. Grassley has been on this particular hobbyhorse for many, many years, I think probably more than 20, but not much ever seems to come of this. I can’t tell you how many workshops I’ve been to on, you know, how to measure community benefits that tax-exempt hospitals are providing. Any inkling that this time is going to be any different?

Roubein: Well, hospitals don’t tend to be sort of the losers. They try and kind of frame themselves as, like, “We’re your sort of friendly neighborhood hospital,” and every — I mean, every congressman, most congressmen have, you know, hospitals in their district. So they they get lobbied a lot, though, you know — I mean, this is a different issue, but particularly on the House side, hospitals are facing site-neutral payments, which if that actually went through Congress would be a loss. So yeah, but lawmakers have found it in general hard to take on the hospital industry.

Rovner: Yeah, very much so.

Kenen: Yeah. I mean, I think that we think of nonprofits and for-profits as, they’re different, but they’re not as different as we think they are, in that, you know, nonprofits are getting a tax break and they have to reinvest their profits. But it doesn’t mean they’re not making a lot of money. Some of them are. I mean, some of them have, you know, we’ve all walked into fancy nonprofits with, you know, fancy art and marble floors and so on and so forth. And we’ve all been in nonprofits that are barely keeping their doors open. So it’s your tax status. It’s not really, you know, your ethical status or the quality of care. I mean, there’s good nonprofits, there’s good for-profits. You know, this whole thing is like, if I were a hospital, I would be getting this huge tax break, and what am I doing to deserve it? And that’s the question.

Rovner: And I think the argument is, you know, that the 7.7% uninsured we were talking about, that hospitals are supposed to be providing care as part of their community benefit that the federal government now is ending up paying for. I think that’s sort of the frustration. If nonprofit hospitals were doing what they were supposed to do, it would cost federal and state governments less money, which always surprises me because this is not gone after more. I mean, Grassley has spent his whole career working on various types of government fraud. So this is totally in line for him. But it’s never just seemed to be a big priority for any administration.

Huetteman: There’s a little bit of an X factor here. Look at the fact that Grassley and Warren are talking about this publicly now. Maybe I’m just really optimistic from all the journalism we’ve been doing about projects like “Bill of the Month.” But the reality is that a lot of people are now seeing reporting that’s showing to them what nonprofit hospitals are actually doing when it comes to pursuing patients who don’t pay bills. And what it means to have community benefit comes into question a lot when you talk about wage garnishment, suing patients who are low-income for their medical debt. These are things that journalists have uncovered over and over again, happening at — ding, ding, ding — nonprofit hospitals. It’s harder to argue that hospitals are just doing their best for people when you have these stories of poor people who are losing their homes over unpaid medical bills, for instance. And I think that right now, when we’re in this political moment where health care costs are so, so potent to people and so important, I mean, could we see that this will actually be more effective, that we’re heading towards something that’s more effective? Maybe.

Rovner: Well, repeats the journalist, as we all are, the power of storytelling. Definitely the public is primed. I imagine that’s why they’re doing it now. We’ll see what comes of it.

Kenen: think the public is primed for bad practices. I’m not sure how many patients understand if the hospital they go to is a nonprofit or a for-profit. I think the public understands that everything in health care costs too much and that there are bad actors and greed. There’s a difference between profit and greed, and I think many people would say that we’re now in an era of greed. And not everybody in the health care sector — before anybody calls us up and shouts, “Not everybody who provides care is greedy” — but we’ve seen, you know, it is clearly out there. You know, you had Zeke Emanuel on a couple of weeks ago. Remember what he said, that, you know, 10 years ago, some people still liked their health care and now nobody likes their health care, rich or poor.

Rovner: Yeah, he’s right. All right. Well, that is this week’s news. Now, we’ll play my interview with Kate McEvoy of the National Association of Medicaid Directors about how the Medicaid unwinding is going. And one note before you listen: Kate frequently refers to the federal CMCS, which is not a misspeak; it stands for the Center for Medicaid and CHIP Services, which is the branch of CMS, the Centers for Medicare & Medicaid Services, that deals with Medicaid. So, here’s the interview:

I am pleased to welcome to the podcast Kate McEvoy, executive director of the National Association of Medicaid Directors, which is pretty much exactly what the name says, a group where state Medicaid officials can share information and ideas. Kate, welcome to “What the Health?”

Kate McEvoy: Good afternoon. Thanks for having me.

Rovner: Obviously, the Medicaid unwinding, which we have talked about a lot on the podcast, is Topic A for your members right now. Remind us again which Medicaid recipients are having their coverage eligibility rechecked? It’s not just those in the expansion group from the Affordable Care Act, right?

McEvoy: It’s not, no. Each and every person served by the country nationwide has to be reevaluated from an eligibility standpoint this year.

Rovner: What do we know about how it’s going? We’re seeing lots of reports that suggest the vast majority of people losing coverage are for paperwork reasons, not because they’ve been found to be no longer eligible. I know you recently surveyed your members. What are they telling you about this?

McEvoy: So, I first want to say this is an unprecedented task and it’s obviously historically significant for everyone served by the program. The volume of the work, and also the complexity, makes it a challenging task for all states and territories. But what we are seeing to date is a few things. First, we have seen an incredible effort on the part of states and territories to saturate really every means of communicating with their membership, really getting out that message around connecting with the programs, especially if an individual has moved during the period of the pandemic, which is very typical for people served by Medicaid. So that saturation of messaging and use of new means of connecting with people, like texting, really does represent a tremendous advance for the Medicaid program that has traditionally relied on a lot of complex, formal, legal notices to people. So that seems like a very positive thing. What we are seeing, and this is not unexpected, is that, you know, for reasons related to complex life circumstances and competing considerations, many people are not responding to those notices, no matter how we are transmitting those messages. And so that is a piece that is of great interest and concern to all of us, notably Medicaid directors wanting to make sure that eligible folks do not lose coverage simply because they are not responsive to the requests for more information. So we’re at a point where we’re beyond that initial push around messaging and now are really focused on means of protecting people who remain eligible, either through automatic review of their eligibility — the ex parte process — or by restoring them through such means as reconsideration. That’s really the main focus right now.

Rovner: And there’s that 90-day reconsideration window. Is that … how does that work?

McEvoy: So the federal law gives this period of 90 days to families and children within which they can be renewed with very little effort, essentially removing the responsibility to complete a new application. We also have long-standing help to people called “presumptive eligibility.” So if someone goes to a federally qualified health center or, more unfortunately, goes to the hospital, many of those types of providers can restore someone’s eligibility. So those are important protective pieces. We also know from the survey that you mentioned of our membership that many states and territories are extending those reconsideration protections to all coverage groups — also including older adults and people with disabilities.

Rovner: So are there any states that are doing anything that’s different and innovative? I remember when CHIP [the federal Children’s Health Insurance Program] was being stood up — and boy, that was a long time ago, like 1999 — South Carolina put flyers in pizza boxes, and some other state put flyers in sneaker boxes for back-to-school stuff. Are there better ways to maybe get ahold of these people?

McEvoy: So I think the answer is: a lot of different channels. Our colleagues in Louisiana have a partnership with Family Dollar stores to essentially feature this information on receipts. There’s a lot of work at pharmacy counters. Some of the big chain pharmacies have QR codes and other means of prompting people around their Medicaid eligibility. There’s going to be a big push for the back-to-school effort. And I think CMS and states are really interested, particularly in ensuring that children do not lose coverage even if their parents have regained employment and they’re no longer eligible. Another thing that’s going on is a lot of innovation in the means of enabling access to information. So many states have put in place personal apps through which people can track their own eligibility. There’s interest and some uptake of the so-called pizza-tracker function — so you can kind of see where you’re situated in that pipeline — and also a lot of use of automation to help call people back if they’re trying to get to state call centers. So really, all of those types of strategies … we’re seeing a huge amount of effort across the country.

Rovner: How’s the cooperation going with the Department of Health and Human Services? I know that … they seem to be not happy with some states. Are they being helpful, in general?

McEvoy: They’re being extraordinarily helpful. I would say that we often talk about Medicaid representing a federal-state equity partnership, and we’ve seen that manifest from the beginning of the first notice of the certainty around the start of the unwinding. CMCS has consistently offered guidance to states. They work with states using a mitigation approach as opposed to moving rapidly to compliance. We feel mitigation is the best way of essentially working out the strategies that are going to best protect continuing eligibility for people at the state level. And we really appreciate CMS’ efforts on that. We understand they do have to ensure accountability across the country, and we’re mutually committed to that.

Rovner: You better explain mitigation strategies.

McEvoy: Yeah, so this is a year where we are calling the question on eligibility standards that help ensure that the pathway to Medicaid coverage is a smooth one, and also that there is continuity of coverage. So, for any state that wasn’t yet meeting all those standards, CMCS essentially entered into an agreement with the state or territory to say, here is how you will get there. And that could have involved some means of improving the automatic renewals for Medicaid. It could have meant relying on an integrated eligibility processes. There are a lot of different tools and strategies that were put in place, but essentially that is a path to every state and territory coming into full compliance.

Rovner: Is there anything unexpected that’s happening? I know so much of this was predicted, and it was predicted that the states that went first that, you know, were really in a hurry to get extra people off of their rolls seem to be doing just that: getting extra people off of their rolls. Are you surprised at the differences among states?

McEvoy: I think that there have definitely been differences among states in terms of the tools they have used from a system standpoint, but I don’t see any differences in terms of retention of eligible people. That remains a shared goal across the entire country. And again, this is a watershed point where we have the opportunity to bring everyone to the same standards, ongoing, so that we help to prevent some of the heartache of the eligibility process for folks ongoing.

Rovner: Anything else I didn’t ask?

McEvoy: Well, I think that piece around the reconsideration period is particularly important. We are struck by there being probably less literacy around that option, and that’s something we want to continue to promote. The other piece I’d wind up by saying is that the Medicaid program is always available for people who are eligible. So in the worst-case scenario in which an otherwise eligible person loses coverage, they can always come back and be covered. This is in contrast to private insurance that may have an annual open enrollment period. Medicaid, as you know, is available on a rolling basis, and we want to keep reinforcing that theme so that no one goes with a gap in coverage.

Rovner: Kate McEvoy, thank you very much. And I hope we can call you back in a couple of months.

McEvoy: I would be very happy to hear from you.

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

Huetteman: My story this week comes from KFF Health News, my colleague Darius Tahir. He has a story called “The NIH Ices a Research Project. Is It Self-Censorship?” Now, the story talks about the fact that the former head of NIH Francis Collins, was, as he was leaving, announcing an effort to study health communications. And we’re talking about not just doctor-to-patient communications, but actually also how mass communications impact American health. But as Darius found out, the acting director quietly ended the program as NIH was preparing to open its grant applications. And officials who spoke with us said that they think political pressure over misinformation is to blame. Now, we don’t have to look too far for examples of conservative pressure over misinformation and information these days. In particular, there’s a notable one from just last month out of a Louisiana court, the federal court decision that blocked government officials from communicating with social media companies. You really don’t have to look too far to see that there’s a chilling effect on information. And we’re talking about the NIH was going to study or rather fund studies into communication and information. Not misinformation, information: how people get information about their health. So it’s a pretty interesting example and a really great story worth your read.

Rovner: And I’ve done nothing but preach about public health communication for three years now.

Kenen: It’s a very good story.

Rovner: Yeah, it was a really good story. Rachel, you’re next.

Roubein: All right. This story is called “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Stat News, by Mohana Ravindranath. And I thought this story was really interesting because she kind of dived into what Mohana called “a budding movement to make architecture more inclusive” for the people and patients who are spending a lot, a lot of time in hospital walls. And what some researchers are doing is using virtual reality to essentially gauge how comfortable children who are patients are in hospital rooms. And she talked to researchers at Berkeley who were using these, like, virtual reality headsets to kind of study and explore mocked-up hospital rooms. And, I didn’t know a ton about this field. I mean, apparently it’s not new, but it’s this kind of growing sort of movement to make patients more comfortable in the space that they’re inhabiting for perhaps long periods of time.

Rovner: I went to a conference on architecture, hospital architecture, making it more patient-centered, 10 years ago. But my favorite thing that I still remember from that is they talked about putting art on the ceiling because people are either in bed or they’re in gurneys. They’re looking up at the ceiling a lot. And ceilings are scary in hospitals. So that was one of the things that I took away from that. OK, Joanne, now it’s your turn.

Kenen: OK. This is from Fox News. And yes, you did hear that right. It’s by Melissa Rudy, and the headline is “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’.” So at Covenant Health, they had a bunch of high-level guys in suits pretend they were nursing and/or pumping mothers, and they had to nurse every three hours for 20 minutes at a time. And they found it was quite difficult and quite cumbersome and they didn’t have enough privacy. And as one of them said, “There was no way to multitask.” But trust me, if you have two kids, you have to figure that out, too. So it was a really good story.

Rovner: Some of these things that we feel like should be required everywhere, but it was a great read; it was a really good story. OK, that is our show for this week. 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 this week to Zach Dyer, sitting in for the indefatigable Francis Ying. And as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me or X me or whatever; I’m @jrovner. And also on Bluesky and Threads. Rachel?

Roubein: @rachel_roubein — that’s on Twitter.

Rovner: Joanne.

Kenen: In most places I’m @JoanneKenen. On Threads, I’m @joannekenen1.

Rovner: Emmarie.

Huetteman: And I am @emmarieDC.

Rovner: 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.

The Biden administration continued a bipartisan, decades-long effort to ensure that health insurance treats mental illnesses the same as other ailments, with a new set of regulations aimed at ensuring that services are actually available without years-long waits or excessive out-of-pocket costs.

Meanwhile, two more committees in Congress approved bills this week aimed at reining in the power of pharmacy benefit managers, who are accused of keeping prescription drug prices high to increase their bottom lines.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Anna Edney
Bloomberg

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Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Among the takeaways from this week’s episode:

• The Biden administration’s new rules to enforce federal mental health parity requirements include no threat of sanctions when health plans do not comply; noncompliance with even the most minimal federal rules has been a problem dating to the 1990s. Improving access to mental health care is not a new policy priority, nor a partisan one, yet it remains difficult to achieve.
• With the anniversary of the 988 Suicide & Crisis Lifeline, more people are becoming aware of how to access help and get it. Challenges remain, however, such as the hotline service’s inability to connect callers with local care. But the program seizes on the power of an initial connection for someone in a moment of crisis and offers a lifeline for a nation experiencing high rates of depression, anxiety, and suicide.
• In news about the so-called Medicaid unwinding, 12 states have paused disenrollment efforts amid concerns they are not following renewal requirements. A major consideration is that most people who are disenrolled would qualify to obtain inexpensive or even free coverage through the Affordable Care Act. But reenrollment can be challenging, particularly for those with language barriers or housing insecurity, for instance.
• With a flurry of committee activity, Congress is revving up to pass legislation by year’s end targeting the role of pharmacy benefit managers — and, based on the advertisements blanketing Washington, PBMs are nervous. It appears legislation would increase transparency and inform policymakers as they contemplate further, more substantive changes. That could be a tough sell to a public crying out for relief from high health care costs.
• Also on Capitol Hill, far-right lawmakers are pushing to insert abortion restrictions into annual government spending bills, threatening yet another government shutdown on Oct. 1. The issue is causing heartburn for less conservative Republicans who do not want more abortion votes ahead of their reelection campaigns.
• And the damage to a Pfizer storage facility by a tornado is amplifying concerns about drug shortages. After troubling problems with a factory in India caused shortages of critical cancer drugs, decision-makers in Washington have been keeping an eye on the growing issues, and a response may be brewing.

Also this week, Rovner interviews KFF Health News’ Céline Gounder about the new season of her “Epidemic” podcast. This season chronicles the successful public health effort to eradicate smallpox.

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

Julie Rovner: The Nation’s “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality,” by Amy Littlefield.

Joanne Kenen: Food & Environment Reporting Network’s “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” by Gabriel Popkin.

Anna Edney: Bloomberg’s “Mineral Sunscreens Have Potential Hidden Dangers, Too,” by Anna Edney.

Sarah Karlin-Smith: CNN’s “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” by Brenda Goodman.

Also mentioned in this week’s episode:

• CNN’s “Medicaid Disenrollments Paused in a Dozen States After Failure to Comply With Federal Rules,” by Tami Luhby.
• Abortion, Every Day’s “Why Are OBGYNs Being Forced to Go to Texas?” by Jessica Valenti.
• Politico’s “GOP Looks to Spending Fights for Wins on Abortion, Trans Care, Contraception,” by Alice Miranda Ollstein.
• KFF Health News’ “A Year With 988: What Worked? What Challenges Lie Ahead,” by Colleen DeGuzman.

click to open the transcript

Transcript: Another Try for Mental Health ‘Parity’

KFF Health News’ ‘What the Health?’Episode Title: Another Try for Mental Health ‘Parity’Episode Number: 307Published: July 27, 2023

[Editor’s note: This transcript, generated using transcription software, 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, July 27, 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 Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: Sarah Karlin-Smith, the Pink Sheet.

Sarah Karlin-Smith: Hi, Julie.

Rovner: And Anna Edney of Bloomberg News.

Edney: Hello.

Rovner: Later in this episode, we’ll have my interview with my KFF colleague Céline Gounder about the new season of her podcast “Epidemic,” which tracks one of the last great public health success stories, the eradication of smallpox. But first, this week’s news. I want to start this week with mental health, which we haven’t talked about in a while — specifically, mental health parity, which is both a law and a concept, that mental ailments should be covered and reimbursed by health insurance the same way as a broken bone or case of pneumonia or any other — air quotes — “physical ailment.” Policymakers, Republican and Democrat, and the mental health community have been fighting pretty much nonstop since the mid-1990s to require parity. And despite at least five separate acts of Congress over that time — I looked it up this week — we are still not there yet. To this day, patients with psychiatric illnesses find their care denied reimbursement, made difficult to access, or otherwise treated as lesser. This week, the Biden administration is taking another whack at the issue, putting out proposed rules it hopes will start to close the remaining parity gap, among other things by requiring health plans to analyze their networks and prior authorization rules and other potential barriers to care to ensure that members actually can get the care they need. What I didn’t see in the rules, though, was any new threat to sanction plans that don’t comply — because plans have been not complying for a couple of decades now. How much might these new rules help in the absence of a couple of multimillion-dollar fines?

Edney: I had that same question when I was considering this because I didn’t see like, OK, like, great, they’re going to do their self-policing, and then what? But I do think that there’s the possibility, and this has been used in health care before, of public shaming. If the administration gets to look over this data and in some way compile it and say, here’s the good guys, here’s the bad guys, maybe that gets us somewhere.

Rovner: You know, it strikes me, this has been going on for so very long. I mean, at first it was the employer community actually that did most of the negotiating, not the insurers. Now that it’s required, it’s the insurers who are in charge of it. But it has been just this incredible mountain to scale, and nobody has been able to do it yet.

Kenen: And it’s always been bipartisan.

Rovner: That’s right.

Kenen: And it really goes back to mostly, you know, the late Sen. [Paul] Wellstone [(D-Minn.)] and [Sen. Pete] Domenici [(R-N.M.)], both of whom had close relatives with serious mental illness. You know, Domenici was fairly conservative and traditional conservative, and Wellstone was extremely liberal. And they just said, I mean, this — the parity move began — the original parity legislation, at least the first one I’m aware of. And it was like, I think it was before I came to Washington. I think it was in the ’80s, certainly the early — by the ’90s.

Rovner: It was 1996 when when the first one actually passed. Yeah.

Kenen: I mean, they started talking about it before that because it took them seven or eight years. So this is not a new idea, and it’s not a partisan idea, and it’s still not done. It’s still not there.

Edney: I think there’s some societal shift too, possibly. I mean, we’re seeing it, and maybe we’re getting closer. I’ve seen a lot of billboards lately. I’ve done some work travel. When I’m on the road, I feel like I’m always seeing these billboards that are saying mental health care is health care. And trying to hammer that through has really taken a long time.

Rovner: So while we are on the subject of mental health, one of the good things I think the government has done in the last year is start the 988 Suicide & Crisis Lifeline, which turned 1 this month. Early data from shifting the hotline from a 10-digit number to a three-digit one that’s a lot easier to remember does suggest that more people are becoming aware of immediate help and more people are getting it. At the same time, it’s been able to keep up with the demand, even improving call answering times — I know that was a big concern — but there is still a long way to go, and this is hardly a panacea for what we know is an ongoing mental health crisis, right?

Karlin-Smith: This is a good first step to get people in crisis help without some of the risks that we’ve seen. If you go towards the 911 route, sometimes police are not well trained to handle these calls and they end in worse outcomes than necessary. But then you have to have that second part, which is what we were talking about before, which is the access to the longer-term mental health support to actually receive the treatment you need. There’s also some issues with this hotline going forward in terms of long-term funding and, you know, other tweaks they need to work out to make sure, again, that people who are not expecting to interact with law enforcement actually don’t end up indirectly getting there and things like that as well.

Kenen: Do any of you know whether there’s discussion of sort of making people who don’t remember it’s 988 and they call 911 — instead of dispatching cops, are the dispatchers being trained to just transfer it over to 988?

Rovner: That I don’t know.

Kenen: I’m not aware of that. But it just sort of seems common sense.

Rovner: One thing I know they’re working on is, right now I think there’s no geolocation. So when you call 988, you don’t necessarily get automatically referred to resources that are in your community because they don’t necessarily know where you’re calling from. And I know that’s an effort. But yeah, I’m sure there either is or is going to be some effort to interact between 988 and 911.

Kenen: It’s common sense to us. It doesn’t mean it’s actually happening. I mean, this is health care.

Rovner: As we point out, this is mental health care, too.

Kenen: Yeah, right.

Rovner: It’s a step.

Kenen: But I think that, you know, sort of the power of that initial connection is something that’s easy for people to underestimate. I mean, my son in college was doing a helpline during 2020-2021. You know, he was trained, and he was also trained, like, if you think this is beyond what a college-aged volunteer, that if you’re uncertain, you just switched immediately to a mental health professional. But sometimes it’s just, people feel really bad and just having a voice gets them through a crisis moment. And as we all know, there are a lot of people having a lot of crisis moments. I doubt any of us don’t know of a suicide in the last year, and maybe not in our immediate circle, but a friend of a friend, I mean, or, you know — I know several. You know, we are really at a moment of extreme crisis. And if a phone call can help some percentage of those people, then, you know, it needs to be publicized even more and improved so it can be more than a friendly voice, plus a connection to what, ending this repetition of crisis.

Rovner: I feel like the people who worked hard to get this implemented are pretty happy a year later at how, you know — obviously there’s further to go — but they’re happy with how far they’ve come. Well, so, probably the only thing worse than not getting care covered that should be is losing your health coverage altogether, which brings us to the Medicaid unwinding, as states redetermine who’s still eligible for Medicaid for the first time since the start of the pandemic. Our podcast colleague Tami Luhby over at CNN had a story Friday that I still haven’t seen anywhere else. Apparently 12 states have put their disenrollments on pause, says Tami. But we don’t know which 12, according to the KFF disenrollment tracker. As of Wednesday, July 26, at least 3.7 million people have been disenrolled from the 37 states that are reporting publicly, nearly three-quarters of those people for, quote, “procedural reasons,” meaning those people might still be eligible but for some reason didn’t complete the renewal process. The dozen states on pause are apparently ones that HHS [the Department of Health and Human Services] thinks are not following the renewal requirements and presumably ones whose disenrollments are out of line. The Centers for Medicare & Medicaid Services, which is overseeing this, is not naming those states, but this points up exactly what a lot of people predicted would happen when states started looking at eligibility again, that a lot of people who were quite likely still eligible were simply going to lose their insurance altogether, right?

Edney: Yeah, it seemed like there was a lot of preparation in some ways to anticipating this. And then, yeah, obviously you had the states that were just raring to go and try to get people off the rolls. And yeah, it would be very interesting to know what those 12 are. I think Tami’s reporting was stellar and she did a really good job. But that’s, like, one piece of the puzzle we’re missing. And I know CMS said that they’re not naming them because they are working well with them to try to fix it.

Rovner: The one thing we obviously do know is that there are several states that are doing this faster than is required — in fact, faster than is recommended. And what we know is that the faster they do it, the more likely they are going to have people sort of fall between the cracks. The people who are determined to be no longer eligible for Medicaid are supposed to be guided to programs for which they are eligible. And presumably most of them, unless they have, you know, gotten a really great job or hit the lottery, will still be eligible at least for subsidies under the Affordable Care Act. And they’re supposed to be guided to those programs. And it’s not clear yet whether that’s happening, although I know there are an awful lot of people who are watching this pretty closely. There were over 90 million people on Medicaid by the end of the pandemic, by the point at which states no longer had to keep people on. That’s a lot more people than Medicaid normally has. It’s usually more around 70 or even 80 million. So there’s excess people. And the question is what’s going to happen to those people and whether they’re going to have some sort of health insurance. And I guess it’s going to be more than a couple of months before we know that. Yes, Joanne.

Kenen: I think that it’s important to remember that there’s no open enrollment season for Medicaid the way there is for the ACA, so that if you’re disenrolled and you get sick and you go to a doctor or a hospital, they can requalify you and you can get it again. The problem is people who think that they’re disenrolled or are told that they’re disenrolled may not realize. They may not go to the doctor because they think they can’t afford it. They may not understand there’s a public education campaign there, too, that I haven’t seen. You know, if you get community health clinics, hospitals, they can do Medicare, Medicaid certification. But it’s dangerous, right? If you think, oh, I’m going to get a bill I can’t afford and I’m just going to see if I can tough this out, that’s not the way to take care of your health. So there’s that additional conundrum. And then, you know, I think that HHS can be flexible on special enrollment periods for those who are not Medicaid-eligible and are ACA-eligible, but most of them are still Medicaid-eligible.

Rovner: If you get kicked off of Medicaid, you get an automatic special enrollment for the ACA anyway.

Kenen: But not forever. If the issue is it’s in a language you don’t speak or at an address you don’t live in, or you just threw it out because you didn’t understand what it was — there is institutional failures in the health care system, and then there’s people have different addresses in three years, particularly poor people; they move around. There’s a communication gap. You know, I talked to a health care system a while ago in Indiana, a safety net, that was going through electronic health records and contacting people. And yet that’s Indiana and they, you know, I think it was Tami who pointed out a few weeks ago on the podcast, Indiana is not doing great, in spite of, you know, really more of a concerted effort than other states or at least other health systems, not that I talk to every single health system in the country. I was really impressed with how proactive they were being. And still people are falling, not just through the cracks. I mean, there’s just tons of cracks. It’s like, you know, this whole landscape of cracks.

Rovner: I think everybody knew this was going to be a big undertaking. And obviously the states that are trying to do it with some care are having problems because it’s a big undertaking. And the states that are doing it with a little bit less care are throwing a lot more people off of their health insurance. And we will continue to follow this. So it is the end of July. I’m still not sure how that happened.

Kenen: ’Cause after June, Julie.

Rovner: Yes. Thank you. July is often when committees in Congress rush to mark up bills that they hope to get to the floor and possibly to the president in that brief period when lawmakers return from the August recess before they go out for the year, usually around Thanksgiving. This year is obviously no exception. While Sen. Bernie Sanders [(I-Vt.)] at the Health, Education, Labor and Pensions Committee has delayed consideration of that primary care-community health center bill that we talked about last week until September, after Republicans rebelled against what was supposed to have been a bipartisan bill, committee action on pharmacy benefit managers and other Medicare issues did take place yesterday in the Senate Finance Committee and the House Ways and Means Committee. Sarah, you’re following this, right? What’s happening? And I mean, so we’ve now had basically all four of the committees that have some kind of jurisdiction over this who’ve acted. Is something going to happen on PBM regulation this year?

Karlin-Smith: Actually, five committees have acted because the House Ed[ucation] and Workforce Committee has also acted on the topic. So there’s a lot of committees with a stake in this. I think there’s certainly set up for something for the fall, end of the year, to happen in the pharmacy benefit manager space. And there’s a decent amount of bipartisanship around the issue, depending on exactly which committee you’re looking at. But even if the policies that haven’t gotten through haven’t been bipartisan, I think there’s general bipartisan interest among all the committees of tackling the issue. The question is how meaningful, I guess, the policies that we get done are. Right now it looks like what we’re going to end up with is some kind of transparency measure. It reminded me a little bit of our discussion of the mental health stuff [President Joe] Biden is doing going forward. Essentially what it’s going to end up doing is get the government a lot of detailed data about how PBMs operate, how this vertical integration of PBMs — so there’s a lot of common ownership between PBMs, health insurance plans, pharmacies and so forth — may be impacting the cost of our health care and perhaps in a negative way. And then from that point, the idea would be that later Congress could go back and actually do the sort of policy reforms that might be needed. So I know there are some people that are super excited about this transparency because it is such an opaque industry. But at the same point, you can’t kind of go to your constituents and say, “We’ve changed something,” right away or, you know, “We’re going to save you a ton of money with this kind of legislation.”

Rovner: You could tell how worried the PBMs are by how much advertising you see, if you still watch TV that has advertising, which I do, because I watch cable news. I mean, the PBMs are clearly anxious about what Congress might do. And given the fact that, as you point out and as we’ve been saying for years, drug prices are a very bipartisan issue — and it is kind of surprising, like mental health, it’s bipartisan, and they still haven’t been able to push this as far as I think both Democrats and Republicans would like for it to go. Is there anything in these bills that surprised you, that goes further than you expected or less far than expected?

Karlin-Smith: There’s been efforts to sort of delink PBM compensation from rebates. And in the past, when Congress has tried to look into doing this, it’s ended up being extremely costly to the government. And they figured out in this set of policies sort of how to do this without those costs, which is basically, they’re making sure that the PBMs don’t have this perverse incentive to make money off of higher-priced drugs. However, the health plans are still going to be able to do that. So it’s not clear how much of a benefit this will really be, because at this point, the health plans and the PBMs are essentially one and the same. They have the same ownership. But, you know, I do think there has been some kind of creativity and thoughtfulness on Congress’ part of, OK, how do we tackle this without also actually increasing how much the government spends? Because the government helps support a lot of the premiums in these health insurance programs.

Rovner: Yeah. So the government has quite a quite a financial stake in how this all turns out. All right. Well, we will definitely watch that space closely. Let us move on to abortion. In addition to it being markup season for bills like PBMs, it’s also appropriations season on Capitol Hill, with the Sept. 30 deadline looming for a completion of the 12 annual spending bills. Otherwise, large parts of the government shut down, which we have seen before in recent years. And even though Democrats and Republicans thought they had a spending detente with the approval earlier this spring of legislation to lift the nation’s debt ceiling, Republicans in the House have other ideas; they not only want to cut spending even further than the levels agreed to in the debt ceiling bill, but they want to add abortion and other social policy riders to a long list of spending bills, including not just the one for the Department of Health and Human Services but the one for the Food and Drug Administration, which is in the agriculture appropriations, for reasons I’ve never quite determined; the financial services bill, which includes funding for abortion in the federal health insurance plan for government workers; and the spending bill for Washington, D.C., which wants to use its own taxpayer money for abortion, and Congress has been making that illegal pretty much for decades. In addition to abortion bans, conservatives want riders to ban gender-affirming care and even bar the FDA from banning menthol cigarettes. So it’s not just abortion. It’s literally a long list of social issues. Now, this is nothing new. A half a dozen spending bills have carried a Hyde [Amendment] type of abortion ban language for decades, as neither Republicans nor Democrats have had the votes to either expand or take away the existing restrictions. On the other hand, these conservatives pushing all these new riders don’t seem to care if the government shuts down if these bills pass. And that’s something new, right?

Kenen: Over abortion it’s something new, but they haven’t cared. I mean, they’ve shut down the government before.

Rovner: That’s true. The last time was over Obamacare.

Kenen: Right. And, which, the great irony is the one thing they — when they shut down the government because Obamacare was mandatory, not just discretionary funding, Obamacare went ahead anyway. So, I mean, minor details, but I think this is probably going to be an annual battle from now on. It depends how hard they fight for how long. And with some of these very conservative, ultra-conservative lawmakers, we’ve seen them dig in on abortion, on other issues like the defense appointees. So I think it’s going to be a messy October.

Rovner: Yeah, I went back and pulled some of my old clips. In the early 1990s I used to literally keep a spreadsheet, and I think that’s before we had Excel, of which bill, which of the appropriations bills had abortion language and what the status was of the fights, because they were the same fights year after year after year. And as I said, they kind of reached a rapprochement at one point, or not even a rapprochement — neither side could move what was already there. At some point, they kind of stopped trying, although we have seen liberals the last few years try to make a run at the actual, the original Hyde Amendment that bans federal funding for most abortions — that’s in the HHS bill — and unsuccessfully. They have not had the votes to do that. Presumably, Republicans don’t have the votes now to get any of these — at least certainly not in the Senate — to get any of these new riders in. But as we point out, they could definitely keep the government closed for a while over it. I mean, in the Clinton administration, President [Bill] Clinton actually had to swallow a bunch of new riders because either it was that or keep the government closed. So that’s kind of how they’ve gotten in there, is that one side has sort of pushed the other to the brink. You know, everybody seems to assume at this point that we are cruising towards a shutdown on Oct. 1. Does anybody think that we’re not?

Kenen: I mean, I’m not on the Hill anymore, but I certainly expect a shutdown. I don’t know how long it lasts or how you resolve it. And I — even more certain we’ll have one next year, which, the same issues will be hot buttons five weeks before the elections. So whatever happens this year is likely to be even more intense next year, although, you know, next year’s far away and the news cycle’s about seven seconds. So, you know, I think this could be an annual fight and for some time to come, and some years will be more intense than others. And you can create a deal about something else. And, you know, the House moderates are — there are not many moderates — but they’re sort of more traditional conservatives. And there’s a split in the Republican Party in the House, and we don’t know who’s going to fold when, and we don’t — we haven’t had this kind of a showdown. So we don’t really know how long the House will hold out, because some of the more moderate lawmakers who are — they’re all up for reelection next year. I mean, some of them don’t agree. Some of are not as all or nothing on abortion as the —

Rovner: Well, there are what, a dozen and a half Republicans who are in districts that President Biden won who do not want to vote on any of these things and have made it fairly clear to their leadership that they do not want to vote on any of these things. But obviously the conservatives do.

Kenen: And they’ve been public about that. They’ve said it. I mean, we’re not guessing. Some of them spoke up and said, you know, leave it to the states. And that’s what the court decided. And they don’t want to nationalize this even further than it’s nationalized. And I think, you know, when you have the Freedom Caucus taking out Marjorie Taylor Greene, I mean, I have no idea what’s next.

Rovner: Yeah, things are odd. Well, I want to mention one more abortion story this week that I read in the newsletter “Abortion, Every Day,” by Jessica Valenti. And shoutout here: If you’re interested in this issue and you don’t subscribe, you’re missing out. I will include the link in the show notes. The story’s about Texas and the exam to become a board-certified obstetrician-gynecologist. The board that conducts the exam is based in Dallas and has been for decades, and Texas is traditionally where this test has been administered. During the pandemic, the exam was given virtually because nothing was really in person. But this year, if a doctor wants to become board-certified, he or she will have to travel to Texas this fall. And a lot of OB-GYNs don’t want to do that, for fairly obvious reasons, like they are afraid of getting arrested and sent to prison because of Texas’ extreme anti-abortion laws. And yikes, really, this does not seem to be an insignificant legal risk here for doctors who have been performing abortions in other states. This is quite the dilemma, isn’t it?

Karlin-Smith: Well, the other thing I thought was interesting about — read part of that piece — is just, she was pointing out that you might not just want to advertise in a state where a lot of people are anti-abortion that all of these people who perform abortions are all going to be at the same place at the same time. So it’s not just that they’re going to be in Texas. Like, if anybody wants to go after them, they know exactly where they are. So it can create, if nothing else, just like an opportunity for big demonstrations or interactions that might disrupt kind of the normal flow of the exam-taking.

Kenen: Or violence. Most people who are anti-abortion are obviously not violent, but we have seen political violence in this country before. And you just need one person, which, you know, we seem to have plenty of people who are willing to shoot at other people. I thought it was an excellent piece. I mean, I had not come across that before until you sent it around, and there’s a solution — you know, like, if you did it virtually before — and I wasn’t clear, or maybe I just didn’t pay attention: Was this certification or also recertification?

Rovner: No, this was just certification. Recertification’s separate. So these are these are young doctors who want to become board-certified for the first time.

Kenen: But the recertification issues will be similar. And this is a yearly — I mean, I don’t see why they just don’t give people the option of doing it virtual.

Rovner: But we’ll see if they back down. But you know, I had the same thought that Sarah did. It’s like, great, let’s advertise that everybody’s going to be in one place at one time, you know, taking this exam. Well, we’ll see how that one plays out. Well, finally this week, building on last week’s discussion on health and climate change and on drug shortages, a tornado in Rocky Mount, North Carolina, seriously damaged a giant Pfizer drug storage facility, potentially worsening several different drug shortages. Sarah, I remember when the hurricane in Puerto Rico seemed to light a fire under the FDA and the drug industry about the dangers of manufacturing being too centralized in one place. Now we have to worry about storage, too? Are we going to end up, like, burying everything underground in Fort Knox?

Karlin-Smith: I think there’s been a focus even since before [Hurricane] Maria, but that certainly brought up that there’s a lack of redundancy in U.S. medical supply chains and, really, global supply chains. It’s not so much that they need to be buried, you know, that we need bunkers. It’s just that — Pfizer had to revise the numbers, but I think the correct number was that that facility produces about 8% of the sterile kind of injectables used in the U.S. health system, 25% of all Pfizer’s — it’s more like each company or the different plants that produce these drugs, it needs to be done in more places so that if you have these severe weather events in one part of the country, there’s another facility that’s also producing these drugs or has storage. So I don’t know that these solutions need to be as extreme as you brought up. But I think the problem has been that when solutions to drug shortages have come up in Congress, they tend to focus on FDA authorities or things that kind of nibble around the edges of this issue, and no one’s ever really been able to address some of the underlying economic tensions here and the incentives that these companies have to invest in redundancy, invest in better manufacturing quality, and so forth. Because at the end of the day these are often some of the oldest and cheapest drugs we have, but they’re not necessarily actually the easiest to produce. While oftentimes we’re talking about very expensive, high-cost drugs here, this may be a case where we have to think about whether we’ve let the prices drop too low and that’s sort of keeping a market that works if everything’s going perfectly well but then leads to these shortages and other problems in health care.

Rovner: Yeah, the whole just-in-time supply chain. Well, before we leave this, Anna, since you’re our expert on this, particularly international manufacturing, I mean, has sort of what’s been happening domestically lit a fire under anybody who’s also worried about some of these, you know, overseas plants not living up to their safety requirements?

Edney: Well, I think there are these scary things happen like a tornado or hurricane and everybody is kind of suddenly paying attention. But I think that the decision-makers in the White House or on Capitol Hill have been paying attention a little bit longer. We’ve seen these cancer — I mean, for a long time not getting anything done, as Sarah mentioned — but recently, it’s sort of I think the initial spark there was these cancer drug shortages that, you know, people not being able to get their chemo. And that was from an overseas factory; that was from a factory in India that had a lot of issues, including shredding all of their quality testing documents and throwing them in a truck, trying to get it out of there before the FDA inspectors could even see it.

Kenen: That’s always very reassuring.

Edney: It is. Yeah. It makes you feel really good. And one bag did not make it out of the plant in time, so they just threw acid on it instead of letting FDA inspectors look at it. So it’s definitely building in this tornado. And what might come out of it if there are a lot of shortages, I haven’t seen huge concern yet from the FDA on that front. But I think that it’s something that just keeps happening. It’s not letting up. And, you know, my colleagues did a really good story yesterday. There’s a shortage of a certain type of penicillin you give to pregnant people who have syphilis. If you pass syphilis on to your baby, the baby can die or be born with a lot of issues — it’s not like if an adult gets syphilis — and they’re having to ration it, and adults aren’t getting treated fully for syphilis because the babies need it more so, and so this is like a steady march that just keeps going on. And there’s so many issues with the industry, sort of how it’s set up, what Sarah was talking about, that we haven’t seen anybody really be able to touch yet.

Rovner: We will continue to stay on top of it, even if nobody else does. Well, that is this week’s news. Now we will play my interview with KFF’s Céline Gounder, and then we will come back and do our extra credit. I am pleased to welcome back to the podcast Dr. Céline Gounder, KFF senior fellow and editor-at-large for public health, as well as an infectious disease specialist and epidemiologist in New York and elsewhere. Céline is here today to tell us about the second season of her podcast, “Epidemic,” which tells the story of the successful effort to eradicate smallpox and explores whether public health can accomplish such big things ever again. Céline, thank you for joining us.

Céline Gounder: It’s great to be here, Julie.

Rovner: So how did you learn about the last steps in the journey to end smallpox, and why did you think this was a story worth telling broadly now?

Gounder: Well, this is something I actually studied back when I was in college in the ’90s, and I did my senior thesis in college on polio eradication, and this was in the late ’90s, and we have yet to eradicate polio, which goes to show you how difficult it is to eradicate an infectious disease. And in the course of doing that research, I was an intern at the World Health Organization for a summer and then continued to do research on it during my senior year. I also learned a lot about smallpox eradication. I got to meet a lot of the old leaders of that effort, folks like D.A. Henderson and Ciro de Quadros. And fast-forward to the present day: I think coming out of covid we’re unfortunately not learning what at least I think are the lessons of that pandemic. And I think sometimes it’s easier to go back in time in history, and that helps to depoliticize things, when people’s emotions are not running as high about a particular topic. And my thought was to go back and look at smallpox: What are the lessons from that effort, a successful effort, and also to make sure to get that history while we still have some of those leaders with us today.

Rovner: Yes, you’re singing my song here. I noticed the first episode is called “The Goddess of Smallpox.” Is there really a goddess of smallpox?

Gounder: There is: Shitala Mata. And the point of this episode was really twofold. One was to communicate the importance of understanding local culture and beliefs, not to dismiss these as superstitions, but really as ways of adapting to what was, in this case, a very centuries-long reality of living with smallpox. And the way people thought about it was that in some ways it was a curse, but in some ways it was also a blessing. And understanding that dichotomy is also important, whether it’s with smallpox or other infectious diseases. It’s important to understand that when you’re trying to communicate about social and public health interventions.

Rovner: Yeah, because I think people don’t understand that public health is so unique to each place. I feel like in the last 50 years, even through HIV and other infectious diseases, the industrialized world still hasn’t learned very well how to deal with developing countries in terms of cultural sensitivity and the need for local trust. Why is this a lesson that governments keep having to relearn?

Gounder: Well, I would argue we don’t even do it well in our own country. And I think it’s because we think of health in terms of health care, not public health, in the United States. And that also implies a very biomedical approach to health issues. And I think the mindset here is very much, oh, well, once you have the biomedical tools — the vaccines, the diagnostics, the drugs — problem solved. And that’s not really solving the problem in a pandemic, where much of your challenge is really social and political and economic and cultural. And so if you don’t think about it in those terms, you’re really going to have a flat-footed response.

Rovner: So what should we have learned from the smallpox eradication effort that might have helped us deal with covid or might help us in the future deal with the next pandemic?

Gounder: Well, I think one side of this is really understanding what the local culture was, spending time with people in community to build trust. I think we came around to understanding it in part, in some ways, in some populations, in some geographies, but unfortunately, I think it was very much in the crisis and not necessarily a long-term concerted effort to do this. And that I think is concerning because we will face other epidemics and pandemics in the future. So, you know, how do you lose trust? How do you build trust? I think that’s a really key piece. Another big one is dreaming big. And Dr. Bill Foege — he was one of the leaders of smallpox eradication, went on to be the director of the CDC [Centers for Disease Control and Prevention] under President [Jimmy] Carter — one of the pieces of advice he’s given to me as a mentor over the years is you’ve got to be almost foolishly optimistic about getting things done, and don’t listen to the cynics and pessimists. Of course, you want to be pragmatic and understand what will or won’t work, but to take on such huge endeavors as eradicating smallpox, you do have to be very optimistic and remind yourself every day that this is something you can do if you put your mind to it.

Rovner: I noticed, at least in the first couple of episodes that I’ve listened to, the media doesn’t come out of this looking particularly good. You’re both a journalist and a medical expert. What advice do you have for journalists trying to cover big public health stories like this, like covid, like things that are really important in how you communicate this to the public?

Gounder: Well, I think one is try to be hyperlocal in at least some of your reporting. I think one mistake during the pandemic was having this very top-down perspective of “here is what the CDC says” or “here is what the FDA says” or whomever in D.C. is saying, and that doesn’t really resonate with people. They want to see their own experiences reflected in the reporting and they want to see people from their community, people they trust. And so I think that is something that we should do better at. And unfortunately, we’re also somewhat hampered in doing so because there’s been a real collapse of local journalism in most of the country. So it really does fall to places like KFF Health News, for example, to try to do some of that important reporting.

Rovner: We will all keep at it. Céline Gounder, thank you so much for joining us. You can find Season 2 of “Epidemic,” called “Eradicating Smallpox,” wherever you get your podcasts.

Gounder: Thanks, Julie.

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

Karlin-Smith: Sure. I took a look at a piece from Brenda Goodman at CNN called “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” and it’s a really good deep dive into — people probably have heard of Ozempic, Wegovy — these what are called GLP-1 drugs that have been used for diabetes. And we’ve realized in higher doses even for people without diabetes, they often are very helpful at losing weight, that that’s partially because they slow the passage of food through your stomach. And there are questions about whether for some people that is leading to stomach paralysis or other extreme side effects. And I think it’s a really interesting deep dive into the complicated world of figuring out, Is this caused by the drug? Is it caused by other conditions that people have? And then how should you counsel people about whether they should receive the drugs and the benefits outweighing the risks? So I think it’s like just a good thing for people to read when you sort of hear all this hype about a product and how great they must be, that it’s always a little bit more complicated than that. And it also brought up another aspect of it, which is how these drugs may impact people who are going to get surgery and anesthesia and just the importance of communicating this to your doctor so they know how to appropriately handle the drugs. Because if you still have food content in your stomach during a surgery, that can be extremely dangerous. And I thought just that aspect alone of this story is really interesting, because they talk about people maybe not wanting to even let their doctors know they’re on these drugs because of stigma surrounding weight loss. And just again, once you get a new medicine that might end up being taken by a lot of people, the complications or, you know, there’s the dynamics of how it impacts other parts of medicine, and we need to adjust.

Rovner: Yeah. And I think the other thing is, you know, we know these drugs are safe because people with diabetes have been taking them for, what, six or seven years. But inevitably, anytime you get a drug that lots more people take, then you start to see the outlier side effects, which, if it’s a lot of people, can affect a lot of people. Joanne.

Kenen: I have a piece from FERN, which is the Food & Environment Reporting Network and in partnership with Yale Environ 360, and it’s by Gabriel Popkin. And it’s called “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” And I knew nothing about smart agriculture, which is why I found this so interesting. So, this is an intersection of climate change and food, which is obviously also a factor in climate change. And there’s a lot of money from the Biden administration for farmers to use new techniques that are more green-friendly because as we all know, you know, beef and dairy, things that we thought were just good for us — maybe not beef so much — but, like, they’re really not so good for the planet we live on. So can you do things like, instead of using fertilizer, plant cover crops in the offseason? I mean, there’s a whole list of things that — none of us are farmers, but there’s also questions about are they going to work? Is it greenwashing? Is it stuff that will work but not in the time frame that this program is funding? How much of it’s going to go to big agribusiness, and how much of it is going to go to small farmers? So it’s one hand, it’s another. You know, there’s a lot of low-tech practices. We’re going to have to do absolutely everything we can on climate. We’re going to have to use a variety of — you know, very large toolkit. So it was interesting to me reading about these things that you can do that make agriculture, you know, still grow our food without hurting the planet, but also a lot of questions about, you know, is this really a solution or not? But, you know, I didn’t know anything about it. So it was a very interesting read.

Rovner: And boy, you think the drug companies are influential on Capitol Hill. Try going with big agriculture. Anna.

Edney: I’m going to toot my own horn for a second here —

Rovner: Please.

Edney: — and do one of my mini-investigations that I did, “Mineral Sunscreens Have Potential Hidden Dangers, Too.” So there’s been a lot of talk: Use mineral sunscreen to save the environment or, you know, for your own health potentially. But they’re white, they’re very thick. And, you know, people don’t want to look quite that ghostly. So what’s been happening lately is they’ve been getting better. But what I found out is a lot of that is due to a chemical — that is what people are trying to move away from, is chemical sunscreens — but the sunscreen-makers are using this chemical called butyloctyl salicylate. And you can read the article for kind of the issues with it. I guess the main one I would point out is, you know, I talked to the Environmental Working Group because they do these verifications of sunscreens based on their look at how good are they for your health, and a couple of their mineral ones had this ingredient in it. So when I asked them about it, they said, Oh, whoops; like, we do actually need to revisit this because it is a chemical that is not recommended for children under 4 to be using on their bodies. So there’s other issues with it, too — just the question of whether you’re really being reef-safe if it’s in there, and other things as well.

Rovner: It is hard to be safe and be good to the planet. My story this week is by Amy Littlefield of The Nation magazine, and it’s called “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality.” It’s about her visit to the annual conference of the National Right to Life Committee, which for decades was the nation’s leading anti-abortion organization, although it’s been eclipsed by some others more recently. The story includes a couple of eye-opening observations, including that the anti-abortion movement is surprised that all those bans didn’t actually reduce the number of abortions by very much. As we know, women who are looking for abortions normally will find a way to get them, either in state or out of state or underground or whatever. And we also learned in this story that some in the movement are willing to allow rape and incest exceptions in abortion bills, which they have traditionally opposed, because they want to use those as sweeteners for bills that would make it easier to enforce bans, stronger bans, things like the idea in Texas of allowing individual citizens to use civil lawsuits and forbidding local prosecutors from declining to prosecute abortion cases. We’re seeing that in some sort of blue cities in red states. It’s a really interesting read and I really recommend it. OK. That is our show for this week. As always, if you enjoyed the podcast, you can subscribe where ever 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 producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @jrovner, and I’m on Bluesky and Threads. Joanne.

Kenen: @joannekenen1 at Threads.

Rovner: Sarah.

Karlin-Smith: I’m @SarahKarlin or @sarah.karlinsmith, depending on which of these many social media platforms you’re looking at, though.

Rovner: Anna.

Edney: @annaedney on Twitter and @anna_edneyreports on Threads.

Rovner: You can always find us here next week where we will always be in your podcast feed. 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.

2023 will likely be remembered as the summer Arizona sizzled, Vermont got swamped, and nearly the entire Eastern Seaboard, along with huge swaths of the Midwest, choked on wildfire smoke from Canada. Still, none of that has been enough to prompt policymakers in Washington to act on climate issues.

Meanwhile, at a public court hearing, a group of women in Texas took the stand to share wrenching stories about their inability to get care for pregnancy complications, even though they should have been exempt from restrictions under the state’s strict abortion ban.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Shefali Luthra of The 19th, and Alice Miranda Ollstein of Politico.

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Rachel Cohrs
Stat News

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Shefali Luthra
The 19th

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Alice Miranda Ollstein
Politico

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Read Alice's stories

Among the takeaways from this week’s episode:

• Tensions over abortion access between the medical and legal communities are coming to the fore in the courts, as doctors beg for clarification about bans on the procedure — and conservative state officials argue that the law is clear enough. The risk of being hauled into court and forced to defend even medically justified care could be enough to discourage a doctor from providing abortion care.
• Conservative states are targeting a Biden administration effort to update federal privacy protections, which would make it more difficult for law enforcement to obtain information about individuals who travel outside a state where abortion is restricted for the procedure. Patient privacy is also under scrutiny in Nebraska, where a case involving a terminated pregnancy is further illuminating how willing tech companies like Meta are to share user data with authorities.
• And religious freedom laws are being cited in arguments challenging abortion bans, with plaintiffs alleging the restrictions infringe on their religious rights. The argument appears to have legs, as early challenges are being permitted to move forward in the courts.
• On Capitol Hill, key Senate Democrats are holding up the confirmation process of President Joe Biden’s nominee as director of the National Institutes of Health to press for stronger drug pricing reforms and an end to the revolving-door practice of government officials going to work for private industry.
• And shortages of key cancer drugs are intensifying concerns about drug supplies and drawing attention in Congress. But Republicans are skeptical about increasing the FDA’s authority — and supply-chain issues just aren’t that politically compelling.

Also this week, Rovner interviews Meena Seshamani, director of the Center for Medicare at the Centers for Medicare & Medicaid Services at the Department of Health and Human Services.

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

Julie Rovner: Los Angeles Times’ “Opinion: Crushing Medical Debt Is Turning Americans Against Their Doctors,” by KFF Health News’ Noam N. Levey.

Rachel Cohrs: The New York Times’ “They Lost Their Legs. Doctors and Health Care Giants Profited,” by Katie Thomas, Jessica Silver-Greenberg, and Robert Gebeloff.

Alice Miranda Ollstein: The Atlantic’s “What Happened When Oregon Decriminalized Hard Drugs,” by Jim Hinch.

Shefali Luthra: KFF Health News’ “Medical Exiles: Families Flee States Amid Crackdown on Transgender Care,” by Bram Sable-Smith, Daniel Chang, Jazmin Orozco Rodriguez, and Sandy West.

Also mentioned in this week’s episode:

• Stat’s “From Rapid Cooling Body Bags to ‘Prescriptions’ for AC, Doctors Prepare for a Future of Extreme Heat,” by Karen Pennar.
• Politico’s “The Sleeper Legal Strategy That Could Topple Abortion Bans,” by Alice Miranda Ollstein.

click to open the transcript

Transcript: Let’s Talk About the Weather

KFF Health News’ ‘What the Health?’Episode Title: Let’s Talk About the WeatherEpisode Number: 306Published: July 20, 2023

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

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, July 20, 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: Hello.

Rovner: Rachel Cohrs, of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: And Shefali Luthra of The 19th.

Shefali Luthra: Hello.

Rovner: Later in this episode we’ll have my interview with Meena Seshamani, director of the Center for Medicare at the Center for Medicare & Medicaid Services at the Department of Health and Human Services. She has an update on drug price negotiations, Medicare Advantage payments, and more. But first, this week’s news. So let’s talk about the weather. Seriously, this summer of intense heat domes in the South and Southwest, flash floods in the East, and toxic air from Canadian wildfires almost everywhere below the border has advertised the dangers of climate change in a way scientists and journalists and policymakers could only dream about. The big question, though, is whether it will make any difference to the people who can actually do something about it. I hasten to point out here that in D.C., it’s normal — hot and humid for July, but nothing particularly out of the ordinary, especially compared to a lot of the rest of the country. Is anybody seeing anybody on the Hill who seems at the least alarmed by what’s going on?

Ollstein: Not other than those who normally speak out about these issues. You’re not seeing minds changed by this, even as the reports coming out, especially of the Southwest, are just devastating — I mean, especially for unhoused people, just dying. I was really interested in the story from Stat about doctors moving to start prescribing things to combat heat, like prescribing air conditioners, prescribing cooling packs and other things, really looking at heat as a medical issue and not just a feature of our lives that we have to deal with.

Rovner: Well, emergency rooms are full of patients. You can now burn yourself walking on the sidewalk in Arizona. You know, last summer was not a great summer for a lot of people, particularly in California and in western Canada. But this year, it’s like everywhere across the country, everybody’s having something that’s sort of, oh, a hundred-year something or a thousand-year something. And yet we just sort of continue on blithely.

Ollstein: And just quickly, what really hits me is how much of a vicious cycle it can create, because the more people use air conditioners, those give off heat and make the bigger situation worse. So making it better for yourself makes it worse for others. Same with driving. You know, the worse the weather is, the more people have to drive rather than bike or walk or take public transit. And so it gets into this vicious cycle that can make it worse for everyone and create these so-called heat islands in these cities.

Rovner: All right. Well, let us move on to a more familiar topic: abortion and reproductive health. In case you’re wondering why it’s hard to keep track of where abortion is legal, where it’s banned, and where it’s restricted, let’s talk about Iowa. When we last checked in, last week, state lawmakers had just passed a near-total ban after the state Supreme Court deadlocked over a previous ban and the Republican governor, Kim Reynolds, was poised to sign it. Then what happened?

Luthra: The governor signed the ban right as the hearing for the ban concluded in which Planned Parenthood and another abortion clinic in the state sued, arguing, right, that this is the exact same as the law that was just struck down and therefore should be struck down again. And this judge said that he wouldn’t rush to his ruling. He wanted to, you know, give it the time that it deserved so he wouldn’t be saying anything on Friday, which meant as soon as the law was signed, it took effect. It was in effect for maybe a little over 72 hours, essentially through the weekend. And then on Monday, the judge came and issued a ruling blocking the law. And even that is temporary, right? It only lasts as long as this case is proceeding. And one of the reasons Republicans came back and passed this ban is they are hopeful that something has changed and that this time around the state Supreme Court will let the six-week ban in Iowa stand, which really just would have quite significant implications for the Midwest, where it’s been kind of slower to restrict abortion than the South has been because of the role the courts have played in Ohio, in Iowa, blocking abortion bans, and we could very soon see restrictions in Iowa, in Indiana, potentially in Ohio, depending on how the election later this year goes. And it will look like a very different picture than it did even six months ago.

Rovner: And for the moment, abortion is legal in Iowa, right?

Luthra: Correct.

Rovner: Up to 20 weeks?

Luthra: Up to 20, 22, depending on how you count.

Rovner: But as you say, that could change any day. And it has changed from day to day as we’ve gone on. Well, if that’s not confusing enough, there are a couple of lawsuits that went to court in Texas and Missouri, and neither of them is actually challenging an abortion ban. In Texas, women who were pregnant and unable to get timely care for complications are suing to clarify the state’s abortion ban so patients don’t have to literally wait until they are dying to be treated. And in Missouri, there’s a fight between two state officials over how to describe what a proposed state ballot measure would do, honestly. So what’s the status of those two suits? Let’s start with Texas. That was quite a hearing yesterday.

Luthra: It is really devastating to watch. And the hearing continues today, Thursday. And we are hearing from these women who wanted to have their pregnancies, developed complications where they knew that the fetus would not be viable, could not get care in the state. One of them who came to the State of the Union earlier this year, she had to wait until she was septic before she could get care. Another woman traveled out of state. Another one had to give birth to a baby that died four hours after being born, and she knew that this baby wouldn’t live. And it’s really striking to watch just how obviously difficult it is for these women to relive this thing that happened to them, clearly one of the worst things in their lives, maybe the worst thing. And the state’s arguments are very interesting, too, because they appear to be trying to suggest that it is actually not that the law is unclear, but that doctors are just not doing their jobs and they should do, you know, the hard work of medicine by understanding what exceptions mean and interpreting laws that are always supposed to be a little ambiguous.

Ollstein: So when states were debating abortion bans and really Republicans were tying themselves in knots over this question of exemptions — How should the exemptions be worded? Should there be any exemptions at all? Who should they apply to? — a lot of folks on the left were yelling at the time that that’s the wrong conversation, that exemptions are unworkable; even if you say on paper that people can get an abortion in a medical emergency, it won’t work in practice. And this is really fodder for that argument. This is that argument playing out in real life, where there is a medical exemption on the books, and yet all of these women were not able to get the care they needed, and some have suffered permanent or somewhat permanent repercussions to their health and fertility going forward. As more states debate their own laws, and some states with bans have even tried to go back and clarify the exemptions and change them, I wonder how much this will impact those debates.

Rovner: Yeah, I mean, if you just say that doctors are being, you know, cowards basically by not providing this care, think of it from the doctor’s point of view, and now we see why hospital lawyers are getting involved. Even if there’s a legitimate medical reason, they could get dragged into court and have to pay tens or hundreds of thousands of dollars in legal fees just to prove that their medical judgment was correct. You can kind of see why doctors are a little bit reluctant to do that.

Ollstein: And just to stress, these laws were not written by doctors. These laws were written by politicians, and they include language that medical groups have pointed out doesn’t translate to the actual practice of medicine. Some of these bans’ exceptions’ language use terms like irreversible, and they’re like, “That’s not something we say in medicine. That doesn’t fit with our training. We don’t think in terms of that.” Also, terms like life-threatening: It’s like, OK, well, is it imminently life-threatening? And even then, what does that mean? How close does someone need to be to losing their life in order to act?

Rovner: And pregnancy itself is life-threatening.

Ollstein: Right. Or something could be life-threatening in a longer-term way, you know, down the road. Other conditions like diabetes or cancer could be life-threatening even if it won’t kill you today or tomorrow. So this is a real battle where medicine meets law.

Rovner: Well, in Missouri, it’s obviously not nearly as dramatic, but it’s also — you can see how this is playing out in a lot of these states. This is basically a fight between the state attorney general and the state auditor over how much an abortion ban might end up costing the state. They’re really sort of fighting this as hard as they can. It’s basically to make it either more or less attractive to voters, right?

Ollstein: It’s similar to some of the gambits we saw in Michigan to keep the measure off the ballot or put it on the ballot in a way that some would say would be misleading to voters. So I think you’re seeing this more and more in these states after so many states, including pretty conservative states, voted in favor of abortion rights last year. You know, the right is afraid of that continuing to happen, and so they’re looking at all of these technical ways — through the courts, through the legislatures, whatever means they can — to influence the process. And Democrats cry that this is antidemocratic, not giving people a say. Republicans claim that they’re preventing big-money outside groups from influencing the process. And I think this is going to be a huge battle. Missouri and Ohio are up next in terms of voting. And after that, you have Florida and Nevada and a bunch of other states in the queue. And so this is going to continue to be something we’re discussing for a while.

Luthra: And to flag the case in Ohio, what’s happening there, right, is the state is having voters vote onto whether to make it harder to pass constitutional amendments. There’s an election in August that would raise the threshold to two-thirds. And what we know from all of the evidence why they don’t typically have August referenda in Ohio is because the turnout is very, very low, and they are expecting that to be very low. And they’ve made it explicit that the reason they want to make it harder to pass constitutional amendments is, in fact, the concern around Ohio’s proposed abortion protection.

Rovner: Of course, that’s what they said about Kansas last year, that people wouldn’t vote because it was in the summer, so — but this is a little bit more obtuse. This is whether or not you’re going to change the standard for passing constitutional change that would enshrine abortion. So, yeah, clearly —

Luthra: It’s hard to get people excited about votes on voting.

Rovner: Yeah, exactly. An underlying theme for most of this year has been efforts by states that restrict or ban abortion to try to prevent or at least keep tabs on patients who leave the state to obtain a procedure where it is legal. Attorneys general in a dozen and a half states are now protesting a Biden administration effort to protect such information under HIPAA, the medical records privacy provisions of the Health Insurance Portability and Accountability Act. Alice, you’ve written about this. What would the HIPAA update do, and why do the red states oppose it?

Ollstein: The HIPAA update, which was proposed in April, and comment closed in June, and so we’re basically waiting for a final rule — at some point, you know, it can take a while — but it would make it harder for either law enforcement or state officials to obtain medical information about someone seeking an abortion, either out of state or in state under one of these exemptions. This would sort of beef up those protections and require a subpoena or some form of court order in order to get that data. And you have sort of an interesting pattern playing out, which you’ve seen just throughout the Biden administration, where the Biden administration hems and haws and takes an action related to abortion rights and the left says it’s not good enough and the right says it’s wild overreach and unconstitutional and they’re going to sue. And so that’s what I was documenting in my story.

Rovner: Is it 18 red states saying —

Ollstein: Nineteen, yes, yeah.

Rovner: Nineteen red states saying that this is going too far.

Ollstein: They say they want to be able to obtain that data to see if people are breaking the law.

Rovner: Well, Shefali, you wrote this week about sort of a related topic, whether states can use text or social media messages as evidence of criminal activity. That sounds kind of chilling.

Luthra: Yeah, and this is, I think, a really interesting question. We saw it in this case in Nebraska, where a sentencing for one of the defendants is happening today in fact. And I want to be careful in how I talk about this because it concerns a pregnancy that was terminated in April of 2022, before Roe was even overturned. But it sort of offered this test case, this preview for: If you do have law enforcement going after people who have broken a state’s abortion laws, how might they go about doing that? What statutes do they use to prosecute? And what information do they have access to? And the answer is potentially quite a lot. Organizations like Meta and Google are quite cooperative when it comes to government requests for user data. They are quite willing to give over history of message exchanges, history of your searches, or of, you know, where you were tracked on Google Maps. And the bigger question there is how likely are we to see individual prosecutors, individual states, going after patients and their families, their friends for breaking abortion laws? Right now, there’s been some hesitation to do that because the politics are so terrible. But if they do go in that direction, people’s internet user data is, in most states, unprotected. There is no federal law protecting, you know, your Facebook messages. And it could be quite a useful piece of information for people trying to build a case, which should raise concern for anyone trying to access care.

Rovner: Yeah, this is exactly why women were taking their period-tracking apps off of their phones, to worry about the protection of quite personal information. Well, finally this week on the abortion front, we have talked so, so much about how conservative Christians complain that various abortion and even birth control laws violate their religious beliefs. Well, now representatives of several other religions, including Judaism and even some of the more liberal branches of Christianity, say that abortion bans violate their right to practice their religion. This is going on in a bunch of different states. I think the first one we talked about was Florida, I think a year ago. Are any of these lawsuits going anywhere? Do we expect this to end up before the Supreme Court at some point?

Ollstein: So most of them are in state court, not federal. I mean, it’s always possible it could go to the Supreme Court. A couple of them are in federal court and a couple of them have already reached the appeals court level. But the experts I talked to for my story on this said this is mainly going to have an impact in state courts and how they interpret state constitutions. A lot of states have stronger language around religious protections than the federal Constitution, including some laws that pretty conservative state leaders passed in the last few years, and I doubt they expected that same language would be cited to defend abortion rights. But here we are. And yeah, a Missouri court recently ruled that the lawsuit can go forward, the religious challenge to the state’s abortion ban. It’s a coalition of a bunch of different faith leaders bringing that challenge. And in Indiana, they won a preliminary ruling on that case. And there are others pending in Kentucky, Florida, a bunch of other states. And so, yeah, I think this definitely has legs.

Rovner: Yeah, we’re all learning an awful lot about court procedure in lots of different states. Let us move to Capitol Hill, where Congress is in its annual July race to the August recess. Seriously, this is actually a month in which Congress typically does get a lot done. Maybe not so much this year. One perhaps unexpected holdup in the U.S. Senate is where the confirmation of Monica Bertagnolli, President Biden’s nominee to head the National Institutes of Health, is being held up not by a Republican but by two Democrats: health committee chair Bernie Sanders, another member of the committee, Elizabeth Warren. Rachel, what is going on with this?

Cohrs: Sen. Bernie Sanders has long wanted the Biden administration to be more aggressive on drug pricing. And there is one issue in particular that Sen. Sanders has wanted the NIH specifically to use to challenge drug companies’ patents or at least put some pricing protections in there for drugs that are developed using publicly funded research. And the laws that the NIH potentially could use to challenge these companies for high-priced medications have never been used in this way. And Sen. Sanders is using his bully pulpit and the main leverage he has, which is over nominations, to get the White House’s attention. And I think the White House’s position here is that they have done more than any administration in the past 20 years to lower drug prices.

Rovner: Which is true.

Cohrs: It is true. And — but Sen. Sanders still is not satisfied with that and wants to see commitments from the White House and from NIH to do more.

Rovner: And Sen. Elizabeth Warren.

Cohrs: Sen. Elizabeth Warren, yes, who my colleague Sarah Owermohle first reported had some concerns over the revolving door at NIH and wanted a commitment that the nominee wouldn’t go to lobby or work for a large pharmaceutical company for four years after leaving the position, and I don’t know that she’s agreed to that yet. So I don’t see where this resolves. It’s tough, because we’re looking so close to an election, and I think there are big questions about what breaks this logjam. But it certainly has slowed down what looked like a very smooth and noncontroversial nomination process.

Rovner: Yeah, I mean, obviously, you know, we’ve seen many, many times over the years nominations held up for other reasons — I mean, basically using them as leverage to get some policy aim. It’s more rare that you see it on the president’s own party but obviously, you know, not completely unprecedented. Certainly in this case we have a lot of things to be worked out there. Well, Sen. Sanders also seems to be threatening the reauthorization of one of his very pet programs, the bipartisanly popular community health centers. His staff this week put out a draft bill and announced a markup before sharing it with Republicans on the committee. Now Ranking Member Bill Cassidy, who also supports the community health centers program — almost everybody in Congress supports the community health centers program — Cassidy complains there’s no budget score, that the bill includes programs from outside the committee’s jurisdiction, and other details that can be very important. Is Sanders trying to make things partisan on purpose, or is this just sloppy staff work?

Cohrs: Honestly, I can’t answer that question for you, but I don’t think that it’s going to result in a productive outcome for the community health centers. And I think we have in recent years seen significant cooperation between the chair and ranking member, but with Lamar Alexander, with Richard Burr, with Patty Murray, you know, we have seen a lot civility on this committee in the recent past, and that appears to have ended. And I think Sen. Cassidy’s response that he hadn’t seen the legislation publicly was, I think, telling. We don’t usually see that kind of public fighting from a committee chair.

Rovner: He put out a press release.

Cohrs: Right, put out a press release. Yeah. This is not what we usually see in these committees. And it is true that Sen. Sanders’ bill is so much more money than I think is usually given to community health centers in this reauthorization process. I think it’s true that the bill that he dropped touches issues that would anger almost every other stakeholder in the health care system. And I don’t think Sen. Cassidy quite envisioned that. And he introduced his own bill that would have introduced —

Rovner: Cassidy introduced his own bill.

Cohrs: Yes, Sen. Cassidy introduced his own bill last week that would have continued on with what the House Energy and Commerce Committee had passed unanimously earlier this summer to give community health centers a more modest boost in funding for two years.

Rovner: And obviously, there’s some urgency to this because the authorization runs out at the end of September and now we’re in July and they’re going to go away for August. So this is obviously something else that we’re going to need to keep a fairly close eye on. Well, meanwhile, elsewhere, as in at the Senate Finance Committee, which oversees Medicare and Medicaid, we’re starting to see legislation to regulate PBMs — pharmacy benefit managers — or are we? Rachel, we’ve come at this several times this year. How close are we getting?

Cohrs: We’re getting closer. And I think that two key committees are really feeling the heat to get their proposals out there before the end of the year. The first, like you mentioned, was the Senate Finance Committee, which is planning a markup next week, right before senators leave for August recess. They’ve asked for feedback from CBO [the Congressional Budget Office] around the end of August recess so that they’ll be ready to go. But I think it’s no secret that their delay in marking anything up or introducing anything has slowed down this process. And in the House, I know the Ways and Means Committee is trying to put together their own proposal and find time for a markup, whereas the House Energy and Commerce Committee, which also has jurisdiction over many of these issues, is frustrated, because they got their bill introduced, they had all the full regular order of subcommittee and then full committee hearings and then markups, got this bill unanimously out of their committee, and now everyone’s kind of waiting around on these two committees with jurisdiction over the Medicare program to see what they’re going to put together before any larger package can be compiled.

Rovner: Well, you know things are heating up when you start seeing PBM ads all over cable news. So even if you don’t understand what the issue is, you know that it’s definitely in play on Capitol Hill. Well, while we’re on the subject of drug prices, we have another lawsuit trying to block Medicare’s drug price negotiation, this one filed by Johnson & Johnson. Why so many? Wouldn’t these drug companies have more clout if they got together on one big suit, or is there some strategy here to spread it out and hope somebody finds a sympathetic judge?

Ollstein: Yes, I think the latter is exactly what they’re doing, because if they were to all kind of band together, then it would be putting all their eggs in one basket. And this way we see most of the companies have filed in different jurisdictions. I think Johnson & Johnson did file in the same court as Bristol Myers Squibb did, so I think it’s not a perfect trend. But generally what we are seeing is that the trade groups like the [U.S.] Chamber of Commerce and PhRMA [the Pharmaceutical Research and Manufacturers of America] kind of have their own arguments that they’re making in different venues. The drug manufacturers themselves have their own arguments that they’re making in their own venues, and they’re spreading out across the country in some typically more liberal courts and circuits and some more conservative. But I think that it’s important to note that the Chamber of Commerce so far is the only one that’s asked for a preliminary injunction, in Ohio. That is kind of the motion that, if it’s approved, could potentially put a stop to this program even beginning to go into effect. So they’ve asked for that by Oct. 1.

Rovner: And remember, I guess we’re supposed to see the first 10 drugs from negotiation in September, right?

Cohrs: By Sept. 1, yes.

Rovner: By Sept. 1.

Cohrs: Pretty imminently here.

Rovner: Also happening soon. Well, before we stop with the news this week, I do want to talk briefly about drug shortages. This has come up from time to time, both before and during the pandemic, obviously, when we had supply chain issues. But it seems like something new is happening. Some of these shortages seem to be coming because generic makers of some drugs just don’t find them lucrative enough to continue to make them. Now we’re looking at some major shortages of key cancer drugs, literally causing doctors to have to choose who lives and who dies. Are there any proposals on Capitol Hill for addressing this? It’s kind of flying below the radar, but it’s a pretty big deal.

Cohrs: I think we’ve seen Congressman Frank Pallone make this his pet issue in the reauthorization of PAHPA [Pandemic and All-Hazards Preparedness Act], which is the pandemic preparedness bill, which also expires on Sept. 30. So, you know, they have a full plate.

Rovner: Which we will talk about next week because they’re marking it up today.

Cohrs: Exactly. Yes. So but what we have seen is that Democrats in the House Energy and Commerce Committee have made this a top priority to at least have something on drug shortages in PAHPA. And I think my colleague John Wilkerson watched a hearing this week and noted that the chair of the committee, Cathy McMorris Rodgers, seemed more open to adding something than she had been in the past. But again, I think it’s kind of uncertain what we’ll see. And Sen. Bernie Sanders did add a couple of drug shortage policies to his version of PAHPA in the HELP Committee [Senate Committee on Health, Education, Labor and Pensions]. So I think we are seeing some movement on at least some policies to address it. But the problem is that the supply chain is not sexy and Republicans are not crazy about the idea of giving the FDA more authority. I think there is just so much skepticism of these public health agencies. It’s a hard systemic issue to crack. So I think we may see something, but it’s unclear whether any of this would provide any immediate relief.

Rovner: Everybody agrees that there’s a problem and nobody agrees on how to solve it. Welcome to Capitol Hill. OK, that is this week’s news. Now we will play my interview with Medicare chief Meena Seshamani, and then we’ll come back and do our extra credit. I am pleased to welcome to the podcast Meena Seshamani, deputy administrator and director of the Center for Medicare at the Centers for Medicare & Medicaid Services at the Department of Health and Human Services. That must be a very long business card.

Meena Seshamani: [laughs]

Rovner: Translated, that means she’s basically in charge of the Medicare program for the federal government. She comes to this job with more than the requisite experience. She is a physician, a head and neck surgeon in fact, a PhD health economist, a former hospital executive, and a former top administrator there at HHS. Meena, welcome to “What the Health?” We are so happy to have you.

Seshamani: Thank you so much for having me, Julie.

Rovner: So, our podcast listeners will know, because we talk about it so much, that the biggest Medicare story of 2023 is the launch of a program to negotiate prescription drug prices and hopefully bring down the price of some of those drugs. Can you give us a quick update on how that’s going and when patients can expect to start to see results?

Seshamani: Absolutely. The new prescription drug law, the Inflation Reduction Act, really has made historic changes to the Medicare program. And to your point, people are seeing those results right now. There is now a $35 cap on what someone will pay out-of-pocket for a month’s supply of covered insulin at the pharmacy, which is huge. I’ve met with people all over the country. Sometimes people are spending up to $400 for a month’s supply of this lifesaving medication. Also, vaccines at no cost out-of-pocket. And a lot of this leads to what you’re mentioning with the drug negotiation program, a historic opportunity for Medicare to negotiate drugs. In January, we put out a timeline of the various pieces that we’re putting in place to stand up this negotiation program. Along that timeline, we have released guidance that describes the process that we will undergo to negotiate, what we’ll think about as we’re engaging in negotiation. And the first 10 drugs for negotiation that are selected will be announced on Sept. 1. And that will then lead into the negotiation process.

Rovner: And as we’ve mentioned — I think it was on last week’s podcast — there’s a lot of lawsuits that are trying to stop this. Are you confident that you’re going to be able to overcome this and keep this train on the tracks?

Seshamani: Well, we don’t generally comment on the lawsuits. I will say that we are implementing this law in the most thoughtful manner possible. From the day that the law was enacted, we have been meeting with drug manufacturers, health plans, patient groups, health care providers, you know, experts in the field, to really understand the complexity of the drug space and what we can do with this opportunity to really improve things, improve access and affordability to have innovative therapies for the cures that people need.

Rovner: Well, while we are on that subject, we — not just Medicare, but society at large — is facing down a gigantic conundrum. The good news is that we’re finally starting to see drugs that can treat or possibly cure such devastating ailments as Alzheimer’s disease and obesity. But those drugs are currently so expensive, and the population that could benefit from them is so large, they could basically bankrupt the entire health care system. How is Medicare approaching that? Obviously, in the Alzheimer’s space, that could be a very big deal.

Seshamani: Well, Julie, we are committed to helping ensure that people have timely access to innovative treatments that can lead to improved care and better outcomes. And in doing this, we take into account what the Medicare law enables coverage for and what the evidence shows. So with Alzheimer’s, CMS underwent a national coverage determination. And consistent with that, Medicare is covering the drug when a physician and clinical team participates in the collection of evidence about how these drugs work in the real world, also known as a registry. And this is very important because it will enable us to gather more information on patient outcomes as we continue to see innovations in this space. And you mentioned obesity. In the Medicare law, there is a carve-out for drugs for weight loss.

Rovner: A carve-out meaning you can’t cover them.

Seshamani: Correct. It says that the Medicare Part D prescription drug program will not cover drugs for weight loss. So we are looking at the increasing evidence. And for example, where there is a drug that is used for diabetes, for example, you know, then it can certainly be covered. And this is an area that we are continuing to partner with our colleagues in the FDA on and that we’d like to partner with the broader community to continue to build the evidence base around benefits for the Medicare population as we continue to evaluate where we want to make sure that people have access.

Rovner: But are you thinking sort of generally about what to do about these drugs that cost sometimes tens of thousands of dollars a year, hundreds of thousands of dollars a year, that half the population could benefit from? I mean, that cannot happen, right, financially?

Seshamani: Well, Julie, this is where the new provisions in the new drug law really come into play. Thinking from access for people for the high-cost drugs, I think we all know what a financial strain the high cost of drugs have created for our nation’s seniors, where now, in 2025, there will be a $2,000 out-of-pocket cap, that people will not have to pay out-of-pocket more than $2,000, which enables them to access drugs. And on the other side, as we talked about with drug negotiation, where for drugs that have been in the market for seven years or 11 years, if they are high-cost drugs, they could potentially be selected for negotiation where we can then, you know, as we laid out in the guidance that we put out, look at what is the benefit that this drug provides to a population? What are the therapeutic alternatives? And then also consider things like what’s the cost of producing that drug and distributing it? How much federal support was given for the research and development of that drug? And how much is the total R & D costs? So I think that there are several tools that we’ve been given in the Inflation Reduction Act that demonstrate how we are continuing to think about how we can ensure that Medicare is delivering for people now and in the future.

Rovner: Well, speaking of things that are popular but also expensive, let’s talk briefly about Medicare Advantage. More and more beneficiaries are opting for private plans over traditional, fee-for-service Medicare. But the health plans have figured out lots of ways to game the system to make large profits basically at taxpayers’ expense. Is there a long-term plan for Medicare Advantage or are we just going to continue to play whack-a-mole, trying to plug the loopholes that the plans keep finding?

Seshamani: You know, as now we have 50% of the population in Medicare Advantage, Medicare Advantage plays a critical role in advancing our vision for the Medicare program around advancing health equity, expanding access to care, driving innovation, and enabling us to be good stewards of the Medicare dollar. And that vision that we have is reflected in all of the policies that we have put forward to date. And I might add that those policies really have been informed by engagement with everyone who’s interested in Medicare Advantage. We did a request for comment and got more than 4,000 suggestions from people. This has now come out in recent policies like cracking down on misleading marketing practices so that people can get the plan that best suits their needs; ensuring clear rules of the road for prior authorization and utilization management so we can make sure that people are accessing the medically necessary care that they need; things like improving network adequacy, particularly in behavioral health, so people can access the health care providers in the networks of the plans; and then the work that we’re doing around payment, to make sure that we’re paying accurately, updating the years that we use for data, looking at the coding patterns of Medicare Advantage. And again, this is all work that is important to make sure that the program is really serving the people in the Medicare program.

Rovner: So, as you know, we’ve done big investigative projects here at KFF Health News about both medical debt and nonprofit hospitals not living up to their responsibilities to the community. As the largest single payer of hospitals, what is Medicare doing to try and address requirements for charity care, for example?

Seshamani: Well, the. IRS oversees the requirements for community benefit, which is how hospitals maintain or get a nonprofit status. We have certainly worked with the Consumer Financial Protection Bureau and the Department of Treasury on, for example, issuing a request for information, seeking public comment on, you know, medical credit cards. But even beyond that, I think this is an example of where we need to bring more payment accuracy and transparency in the health care system. So, for example, we have recently just proposed strengthening hospital price transparency so that people can know what is the cost of services, standard charges that hospitals provide. We also are adding quality measures to hospitals, particularly around issues around health equity, making sure that hospitals are screening patients for social needs. And we’re also tying increasingly our payment programs to making sure that those underserved populations are receiving excellent care, so again, really trying to drive transparency, quality, and access through all of the work that we’re doing with hospitals.

Rovner: But can you leverage Medicare’s power? Obviously, you know, that was what created EMTALA [the Emergency Medical Treatment and Labor Act], was leveraging Medicare’s power. Can you leverage it here to try and push some of these hospitals to do things they seem reluctant to do?

Seshamani: Where we have our levers in the Medicare program, we absolutely are working with hospitals around issues of equity, so as I mentioned, you know, really embedding equity not only in our quality requirements but also in hospital operations — for example, that as part of their operations they need to be looking at health equity. You know, where we are looking at how they are providing care and addressing issues of patient safety. So, we continue to look into all of these angles, and where we can support good practices. For example, we just proposed in our inpatient prospective payment system rule that when hospitals are taking care of homeless patients, that can be considered in their payment, because we have found through our analyses that additional resources are being used to make sure that those patients are supported for all of their needs, and we’re encouraging hospitals to code for these social needs so that we can continue to assess with them where resources and supports are needed to provide the kind of care that we all want for our populations.

Rovner: Last question, and I know that this is big, so it’s almost unfair. One of the reasons we know that it’s getting so expensive to manage medical costs is the increasing involvement of private equity in health care. What’s the Biden administration doing to address this growing profit motive?

Seshamani: Yeah, Julie, I’ll come back to, you know, what I alluded to before around transparency. We are really committed to transparency in health care, and we are continuing to focus on gathering data that sheds light on what is happening in the health care market so that we can be good stewards of the taxpayer dollar. So I mentioned our work in hospital price transparency, where we have streamlined the enforcement process; we have proposed to require standard ways that hospitals are reporting their charges and standard locations where they have to put a footer on the hospital’s homepage so that people can find that data easily. In Medicare Advantage, we are requiring more reporting for the medical loss ratio for plans to report spending on supplemental benefits like dental, vision, etc. And we really want to hone in on where else we can gather more data to be able to enable all of us to see what is happening in this dynamic health care market; what’s working? What isn’t? And so we’re very interested in getting ideas.from everyone of where more data can be helpful to enable us to then enact policies that can make sure that the health care industries and the market are really serving people in the most effective way possible.

Rovner: Well, you’ve got a very big job, so I will let you get back to it. Thank you so much, Meena Seshamani.

Seshamani: Thank you for having me.

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

Luthra: Sure. So mine is from KFF Health News by a dream team, Bram Sable-Smith, Daniel Chang, Jazmin Orozco Rodriguez, and Sandy West. The headline is “Medical Exiles: Families Flee States Amid Crackdown on Transgender Care.” And I mean, it’s exactly what it sounds like. It’s this really person-grounded, quite deeply reported story about how restrictions on gender-affirming health care, especially for young people, are forcing families to leave their homes. And this is a really tough thing for people to do, you know, leave somewhere where you’ve lived for 10 years or longer and go somewhere where you don’t have ties. Moving is quite expensive. And I think this is a really important look at something that we anecdotally know is happening, haven’t seen enough really great deep dives on, and is something that potentially will happen more and more as people are forced to leave their homes if they can afford to do so because they don’t feel safe there anymore.

Rovner: Yeah, and this is the issue of doing these social issues state by state by state, just what’s happening now. Alice.

Ollstein: So I chose a piece from The Atlantic called “What Happened When Oregon Decriminalized Hard Drugs,” by Jim Hinch. It was really fascinating. On the one side, they say this is evidence that the policy has failed, that decriminalizing possession of small amounts of cocaine, heroin, all hard drugs, has been a failure because overdoses have actually gone up since then. But other experts quoted in this article say that, look, we tried the punitive war on drugs model for decades and decades and decades before declaring it a failure; how can we evaluate this after just a few years? It just takes more time to make this transition and takes more time to, you know, ramp up treatment and services for people, and because this happened three years ago, it was disrupted by the pandemic and, you know, services were not able to reach people, etc. So a really fascinating look.

Rovner: Yes, it’s quite the social experiment that’s going on in Oregon. Rachel.

Cohrs: So mine is from The New York Times, a group of reporters and a new series called “Operating Profits.” And the headline is “They Lost Their Legs. Doctors and Health Care Giants Profited.” And I think I’m just really excited to see more about this line of reporting about overutilization in health care and how certain payment incentives — I mean, they made a story about payment incentives in hospital outpatient departments and how pay rates change really personal and interesting, and it’s important. So, I mean, all these really dense rules that we’re seeing drop this summer do really have implications for patients. And there are bad actors out there who are kind of capitalizing on that. So I felt it was like really responsible reporting, mostly focused on one physician who, you know, was doing procedures that he shouldn’t have and other doctors ultimately were left to clean up the damage for these patients. And they had amputations that they maybe shouldn’t have had, which is such a serious and devastating consequence. I thought that was very important reporting, and I’m excited to see what’s next.

Rovner: Yeah, I’m looking forward to seeing the rest of the series. Well, my story this week is in the Los Angeles Times from my KFF Health News colleague Noam Levey, who’s been working on a giant project on medical debt. It’s called “Crushing Medical Debt Is Turning Americans Against Their Doctors.” And it points out something I hadn’t really thought about before, that outrageous and unexpected bills are undermining public confidence in medical providers and the medical system writ large. And so far, nobody’s doing very much about it. To quote from Noam’s piece, “Hospitals and doctors blame the government for underpaying them and blame insurers for selling plans with unaffordable deductibles. Insurers blame providers for obscene prices. Everyone blames drug companies.” Well, it’s going to take a lot of time to dig out of this hole, but probably it would help if everybody stopped digging. OK. That is our show for this week. 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 producer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m still @jrovner, and I’m on Threads @julie.rovner. Shefali.

Luthra: I’m @shefalil.

Rovner: Alice.

Ollstein: @AliceOllstein.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs.

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

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The idea seems simple enough.

Preserve all the rituals of smoking: Light up a cigarette, inhale the smoke, including the nasty stuff that can kill you, and exhale. But remove most of the nicotine, the chemical that makes tobacco so darn hard to quit, to help smokers smoke less.

The Food and Drug Administration has been contemplating that strategy for at least six years as one way to make it easier for smokers to cut back, if not quit entirely. Less than two years ago, it authorized 22nd Century Group, a publicly traded plant biotech company based in Buffalo, New York, to advertise its proprietary low-nicotine cigarettes as modified-risk tobacco products.

Now, the first authorized cigarettes with 95% less nicotine than traditional smokes are coming to California, Florida, and Texas in early July, after a year of test-marketing in Illinois and Colorado. It’s part of an aggressive rollout by 22nd Century that, by year’s end, could bring its products to 18 states — markets that together account for more than half of U.S. cigarette sales.

But anti-smoking groups oppose greenlighting 22nd Century’s products. Instead, they urge federal regulators to expand on their original plan of setting a low-nicotine standard for all combustible cigarettes to make them minimally or nonaddictive. They expect the FDA to take the next step in that industrywide regulatory process as early as this fall.

“Unless and until there is a categorywide requirement that nicotine goes down to low, nonaddictive levels, this is not going to make a difference,” said Erika Sward, a spokesperson for the American Lung Association.

Major tobacco companies Altria, R.J. Reynolds, and ITG Brands did not respond to requests for comment.

Cigarette smoking is estimated to cause more than 480,000 deaths a year in the U.S., including from secondhand smoke, and contributes to tobacco use being the leading preventable cause of death nationally. In 2018, then-FDA Commissioner Scott Gottlieb wrote that setting a maximum nicotine level “could result in more than 8 million fewer tobacco-caused deaths through the end of the century – an undeniable public health benefit.”

The FDA reasoned that people would collectively smoke fewer cigarettes and have less exposure to the deadly toxins that are still present in low-nicotine cigarettes.

22nd Century says it used a patent-protected process to control nicotine biosynthesis in the tobacco plant, enabling it to create a pack of cigarettes with about as much nicotine as one Marlboro. It says generally that it uses “modern plant breeding technologies, including genetic engineering, gene-editing, and molecular breeding.”

Keeping 5% of the nicotine is enough to prevent smokers from seeking more to satisfy their craving, said John Miller, president of 22nd Century’s smoking division.

“There’s just enough in there that your brain thinks it’s getting it, but it’s not,” Miller said. “That was really one of the reasons we got to these levels of nicotine, is because you don’t have that additional smoking.”

Miller said the low-nicotine cigarettes can help some smokers cut back or quit, perhaps in conjunction with a nicotine patch or gum, when they’ve tried and failed with other stop-smoking programs.

Campaign for Tobacco-Free Kids President Matthew L. Myers supports the development of an industrywide low-nicotine standard, saying the concept would work only if consumers no longer had the alternative of a higher-nicotine cigarette.

“The concern with a product that’s still addictive, but delivers low levels of nicotine, in fact is that consumers will smoke more, because the evidence shows that somebody who’s addicted will smoke enough to satisfy their craving,” Myers said.

Both the FDA and anti-smoking groups cited studies that found lower levels of nicotine don’t prompt smokers to smoke more to reach the same nicotine levels. But those studies assumed smokers wouldn’t have a high-nicotine alternative, anti-smoking groups and researchers said.

Allowing low-nicotine cigarettes while conventional cigarettes remain available may be a public health detriment if they discourage smokers from quitting entirely or encourage others to start smoking because they think there’s a safe way to experiment with cigarettes, the Campaign for Tobacco-Free Kids and several health associations wrote in a letter urging the FDA to reverse its 22nd Century decision.

22nd Century’s cigarettes are still dangerous, and consumers must substantially cut back or quit smoking to get health advantages. But anti-smoking groups fear many smokers won’t understand that.

“If people are looking at this as a magic bullet and are still continuing their tobacco use, they are not doing anything to change their risk,” said Sward, of the lung association.

Anti-smoking groups particularly object to allowing 22nd Century to market menthol cigarettes even as the FDA is considering outlawing such cigarettes nationwide.

FDA spokesperson Abby Capobianco confirmed that 22nd Century has the only FDA-authorized low-nicotine cigarette but did not respond to requests for comment on the FDA’s plans for regulating nicotine in cigarettes.

California already outlaws menthol flavoring, and Miller said the company won’t challenge that state’s ban and won’t sell its menthol cigarettes in California.

But Miller hopes the company will eventually win an exemption from any federal ban, in part, he said, because more than half of menthol smokers are likely to switch to conventional cigarettes.

“That’s not what the FDA wants to happen,” Miller said. “They need an offramp for these menthol smokers and ours is obviously the natural.”

The company is expanding into California, Florida, and Texas because of the nation-leading size of their smoking populations. It previously announced plans to also begin selling its very low-nicotine, or VLN, cigarettes this year in Arizona, New Mexico, and Utah, and it may move into 10 more states.

The company is prioritizing seven states that offer tax incentives for products the FDA has said reduce tobacco risk, believing its cigarettes will have a price advantage over others in Colorado, Connecticut, Kentucky, Michigan, North Carolina, New Mexico, and Utah. Miller said the company may lobby California lawmakers to add similar incentives as part of the state’s extensive efforts to discourage smoking, which still addicts 10% of its residents.

Miller declined to disclose the company’s market share from the two test states but said sales were above expectations.

“If we can get this to the level of, like, a nonalcoholic beer — you know, 3% to 5% of the category — it’s a game changer,” Miller said. “We know that there’s a latent demand in the market for this product.”

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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Son parte de una nueva migración de estadounidenses que se están desarraigando debido a una oleada de leyes que restringen la prestación de servicios de salud para personas transgénero.

Missouri, Florida y Texas se encuentran entre al menos 20 estados que han limitado la atención de afirmación de género para jóvenes trans. Los tres estados también están entre aquellos que impiden que Medicaid, el seguro de salud público para personas de bajos ingresos, cubra aspectos clave de estos servicios para pacientes de todas las edades.

Más de una cuarta parte de los adultos trans encuestados por KFF y The Washington Post a fines del año pasado dijeron que se mudaron a otro vecindario, ciudad o estado en busca de un ambiente más tolerante. Ahora se sienten impulsados por las nuevas restricciones en la atención de la salud y la posibilidad de que estas se sigan multiplicando.

Muchos de ellos optan por estados que están aprobando leyes para proteger y apoyar estos servicios, lugares que se han convertido en santuarios. En California, por ejemplo, se aprobó una ley el otoño pasado que protege de demandas a las personas que reciben o brindan servicios de afirmación de género. Y ahora, los proveedores en California están recibiendo cada vez más llamadas de personas que quieren mudarse al estado para evitar interrupciones en sus servicios, dijo Scott Nass, médico local de familia y experto en atención de personas transgénero.

Pero esta afluencia de pacientes presenta un desafío, dijo Nass, “ya que el sistema actual no puede recibir a todos los refugiados que pudiera haber”.

En Florida, la persecución legislativa de las personas trans y su atención médica convenció a Arlo Dennis, de 35 años, de que es hora de irse. Hace más de una década que vive con los cinco miembros de su familia en Orlando. Ahora, tienen planes de mudarse a Maryland.

Dennis ya no tiene acceso a su terapia de reemplazo hormonal. Esto se debe a que desde fines de agosto, el seguro de Medicaid de Florida ya no cubre la atención médica relacionada con la transición. El estado considera que estos tratamientos son experimentales y que su eficacia no está suficientemente probada. Dennis dijo que su medicación se acabó en enero.

“Sin duda esto me ha causado problemas de salud mental y física”, explicó Dennis.

Agregó que mudarse a Maryland requiere recursos que su familia no tiene. Lanzaron una campaña de GoFundMe en abril y ya recaudaron más de $5,600, la mayoría donada por desconocidos, contó Dennis. Ahora la familia de tres adultos y dos niños piensa irse de Florida en julio. La decisión no fue fácil, pero sintieron que no había otra opción.

“No me importa si a mi vecino no le gusta mi forma de vivir”, dijo Dennis. “Pero esto era una prohibición literal de mi ser y me impedía el acceso a la atención médica”.

Mitch y Tiffany Tillison decidieron irse de Texas después de que los republicanos del estado enfocaron su agenda legislativa en las políticas anti-trans para los jóvenes. Su hija de 12 años se declaró trans hace unos dos años. Los padres pidieron que se publicara solo su segundo nombre, Rebecca: temen por su seguridad debido a las amenazas de violencia contra las personas trans.

Este año, la Legislatura de Texas aprobó una ley que limita la atención médica de afirmación de género para jóvenes menores de 18 años. La ley prohíbe específicamento aquellos servicios de salud física. Sin embargo, defensores de los derechos LGBTQ+ en el estado dicen que las medidas recientes también han tenido un escalofriante efecto sobre la prestación de servicios de salud mental para personas trans.

Los Tillison se negaron a precisar si su hija está recibiendo tratamiento y cuál. Pero afirmaron que reservan el derecho, como padres, de poder brindarle a su hija la atención que necesita, y que el estado de Texas les ha quitado ese derecho.

A esto se suman las amenazas cada vez más serias de violencia en su comunidad, sobre todo después del tiroteo masivo del 6 de mayo por parte de un supuesto neonazi. La masacre, que ocurrió en el centro comercial Allen Premium Outlets, en los suburbios de Dallas, a 20 millas de su casa, hizo que la familia decidiera mudarse al estado de Washington. 

“La he mantenido a salvo”, dijo Tiffany Tillison, agregando que suele recordar el momento en que su hija le dijo que era trans durante un largo viaje a casa después de un torneo de fútbol. “Es mi responsabilidad seguir protegiéndola. Mi amor es interminable, incondicional”.

Por su parte, Rebecca tiene una actitud pragmática sobre la mudanza, que está planeada para julio. “Es triste pero tenemos que hacerlo”, dijo.

En Missouri, donde casi se aprueba una medida que limitaba la atención de la salud trans, algunas personas empezaron a repensar si deberían vivir ahí.

En abril, el fiscal general de Missouri, Andrew Bailey, presentó una norma de emergencia para limitar el acceso a la cirugía relacionada con la transición y el tratamiento hormonal cruzado para personas de todas las edades, además de restringir los bloqueadores de la pubertad, medicamentos que detienen la pubertad pero no alteran las características de género.

Al día siguiente, Dempsey, de 24 años, lanzó una campaña de GoFundMe para recaudar fondos para irse con sus parejas de Springfield, Missouri.

“Somos tres personas trans que dependen de la terapia de reemplazo hormonal y de la atención de afirmación de género que pronto será casi prohibida”, escribió Dempsey en su campaña de GoFundMe, agregando que querían “escapar de Missouri cuando se termine nuestro contrato de alquiler a fines de mayo.”

Dempsey dijo que su médico en Springfield les recetó un suministro de tres meses de terapia hormonal para cubrirlos hasta la mudanza.

Bailey retiró la norma en mayo, cuando la legislatura estatal restringió el acceso a estos tratamientos para menores pero no para adultos como Dempsey y sus parejas. Aún así, Dempsey dijo que no tenía muchas esperanzas para su futuro en Missouri.

El estado vecino de Illinois era una opción obvia para mudarse; la legislatura allí aprobó una ley en enero que exige que los seguros médicos regulados por el estado cubran la atención médica de afirmación de género sin ningún costo adicional. Dónde en Illinois exactamente era una pregunta más importante. Chicago y sus suburbios parecían demasiado caros. Sus parejas querían una comunidad progresista similar en tamaño y costo de vida a la ciudad que estaban dejando. Buscaban “un Springfield”, en Illinois.

“Pero no Springfield, Illinois”, bromeó Dempsey.

Gwendolyn Schwarz, de 23 años, también esperaba quedarse en Springfield, Missouri, su ciudad natal, donde recientemente se graduó de Missouri State University con un título en estudios de cine y medios de comunicación. Pensaba seguir su carrera académica en un programa de posgrado de la universidad y, en el siguiente año, someterse a una cirugía de transición, que puede requerir varios meses de recuperación.Pero sus planes cambiaron cuando la norma propuesta por Bailey generó miedo y confusión.“No quiero quedarme atrapada y temporalmente discapacitada en un estado que no reconoce mi humanidad”, dijo Schwarz.

Ella y un grupo de amigos tienen planeado mudarse al oeste, al estado de Nevada, cuyos legisladores aprobaron una medida que requiere que Medicaid cubra el tratamiento de afirmación de género para pacientes trans.

Schwarz espera que mudarse de Missouri a Carson City, la capital de Nevada, le permita seguir viviendo su vida sin miedo y eventualmente someterse a la cirugía que desea.

Dempsey y sus parejas finalmente decidieron mudarse a Moline, Illinois. Los tres tuvieron que renunciar a sus trabajos, pero han recaudado $3,000 en GoFundMe, más que suficiente para cubrir el depósito de un nuevo departamento.

El 31 de mayo, empacaron las pertenencias que no habían vendido e hicieron el viaje de 400 millas hasta su nuevo hogar.

Dempsey ya tuvo una cita con un proveedor médico en una clínica en Moline que atiende a la comunidad LGBTQ+, y consiguió que le recetaran los medicamentos que necesita para su terapia hormonal.

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Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”

They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.

Missouri, Florida, and Texas are among at least 20 states that have limited components of gender-affirming health care for trans youth. Those three states are also among the states that prevent Medicaid — the public health insurance for people with low incomes — from paying for key aspects of such care for patients of all ages.

More than a quarter of trans adults surveyed by KFF and The Washington Post late last year said they had moved to a different neighborhood, city, or state to find more acceptance. Now, new restrictions on health care and the possibility of more in the future provide additional motivation.

Many are heading to places that are passing laws to support care for trans people, making those states appealing sanctuaries. California, for example, passed a law last fall to protect those receiving or providing gender-affirming care from prosecution. And now, California providers are getting more calls from people seeking to relocate there to prevent disruptions to their care, said Scott Nass, a family physician and expert on transgender care based in the state.

But the influx of patients presents a challenge, Nass said, “because the system that exists, it can’t handle all the refugees that potentially are out there.”

In Florida, the legislative targeting of trans people and their health care has persuaded Arlo Dennis, 35, that it is time to uproot their family of five from the Orlando area, where they’ve lived for more than a decade. They plan to move to Maryland.

Dennis, who uses they/them pronouns, no longer has access to hormone replacement therapy after Florida’s Medicaid program stopped covering transition-related care in late August under the claim that the treatments are experimental and lack evidence of being effective. Dennis said they ran out of their medication in January.

“It’s definitely led to my mental health having struggles and my physical health having struggles,” Dennis said.

Moving to Maryland will take resources Dennis said their family does not have. They launched a GoFundMe campaign in April and have raised more than $5,600, most of it from strangers, Dennis said. Now the family, which includes three adults and two children, plans to leave Florida in July. The decision wasn’t easy, Dennis said, but they felt like they had no choice.

“I’m OK if my neighbor doesn’t agree with how I’m living my life,” Dennis said. “But this was literally outlawing my existence and making my access to health care impossible.”

Mitch and Tiffany Tillison decided they needed to leave Texas after the state’s Republicans made anti-trans policies for youth central to their legislative agenda. Their 12-year-old came out as trans about two years ago. They asked for only her middle name, Rebecca, to be published because they fear for her safety due to threats of violence against trans people.

This year, the Texas Legislature passed a law limiting gender-affirming health care for youth under 18. It specifically bans physical care, but local LGBTQ+ advocates say recent crackdowns also have had a chilling effect on the availability of mental health therapy for trans people.

While the Tillisons declined to specify what treatment, if any, their daughter is getting, they said they reserve the right, as her parents, to provide the care their daughter needs — and that Texas has taken away that right. That, plus increasing threats of violence in their community, particularly in the wake of the May 6 mass shooting by a professed neo-Nazi at Allen Premium Outlets, about 20 miles from their home in the Dallas suburbs, caused the family to decide to move to Washington state.

“I’ve kept her safe,” said Tiffany Tillison, adding that she often thinks back to the moment her daughter came out to her during a long, late drive home from a daylong soccer tournament. “It’s my job to continue to keep her safe. My love is unending, unconditional.”

For her part, Rebecca is pragmatic about the move planned for July: “It’s sad, but it is what we have to do,” she said.

A close call on losing key medical care in Missouri also pushed some trans people to rethink living there. In April, Missouri Attorney General Andrew Bailey issued an emergency rule seeking to limit access to transition-related surgery and cross-sex hormones for all ages, and restrict puberty-blocking drugs, which pause puberty but don’t alter gender characteristics. The next day, Dempsey, 24, who uses they/them pronouns, launched a GoFundMe fundraiser for themself and their two partners to leave Springfield, Missouri.

“We are three trans individuals who all depend on the Hormone Replacement Therapy and gender affirming care that is soon to be prohibitively limited,” Dempsey wrote in the fundraising appeal, adding they wanted to “escape Missouri when our lease is up at the end of May.”

Dempsey said they also got a prescription for a three-month supply of hormone therapy from their doctor in Springfield to tide them over until the move.

Bailey withdrew his rule after the state legislature in May restricted new access to such treatments for minors, but not adults like Dempsey and their partners. Still, Dempsey said their futures in Missouri didn’t look promising.

Neighboring Illinois was an obvious place to move; the legislature there passed a law in January that requires state-regulated insurance plans to cover gender-affirming health care at no extra cost. Where exactly was a bigger question. Chicago and its suburbs seemed too expensive. The partners wanted a progressive community similar in size and cost of living to the city they were leaving. They were looking for a Springfield in Illinois.

“But not Springfield, Illinois,” Dempsey quipped.

Gwendolyn Schwarz, 23, had also hoped to stay in Springfield, Missouri, her hometown, where she had recently graduated from Missouri State University with a degree in film and media studies. She had planned to continue her education in a graduate program at the university and, within the next year, get transition-related surgery, which can take a few months of recovery.

But her plans changed as Bailey’s rule stirred fear and confusion.

“I don’t want to be stuck and temporarily disabled in a state that doesn’t see my humanity,” Schwarz said.

She and a group of friends are planning to move west to Nevada, where state lawmakers have approved a measure that requires Medicaid to cover gender-affirming treatment for trans patients.

Schwarz said she hopes moving from Missouri to Nevada’s capital, Carson City, will allow her to continue living her life without fear and eventually get the surgery she wants.

Dempsey and their partners settled on Moline, Illinois, as the place to move. All three had to quit their jobs to relocate, but they have raised $3,000 on GoFundMe, more than enough to put a deposit down on an apartment.

On May 31, the partners packed the belongings they hadn’t sold and made the 400-mile drive to their new home.

Since then, Dempsey has already been able to see a medical provider at a clinic in Moline that caters to the LGBTQ+ community — and has gotten a new prescription for hormone therapy.

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.

USE OUR CONTENT

This story can be republished for free (details).