Casi lo fue. Atencio y sus hijos durmieron durante años en los sofás de amigos o en casa de familiares, sin poder alquilar un apartamento debido a su mal historial de crédito. Una de las principales razones, dijo, fue la deuda médica.

Atencio sufrió un ataque al corazón a los 19 años, desencadenado por una afección congénita no diagnosticada. Las deudas por su atención devastaron su crédito. “Siempre sentí que no podía salir adelante”, dijo, recordando una vida de trabajos sin futuro y préstamos con intereses altos mientras trataba de mantenerse al día con los cobradores de deudas.

A los 25 años, tuvo que declararse en quiebra.

En todo el país, la deuda médica obliga a legiones de estadounidenses a hacer sacrificios dolorosos. Muchos recortan gastos en alimentos, asumen trabajos adicionales o agotan sus ahorros para la jubilación. Para millones como Atencio, el sistema de atención médica amenaza sus propios hogares.

Esto ha resultado ser especialmente devastador en comunidades como Denver, donde los precios de las viviendas se han disparado, volviéndose inaccesibles para muchos residentes, alimentando una crisis que ha dejado a miles de personas sin hogar y durmiendo en las calles.

En Community Economic Defense Project, o CEDP, una organización sin fines de lucro de Denver que ayuda a las personas que enfrentan el desalojo o la ejecución hipotecaria de sus hogares, aproximadamente dos tercios de los clientes tienen deuda médica, según una encuesta informal realizada por KFF Health News y la organización.

Cerca de la mitad de las casi 70 personas encuestadas dijeron que la deuda médica desempeñó un papel en su problema de vivienda, y aproximadamente una de cada 6 dijo que fue un factor importante.

“Todo el día escucho sobre la deuda médica”, dijo Kaylee Mazza, defensora de inquilinos que trabaja en una clínica legal de CEDP en el tribunal de Denver que ofrece ayuda a los inquilinos que enfrentan procesos de desalojo. “Está en todas partes”.

A nivel nacional, alrededor de 100 millones de personas tienen alguna forma de deuda de atención médica. De ellos, aproximadamente una de cada 5 dijo que las deudas los obligaron a cambiar su situación de vida, incluyendo mudarse con amigos o familiares, según una encuesta de KFF de 2022.

Un creciente cuerpo de investigaciones muestra que la vivienda estable es fundamental para el bienestar físico y mental. Algunos sistemas médicos importantes, incluyendo varios en Colorado, incluso han comenzado a invertir en viviendas asequibles en sus comunidades, citando la necesidad de abordar los llamados determinantes sociales de salud.

Pero a medida que los hospitales y otros proveedores médicos dejan a millones en deuda, socavan inadvertidamente la salud de la comunidad, dijo Brian Klausner, médico en una clínica que atiende a pacientes sin hogar en Raleigh, Carolina del Norte.

“Muchos de los hospitales en todo el país que ahora públicamente se comprometen a abordar las inequidades en salud y eliminar las barreras para la salud están contribuyendo simultáneamente a crear estos mismos problemas”, dijo Klausner. “A nadie le gusta el elefante en la habitación, pero la realidad es que hay miles de estadounidenses enfermos que probablemente están sin hogar, y enfermos, debido a la deuda médica”.

Efecto dominó

La deuda médica puede socavar la seguridad de la vivienda de varias maneras. Para algunos, debilita su crédito, lo que dificulta alquilar o solicitar una hipoteca. El año pasado, aproximadamente uno de cada 8 consumidores estadounidenses con un informe de crédito tenía una deuda médica en él, según el Urban Institute, una organización sin fines de lucro.

Los pacientes con condiciones médicas crónicas pueden atrasarse en el pago del alquiler o de las cuotas de su hogar mientras luchan por mantener bajo control las deudas médicas para preservar el acceso a la atención médica. KFF Health News encontró que muchos hospitales y otros proveedores rechazan a pacientes con cuentas pendientes.

Denise Beasley, quien también ayuda a clientes en CEDP en Denver, dijo que muchas personas mayores, que normalmente dependen más de los médicos y los medicamentos, creen que deben pagar sus cuentas médicas y de farmacia antes que cualquier otra cosa. “Están aterrados”, dijo.

Para otros, esta deuda puede aumentar las dificultades financieras provocadas por un accidente o una enfermedad inesperada que los obliga a dejar de trabajar, poniendo en peligro su cobertura de salud o su capacidad para pagar la vivienda.

En Seattle, los investigadores encontraron una deuda médica generalizada entre los residentes de campamentos de personas sin hogar. Y aquellos con este tipo de deudas tendían a experimentar la falta de vivienda durante dos años más que los residentes de campamentos sin deuda.

En términos más generales, las personas con deuda médica tienen más probabilidades de decir que la deuda les ha impedido rentar o avanzar con una hipoteca, en comparación con las personas que tienen préstamos estudiantiles o de tarjetas de crédito, según una encuesta nacional de 2019 realizada por la empresa de bienes raíces Zillow entre inquilinos, compradores de viviendas y dueños de propiedades.

Para Atencio, quien dejó su hogar a los 16 años, sus problemas con la deuda médica comenzaron con el ataque al corazón. Estaba trabajando en una gasolinera y viviendo en Trinidad, una pequeña ciudad en el sur de Colorado cerca de la frontera con Nuevo México.

Fue llevado de urgencia a un hospital local, donde fue sometido a una cirugía. Las facturas, que superaban los $50,000, no estaban cubiertas por su plan de salud porque había acudido a un proveedor fuera de la red sin saberlo, contó. “Luché lo más que pude, pero no podía pagar un abogado. Estaba atrapado”.

Atencio, quien es transgénero, tiene el pelo oscuro corto y un gran tatuaje en su antebrazo derecho en memoria de dos amigos que murieron en un accidente automovilístico. Sentado en un sofá viejo en un apartamento con rejas en las ventanas, es filosófico acerca de su largo periplo desde esa crisis médica a través de años de deuda e inseguridad de vivienda. “Hemos salido adelante”, dijo. “Pero tuvo un costo”.

Cuando su crédito bajó a cerca de 300, la calificación más baja, había pocos lugares a los que recurrir en busca de ayuda. La relación de Atencio con sus padres, quienes se divorciaron cuando él tenía 2 años, había sido tensa durante años. Atencio se casó a los 18, pero él y su esposo rara vez tenían suficiente para llegar a fin de mes. “Recuerdo pensar, ‘¿Qué tipo de comienzo de mi vida adulta es este?'”.

Finalmente, fueron acogidos por la madre de su esposo. “Si no fuera por ella, habríamos estado sin hogar”, dijo. Pero salir de la deuda fue agonizante.

“Terminas en este ciclo”, dijo. “Te endeudas. Luego tomas préstamos para tratar de pagar parte de la deuda. Pero luego está todo ese interés”. Con un mal historial de crédito, Atencio en ocasiones dependía de prestamistas a los que hay que devolver el dinero pronto, cuyas altas tasas de interés pueden aumentar drásticamente lo que deben los prestatarios.

Además, muchos empleadores también verifican los puntajes de crédito, lo que dificultaba que Atencio encontrara algo más que trabajos mal remunerados.

El trabajo en el refugio fue un paso adelante, y este año Atencio obtuvo el apartamento, que está reservado para familias monoparentales en riesgo de quedarse sin hogar. (Atencio se separó de su esposo el año pasado).

Desafíos de vivienda en Colorado

Las luchas de vivienda de Atencio están lejos de ser únicas. Jim y Cindy Powers, quienes viven en Greeley, una pequeña ciudad al norte de Denver, vieron colapsar sus propios sueños de vivienda después de que a Cindy se le diagnosticara una afección potencialmente mortal que requirió múltiples cirugías y dejó a la pareja con más de $250,000 en deuda médica.

Cuando los Powers se declararon en quiebra, el acuerdo protegió su hogar. Pero su hipoteca fue vendida y el nuevo prestamista rechazó el plan de pago. Perdieron la casa.

Lindsey Vance, de 40 años, quien se mudó a Denver hace cinco años en busca de viviendas más asequibles que en el área de Washington, DC, de donde es originaria, aún no puede comprar una casa debido a deudas médicas. Ella y su esposo tienen un ingreso de seis cifras, pero las facturas médicas por incluso atención de rutina que ha luchado por pagar desde sus 20 años han afectado su crédito, dificultando la obtención de un préstamo. “Estamos atrapados en un punto muerto”, dijo.

En Denver y sus alrededores, funcionarios electos, líderes empresariales y otros se han mostrado cada vez más preocupados por la deuda médica mientras buscan formas de abordar lo que muchos ven como una crisis de vivienda.

“Son cosas profundamente conectadas”, dijo Sarah Parady, miembro del Concejo Municipal de Denver. “A medida que los precios de la vivienda han subido y subido, he visto a más y más personas, especialmente personas con problemas médicos y deudas, perder la seguridad en la vivienda”.

Parady, quien se postuló para el cargo el año pasado para abordar la asequibilidad de la vivienda, está liderando un esfuerzo para que la ciudad compre y cancele la deuda médica de los residentes de la ciudad.

Impulsado por los precios disparados y las tasas de interés en aumento, el costo de comprar una vivienda en Denver se más que duplicó desde 2015 hasta 2022, según un análisis reciente. Y con los alquileres también aumentando, los desalojos están en alza luego del paréntesis de los dos primeros años de la pandemia.

Tal vez en ningún lugar la crisis de Denver es más visible que en las calles. El centro de la ciudad está lleno de tiendas de campaña y campamentos, incluido uno que se extiende por varias cuadras cerca del refugio y la clínica donde Atencio solía trabajar. Según un conteo, la población sin hogar del área metropolitana de Denver aumentó casi un 50% desde 2020 hasta 2023.

CEDP, que fue fundado para ayudar a los residentes con desafíos de vivienda desencadenados por la pandemia, se unió este año a otros defensores de consumidores y pacientes de Colorado para presionar a la legislatura en busca de protecciones más sólidas para los pacientes con deuda médica.

Y en junio, Colorado promulgó una ley pionera que prohíbe que la deuda médica se incluya en los informes de crédito de los residentes o se tenga en cuenta en sus puntajes crediticios, una medida que colocó al estado a la vanguardia de los esfuerzos a nivel nacional para ampliar las protecciones contra las deuda para los pacientes.

Algunos otros estados están considerando medidas similares. Y en Washington, DC, defensores de consumidores y pacientes están presionando para que se tomen medidas federales para limitar las facturas médicas en los informes de crédito. En la mayoría de los estados, incluyendo muchos con las tasas más altas de deuda médica, los pacientes aún no tienen tales protecciones.

Por su parte, Atencio espera que el nuevo apartamento marque un punto de inflexión.

El hogar es modesto, una pequeña unidad en una vieja torre de concreto. Hay un guardia de seguridad en la puerta principal y pasillos largos pintados de azul y marrón institucional.

La familia de Atencio se está instalando, junto con cuatro ratas mascotas: Stitch, Cheese, Peach y Bubbles, que viven en una jaula grande en la sala de estar. “Esto se siente como libertad”, dijo Atencio.

Ha tratado de darles a sus hijos, de 5 y 11 años, una sensación de seguridad: comidas caseras y espacio para jugar o pasar el rato en sus propios dormitorios. Como todos los padres, se preocupa por el tiempo que pasan frente a las pantallas y frunce el ceño cuando critican lo que hay para cenar. (No les gustaron las papas que puso en un asado al horno).

Todos son estudiantes a tiempo completo: Atencio, que dejó su trabajo en el refugio, está cursando una maestría en trabajo social. Su hijo acaba de empezar el jardín de infantes y su hija está en la escuela media. “Tengo grandes planes y grandes objetivos”, dijo.

Y con varios miles de dólares de deuda médica aún por pagar, agregó que tiene cuidado de no llevar a sus hijos a un hospital o médico fuera de la red. “No cometeré ese error de nuevo”, dijo.

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).

It nearly was. Atencio and his children for years slept on friends’ couches or stayed with family, unable to rent an apartment because of poor credit. A big reason, he said, was medical debt.

Atencio had a heart attack at 19, triggered by an undiagnosed congenital condition. The debts from his care devastated his credit score. “It always felt like I just couldn’t get a leg up,” he said, recalling a life of dead-end jobs and high-interest loans as he tried to stay ahead of debt collectors. By 25, he’d declared bankruptcy.

Across the country, medical debt forces legions of Americans to make painful sacrifices. Many cut back on food, take on extra work, or drain retirement savings. For millions like Atencio, the health care system is threatening their very homes.

That’s proven particularly devastating in communities like Denver, where skyrocketing prices have put housing out of reach for many residents and fueled a crisis that’s left thousands homeless and sleeping on the streets.

At the Community Economic Defense Project, or CEDP, a Denver nonprofit that helps people facing eviction or home foreclosure, about two-thirds of clients have medical debt, an informal survey by KFF Health News and the organization suggests. Close to half of the nearly 70 people surveyed said medical debt played a role in their housing issue, with about 1 in 6 saying it was a major factor.

“All day long I hear about medical debt,” said Kaylee Mazza, a tenant advocate who staffs a CEDP legal clinic at the Denver courthouse that offers aid to tenants going through eviction proceedings. “It’s everywhere.”

Nationwide, about 100 million people have some form of health care debt. Of those, about 1 in 5 said the debts have forced them to change their living situation, including moving in with friends or family, according to a 2022 KFF poll.

A growing body of evidence shows that stable housing is critical to physical and mental well-being. Some major medical systems — including several in Colorado — have even begun investing in affordable housing in their communities, citing the need to address what are sometimes called social determinants of health.

But as hospitals and other medical providers leave millions in debt, they inadvertently undermine community health, said Brian Klausner, a physician at a clinic serving homeless patients in Raleigh, North Carolina.

“Many of the hospitals across the country that are now publicly vowing to address health inequities and break down barriers to health are simultaneously helping to create these very problems,” Klausner said. “Nobody likes the elephant in the room, but the reality is that there are thousands of sick Americans who are likely homeless — and sick — because of medical debt.”

A Downward Spiral

Medical debt can undermine housing security in several ways. For some, it depresses credit scores, making it difficult to get a lease or a mortgage. Last year, about 1 in 8 U.S. consumers with a credit report had a medical debt listed on it, according to the nonprofit Urban Institute.

Patients with chronic medical conditions may fall behind on rent or home payments as they scramble to keep medical debts in check to preserve access to health care. Many hospitals and other providers will turn away patients with outstanding bills, KFF Health News found.

Denise Beasley, who also assists clients at CEDP in Denver, said many older people, who typically depend most on physicians and medications, believe they must pay their medical and pharmacy bills before anything else. “The elderly are terrified,” she said.

For others, such debt can compound financial struggles brought on by an accident or unexpected illness that forces them to stop working, jeopardizing their health coverage or ability to pay for housing.

In Seattle, researchers found widespread medical debt among residents in homeless encampments. And those with such debt tended to experience homelessness two years longer than encampment residents without it.

More broadly, people with medical debt are more likely to say the debt has caused them to be turned down for a rental or a mortgage than people with student loans or credit card debt, according to a 2019 nationwide survey of renters, homebuyers, and property owners by real estate company Zillow.

For Atencio, who left home at 16, his struggles with medical debt began with the heart attack. He was working at a gas station and living in Trinidad, a small city in southern Colorado near the New Mexico border.

Rushed to a local hospital, he underwent surgery. The bills, which topped $50,000, weren’t covered by his health plan because he’d unknowingly gone to an out-of-network provider, he said. “I fought it as hard as I could, but I couldn’t afford a lawyer. I was stuck.”

Atencio, who is transgender, has close-cropped dark hair and a large tattoo on his right forearm memorializing two friends who died in a car accident. Sitting on an aging couch in an apartment with bars on the windows, he’s philosophical about his long journey from that medical crisis through years of debt and housing insecurity. “We’ve pulled ourselves out of this,” he said. “But it took a toll.”

When Atencio’s credit score dipped close to 300, the lowest rating, there were few places to turn for help. Atencio’s relationship with his parents, who divorced when he was 2, had been strained for years. Atencio got married at 18, but he and his husband rarely had enough to make ends meet. “I remember thinking, ‘What kind of a start to my adult life is this?’”

They were ultimately taken in by Atencio’s mother-in-law. “If it wasn’t for her, we would have been homeless,” he said. But getting out from the debt was agonizing.

“You end up in this cycle,” he said. “You get into debt. Then you take out loans to try to pay off some of the debt. But then there’s all this interest.” With poor credit, Atencio relied at times on payday lenders, whose high interest rates can dramatically increase what borrowers owe. Many employers also check credit scores, which made it difficult for Atencio to land anything but low-wage jobs.

The job at the shelter was a step up, and Atencio this year got the apartment, which is reserved for single-parent families at risk of being homeless. (Atencio separated from his husband last year.)

Colorado’s Housing Challenges

Atencio’s housing struggles are hardly unique. Jim and Cindy Powers, who live in Greeley, a small city north of Denver, saw their own housing dreams collapse after Cindy was diagnosed with a life-threatening condition that required multiple surgeries and left the couple with more than $250,000 in medical debt.

When the Powers declared bankruptcy, the settlement protected their home. But their mortgage was sold, and the new lender rejected the payment plan. They lost the house.

Lindsey Vance, 40, who moved to Denver five years ago seeking more affordable housing than the Washington, D.C., area where she was from, still can’t buy a house because of medical debts. She and her husband have a six-figure income, but medical bills for even routine care that she’s struggled to pay since her 20s have depressed her credit score, making it difficult to get a loan. “We’re stuck in a holding pattern,” she said.

In and around Denver, elected officials, business leaders, and others have become increasingly concerned about medical debt as they look for ways to tackle what many see as a housing crisis.

“These things are deeply connected,” Denver City Council member Sarah Parady said. “As housing prices have gone up and up, I’ve seen more and more people, especially people with a medical issues and debts, lose housing security.” Parady, who ran for office last year to address housing affordability, is helping lead an effort to get the city to buy and retire medical debt for city residents.

Fueled by skyrocketing prices and rising interest rates, the cost of buying a home more than doubled in Denver from 2015 to 2022, according to one recent analysis. And with rents also surging, evictions are rocketing upward after slowing during the first two years of the pandemic.

Perhaps nowhere is Denver’s crisis more visible than on the streets. The city’s downtown is dotted with tents and encampments, including one that stretches over several blocks near the shelter and clinic where Atencio used to work. By one count, metro Denver’s homeless population increased nearly 50% from 2020 to 2023.

CEDP, which was founded to help residents with housing challenges sparked by the pandemic, this year joined other Colorado consumer and patient advocates to push the legislature for stronger protections for patients with medical debt.

And in June, Colorado enacted a trailblazing bill that prohibits medical debt from being included on residents’ credit reports or factored into their credit scores, a move that put the state at the forefront of efforts nationally to expand debt protections for patients.

A few other states are considering similar steps. And in Washington, D.C., consumer and patient advocates are pushing for federal action to limit medical bills on credit reports. In most states — including many with the highest rates of medical debt — patients still have no such protections.

For his part, Atencio is hoping the new apartment marks a turning point.

The home is modest — a small unit in an aging concrete tower. There’s a security guard by the front door and long, linoleum corridors painted institutional blue and brown.

Atencio’s family is settling in, along with four pet rats — Stitch, Cheese, Peach, and Bubbles — who live in a large cage in the living room. “This feels like freedom,” said Atencio.

He’s tried to give his children, who are 5 and 11, a sense of security: home-cooked meals and the space to play or hang out in their own bedrooms. Like parents everywhere, he frets over their screen time and rolls his eyes when they critique what’s for dinner. (They didn’t like the potatoes he put in a pot roast.)

They are all full-time students: Atencio, who left his job at the shelter, is working on a master’s in social work. His son just started kindergarten, and his daughter is in middle school. “I have big plans and big goals,” he said.

And with several thousand dollars of medical debt still to pay off, Atencio said he’s careful not to take his kids to an out-of-network hospital or physician. “I won’t make that mistake again,” he said.

About This Project

“Diagnosis: Debt” is a reporting partnership between KFF Health News and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on original polling by KFF, court records, federal data on hospital finances, contracts obtained through public records requests, data on international health systems, and a yearlong investigation into the financial assistance and collection policies of more than 500 hospitals across the country. 

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status for KFF Health News to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses. And the CED Project, a Denver nonprofit, worked with KFF Health News on a survey of its clients to explore links between medical debt and housing instability. 

KFF Health News journalists worked with KFF public opinion researchers to design and analyze the “KFF Health Care Debt Survey.” The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Reporters from KFF Health News and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

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).

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.

Congress returns from its August recess with a long list of things to do and not a lot of time to do them. The fiscal year ends Sept. 30, and it’s possible that lawmakers will fail to finish work not only on the annual appropriations bills, but also on any short-term spending bill to keep the government open.

Meanwhile, Medicare has announced the first 10 drugs whose prices will be negotiated under the Inflation Reduction Act of 2022. Exactly how the program will work remains a question, however. Even how the process will begin is uncertain, as drugmakers and other groups have filed lawsuits to stop it.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Alice Miranda Ollstein of Politico.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Among the takeaways from this week’s episode:

• Hard-line Republicans are refusing to back even a temporary government spending bill, suggesting a government shutdown looms — with repercussions for health programs. While the Senate and House have come to intra-chamber agreements on subjects like community health center funding or even have passed spending bills, Congress as a whole has been unable to broker an overarching deal.
• A coalition of House Republicans is falsely claiming that global HIV/AIDS funding through PEPFAR promotes abortion and is battling efforts to extend the program’s funding. PEPFAR is a bipartisan effort spearheaded by then-President George W. Bush and credited with saving millions of lives.
• The PEPFAR fight underscores the dysfunction of the current Congress, which is struggling to fund even a highly regarded, lifesaving program. Another example is the months-long blockade of military promotions by a freshman Republican senator, Alabama’s Tommy Tuberville, a member of the Senate Armed Services Committee. His objections over an abortion-related Pentagon policy have placed him at odds with top military leaders, who recently warned that his heavy-handed approach is weakening military readiness.
• The Biden administration recently announced new staffing requirements for nursing homes, as a way to get more nurses into such facilities. But how long will compliance take, considering ongoing nursing shortages? And the drug industry is reacting to the news of which 10 drugs will be up first for Medicare negotiation, with much left to be sorted out.
• In abortion news, a Texas effort to block patients seeking abortions from using the state’s roads is spreading town to town — and, despite being dubiously enforceable, it could still have a chilling effect.

Also this week, Rovner interviews Meena Seshamani, who leads the federal Medicare program, about the plan to start negotiating drug prices.

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

Julie Rovner: JAMA Health Forum’s “Health Systems and Social Services — A Bridge Too Far?” by Sherry Glied and Thomas D’Aunno.

Alice Miranda Ollstein: The Washington Post’s “Heat’s Hidden Risk,” by Shannon Osaka, Erin Patrick O’Connor, and John Muyskens.

Rachel Cohrs: The Wall Street Journal’s “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins.

Joanne Kenen: Politico’s “How to Wage War on Conspiracy Theories,” by Joanne Kenen, and “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign,” by Kevin McGill.

Also mentioned in this week’s episode:

• The Washington Post’s “Highways Are the Next Antiabortion Target. One Texas Town Is Resisting,” by Caroline Kitchener.
• KFF Health News’ “Biden Administration Proposes New Standards to Boost Nursing Home Staffing,” by Jordan Rau.
• Stat’s “The Curious Case of J&J’s Stelara, The Unluckiest Drug on Medicare’s List,” by Rachel Cohrs.

Click to open the transcript

Transcript: Welcome Back, Congress. Now Get to Work.

[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, Sept. 7, 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 Rachel Cohrs of Stat News.

Rachel Cohrs: Good morning.

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

Joanne Kenen: Hi, everybody.

Rovner: And Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Later in this episode, we’ll have an interview with Meena Seshamani, who runs the Medicare program for the federal government, with an update on the Medicare drug negotiation debate as, we’ll discuss, the first 10 drugs that will be subject to negotiation were announced last week. But first, this week’s news. So Labor Day is behind us, and Congress is back — sort of. The Senate is back. The House returns next week. And there are lots of questions to be answered this fall, starting with whether or not Congress can finish the annual spending bills before the start of fiscal 2024 on Oct. 1. Spoiler: They cannot. But there’s also a real question whether Congress can even pass a short-term bill to keep the government running while lawmakers continue to work on the rest of the appropriations. As of now, what do you guys think are the odds that we’re going to end up with some kind of government shutdown at the end of the month?

Ollstein: Well, it’s whether it happens at the end of the month or at the end of the year, really. Folks seem pretty convinced that it will happen at some point. It could be short-lived. But, yeah, like you said, you have some hard-line House Republicans who say they won’t support even a temporary stopgap bill without spending cuts, policy changes, without sort of extracting some of their demands from leadership. And you could work around that in the House by cobbling together a coalition of Republicans and Democrats. But that also puts [House Speaker Kevin] McCarthy’s leadership in jeopardy. And so, we’re having sort of the same dynamic play out that we saw earlier this year, trying to navigate between the hard-line House Republicans and, you know, the more vulnerable swing districts’ members. So it’s … tough.

Rovner: Yeah, it’s the Republicans from districts that [President Joe] Biden won … basically.

Ollstein: Yeah. And so you have this weird game of chicken right now where both the House and Senate are trying to pass whatever they can to give themselves more leverage in the ultimate House-Senate negotiations. They think, OK, if we pass five bills and they only pass one, you know, then we have the upper hand. So we’ll see where that goes.

Rovner: It’s funny, because the Senate has been a well-oiled machine this year on the spending bills, which is unusual. I was about to say I will point out that there are two women: the chairman and ranking member. But that’s actually also true in the House. We do have women running the appropriations process this year. But I was amused that Kevin McCarthy, sometime during August, a couple of weeks ago, said, you know, very confidently, well, we’ll pass a short-term spending bill. You know, we won’t let the government shut down. And by the next day, the hard-line Republicans, the right wing, were saying, yeah, no you won’t. You’re going to have to deal with us first. And, obviously, there’s lots of health stuff that’s going to get caught up in that. The end of the fiscal year also marks the end of funding authority for a number of prominent programs. This is not the same as the appropriations programs whose authorizations lapse can continue, although things can get complicated. PEPFAR, the two-decade-old bipartisan program that provides AIDS and HIV prevention and treatment around the world, is one of those programs that, at least as of now, looks pretty stuck. Alice, is there any movement on this? We’ve talked about it before.

Ollstein: Not yet. So the latest we know, and we got this last night, is that [Foreign Relations Committee] Chairman [Bob] Menendez in the Senate is floating a new compromise. Basically, supporters of PEPFAR have been pushing for the full five-year standard reauthorization. And a coalition of House Republicans who are claiming that PEPFAR money is going to abortion say they want no reauthorization at all. They just want the program to sort of limp along through appropriations. So between five years and zero, Menendez is now suggesting a three-year extension. There is a huge desire not to just have the one-year funding patch because that would kick all of this into the heat of the 2024 season. And if you think the debate is ugly now over abortion and federal spending, just wait until 2024.

Kenen: I mean, this … [unintelligible] money … it’s saved tens of millions of lives — and with bipartisan support in the past.

Rovner: It was a Republican initiative.

Kenen: Right. It was President Bush, George the second.

Rovner: George W. Bush. Yeah.

Kenen: And they’re not saying they’re actually going out and using the AIDS dollars to conduct, to actually do abortions. They’re saying that there’s, you know, they’re in the world of abortion and they’re promoting abortion, etc., etc. So the conversation gets really, really, really, really muddled. Under U.S. law, they cannot use U.S. dollars for abortion under the Hyde Amendment, you know, all sorts of other foreign policy rules. So it’s hard to overstate how important this program has been, particularly in Africa. It has saved millions and millions of lives. And I think Alice might have broken the story originally, but it got caught up in abortion politics, and it caught people by surprise. This is not something … everything in Washington gets caught up in politics, except this! So I think it’s been quite shocking to people. And it’s, I mean — life-and-death sounds like a, you know, it’s a Washington cliché — this is life-and-death.

Ollstein: Yeah, absolutely. And, you know, even though the program won’t shut down if they don’t manage to get a reauthorization through, you know, I talked to people who run PEPFAR services in other countries, and they said that, you know, having this year-to-year funding and instability and uncertainty — you know, they won’t be able to hire, they won’t be able to do long-term planning. They said this will really undermine the goal to eliminate HIV transmission by 2030.

Cohrs: Oh, I actually did just want to jump in about another Sept. 30 deadline, because there was a big development this week. I know we were just talking about long-term planning. There is funding for community health centers that’s expiring at the end of September as well. DSH cuts could go into effect for hospitals. We do this routine every so often, but the House is actually more in step than the Senate on this issue; they released — at least Republicans released — a draft legislation, where all three committees of jurisdiction are in agreement about how to proceed. There are some transparency measures in there.

Rovner: The three committees in the House.

Cohrs: In the House. Yes, yes, we’re talking about the House. Yeah. So, they have reconciled their differences here and are hoping to go to the floor this month. So, I think they are out of the gate first, certainly with some sort of longer-term solution here. Again, could get punted. But I think it is a pretty big development when we’re talking about these extenders that the industry cares about very much.

Kenen: Congress is so polarized that it can’t even do the things that it agrees on. And we have seen this before where CHIP [Children’s Health Insurance Program] got caught up a few years ago. Community health clinics have gotten caught right in that same bill, right? But, you know, we really have this situation where it’s so dysfunctional they can’t even move fully on things that everybody likes. And community health centers date back to the early ’60s. However, they got a really big expansion, again, under second President Bush. And they’re popular, and they serve a need, and everybody likes them.

Rovner: They got a bigger expansion under the Affordable Care Act.

Kenen: Right, but they, you know — but I think that the Bush years was like the biggest in many years. And then they got more. So again, I mean, are they going to shut their doors? No. Is it going to be a mess? It is already a mess. They can’t — they don’t know what’s coming next. That’s no way to run a railroad or a health clinic.

Rovner: All right, well, one more while we’re on the subject of abortion-related delays: Alabama Sen. Tommy Tuberville is still blocking Senate approval of routine military promotions to protest the Biden administration’s policy of allowing funding for servicewomen and military dependents to travel for abortions if they’re posted to states where it’s banned. Now, the secretaries of the Army, Navy, and Air Force are joining together to warn that Tuberville’s hold is threatening military readiness. Tuberville apparently went on Fox News last night and said he’s got more people who are coming to support him. Is there any end to this standoff in sight? I mean, people seem to be getting kind of upset about it. It’s been going on since, what, February?

Ollstein: Yeah, there is not yet an end in sight. So far, all of the attempts to pressure Tuberville to back down have only hardened his resolve, it seems, you know, and he’s gone beyond sort of his original statement of, you know, all of this is just to get rid of this policy that doesn’t pay for abortions; it just allows people to travel out of state if they’re stationed — they don’t get to choose where they’re stationed — if they’re stationed somewhere where abortion is not legal or accessible. And so now he’s making claims about other things in the military he considers too woke. He’s criticized some of these individual nominees themselves that he’s blocking, which was not sort of part of the original stand he took. And so, it’s tough, and there isn’t enough floor time to move all of these and go around him. And so this pressure campaign doesn’t seem to be really making any headway. So I don’t really see how this gets resolved at this point.

Kenen: Except that other Republicans are getting a little bit more public. I mean, they were sort of letting him run out for a while. And there’s more Republicans who are clearly getting enough of this. But I mean, unless McConnell can really get him to move — and we don’t know what’s gone on behind closed doors, but we’re certainly not seeing any sign of movement. In fact, as Alice said, he’s digging in more. I mean, like, Marines and woke are not the two words you usually hear in one sentence, but in his worldview, they are. So, I think it’s unprecedented. I mean, I don’t think anyone’s ever done this. It’s not like one or two people. It’s like the entire U.S. military command can’t move ahead.

Rovner: I’ve been doing this a very long time, and I don’t remember anything quite like this. Well, the one thing that we do expect to happen this fall is legislation on — and Rachel, you were referring to this already — sort of health care price transparency and PBMs, the pharmacy benefit managers. Where are we with that? They were supposed to work on it over the August break. Did they?

Cohrs: They were supposed to work on it. The House was clearly working on it and reconciling some of their differences. They’re planning to introduce legislative text on Friday. So, I think Democrats aren’t on board yet, so things could change from the draft they had been circulating early this week. But again, Republicans don’t really need Democrats to move forward, at least in the House. The Senate has been pretty quiet so far. Not to say that no work has gone on, but they certainly weren’t ready for the rollout in the same way that the House was. You know, I think there are still some big questions about, you know, what they’re planning to accomplish with insulin policy, how they’re planning to fit together this jigsaw puzzle of PBM transparency and reforms that have come out of different committees. And I think it’ll come down to [Senate Majority Leader] Sen. Schumer making some tough choices. And from my understanding, that hasn’t quite happened yet. But if the actual showdown happens November, December, they still have some time.

Rovner: Yeah. Now they’re not going out early. They’re clearly going to be fighting over the appropriation. So, the legislative committees have plenty of time to work on these other things. All right. Well, let’s turn to Medicaid for a moment. The quote-unquote “unwinding” continues as states move to redetermine who remains eligible for the program and who doesn’t following the pandemic pause. As predicted, it’s been a bit of a bumpy road. And now it seems a bunch of states have been incorrectly dropping children from Medicaid coverage because their parents are no longer eligible. That’s a problem because nationwide, income limits for children’s eligibility is higher than parents’. In some states, it is much higher. I remember after Hurricane Katrina, in Louisiana, parents were only eligible if they earned 15% of poverty. Somebody said 50, and the Medicaid director said, “No, 15, one-five.” Whereas kids are eligible to, I believe it’s 200% of poverty. And I think that’s a national level.

Kenen: Now, in some states it’s higher.

Rovner: Yes. But I say this is happening in a bunch of states because federal government won’t tell us how many or which ones. We do know it’s more than a dozen, but this is the second time the administration has admonished states for wrongly canceling Medicaid coverage. And they wouldn’t say which states were involved at that time either. Is this an effort to keep this as apolitical as possible, given that the states most likely to be doing this are red states who are trying to remove ineligible people from Medicaid as fast as they can, that they’re trying to sort of keep this from becoming a Republican versus Democrat thing.

Ollstein: It seems like, from what we’re hearing, that the administration is really wary of publicly picking a fight with these states. They want the states to work with them. And so, even if the states are going about this in a way they think is totally wrong, they don’t want to just put them publicly on blast, because they think that’ll make them, again, double down and refuse to work with the government at all. And so, they’re trying to maintain some veneer of cooperation. But at the same time, you’re having, you know, millions of people, including children, falling through the cracks. And so, you know, we have sort of this sternly-worded-letter approach and we’ll see if that accomplishes anything, and if not, you know, what measures can be taken. You know, the administration also created a way for states to hit pause on the process and take a little more time and do a little more verification of people’s eligibility. And some — a couple states — have taken advantage of that, and it’s been successful in, you know, having fewer people dropped for paperwork reasons, but it’s not really happening in the states where it sort of most needs to happen, according to experts.

Rovner: The administration has had fingers pointed at it, too, because apparently it approved some of these plans from the states that were going to look at total family income without realizing that, oh, that meant that kids who are still eligible could end up losing coverage because their parents are no longer eligible.

Kenen: Right. And I also read something yesterday that in some cases it’s sort of a technical issue rather than a “how much outreach and what your intentions are,” that it’s a programing issue, which is related to what Julie just said about the plan. So, it’s not that these states set about to drop these kids, and there may be some kind of goodwill to fix it, in which case you don’t want to get in — and I don’t know that it’s 100% red states either. So —

Rovner: No, that’s clear. We assume, because they’re the ones going fastest, but we do not know.

Kenen: Right, so that there seems to be some kind of — the way it was set up, technically, that can be remedied. And if it’s a technical fix as opposed to an ideological fight, you don’t really want to — you want to figure out how to reprogram the computer or whatever it is they have to do and then go back and catch the people that were lost. So, they’ve been pretty low-key about politicizing rewinding in general. But on the kids, I think they’re going to be even more — CHIP passed, another thing with bipartisan support that’s a mess. I mean, it seems to be the theme of the day. But, you know, CHIP was created on a bipartisan basis, and it’s always been sustained on a bipartisan basis. So, I think that the issue, I don’t know how technically easy it is to fix, but there’s a big difference in how the administration goes after someone that’s intentionally doing something versus someone who wrote their computer programmer set something up wrong.

Rovner: Well, we will definitely keep on this one.

Kenen: But it’s a big mess. It’s a lot of kids.

Rovner: It is a big mess. And let’s turn to the thing that is not bipartisan in Congress, and that is —

Kenen: That’ll be a bigger mess.

Rovner: — Medicare drug negotiations. Yes. While we were away, the federal government released its much-anticipated list of the 10 brand-name drugs that will be the first tranche up for potential price negotiation. I say potential, because the companies have the option of negotiating or not — sort of — and because there are now, I think, nine lawsuits challenging the entire program. My interview with Medicare administrator Meena Seshamani will get into the nuts and bolts of how the negotiation program is supposed to work. But Rachel, tell us a little bit about the drugs on the list and how their makers are trying to cancel this entire enterprise before it even begins.

Cohrs: Sure. So, a lot of these drugs that we’re seeing on the list are blood thinners. Some are diabetes medications. There are drugs for heart failure, rheumatoid arthritis, Crohn’s disease, and there’s also a cancer treatment, too. But I think overall, the drugs were chosen because they have high cost to Medicare. And it was —

Rovner: So that either could mean a lot of people use an inexpensive drug —

Cohrs: Yes.

Rovner: — or a few people use a very expensive drug.

Cohrs: Correct. And it was Wall Street’s favorite parlor game to try to guess what drugs were going to be on this list of 10 drugs that are going to be the guinea pigs to go through this program for the very first time. But it was interesting, because there were a few surprises. Medicare officials were using newer data than Wall Street analysts had access to. So, there were a couple drugs, especially further down on the list, that people used more in the period CMS [Centers for Medicare & Medicaid Services] was studying than had been used previously. So, we saw a couple very interesting instances of a drug being chosen for the list, even though it just kind of fell through the cracks. It was J&J’s [Johnson & Johnson’s] Stelara. It’s a Crohn’s disease treatment, and it does have competition coming in the market soon, but just because of a fluke of kind of when it was approved by the FDA, it just missed cutoffs for some of these exemptions and is now subject to some pretty significant discounts through the program.

Rovner: We’ll link to your very sad story about Stelara.

Cohrs: Sad for the company, but not sad for the patients who will hopefully be paying less for this medication. And there’s also the case of Astellas [Pharma Inc.], which makes a prostate cancer drug that’s very expensive. A lot of people expected that to be selected, but actually wasn’t. And Astellas had sued the Biden administration already before the list came out and then had to withdraw their lawsuit yesterday because their argument that they were going to be harmed by this legislation was made much weaker by the fact that they weren’t selected for this first year of the program. So, who knows? They could dust off their arguments a year from now or two years from now. But it was interesting to see kind of some of these surprises on the list. Again, there are still several, like you mentioned, outstanding lawsuits in several different jurisdictions. I think the main one that we’re watching is by the [U.S.] Chamber of Commerce, which requested a preliminary injunction by the end of this month. So, we’ll see if that comes through. But it is a very long road to 2026. There might be a new administration by then. So, I think there are still a lot of questions about whether this reaches the finish line. But I think it’s a very important step for CMS to get this list out there in the world.

Rovner: So, I spent some time digging in my notes from earlier years, and I dug up notes from an interview I did on Aug. 26 with a spokesperson from the drug industry about how the Medicare drug benefit, quote, “impact the ability of companies to research new medicines. And if that happens, the elderly would be the ones hurt the most.” That quote, by the way, was from Aug. 26 of 1987. Some things truly never change. But is this maybe, possibly, the beginning of the end of drugmakers being able to charge whatever they want in the United States? Because it’s the only country where they can.

Cohrs: Oh, they can still charge whatever they want. This law doesn’t change that. It just changes the fact that Medicare won’t be paying whatever drugmakers happen to charge for an unlimited amount of time. Like, they can still charge whatever they want to Medicare for as long as they can get on the market before they’re selected for this negotiation program. But certainly there could be significant cost — significant savings to Medicare, even if those prices are high. And it’s just kind of a measure that forces price reductions, even if the generic or biosimilar market isn’t functioning to lower those prices through competition.

Kenen: Right. And it’s only Medicare. So, people who are not on Medicare — insurance companies also negotiate prices, but they’re not the government. It’s different. But I mean, these drugs are not going to start being, you know, three bucks.

Rovner: But they may stop being 300,000.

Kenen: Well, we don’t know, because there are some people who think that if Medicare is paying less, they’re going to charge everybody else more. We just don’t know. We don’t know what their behavior is going to be. But no, this does not solve the question of affordability of medication in the United States.

Rovner: The drug companies certainly think it’s the camel’s nose under the tent.

Kenen: They have some medicine for camels’ noses that they can charge a lot of money for, I’m sure.

Rovner: I bet they do. While we are on the subject of things that I have covered since the 1980s, last week the Biden administration finally put out its regulation requiring that nursing homes be staffed 24/7/365 by, you know, an actual nurse. One of the first big reconciliation bills I covered was in 1987 — that was a big year for health policy — and it completely overhauled federal regulation of nursing homes, except for mandating staffing standards, because the nursing homes said they couldn’t afford it. Basically, that same fight has been going on ever since. Except now the industry also says there aren’t enough nurses to hire, even if they could afford it. Yet patient advocates say these admittedly low staffing ratios that the Biden administration has put out are still not enough. So, what happens now? Is this going to be like the prescription drug industry, where they’re going to try to sue their way out of it? Or is it going to be more like the hospital transparency, where they’re just not going to do it and say, “Come and get us”?

Kenen: My suspicion is litigation, but it’s too soon to know. I assume that either one of the nursing home chains — because there are some very big corporations that own a lot of nursing homes — there are several nursing home trade industry groups, for-profit, nonprofit. Does one owner — is in an area where there is a workforce shortage, because that does exist. I mean, I’d be surprised if we don’t see some litigation, because when don’t we see that? I mean, it’s rare. That’s the norm in health care, is somebody sues. Some of the workforce issues are real, but also this proposal doesn’t go into effect tomorrow. It’s not like — but I mean, there are issues of the nursing workforce. There are issues about not just the number of nurses, but do we have them in the right places doing the right jobs? It’s not just RNs [registered nurses]; there are also shortages of other direct care workers. I did a story a few months ago on this, and there are actually nursing homes that have closed entire wings because they don’t have enough staff, and those are some of the nonprofits. There are nursing issues.

Rovner: And a lot of nursing home staff got sick at the beginning of the covid pandemic, and many of them died before there were good treatments. I mean, it’s always been a very hard and not very well-paid job to care for people in nursing homes. And then it became a not very pleasant, not very well-paid, and very deadly job. So I don’t think that’s probably helping the recruitment of people to work in nursing.

Kenen: Right, but the issue — I think a lot of people, when you have your first family experience with a nursing home or, you know, or those of us reporters who hadn’t been familiar with them until we went and did some stories on them, I think people are surprised at how little nursing there actually is. It’s nurses’ aides; it’s, you know, what they used to call licensed practical nurses or nursing assistants; and CNAs, certified nursing assistants. They’re various; different states have different names. But these are not four-year RNs. The amount of actual nursing — forget doctors. I mean, there’s just not a lot of RNs in nursing homes. There’s not a lot of doctors who spend time in nursing homes. A lot of the care is done through people with less training. So, this is trying to get more nurses in nursing homes. And there’s been a lot of stories about inadequate care. KFF Health News — I think it was Jordan Rau who did them. There have been some good stories about particularly nights and weekends, just really nobody there. These are fragile people. And they wouldn’t be in a nursing home if they weren’t fragile people. There are a lot of horror stories. At the same time, there are some legitimate — How fast can you do this? And how well can you do it? And can you do it across the country? I mean, it’s going to take some working out, but I don’t think anybody thinks that nursing home care in this country is, you know, a paragon of what we want our elders to experience.

Rovner: And the nursing home industry points out, truthfully, that most nursing home payments now come from Medicaid, because even people who start out being able to afford it themselves often run out of money and then they end up — then they qualify for Medicaid. And Medicaid in many states doesn’t pay very much, doesn’t pay nursing homes very much. So it’s hard for these companies. We’re not even talking about the private equity companies. A lot of nursing homes operate on the financial edge. I mean, there are —our long-term care policy in this country is, you know, just: What happens, happens, and we’ll worry about it later. And this has been going on for 50 years. And now we have baby boomers retiring and getting older and needing nursing home care. And at some point, this is all going to come to a head. All right. Well, let us turn to abortion. This week marks the second anniversary of the Texas abortion ban, the so-called heartbeat bill, that bans most abortion and lets individuals sue other individuals for helping anyone getting an abortion, which the Supreme Court, if you’ll recall, allowed to take effect months before it formally overturned Roe v. Wade. And, I guess not surprisingly, Texas is still in the news about abortion. This time. The same people who brought us Texas SB 8, which is the heartbeat bill, are going town by town and trying to pass ordinances that make it illegal to use roads within that town’s borders to help anyone obtain an abortion. They’re calling it abortion “trafficking.” Now, it’s not only not clear to me whether a local ordinance can even impact a state or an interstate highway, which is what these laws are mostly aimed at; but how on earth would you enforce something like this, even if you want to?

Ollstein: So, my impression is that they do not want to. These are not meant to be practical. They are not meant to be enforced, because how would you do it other than implementing a very totalitarian checkpoint system? This is meant to —

Rovner: Yes, have you been drinking and are you on your way to get an abortion?

Ollstein: Right. Right, right, right. So, it seems like the main purpose is to have a chilling effect, which it very well could have, even if it doesn’t stand up in court. You know, you also have this situation that we’ve had play out in other ways, where people are challenging laws in courts for having a chilling effect, and courts are saying, look, you have to wait till you actually get prosecuted and challenge it, you know, do an as-applied challenge. If you can’t challenge unless there’s a prosecution but there’s no prosecutions, then you sort of just have it hanging over your head like a cloud.

Kenen: Like Alice said, there’s no way you could do this. Like, what do you do, stop every car and give every person a pregnancy test? Are you going to, like, have, you know, ultrasounds on the E-ZPass monitors? Like, you go through it, it checks your uterus. So, I mean, it’s just not — you can’t do this. But I think one of the things that was really interesting in one of the stories I read about it, I think it was in The Washington Post, was that when they interviewed people about it, they thought it was trafficking, like really trafficking, that there were pregnant woman being kidnapped and forced to have an abortion. So even if you’re pro-choice, you might say, “Oh, I’m against abortion trafficking. I mean, I don’t want anyone to be forced to have an abortion.” You know, so, it’s — the wording and the whole design of it is, they know what they’re doing. I mean, they want to create this confusion. They want to create a disincentive. There’s no way — you know, radar guns? I mean, it’s just, there’s no way of doing this. But it is part of the effort to clamp down even further on a state that has already really, really, really clamped down.

Rovner: Although, I mean, if one could sue and if one could then know about something that’s happening and then you could presumably take the person to court and say, I know you were pregnant and now you’re not, and somebody took you in a car to New Mexico or whatever …

Kenen: You can’t even prove — how do you prove that it wasn’t a miscarriage?

Rovner: That’s —

Kenen: Right? I mean …

Rovner: I’m not saying — I’m not talking about the burden of proof. I’m just saying in theory, somebody could try to have a case here. I mean, but we certainly know that Texas has done a very good job creating a chilling effect, because we still have this lawsuit from the women who were not seeking abortions, who had pregnancy complications and were unable to get health-saving and, in some cases, lifesaving care promptly. And that’s still being litigated. But meanwhile, we have, you know, just today a study out from the Guttmacher Institute that showed that despite how well these states that are banning abortion have done in banning abortion, there were presumably more abortions in the first half of 2023 than there were before these bans took effect, because women from ban states were going to states where it is not banned. And there has been, ironically, better access in those states where it is not banned. I can’t imagine that this is going to please the anti-abortion community. One would think it would make them double down, wouldn’t it?

Ollstein: We know that people are leaving their states to obtain an abortion. We also know that that’s not an option for a lot of people, and not just because a lot of people can’t afford it or they can’t take time off work, they can’t get child care — tons of reasons why somebody might not be able to travel out of state. They have a disability, they’re undocumented. We also have — it’s become easier and easier and easier to obtain abortion pills online through, you know, a variety of ways: individual doctors in more progressive states, big online pharmacies are engaged in this, overseas activist groups are engaged in this. And so, you know, that’s also become an option for a lot of people. And anti-abortion groups know that those are the two main methods. People are still continuing to have abortions. And so, they’re continuing to just throw out different ways to try to either, you know, deter people or actually block them from either of those paths.

Rovner: This fight will also continue on. So, that is this week’s news. Now we will play my interview with Meena Seshamani, and then we will come back and do our extra credits.

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 care journalist and 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 listen to your podcasts.

I am pleased to welcome back to the podcast Dr. Meena Seshamani, deputy administrator and director of the Center for Medicare at the Centers for Medicare & Medicaid Services. Meena was with us to talk generally about Medicare’s new prescription drug negotiation program earlier this summer. But now that the first 10 drugs subject to negotiation have been announced, we’re pleased to have her back. Welcome.

Meena Seshamani: Thank you for having me.

Rovner: So, remind our listeners, why hasn’t Medicare been able to negotiate drug prices until now — they negotiate prices of everything else — and what changed to make that happen?

Seshamani: That’s right. It was because of the Medicare law that Medicare did not have the ability to negotiate drugs. And thanks to the new drug law, the Inflation Reduction Act, now Medicare has the ability to negotiate the prices of the highest-cost drugs that don’t have competition. And that is part of the announcement that we had on what the first 10 drugs are that have been selected.

Rovner: So, as you say, last week, for the first time and in time for the Sept. 1 deadline, Medicare announced the list of the first 10 drugs that will be part of the first round of price negotiations. Why these 10 specifically? I imagine it’s not a coincidence that the list includes some of the drugs whose ads we see the most often on TV: drugs like Eliquis, Xarelto, and Jardiance, which I of course know how to pronounce because I see the ads all the time.

Seshamani: Well, the process of selection really was laid out in the drug law and also through the guidance that we put out that we had incorporated everybody’s comment for. So, what we did is we started with the, you know, over 7,500 drugs that are covered in the Part D Medicare prescription drug program. From there, we picked those drugs that had been on the market for seven years for a drug product or 11 years for a larger molecule or biologic product that did not have competition. And then from there, there are various exemptions and exclusions that, again, are laid out in the law: for example, drugs that have low Medicare spend, of less than $200 million; drugs that are plasma-derived products; certain orphan drugs. An orphan drug is a drug that is indicated for a rarer disease. So that, again, those specific criteria are laid out in the law and in our guidance. And then there were opportunities for manufacturers to apply, for example, for a small biotech exemption; if their drug was, you know, 80% of their, you know, Medicare Part D revenue, they could say, “Hey, I’m a small biotech.” Again, a lot of these criteria were laid out in the law. Or for a manufacturer of a biosimilar, which is kind of like a generic drug for one of these biologic drugs, they could say, “Hey, we have a biosimilar that’s going to be coming on the market, has a high likelihood of coming on the market, so you should delay negotiating” the brand, if you will, drug. So, again, all of these steps were laid out in the drug law, and those are the steps and criteria that we followed that came to that list of 10 drugs that we published.

Rovner: I did see the makers of one drug — and forgive me, I can’t remember which one it was — saying, “But our drug isn’t that expensive.” On the other hand, their drug is used by a lot of people on Medicare. So, it’s not just the list price of the drug, right? It’s how much it costs Medicare overall.

Seshamani: That’s right. The list is made up of those drugs that have the highest gross total cost to the program — so, price per unit times units of volume that is used.

Rovner: So, how does this negotiation process work? What happens now? Now we have this list of 10 drugs.

Seshamani: Yeah, a lot of this is also laid out in the law, and then we fleshed out further in our guidance. So, from the list of 10 drugs, on Oct. 1, manufacturers now have to decide if they want to participate in the negotiation program. It is a voluntary program. It is our hope that they will come to the table and want to negotiate, because I think we all have shared goals of improving access and affordability and really driving innovation for the cures and therapies that people need. So, Oct. 1, they sign agreements for the negotiation program if they decide to participate. And Oct. 2 is the deadline for gathering data. We put out what’s called an information collection request to say, this is the kind of data we’re thinking about collecting. We got lots of comments and incorporated that. So, that provides the framework for the data that we’re requesting both from the manufacturer of the selected drug, but also, there are aspects open to the public on, you know, how the drug benefits populations, for example. So that’s Oct. 2. Then we’re going to have patient-focused listening sessions, a session for each drug, for patients, their caregivers, you know, other advocates, to be able to share what they see as the benefits of the drugs that are selected. And, we will have meetings with each of the manufacturers. All of that information will come together in an initial offer that CMS will make Feb. 1, 2024, and that is a date that is stipulated in the law. The manufacturer then has about 30 days to evaluate that. If they like that offer, they can agree. If they want, they can make a counteroffer. From that counteroffer, CMS has the ability to agree or to say, “You know, we don’t agree, so let’s now have a series of negotiation meetings.” There can be up to three negotiation meetings that provides that back-and-forth, ultimately leading to an agreed-upon what’s called maximum fair price in the law. And those maximum fair prices are published by Sept. 1, 2024. Again, that Sept. 1 is stipulated in the law. And also as part of this process, CMS will publish a narrative about that negotiation process — you know, the data that was received, you know, the back-and-forth, and also we’ll publish ultimately the maximum fair prices that are agreed to.

Rovner: And does that maximum fair price just apply to Medicare?

Seshamani: The maximum fair price just applies to Medicare. The information will be available. I mean, we don’t have any authority. You know, the commercial sector, they do their own negotiations, and they will continue to do so. But part of this is an opportunity to really further the conversation about how drugs impact the lives of people. We have an opportunity now with some drugs that have been on the market for quite a while, right? Minimum of seven years or 11 years, to see how these drugs work in the real world, in people’s communities, so that we can incorporate that into what it is that we need and want for people to be healthy, to stay out of the hospital, to live meaningful lives. So it’s really an opportunity to further that conversation. And a lot of that data, a lot of those listening sessions, that will all go into our negotiation process and will be part of the narrative that we publish.

Rovner: And what happens if the drug company says either we don’t want to negotiate or we don’t like our final offer? If they say they don’t want to play, what happens?

Seshamani: Julie, I will say again, to start with, we are hopeful that the drug companies will come forward and will want to negotiate because, again, through many conversations that we have had, we do have shared goals of access and affordability and really driving innovation and procures and therapies that people need. And it is a choice for drug companies if they want to participate or not, as stipulated in the law. If a drug company decides not to sign, you know, the negotiation agreement, not to participate in negotiation, then we would refer them to the Department of Treasury for an excise tax. That excise tax is also described in the law. If a drug company has this excise tax applied, they can get out of paying the excise tax. If, No. 1, they decide to come to the table and negotiate, or No. 2, if they exit the Medicare and Medicaid market. So those are kind of their off-ramps, if you will, for that excise tax.

Rovner: So they don’t have to participate in the negotiation, but they also don’t have to participate in Medicare and Medicaid.

Seshamani: Correct.

Rovner: So I saw a lot of complaining last week with the first group of drugs that this is really only going to benefit the people on Medicare who take those drugs. But, in fact, if there really is a lot of money saved, the benefits could go well beyond this, right?

Seshamani: Yeah, I think two points. So, yes, this negotiation is for, you know, some of the highest-cost drugs to the Medicare program that don’t have competition. And the negotiated drug prices apply to the Medicare program. However, as we talked about, this really drives a conversation around drugs and really grounding this negotiation process in the clinical benefit that a drug provides. Considering things like if a drug is easier for someone to take and it’s easier for a caregiver, that can have tangible improvements to the health of the person they’re caring for, right? And I think we have that opportunity to really drive the conversation. And as we know in many aspects of health care, people look to Medicare to see what Medicare is doing. And also, the transparency around providing that narrative of the negotiation, publishing the maximum fair prices that are agreed to. That’s all data that anybody can use as they would like. And I think the second piece that’s important to remember is that negotiation is one very important piece of a very big change to Medicare prescription drug coverage. You know, alongside the $2,000 out-of-pocket tab that’s going to go into effect in 2025, the no-cost vaccines, $35 copay cap for insulin that have already gone into effect. So, really, it is part of a larger sea change in Medicare drug coverage that will help millions of people and their families. You know, I did a roundtable with seniors as we were rolling out the insulin copay cap. And one woman was telling me that she was providing money to her brother every month so that he could pay for his insulin on Medicare. So, really, I mean, this has tremendous impact not just for people on Medicare, but their families, their communities, and really furthers the conversation for the entire system.

Rovner: I was actually thinking of more nitty-gritty money, which is if you save money for Medicare, premiums will be lower for people who are getting drug coverage, and taxpayers will save money, too, right? I mean, this is not just for these people and their families.

Seshamani: Our priority is being able to reach agreement on a fair price for the people who rely on these medications for their lives and the American taxpayer in the Medicare program.

Rovner: I know you can’t comment on lawsuits, and there are many lawsuits already challenging this. But the drug companies, one of their major arguments is that if you limit what they can charge for their drugs, particularly in the United States, the last country where they can charge whatever they want for their drugs, they will not be able to afford to keep the pipeline going to discover more new, important drugs. This is an argument they’ve been making since, I told somebody earlier, since I covered this in the late 1980s. What is your response just to that argument?

Seshamani: Well, I think there were several articles, many articles were written about this on the day that the 10 selected drugs were published. They were published before the stock market opened. And there really was no impact on the stocks of the companies. There were many financial pieces written about this. So I think that is one indication of the fact that the pharmaceutical industry is strong, it is thriving, and it is designed to innovate. And what we’re hoping to do through this negotiation program is really reward the kinds of innovations that we all need, the cures and therapies that people need. Recently, the venture fund that backed Moderna invested in a new startup for small molecules. Bayer has recently invested a billion dollars in the U.S. So you see, the industry very much is thriving. That is what the stock market response also shows. And it’s also the way that we are approaching negotiation to make sure that we’re rewarding the kinds of innovations that people need.

Rovner: Well, Meena Seshamani, thank you so much. I hope we can come back to you as this negotiation process for the first time proceeds.

Seshamani: Absolutely. Thanks again, Julie.

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. Alice, why don’t you go first this week?

Ollstein: Yeah, I picked a very sad story from The Washington Post about how people who have schizophrenia are a lot more vulnerable to extreme heat. And it’s rare to find one of these health care stories where you’re just astonished. You know, I had no idea about this. You know, it really walks through not only are people more vulnerable for mental health reasons, you know, it profiles this terrible story of a guy in Phoenix who wandered off into the desert and died because he was experiencing paranoid delusions. But also, just physically, people with schizophrenia have difficulty regulating their body temperature. A lot of medications people take make people more dehydrated, less able to cope. And just an astonishingly high percentage of people hospitalized and killed by extreme heat have these mental illnesses. Of course, they’re also more likely to have housing instability or be out on the street. So just a fascinating piece, and I hope it spurs cities to think of ways to address it. One other small thing I want to compliment is it just, technically, on this article online, they have a little widget where you can convert all of the temperatures cited in the lengthy story from Fahrenheit to Celsius. And I just really appreciated that for allowing, you know, no matter where you live, you sort of get what these high temperatures mean.

Rovner: Yeah, graphics can be really helpful sometimes. Rachel.

Cohrs: Yeah. So I chose a story in The Wall Street Journal and the headline is “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins. And I think it was a really interesting and rare look inside one of these pharmaceutical companies. And Novartis hired a Wall Street analyst, Ronny Gal, to help advise them. And I think I had read his analysis before he crossed over to Novartis. So I think it was interesting to just hear how that has integrated into Novartis’ strategy and just how they’re changing their business. But I think as we’re, you know, having these conversations about drug pricing and how strategies are changing due to some of these policies, it is helpful to look at who these executives are listening to and what they’re prioritizing, whose voices in this decision-making process that really has impacts for so many people who are waiting for treatments. And I think there are tough choices that are made all the time. So I just thought it was very illuminating and helpful as we’re talking about how medicines get made in D.C.

Rovner: Yeah, maybe there will be a little more transparency to actually how the drug industry works. We will see. Joanne.

Kenen: With Julie’s permission, I have two that are both short and related. I wrote a piece for Politico Nightly called “How to Wage War on Conspiracy Theories,” and I liked it because it really linked political trends and disinformation and attempts to debunk, with very parallel things going on in the world of health care and efforts to the motivations and efforts to sow trust and what we do and do not know about how to debunk, which we’re not very good at yet. And then the classic example, of course, is the related AP story, which has a very long headline, so bear with me. It’s by Kevin McGill: “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign.” And, basically, it’s that the 5th Circuit, a conservative court that we’ve talked about before, is saying that the FDA is allowed to inform doctors, but it can’t advise doctors. And I’m not really sure what the difference is there, because if the FDA is informing doctors that ivermectin, we now know, does not work against covid, and it can in fact harm people, there’s ample data, that the FDA is not allowed to tell doctors not to use it. So the ivermectin campaign is a form of disinformation, or misinformation, whatever you want to call it, that at the very beginning, people had, you know, there were some test-tube experiments. We had nothing else. You can sort of see why people wanted … might have wanted to try it. But we have lots and lots and lots of good solid clinical research and human beings and, no, it does not cure covid. It does not improve covid. And it can be damaging. It’s for parasites, not viruses.

Rovner: It can cure worms. Well, I’m going to channel my inner Margot Sanger-Katz this week and choose a story from a medical journal, in this case the Journal of the American Medical Association. Its lead author is Sherry Glied, who’s dean of the NYU Robert F. Wagner Graduate School of Public Service and former assistant HHS [Department of Health and Human Services] secretary for planning and evaluation during the Obama administration — and I daresay one of the most respected health policy analysts anywhere. The piece is called “Health Systems and Social Services — A Bridge Too Far?” And it’s the first article I’ve seen that really does question whether what’s become dogma in health policy over the past decade that — tending to what are called social determinants of health, things like housing, education, and nutrition — can improve health as much as medical care can. Rather, argues Glied, quote, “There are fundamental mismatches between the priorities and capabilities of hospitals and health systems and the task of addressing social determinants of health,” and that, basically, medical providers should leave social services to those who are professional social service providers. That is obviously a gross oversimplification of the argument of the piece, however, but I found it really thought-provoking and really, for the first time, someone saying, maybe we shouldn’t be spending all of this health care money on social determinants of health. Maybe we should let social service money go to the social service determinants of health. Anyway, we will see if this is the start of a trend or just sort of one outlier voice. 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 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 still there @jrovner, also on Bluesky and Threads. Rachel?

Cohrs: I’m @rachelcohrs on X.

Rovner: Alice.

Ollstein: @AliceOllstein.

Rovner: Joanne.

Kenen: @JoanneKenen on Twitter, @joannekenen1 on Threads.

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

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

USE OUR CONTENT

This story can be republished for free (details).

Shementé Jones knew something wasn’t right. Her back hurt. She felt pain during sex.

She said she kept telling her doctor something was wrong.

Her doctor told her, “Just wash your underwear in Dreft,” Jones said, referring to a brand of detergent.

Within months of that 2016 appointment, Jones, who lives in a suburb of Jackson, Mississippi, was diagnosed with stage 3 cervical cancer. She underwent a hysterectomy then weeks of radiation therapy.

“I ended up fine,” said Jones, now 43. “But what about all the other women?”

The question is especially pertinent in Jones’ home state, which had the nation’s second-highest age-adjusted cervical cancer mortality rate, 3.4 deaths per 100,000 women and girls annually from 2016 through 2020, behind only Oklahoma, according to National Cancer Institute data. And, for non-Hispanic Black women such as Jones, the rates in the state are even higher — 3.7 deaths per 100,000 people. This all translates to about 50 avoidable deaths of Mississippi women from cervical cancer each year in this largely rural state.

Health care experts said such a high death rate from a cancer that is preventable, detectable, and successfully treatable when found early is a warning sign about the general state of health care in Mississippi.

“They desperately need help there,” said Otis Brawley, a professor of oncology at Johns Hopkins School of Medicine and an expert on health disparities. “Political leadership is incredibly important in turning this around, and in Mississippi, the political leadership don’t give a damn.”

Despite the beauty of Mississippi, from the rolling hills of the Natchez Trace to white-sand beaches on the Gulf of Mexico, and the cultural renown of its famous musicians and storytellers, the state’s reputation is marred by its high rates of poverty. People who live there are accustomed to being the butt of jokes, but it hurts.

“Often Mississippi gets represented poorly,” said Mildred Ridgway, an OB-GYN at the University of Mississippi Medical Center in Jackson.

Recently the state has reeled from crisis after crisis. As recently as March, tornadoes and other severe weather killed more than two dozen people and caused extensive damage. Last year, the water in Jackson, the state capital, was undrinkable for months because of treatment plant failures.

On just about any measure of health, Mississippi ranks near or at the bottom. Nationally, an estimated 10% of people under 65 lack health insurance, but in Mississippi it is about 14%. Deaths from cardiovascular disease, diabetes, cancer, and many other illnesses are among the highest per capita in the country.

The high rates of poverty contribute to the high cervical cancer mortality, health experts said. About 19% of Mississippians — nearly 1 in 5 — live in poverty, while nationally it is about 13%.

“If I had to pinpoint what that’s from, it’s from lack of education,” said Ridgway, referring to a lack of knowledge about regular cervical cancer screening, which the U.S. Preventive Services Task Force recommends every three years for women 21 to 65.

But it likely goes far beyond that, many health experts said. Doctors may be less likely to stress preventive care to less educated women and women of color, studies suggest.

“There’s a big difference in the quality of care,” said Rajesh Balkrishnan, a professor of public health at the University of Virginia who has extensively studied oncology care in Appalachia and other underserved areas.

In her case, Jones said, she could not get her doctor’s office to return her calls in a timely manner. She was concerned about her symptoms.

“I felt I wasn’t listened to. I called her more than she called me,” Jones said of her doctor. “I was going to my appointments, and I was ignored.”

And getting access to any care — let alone quality, culturally competent care from providers who acknowledge a patient’s heritage, beliefs, and values during treatment — may be difficult.

Most of the state’s 82 counties are rural. The average travel distance to a grocery store is 30 miles, and half the population lives in a county that is considered medically underserved, said Letitia Thompson, a vice president in Mississippi for the American Cancer Society.

Low-income rural residents often lack reliable transportation, she said, and even if they own a vehicle, they lack gas money. They often can’t find — or pay for — someone to take care of their children so they can go to the doctor. Women with low-paying jobs often lack the time to drive to a clinic in a distant town, or the ability to take off from work without losing pay.

“Women who work and take care of children often have a huge burden of responsibility,” Ridgway said. “They don’t have time or the money.”

Many also don’t have insurance. While the Affordable Care Act has lowered the uninsured rate in Mississippi, an estimated additional 88,000 Mississippians could have coverage through Medicaid if the state expanded eligibility for the federal-state insurance program for low-income Americans. But the state is one of 10 that have not agreed to expand coverage to more adults.

Mississippi Gov. Tate Reeves, a Republican up for reelection this year, is opposed to expansion. His Democratic challenger, Brandon Presley, a second cousin of the music legend Elvis, favors it. Polls show Presley lagging Reeves.

Without expansion of Medicaid, people who have low incomes are often left to decide between forgoing insurance and purchasing a policy through the Affordable Care Act marketplace if they cannot get insurance through employment. Even if they qualify for subsidized marketplace plans, they may face high deductibles or copayments for visits, health experts said. That often means going to the doctor only when sick. Preventive care becomes a luxury.

“You save your health care dollars for when you are sick or your kids are sick,” said Thompson, of the American Cancer Society.

But regular medical care can make all the difference with cervical cancer. Pap tests have long helped detect abnormal cervical cells that could turn malignant. Brawley said the test is “one of the best” cancer screening tests because of its accuracy.

In 2006, vaccines to prevent cervical cancer were first approved by the FDA. The vaccines guard against the common sexually transmitted infection called the human papillomavirus, which causes nearly all cervical cancers. The HPV vaccine is most effective when administered before a person has become sexually active; the federal recommendation is to get the shots by age 12.

Only a handful of places in the U.S. — including Hawaii, Rhode Island, Virginia, Puerto Rico, and the District of Columbia — require the vaccines to attend school. California has pending legislation that initially would have required that middle schoolers get the shots, but the bill has since been watered down to recommend them instead.

Mississippi does not require the vaccine, and the state has had the lowest share of fully vaccinated teens by a large margin for years. Fewer than 39% of teens there were up to date on HPV vaccination as of 2022, according to the CDC, compared with an estimated 63% nationally.

Thompson said she thinks many parents are hesitant to have their children vaccinated because they believe it would encourage sexual activity.

“This is an anti-cancer vaccine,” Thompson said.

Krista Guynes, director of the women’s health program at the Mississippi State Department of Health, said the state has several efforts underway to better inform women about the need for screening. It also has clinics for uninsured women. In partnership with the National Cancer Institute and University of Mississippi Medical Center, she said, the health department is conducting a study to evaluate risk and look for new biomarkers in women undergoing screening for cervical cancer.

As for Jones, she considers herself lucky to have survived stage 3 cancer.

“I would just like to say to every woman, ‘Get the vaccine.’ The vaccine will make the difference, so they won’t have to be told, ‘I’m sorry, you have cancer.’”

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).

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.

Credits

Francis Ying
Audio producer

Stephanie Stapleton
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ ‘What the Health?’ on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

USE OUR CONTENT

This story can be republished for free (details).

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.

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.

Panelists

Emmarie Huetteman
KFF Health News

@emmarieDC

Read Emmarie's stories

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.

Credits

Zach Dyer
Senior Audio Producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

USE OUR CONTENT

This story can be republished for free (details).

Tras una cirugía de emergencia para extirpar el tumor, junto con sus ovarios, útero, trompas de Falopio y apéndice, Hughes contó que vio una publicación en Instagram en la que una mujer con cáncer uterino relacionaba su condición con alisadores químicos para el cabello.

“Casi me desmayo”, dijo desde su casa en Smyrna, Georgia.

Cuando tenía unos 4 años, su madre comenzó a aplicarle un alisador químico, o “relajante”, en el cabello cada seis u ocho semanas. “Quemaba y olía terrible”, recordó Hughes. “Pero era parte de nuestra rutina para ‘lidiar con mi cabello'”.

La rutina continuó hasta que fue a la universidad y conoció a otras mujeres negras que llevaban el cabello de forma natural. Pronto, Hughes dejó de usar alisadores.

Las presiones sociales y económicas han llevado durante mucho tiempo a las niñas y mujeres negras a alisar su cabello para cumplir con los estándares de belleza eurocéntricos. Pero los alisadores químicos tienen un olor desagradable, son costosos y a veces causan quemaduras dolorosas en el cuero cabelludo. Y ahora hay cada vez más evidencia de que podrían ser un riesgo para la salud.

Los alisadores pueden contener carcinógenos, como agentes liberadores de formaldehído, ftalatos y otros compuestos que alteran el sistema endócrino, según estudios de los Institutos Nacionales de Salud. Estas sustancias químicas pueden imitar las hormonas del cuerpo y se han vinculado con cánceres de seno, útero y ovario, muestran investigaciones.

Investigadores y médicos especializados en cáncer dicen que la aplicación frecuente y de por vida de alisadores químicos en el cabello y el cuero cabelludo de mujeres afroamericanas podría explicar por qué los cánceres relacionados con hormonas afectan de manera desproporcionada a mujeres negras en comparación con mujeres blancas.

“Lo que hay en estos productos es perjudicial”, dijo Tamarra James-Todd, profesora de epidemiología en la Escuela de Salud Pública T.H. Chan de Harvard, quien ha estudiado productos alisadores por los últimos 20 años.

James-Todd cree que los fabricantes, legisladores y médicos deberían advertir a los consumidores que los alisadores podrían causar cáncer y otros problemas de salud. Pero los reguladores han sido lentos en actuar, los médicos se han mostrado reacios a tomar la causa, y el racismo continúa dictando los estándares de moda que dificultan que las mujeres dejen los alisadores, productos tan adictivos que son conocidos como “crema adictiva” (“creamy crack”).

Michelle Obama alisó su cabello cuando Barack era presidente porque creía que los estadounidenses “no estaban preparados” para verla con trenzas, dijo la ex primera dama después de dejar la Casa Blanca. El ejército de los Estados Unidos todavía prohibía estilos populares de cabello negro, como rastas y trenzas, mientras el primer presidente negro del país estaba en el cargo.

En 2019, California se convirtió en el primer estado de casi 20 en prohibir la discriminación basada en el cabello. El año pasado, la Cámara de Representantes de los Estados Unidos aprobó una legislación similar, conocida como la Ley CROWN (Creating a Respectful and Open World of Natural Hair). Sin embargo, el proyecto de ley fracasó en el Senado.

La necesidad de legislación destaca los desafíos que enfrentan las niñas y mujeres negras en la escuela y en el lugar de trabajo.

“Tienes que elegir tus batallas”, dijo Ryland Gore, cirujana oncológica con sede en Atlanta. Gore informa a sus pacientes con cáncer de mama sobre el mayor riesgo de cáncer debido a los alisadores. A pesar de su conocimiento, Gore continúa usando alisadores químicos en su propio cabello, como lo ha hecho desde que tenía unos 7 años.

“Tu cabello cuenta una historia”, dijo.

En las conversaciones con sus pacientes, Gore a veces también habla sobre cómo las mujeres afroamericanas solían tejer mensajes en sus trenzas sobre la ruta a seguir en el Underground Railroad mientras buscaban la libertad de la esclavitud.

“Es simplemente una discusión profunda”, que abarca cultura, historia e investigación sobre las prácticas de estilo de peinados actuales, dijo. “Los datos están ahí fuera. Por lo tanto, se les debe advertir a los pacientes, y luego pueden tomar una decisión”.

La primera pista de una conexión entre los productos para el cabello y problemas de salud surgió en la década de 1990. Los médicos comenzaron a ver signos de madurez sexual en bebés y niñas negras que desarrollaban senos y vello púbico después de usar champús que contenían estrógeno o extracto placentario. Cuando las niñas dejaban de usar el champú, el desarrollo del cabello y los senos retrocedían.

Desde entonces, James-Todd y otros investigadores han vinculado compuestos químicos en productos para el cabello con una variedad de problemas de salud más prevalentes entre las mujeres negras, desde la pubertad temprana hasta el parto prematuro, la obesidad y la diabetes.

En los últimos años, los investigadores se han enfocado en una posible conexión entre los alisadores químicos y los cánceres relacionados con hormonas, como el que desarrolló Hughes, que tienden a ser más agresivos y mortales en las mujeres negras.

Un estudio de 2017 encontró que las mujeres blancas que usaban alisadores químicos tenían casi el doble de probabilidades de desarrollar cáncer de seno que aquellas que no los usaban. Debido a que la gran mayoría de las participantes negras del estudio usaban alisadores, los investigadores no pudieron probar efectivamente la asociación en mujeres negras, según afirmó la autora principal, Adana Llanos, profesora asociada de epidemiología en la Escuela de Salud Pública Mailman de la Universidad de Columbia.

Los investigadores lo probaron en 2020.

El llamado Sister Study (Estudio de las Hermanas), una importante investigación del Instituto Nacional de Ciencias de la Salud Ambiental sobre las causas del cáncer de mama y enfermedades relacionadas, hizo el seguimiento de 50,000 mujeres estadounidenses cuyas hermanas habían sido diagnosticadas con cáncer de mama y que estaban libres de cáncer cuando se inscribieron. Independientemente de la raza, las mujeres que informaron haber usado alisadores en el año anterior tenían un 18% más de probabilidades de ser diagnosticadas con cáncer de mama. Aquellas que usaron alisadores al menos cada cinco a ocho semanas tenían un 31% más de riesgo de ese cáncer.

Casi el 75% de las hermanas negras usaron alisadores en el año anterior, en comparación con solo el 3% de las hermanas blancas no hispanas. Tres cuartas partes de las mujeres negras también informaron haber usado alisadores cuando eran adolescentes, y el uso frecuente de alisadores químicos durante la adolescencia aumentó el riesgo de cáncer de mama premenopáusico.

En 2021, un análisis de los datos del Sister Study mostró que las hermanas que usaban frecuentemente alisadores o productos para el alisado tenían el doble de riesgo de cáncer de ovario. Otro análisis, en 2022, encontró que el uso frecuente aumentaba en más del doble el riesgo de cáncer de útero.

Después de que los investigadores descubrieron la relación con el cáncer de útero, algunos pidieron cambios en las políticas y otras medidas para reducir la exposición a los alisadores.

“Es hora de intervenir”, escribió Llanos y sus colegas en un editorial que acompañó el análisis del cáncer de útero. Aunque reconocen la necesidad de más investigaciones, lanzaron un “llamado a la acción”.

Nadie puede afirmar que el uso de alisadores permanentes causará cáncer, dijo Llanos en una entrevista. “Así no funciona el cáncer”, dijo, señalando que algunos fumadores nunca desarrollan cáncer de pulmón, a pesar de que el tabaquismo es un factor de riesgo conocido.

El corpus de investigación sobre los alisadores para el cabello y el cáncer es más limitado, dijo Llanos, quien dejó de usar alisadores químicos hace 15 años. Pero preguntó retóricamente: “¿Necesitamos investigar durante otros 50 años para saber que los alisadores químicos son perjudiciales?”.

Charlotte Gamble, ginecóloga oncológica cuya práctica en Washington, D.C., incluye a mujeres negras con cáncer de útero y ovario, dijo que ella y sus colegas ven los hallazgos del estudio sobre el cáncer de útero como dignos de una exploración más profunda, pero aún no deberían discutirse con los pacientes.

“Aún tengo mis dudas”, dijo. “Se necesita mucha más información”.

Mientras tanto, James-Todd y otros investigadores creen que han construido un sólido corpus de evidencia.

“Hay suficientes cosas que sí sabemos como para comenzar a tomar medidas, desarrollar intervenciones, proporcionar información útil a los médicos, pacientes y al público en general”, dijo Traci Bethea, profesora asistente en la Oficina de Salud de las Minorías e Investigación sobre Disparidades en Salud de la Universidad de Georgetown.

La responsabilidad de regular los productos de cuidado personal, incluidos los alisadores químicos para el cabello y las tinturas, que también se han vinculado con cánceres relacionados con hormonas, recae en la Administración de Alimentos y Medicamentos (FDA).

Sin embargo, la FDA no somete los productos de cuidado personal al mismo proceso de aprobación que utiliza para alimentos y medicamentos. La FDA solo restringe 11 categorías de productos químicos utilizados en cosméticos, mientras que las preocupaciones sobre los efectos en la salud han llevado a la Unión Europea a restringir al menos 2,400 sustancias.

En marzo, las representantes Ayanna Pressley (demócrata de Massachusetts) y Shontel Brown (demócrata de Ohio) pidieron a la FDA que investigara la posible amenaza para la salud que representan los alisadores químicos. Un representante de la FDA dijo que la agencia lo investigaría.

Los peinados naturales están resurgiendo entre las niñas y mujeres negras, pero muchas siguen dependiendo de la “crema adictiva”, según Dede Teteh, profesora asistente de salud pública en la Universidad Chapman.

Teteh tuvo su primer alisado permanente a los 8 años y ha luchado por dejar los alisadores de adulta. Ahora usa trenzas estilo “locs”. Hace poco, consideró alisarse químicamente el cabello para una entrevista de trabajo académica porque no quería que su cabello “fuera un obstáculo” cuando se presentara ante profesores blancos.

Teteh lideró un proyecto de investigación sobre la salud del cabello llamado “The Cost of Beauty” (El Costo de la Belleza) publicado en 2017. Ella y su equipo entrevistaron a 91 mujeres negras en el sur de California. Algunas reaccionaron de manera “combativa” ante la idea de dejar los alisadores y afirmaron que “todo puede causar cáncer”.

Sus reacciones reflejan los desafíos que enfrentan las mujeres negras en Estados Unidos, dijo Teteh.

“No es que la gente no quiera escuchar información relacionada con su salud”, dijo. “Pero quieren que la información se comparta de manera empática con la difícil situación de ser negra aquí en los Estados Unidos”.

Kara Nelson de KFF Health News colaboró con este informe.

Este artículo fue producido por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la  California Health Care Foundation. 

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

USE OUR CONTENT

This story can be republished for free (details).

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.

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.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Shefali Luthra
The 19th

@shefalil

Read Shefali's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

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.

Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ ‘What the Health?’ on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

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

USE OUR CONTENT

This story can be republished for free (details).

On July 1, Idaho became the only state without a legal requirement or specialized committee to review maternal deaths related to pregnancy.

The change comes after state lawmakers, in the midst of a national upsurge in maternal deaths, decided not to extend a sunset date for the panel set in 2019, when they established the state’s Maternal Mortality Review Committee, or MMRC.

The committee was composed of a family medicine physician, an OB-GYN, a midwife, a coroner, and a social worker, in addition to others who track deaths in Idaho that occur from pregnancy-related complications. Wyoming studies its maternal deaths through a shared committee with Utah. All other states, as well as Washington, D.C., New York City, Philadelphia, and Puerto Rico, have an MMRC, according to the Guttmacher Institute, a reproductive rights research group.

A majority of the state committees were established within the past decade as federal officials scrambled to understand state and local data to address gaps in maternal care. The committees review deaths that occur within a year of pregnancy and identify trends, share findings, and suggest policy changes.

Liz Woodruff, executive director of the Idaho Academy of Family Physicians, said she was “incredibly disappointed” by the legislature’s decision to scuttle the committee. “It seems relevant that the state of Idaho supports a committee that works toward preventing the deaths of pregnant women,” she said. “This should be easy.”

The committee disbanded despite a high rate of maternal mortality in the United States that exceeds those of other high-income countries. The U.S. recorded 23.8 maternal deaths per 100,000 live births in 2020, compared with 8.4 in Canada and 3.6 in Germany, according to the Organization for Economic Cooperation and Development and the Centers for Disease Control and Prevention.

And the U.S. rate is sharply rising. In March, a few weeks before Idaho lawmakers adjourned their 2023 session, the CDC released data that showed the maternal mortality rate in the U.S. climbed in 2021 to 32.9 deaths per 100,000 live births.

Idaho has a particularly acute problem. Its pregnancy-related mortality ratio was 41.8 pregnancy-related deaths per 100,000 live births in 2020, according to the Maternal Mortality Review Committee report from that year.

Hillarie Hagen of Idaho Voices for Children, a nonprofit focused on low- and moderate-income families, said that the committee used the Idaho-specific data to do deep-dive analyses and that an information void would be left by shuttering the board.

“How do we make decisions and policy decisions to improve the health of mothers and their babies if we’re not tracking the data?” she asked. “From our perspective, having consistent data and trends shown over time helps make more sound policy decisions.”

The decision to disband the board came as two hospitals that serve rural areas announced they would stop providing services for expectant mothers. One of the hospitals cited trouble recruiting and retaining OB-GYNs after the state last summer enacted one of the strictest abortion bans in the country.

The committee, tasked with investigating deaths both individually and collectively, found that almost half of the maternal deaths in Idaho in 2020 occurred after delivery.

Amelia Huntsberger, an OB-GYN and a member of the committee, noted also that patients covered by Medicaid during pregnancy are overrepresented in maternal death rates, which led the panel to recommend expansion of postpartum Medicaid coverage to 12 months rather than the current 60 days.

Huntsberger made national headlines this year when she announced plans to leave both her job and the state, citing the state’s abortion ban and the move to dissolve the MMRC.

But in their legislative session, Idaho lawmakers decided not to advance a bill that would have embraced the committee’s recommendation to expand postpartum Medicaid coverage.

The legislation creating the review committee included a “sunset clause” to dissolve the committee on July 1, 2023. Following a contentious session of the Health and Welfare Committee of the Idaho House of Representatives in February, House Bill 81, which would have renewed the committee, failed to advance.

Republican state Rep. Dori Healey said she sponsored the bill because of her work as an advanced practice registered nurse when the legislature is out of session. “For me, being in the health care field, I think it’s always important to understand the why behind anything. Why is this happening? What can we do better?” Healey said. “I feel like in health care we can only improve with knowledge.”

Healey said she hadn’t anticipated the strong opposition to the bill. In declining to advance it, lawmakers cited costs of running the panel, although some, like Huntsberger, say its operation was covered by a federal grant.

The MMRC was funded by the federal Title V Maternal and Child Health Block Grant program, aimed at improving the health of mothers, infants, and children. Idaho has received more than $3 million annually in Title V funds in recent years, according to statistics cited by Huntsberger.

The MMRC, whose members say annual operation costs stand at about $15,000, was deemed budget-neutral, running at no cost to the state.

In an interview with KFF Health News, Marco Erickson, vice chair of the Health and Welfare Committee, said Idaho’s Republican Party has been focused on reducing government spending. He said the same maternal data could be adequately culled through epidemiology reports already published by the Department of Health and Welfare.

“Anytime that there is a death of a mother and child, there is value in evaluating why it occurred,” Erickson said. “The whole committee saw the importance but saw there was another way to do it. It wasn’t that they didn’t think it was valuable.”

Erickson, who previously oversaw elements of maternal and child health in his role as a health program manager for Nevada’s Division of Public and Behavioral Health, said that information could become siloed in government, but it was worthwhile to improve existing bodies, rather than creating a committee anew.

“I think it could be covered elsewhere, and if it’s not being done, they need to make a loud voice to cover it in the existing programs,” he said. “We’re happy to sit down together to find a solution that works.”

The lobbying group Idaho Freedom Foundation celebrated the end of the committee, contending it was a “vehicle to promote more government intervention in health care,” and citing the group’s recommendation to extend Medicaid coverage to mothers for 12 months postpartum.

Elke Shaw-Tulloch, public health administrator at the Department of Health and Welfare, said the department would “continue to collect raw data on maternal deaths and gather as much data as possible through limited, existing sources.” But, she said, it will not have the ability to compel reporting on cases or convene committee members to investigate deaths.

“We are currently assessing what actions we can take and working with stakeholders to address solutions moving forward,” she said.

A group to do so has not yet convened since the legislative session ended in April, although stakeholders say they will focus on bringing another bill before the Idaho Legislature to reinstitute the committee in the 2024 session.

Stacy Seyb, a maternal-fetal specialist who grew up in rural western Kansas and chaired the committee until its dissolution, said that supporting medical providers in more rural areas was part of his lifelong mission and that the work won’t necessarily stop.

“We knew once it didn’t get out of committee that ‘Oh, well, we’re sunk,’” Seyb said. “I know one thing we want to do is collect as much information as we can over the year. Whether it will get reviewed or not, I don’t know.”

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).

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.

USE OUR CONTENT

This story can be republished for free (details).