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.

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

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

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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.

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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.

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The idea seems simple enough.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

It’s an understatement to say a lot has happened in the year since the Supreme Court overturned the nationwide right to abortion in its decision in Dobbs v. Jackson Women’s Health Organization.

But while many of the subsequent legislative and court actions to either ban or preserve access to abortion were predicted, the decision has had other, sometimes far-reaching consequences.

In this special episode of KFF Health News’ “What the Health?” four reporters who have closely covered the issue — host and KFF Health News chief Washington correspondent Julie Rovner, Alice Miranda Ollstein of Politico, Shefali Luthra of The 19th, and Sandhya Raman of CQ Roll Call — try to condense all that has happened since the nationwide right to abortion was revoked.

Panelists

Shefali Luthra
The 19th

@shefalil

Read Shefali's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Among the takeaways from this week’s episode:

• In the Dobbs ruling last year, some justices said the decision would settle the issue of abortion in the courts. That has turned out not to be the case; jurisprudence about abortion access continues, largely in state courts.
• President Joe Biden has issued executive orders to preserve access to reproductive health care, including recently by directing federal agencies to find ways to increase access to contraception. But not all of the administration’s calls have translated into federal action, and some progressive groups are disappointed the Biden administration has not gone further in protecting abortion care.
• Perhaps the most significant action in Congress has been Sen. Tommy Tuberville (R-Ala.) blocking Pentagon nominations over a Defense Department policy supporting the ability of troops and their dependents to travel for abortion care. So far he has held up more than 250 nominations amid accusations that he is undermining national security.
• After Dobbs, there was anxiety in Democratic-run states that abortion restrictions would seep across state borders and lead to interstate prosecutions targeting abortion care. Those concerns have, so far, not materialized. Meanwhile, some states are attempting more roundabout ways to ban abortion, such as requiring all abortions be performed in hospitals when there are no hospitals in the state that perform the procedure.
• Polls show voters are now more supportive of abortion access than they have been in many years; more opposed to second-trimester bans; and more likely to identify abortion as a key priority when they vote. Health care providers are finding themselves pressed into advocacy or choosing to move to other states, potentially creating long-term care deserts.
• Plus, our panel of reporters reflects on one thing that will stick with them from their experiences covering abortion in the first year after the overturning of Roe v. Wade.

Also this week, Rovner interviews Alina Salganicoff, senior vice president and director for Women’s Health Policy at KFF. For KFF research and resources on reproductive health, click here.

Plus, for “extra credit,” the panelists suggest the favorite abortion-related stories they wrote in the past year they think you should read, too:

Julie Rovner: KFF Health News’ “Three Things About the Abortion Debate That Many People Get Wrong,” by Julie Rovner.

Shefali Luthra: The 19th’s “93 Days: The Summer America Lost Roe v. Wade,” by Shefali Luthra.

Alice Miranda Ollstein: Politico’s “Kansas’ Abortion Vote Kicks Off New Post-Roe Era,” by Alice Miranda Ollstein.

Sandhya Raman: Roll Call’s “Conservatives Use Abortion Strategies in Fight Over Trans Care,” by Sandhya Raman.

click to open the transcript

Transcript: A Year Without Roe

KFF Health News’ ‘What the Health?’

Episode Title: A Year Without Roe

Episode Number: 304

Published: June 29, 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 at KFF Health News. We’re back in Washington this week, joined by some of the best and smartest health reporters. We’re taping this week on Thursday, June 29, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Shefali Luthra of The 19th.

Luthra: Hello.

Rovner: And Sandhya Raman of CQ Roll Call.

Raman: Good morning.

Rovner: So after last week’s special with the current and two former Health and Human Services secretaries, which I hope you all enjoyed, we have another special episode for you this week, one year after Roe fell. Saturday, June 24, marked a year since the Supreme Court overturned the nationwide right to abortion with its decision in Dobbs v. Jackson Women’s Health Organization. We’re going to start with an interview with my KFF colleague Alina Salganicoff, all about the work KFF has done on this topic over the last year. Spoiler alert: It’s been a lot. Then we’ll have our regular panel discussion. So, without further ado, here is the interview. I am pleased to welcome to the podcast my colleague Alina Salganicoff, senior vice president and director of Women’s Health Policy here at KFF. Alina, welcome to “What the Health?”

Alina Salganicoff: Thank you. Delighted to be here.

Rovner: So it’s an understatement to say that a lot has happened on the women’s health front in the year since the Supreme Court decided Dobbs. But I think your group has produced an enormous volume of information that a lot of journalists and researchers have already used to help paint a picture of those changes. For those who haven’t taken a stroll through the resources available at kff.org/womens-health-policy, give us an idea of what can be found there.

Salganicoff: Well, we have been collecting a tremendous amount of information. Most recently we released a survey of OB-GYNs on their experiences pre- and post-Dobbs and really found some very, I think, alarming findings in terms of the impact of Dobbs on clinical care. We’re also tracking abortion coverage, as well as tracking the availability of abortion at the state level, and we do that routinely. We have a litigation tracker that tracks litigation at the federal and the state level, and that’s just been a very active part of our portfolio and analysis as well. And that’s just an example of a few things that we have going on. But we also have an abortion dashboard, where we provide up-to-date information and analysis and data, not only for work that KFF has been doing, but also synthesis and analysis of other work that’s going on in the field.

Rovner: This is information that, I will confess, a lot of reporters have been using over the course of the year. So thank you for that. How would you describe the state of abortion rights in the U.S. a year post the overturn of Roe?

Salganicoff: Well, that’s a huge question. The answer, of course, truly depends on where you live. In states where abortion is banned, access has been all but eliminated, except for in the rarest circumstances. And honestly, in most cases, even women who qualify for those exceptions have nowhere to go or aren’t being served. In many other states, there are restrictions, particularly those with gestational bans that restrict where people seeking abortion can go. And even in states that uphold abortion rights, people may still need to travel far for abortions, even if … and maybe not even have access to telehealth abortions where they live.

Rovner: So I know this is an even harder question. Can you take 30 seconds to tell us what you think the biggest difference has been compared to a year ago, or I guess it’s now a year and a week ago?

Salganicoff: Well, that is a big ask, Julie. But I will say, for those who live in states where abortion is banned or greatly restricted, this is where you really see the biggest change. And this has, as we anticipated, disproportionately affected pregnant people of color, those who are young and low-income. But also, abortion bans have made it more dangerous for pregnant women and others to have a baby or to get needed medical care. Those seeking abortions have been the hardest hit, but they’re not the only group. And I think also that there’s growing awareness and acceptance that abortion cannot be relegated to the shadows of health care or banned without having broad repercussions on other aspects of health care. Maternity care, emergency care, treatment for cancer and autoimmune disease have all been impacted as well.

Rovner: Yeah, I think that’s been a big revelation for a lot of people, that lots of pregnant women who worked hard to get pregnant and are trying to have babies but have problems in their pregnancy are caught in some of these restrictions, even if unintentionally.

Salganicoff: Absolutely. And I think that the issue of the large disparities we have in this nation on maternal mortality really has brought this issue much more into the limelight, and really seeing how abortion is going to be connected to maternal mortality in this country.

Rovner: So, like me, you’ve been doing this work for a long time now. What surprised you most about the fallout from a year without Roe?

Salganicoff: Right. Well, when Roe fell, I think many of us anticipated in a short time half the states would ban abortion. And while that has happened in 14 states, legal challenges, along with ballot initiatives and elections, have made it clear that there is a will to maintain abortion access in many places where we didn’t think that was possible. Kansas, Kentucky, Michigan, they’re all great examples of that, but they’re not the only states. The other, I think, has been the issue of the FDA and mifepristone, where the Supreme Court has temporarily blocked the lower-court ruling that would have essentially overturned the FDA’s scientific assessment of the safety and effectiveness of the drug, as well as the guardrails that are necessary for dispensing. But that case is not resolved. And then, finally, we have the issue of the Comstock Act, which is also related to that, which is an anti-vice law from 1873 that holds the potential, if enforced, to block the distribution of not only mifepristone but potentially anything that’s used with the intent to perform an abortion. That doesn’t mean just mailing the pill from the clinician to the patient, but also distributing the medication. And it’s going to affect states across the country, not just those where abortion is banned.

Rovner: So lots more to watch. One of your reports that surprised me was how many abortion restrictions there are in states even where abortion isn’t banned, and what we think of as pretty blue, like Massachusetts and Maryland. What kind of restrictions still exist in places that are otherwise considered abortion-destination states?

Salganicoff: Yes, that’s some work that we’ve recently done some analysis on. Yeah. Even if abortion is not legally banned, states can establish regulations and other requirements that effectively restrict access. In states like Maryland and Massachusetts, those are parental consent, or notification, laws. But there are other requirements such as waiting periods, ultrasound requirements, as well as laws that only permit those who have medical degrees to perform or dispense medication abortion pills, even though we know that advanced-practice clinicians, like physician assistants or nurse-midwives, can safely perform these procedures. That makes it harder for people, even in those states, as well as those who travel to get access to abortion.

Rovner: So, presumably, abortion rights advocates have work to do in many states, not just ones with bans.

Salganicoff: That’s right.

Rovner: I think another thing that came as a surprise to me, and we’ve already mentioned this briefly, is how health care for women that is not abortion has been affected. What are doctors telling you?

Salganicoff: Yeah. We recently did a survey of OB-GYNs, and I’ve also been out in the field in several conferences and meetings. And, you know, there’s been a lot of attention recently to the issue of miscarriage management, but also dealing with pregnancy in general and possibly also in the context of cancer care, care for chronic diseases, and emergency care. For example, there have been concerns about access to drugs like methotrexate, which is an abortifacient. It’s used to treat ectopic pregnancies, but it’s also used to treat cancer and autoimmune disease. And we’ve been seeing and hearing at least anecdotal reports about difficulties in accessing that drug. Our OB-GYN survey finds that clinicians are really worried about maternal mortality, their ability to provide care that meets the standards of care — medical care and the norms — and also to provide miscarriage care. That should worry not only those who can get pregnant, but many others as well.

Rovner: So what are you working on now that we should keep an eye out for?

Salganicoff: Well, of course, we’re laser-focused on tracking and analyzing the broader implications of the Dobbs ruling on abortion access. But we’re also focused on contraceptive access as well. And I think that hasn’t gotten nearly as much attention. There’s the issue of how Title X, which is the federal family planning program, is going to proceed in light of a federal decision to withhold the Title X grants for Oklahoma and Tennessee, states that are refusing to follow the requirement that Title X patients be given nondirective pregnancy counseling and referral. So this is an area that I think is going to get some attention on the Hill and in the courts, and I think other states are watching that. The other issue … are developments around emergency contraception and the real confusion that our polling has really documented about whether it’s legal and available. And we actually saw in our OB-GYN survey very low rates of physicians providing emergency contraception to their patients. And then finally, where all eyes are, of course, on the FDA for their decision about the over-the-counter status of an oral contraceptive pill. And we’re going to be looking at how that’s all going to roll out in the pharmacies, as well as whether there’s going to be an opportunity to provide insurance coverage for that newly available method.

Rovner: Lots more to come. I guess we’ll have to do this again next year. Alina Salganicoff, thank you so much for joining us.

Salganicoff: Thank you for inviting me. It’s been a pleasure.

Rovner: OK. We are back and I’m so pleased to have three of my favorite reproductive health specialists at the table today, who have spent a lot of the last year reporting from around the country and, in some cases, around the world. Alice, Shefali, Sandhya: Thank you all for being here. So I want to start with the people who are most affected by the Supreme Court’s action last year. What has happened to women seeking abortions since last year and women seeking other types of health care, too, for that matter?

Luthra: I think the data is pretty compelling, right? We can look at the WeCount numbers that just came out right before the anniversary. The number of recorded legal abortions has fallen quite precipitously. We have seen thousands fewer people get abortions. We’ve also seen dramatic increases in people traveling for care, going to Florida, to Illinois, to North Carolina, among many others. And what those numbers don’t always tell us is how difficult that journey is, how expensive it is. I think a lot about this study from when SB 8, the Texas six-week abortion ban, took effect, and they found there that some of the people who were traveling out of state, it took them so much money they couldn’t afford food for a week and then they ate whatever they could; they couldn’t afford dog food because it was just that difficult of a trip. And what we’re seeing is just people are, in some cases, accessing health care and other cases they are not. And it is becoming a lot harder and in some cases life-threatening. We’re all hearing the stories about people experiencing pregnancy complications and not being able to get timely care flying across several states while afraid they could go into premature labor on the plane.

Ollstein: Everything Shefali said is true. I also think that we need to put our critical hats on when we look at some of this early, preliminary data that’s coming out. It just takes time to get very solid, reliable data. And while the WeCount report is helpful, it has a lot of holes in it, and it makes estimates, and it doesn’t include people who are obtaining mifepristone and self-managing their abortions outside the medical system. You know, it doesn’t include data from certain providers and certain states. And so I think it will just take time to get a really accurate picture of what’s going on. We are sort of cobbling it together. You know, we have providers in blue states reporting how much increase they’re seeing in people coming in. We get some data from groups like Aid Access that mail the pills about the demand they are seeing. But there are a lot of people who aren’t going to show up in any of those counts. And we just sort of don’t know what’s happening to that, other than anecdotally, based on our reporting on the ground. And so I think, yes, there are a lot of people obtaining pills, there are a lot of people traveling, and there are a lot of people for whom neither of those are possible options and that they are going forward with pregnancies that they otherwise would have terminated.

Rovner: I think one of my biggest takeaways from the last year is the broader understanding of how common pregnancy complications are. I think a lot of people did not expect to see so many women with wanted pregnancies have difficulty getting care that they needed. I think people didn’t realize how common pregnancy complications are; they affect about 8% of pregnancies, or that’s 1 in every 12.5. That is a lot of people. And of course, as we all know, maternal mortality and morbidity in this country is embarrassingly high compared to other industrialized countries. I think people, particularly in the anti-abortion movement, used to talk about, you know, these serious pregnancy complications as being extremely rare. They just aren’t. I think we’re finally starting to see people talk about that.

Raman: You know, the past year I’ve seen so much more in the public consciousness about miscarriage management, which is something that we’ve all covered in the past, but it’s not something that I think has been talked about as much, brought up as much, some of the complications there. And especially when the treatment for miscarriages in many cases is very similar to what is done for abortions, and just some of the difficulties that different folks have been experiencing being able to get that care for miscarriages even if they are not seeking an abortion and it’s a wanted pregnancy. I think that has really come to light a lot as well.

Rovner: So the Supreme Court majority, I think in their majority opinion, sort of said they hoped that this would be the last word on abortion for a while. It obviously was not. So let let’s do a quick review of what’s happened in the courts since Dobbs was decided last year. I guess the big one that we’re waiting on is the case of mifepristone, the abortion pill, right?

Ollstein: That’s the main federal one, although there are some other ones. But as we all sort of knew at the time, this is really a state-by-state fight. And the state-level cases are still continuing to play out. You know, just recently there were some major rulings, in Wyoming, in South Carolina. We’re waiting on Iowa. There was this declaration by the justices that overturned Roe v. Wade that this would sort of “settle the issue,” quote-unquote. And it is extremely unsettled.

Rovner: It is. And of course we should mention that a lot of these state cases are  because even though the Supreme Court ruled that the federal Constitution doesn’t have any right to abortion, a lot of states say that their state constitutions do.

Luthra: And the South Carolina one is particularly interesting because, in January, we had the state Supreme Court say that their constitution did not allow for a six-week ban. And just this week, that same Supreme Court, with one change in membership, heard almost the same version, a slightly different six-week ban, and there is a good chance they uphold it, which really speaks to not only the role of the courts in dictating abortion rights on a state-by-state level, but also the role of individual changes in the makeup of those courts and how just this one really small thing, like someone aging out of being on the state Supreme Court, can change access for thousands of people.

Ollstein: And state constitutions, even though they don’t have the word “abortion,” often are way more protective of abortion than people might have predicted. To Shefali’s point, that goes to which judges are interpreting it. But also you have some of these rulings in states we think of as very far to the right that are surprisingly protective of abortion. And I think that fight is continuing to play out. And I’m sure we’re going to get into later the attempts to insert language into the state constitutions that’s explicitly protective of abortion.

Luthra: One element on the federal courts that I think is worth flagging that is relevant to this mifepristone case as well, right — which, to recap, is currently at the 5th Circuit; they are debating whether to take mifepristone off the market, to impose more restrictions on how it’s prescribed. This will probably end up at the Supreme Court again, maybe within the year. But dormant in that case, and something that a lot of scholars have talked about, is this new legal questioning around the Comstock Act, this very old anti-obscenity law used in the past to censor Walt Whitman, to ban “Ulysses,” all sorts of crazy things, and is now being argued as a legal vehicle to end access not only to mifepristone, but to anything that can be mailed for an abortion. And scholars are quite critical of these arguments, but there is a reasonable chance that they come up again and again, and that, given the right case, the right lawyers, the right justices, that a case based on this reading of the Comstock Act could be used to argue for and potentially even implement a national abortion ban through the federal courts without using Congress.

Rovner: Yeah. Mary Ziegler, who’s been on this podcast, who’s one of the top abortion history scholars and a law professor, has been talking about this a lot. You know, everybody is sort of talking about whether or not they can implement or pass a national abortion ban. She says, depending on how they interpret Comstock, there already is, in theory, a national abortion ban. And it wouldn’t just be pills. It would be anything that’s mailed that really has to do with abortion, right?

Ollstein: Yeah. I also just want to go back to the mifepristone case and note that there’s not just one; there’s, like, five — five that I that I know of, maybe even more. The main one that could decide the federal regulation at the FDA level of mifepristone; there are several groups of states saying, Hey, if there’s a federal ban, it shouldn’t apply to us; and then there are two lawsuits that are attempting to challenge state-level bans on the drugs as violating the rights either of doctors and patients or of the pharmaceutical companies. So there are so many different permutations and ways this could go. It’s not just, you know, an up or down vote.

Rovner: Yeah, it’s definitely a full-employment-for-lawyers decision.

Ollstein: And health care reporters.

Rovner: And health care reporters. Well, I want to talk about the administration a little bit. President Biden has been both praised by abortion rights supporters for his administration’s support of abortion rights and chided for his personal reluctance to talk about an issue he is clearly not very comfortable with. What has the administration done in this arena, besides everybody paying attention to what President Biden does or doesn’t say himself?

Raman: I would boil down what I guess the president has done has been the three executive orders that he’s done since the Dobbs decision. So we had two last year that were more focused on abortion and things that he was asking various agencies and departments to do there. And then most recently, last week, we had one that was focused on birth control and contraception, broadening accessibility there. And I think the trick here is that all of these points within the executive order are calling on the agencies and departments to consider doing this, consider doing that. And while some of those things have come to fruition — we’ve had, you know, the VA [Department of Veterans Affairs] and the Department of Defense have changed their policies to kind of make access easier — we’ve also had certain things that have been outlined there not come out. We had in I think the first or second one last year that they had asked CMS [the Centers for Medicare & Medicaid Services] to find ways to make it so that there could be, you know, an 1115 waiver for Medicaid programs to cover out-of-state patients. And states haven’t really jumped at that or figured out a way for that to work out. So it’s a mixed bag.

Luthra: I think another sort of interesting element — for everything the administration has done, tried to expand access to mifepristone in pharmacies, tried to use EMTALA [the Emergency Medical Treatment and Labor Act], the emergency medication law, to help people get abortions when they are needed for life-threatening situations in hospitals, it feels like there is always a Republican response that is quite effective in, if not neutering, then quite weakening that. And we’ve seen that with the Texas attorney general, potentially someday soon former attorney general, suing to challenge the EMTALA regs that we’ve seen that in the —

Rovner: He’s being impeached, for those of you who have not kept up — that the Texas attorney general. So we’re waiting for the trial of that impeachment.

Luthra: Yeah, we’ve seen like Alice’s really great reporting on the efforts by Republican attorneys general, including in blue states, to limit access to mifepristone in pharmacies, right, sort of going directly against what the administration is trying to do and what it sort of gets to is: For everything that they try, it is hard to see in reality how much of an impact it will make and can make on the ground in expanding access to abortion.

Ollstein: Oh, yes. And we should say that there are, you know, progressive advocacy groups who are disappointed and think the administration has not tried everything it could be trying. And so, you know, the administration has been touting everything it’s doing. And like we have said, some of it has made an impact, particularly defending these policies in court and stopping them from being struck down. But there is a lot of frustration. You know, I’ve heard specific calls for more to be done through Medicaid, more to be done in terms of exploring whether abortion providers could operate on federal land, even in red states. There’s just a lot of areas, and this administration is pretty cautious. And, you know, we can see, because of all the legal challenges, why that is. An adverse legal ruling could be damaging going forward. But, you know, I do want to note that there are pro-abortion rights advocacy groups who are not satisfied with the level of effort from the Biden administration so far.

Rovner: Frustrated, I think, is the accurate word there. Well, let us move to Congress because that’s relevant to what we were just talking about. As we have discussed on this podcast many times, Congress is pretty much gridlocked on all issues involving reproductive health. There are not 60 votes in the Senate for anything on either side, but there’s been some action in Congress the last year, right, Sandhya?

Raman: Yeah, I would say 1) historically, there’s rarely much movement on abortion policy in Congress. It’s just someone bringing something up a lot for messaging. But I think the main thing that that has had an effect is [Republican] Sen. [Tommy] Tuberville from Alabama has been holding up Pentagon nominations over the Department of Defense’s abortion policy, which allows service members who are stationed somewhere where abortion is not legal to be able to take off time and travel somewhere to get that abortion. And this has been holding up over 250 nominations so far. It’s been a big issue given that, I think, there have been folks from either side and former defense officials have said this is a matter of national security, that we’re not able to get this done over one person.

Rovner: This is a big deal that’s been kind of flying under the radar for two or three months now, right?

Ollstein: They’re at a total impasse.

Raman: Yeah, I think that the latest is mainly that, you know, Sen. [Joni] Ernst [R-Iowa] does want to have a vote on this when the NDAA goes to the Senate floor.

Rovner: The defense authorization — the annual defense authorization bill.

Raman: Right.

Rovner: Yes.

Raman: To kind of have a vote on that and try to get that. But they’re at an impasse right now. And it’s kind of unusual. I mean, it’s something that — people have held up nominations, but I think this in particular is a pretty interesting one.

Rovner: Yeah, I know the secretary of defense is very upset about it. It really is a matter of national security and they really haven’t been able to work this out. You know, we know, as we mentioned, Congress can’t sort of do anything. There is not a supermajority to either tighten federal abortion restrictions or loosen them. But one of the things that might have happened and that anti-abortion legislators talked about early in the year were things to better support pregnant women or pregnant women who’ve then had children, and trying to support those children. Even things like Title X, like contraception, Head Start, expanded Medicaid for maternal health for a year. We actually haven’t seen very much of that happening either, have we?

Ollstein: No, we have not. I will say we have in some states; some states that are very conservative have — they say it’s specifically because of the elimination of abortion access — moved to have more funding for moms and babies and even contraception. And so you have seen that. But no, at the federal level, it is running right into this anxiety about debt and spending and not wanting to open the pocketbooks on that front. I also think it’s interesting that House Republicans have not really used their majority to vote on an abortion ban. In a sense, it’s kind of a free vote for them because it won’t become law. And it’s just interesting and speaks to the tricky politics that they haven’t even done a symbolic vote. Meanwhile, you’ve had Senate Democrats do a bunch of symbolic votes to try to make Republicans uncomfortable with the issue. But again, these are all just sort of show votes that are not going to become law.

Rovner: Yeah, somebody should total up the show votes at some point over the last 10 years. I bet it would be a lot.

Raman: I will say that, you know, the one thing that I will acknowledge on a federal level is that, you know, when we had the omnibus last year, they did make the 12-month postpartum Medicaid pilot coverage permanent. And I think that will be a big thing, given that so many states have so quickly adopted the pilot of that. So that would see something that that there can be an effect, but —

Rovner: But it is still optional. States don’t have to — I mean right now —

Raman: It is still optional.

Rovner: Standard Medicaid cuts off new moms after 60 days, is that right?

Raman: Yeah, But I mean, it’s hard. I mean, I think it’s A) kind of what Alice said with the funding and the fact that we’re working with less than we had before. But also, if you look at the language of a lot of the bills that have been introduced that kind of focus on some of these things, you know, whether it’s different things for new moms — a lot of it has language that will polarize the other side. I think that if you see some of the packages and bills that have been put out by Republicans, there’s funding or redirecting resources for crisis pregnancy resource centers, which, you know, Democrats are not in favor of given that they don’t support abortion. And then we also have, I think, a lot of the Democrats’ bills might not specifically carve out certain things. I think that they “butt heads” …[unintelligible] … I think you have to kind of water it down, the language. And we haven’t really seen something that kind of can appeal to everyone kind of come forward, and also that doesn’t cost money. And finding that happy medium is very difficult.

Rovner: And ever was. Well, Congress hasn’t been able to do very much, but state legislatures have been really busy, right? I mean, and it’s more than just, you know, bans, working on different variations of bans. We’ve seen some very, sort of, creative ideas, right?

Luthra: It’s been fascinating to see what’s happening on the state level. One thread I actually thought of during Sandhya’s remarks was the expansion of crisis pregnancy centers, in particular in states with abortion bans, right? Putting more state funding to support them, which, for a reminder, they not only don’t support abortion; many of them don’t actually employ qualified medical personnel and are not bound by HIPAA [Health Insurance Portability and Accountability Act]. We have that lawsuit from this week where the woman said she went to a crisis pregnancy center, and they missed her ectopic pregnancy. So, quite dangerous. But beyond that, what’s really interesting is Republicans in state legislatures seem like they are really trying to figure out how to navigate these tricky abortion politics, and they’re not quite sure how to go about doing it, which is why we saw the six-week abortion ban pass in Florida and in South Carolina. And then we saw differences in other states, right? North Carolina did the 12-week ban, which is being litigated right now. And what clinics are actually more concerned about there is a requirement for two in-person visits separated by three days, which they say will just make the procedure unaffordable. We saw Nebraska do a 12-week ban as well, sort of concerned that six weeks appears too extreme now that voters are responding to abortion bans. And the other thing that is just really, really interesting is: We saw at the beginning of the year some pre-filing of bills around the fetal personhood movement, around ways to try and criminalize the morning-after pill or IUDs [intrauterine devices], trying to consider whether you make the person who gets an abortion liable herself. None of those have really taken off yet, and it seems that it’s because that is a bridge that, for many in the movement, is still too far — just this concern that then they would really have to say it is not just that we are trying to quote-unquote “protect the pregnant person,” but we actually think abortion is murder itself. And so I think that will be a really interesting battle within anti-abortion lawmakers, to see how that ends up in the coming years.

Rovner: And that’s a battle that goes back like a decade and a half now. They still aren’t quite there. I think the other thing that we saw a lot of that hasn’t really come to pass are bills to try to ban travel, to try to ban pregnant women from going to other states to obtain abortions, which strikes me as something — strikes many people as something that seems probably not constitutional, but not to say that they won’t try.

Ollstein: Yeah, I think we’ve seen Idaho go the furthest down this road. Missouri was also sort of exploring it, putting a toe in the water, but it never really went anywhere. But I totally agree, Julie. I think there was so much anxiety over this past year about red states trying to reach across their borders in different ways to police abortion, whether it’s suing doctors or trying to ban travel or obtaining people’s medical records or — there was just a lot of anxiety, and you saw that reflected in what blue states passed. Blue states passed a lot of protections to stop those sort of cross-border prosecutions. But we haven’t seen the cross-border prosecutions. That hasn’t really come to fruition yet and may or may not going forward. So it’s interesting because a lot of fears of what would happen when Roe fell have played out exactly as predicted and this is one that kind of hasn’t. Two other really quick state-level things that I wanted to flag that I just think are interesting and are examples of conservatives trying to get very creative and not do just a straightforward ban. I would flag Utah is trying to ban abortion by banning abortion clinics and saying it has to only take place in hospitals. Twist: No hospital in the state will do abortions because they’re religiously affiliated. So that’s sort of a total ban in practicality, if not in name. That’s been enjoined in court. And then in Wyoming, they’ve tried to ban the pills. And pills are what people use because there are no facilities that perform abortions. And so these are ways they’re trying to get creative and do it in different ways. That has been enjoined, too. So we’ll see. But it’s very like, throw everything at the wall and see what sticks.

Rovner: And I would add to that, although I think we haven’t really talked about it on the podcast — is some cities now trying to create bans. So even within blue states there would be bans in red cities, which is another complicated legal thing.

Raman: I looked up some Guttmacher Institute data and we had fewer abortion laws adopted last year compared to the year before. It was 50 last year versus 108 the year before. And, you know, the Dobbs decision dropped after some of these states had gone out of session. But the one thing that I thought — that resonated with me because, you know, A) a lot of these states, maybe they’ve implemented wider bans or they were able to bring back older laws, but it was a drop in the number that we were seeing. And the thing that I have kind of taken away from this year is that the states that we’ve been talking about before — you know, North Carolina, South Carolina, and Florida — that are implementing these, or trying to, much stronger abortion bans are the ones that have been kind of the safe havens, quote-unquote, since the news dropped, where if you live elsewhere in the South, you are trying to go to one of these states to get an abortion. So it’s kind of like a whack-a-mole and that these are the places that have been seeing an influx of patients, especially Florida, that, you know, these are — the cracking-down there to kind of minimize that.

Rovner: So, and to go back to what we said at the beginning, that just makes abortion more expensive for people who have to leave their own state to go somewhere else. Well, we’ve been kind of dancing around this a little bit. But one of the reasons that states have not done some of the things that we thought they might do is that voters have not reacted the way we expected or, I don’t know, the way some people expected. I mean, it’s been surprising. Somebody summarize for us what voters have done on this issue in the last year.

Ollstein: Every time voters have been able to weigh in directly, they have weighed in directly against restrictions and for protections — you know, broadly. Because of that, you have a lot more activists in states trying to set up these votes for later this year, next year, the following years. Every state has different rules around this, and some states don’t allow it at all. But because of just the sweep of the pro-abortion rights side last year in six states —

Rovner: Including some pretty red states like Kentucky and Kansas.

Ollstein: Including some very red states. Yeah, although, you know, it’s a good reminder that, you know, we think in terms of red state, blue state. But, you know, it’s really nuanced. I mean, Kansas has a Democratic governor. Kentucky has a Democratic governor. But, yes, these are states that voted for Trump, have an overwhelmingly Republican state legislature. So it’s how you look at things. But, yes, very conservative, very religious. And both the vote results, but also reporting, polling, focus groups, show that even people who self-identify as very conservative and even personally anti-abortion, a lot of them are not supportive of laws that are this restrictive and think that this should be someone’s personal choice. So I think that’s why these campaigns that really had a conservative-friendly message of getting the government out of your personal business were so successful.

Luthra: And what’s been striking has been seeing the polling just in general around abortion rights. It’s been fairly stagnant up until last year. And basically every big polling organization has seen a shift, and voters are more supportive now of abortion rights than they were before, more opposed in some cases, even to, like, the second-trimester bans, which in the past were a bit more popular, and also in some cases more likely to place this as a high priority for voting. And that will be really interesting to see, especially next year, when we have more abortion rights ballot initiatives, as Alice mentioned, but also more candidates, including the president, running on abortion specifically, and seeing whether this particular issue does influence voters to become, in particular, more Democratic than they otherwise might have been.

Rovner: Yeah, it’s funny; abortion has been a big voting issue for the anti-abortion movement for years, which is how they got to this point basically. It has not been a huge issue for those who support abortion rights because a lot of people thought Roe would never go away, so they didn’t need to vote on it. And I think that’s going to be sort of a big realization. And next year is going to be the first presidential election since Roe went away. Before we leave the states, I would flag, though, the fact that, Alice, you were saying that because of the success of some of these state ballot initiatives, there are other states that are trying to do it, but there are also efforts to stop states that are trying to do it. I’m thinking mostly of Ohio and Missouri, in particular, which has a bizarre fight going on.

Ollstein: Yeah, absolutely. And those are the most immediate ones. But lots of red states took up bills this year to make direct ballot initiatives harder in lots of different ways — either, you know, raising the number of signatures that need to be collected, having weird geographical requirements for where the signatures are collected, and then the main one, which is in play in Ohio, is this question of requiring a supermajority vote to pass instead of just a bare majority. And so Ohio Republican legislators are setting up this August special vote on whether to raise the threshold from 50 to 60% to approve a ballot initiative. And they have been on the record about this specifically aimed at making sure the vote to restore abortion access in the state can’t pass in the fall. And then in Missouri, there’s all sorts of different things in play, some weird stuff, but —

Rovner: I think I can explain Missouri. The state attorney general is trying to make the state auditor change his estimate of how much it would cost if they were to pass this ballot measure expanding abortion access. And I think that the state auditor has said it would cost something like $51,000 or $51 million and that the state attorney general wants to make him increase that by a factor of 10 or a hundred. I mean, there’s just this huge fight. And of course, that would have to go on the ballot measure. So if the anti-abortion attorney general thinks if people go to the polls and see that this is going to cost millions or hundreds of millions or billions of dollars, they’re less likely to vote for it. And so that fight sort of continues. And I believe it has not been resolved yet.

Raman: And they’re both from the same party, which I think just makes it more interesting.

Rovner: Yeah. But you know, this is the first time I can remember a fight, a big important fight, between a state auditor and a state attorney general. I want to talk a little bit about what’s happened to doctors and other health professionals, because they’re kind of caught in the middle here. I mean, they had not been — I’ve written at length about the AMA [American Medical Association]’s sort of checkered history of trying to be on every single side of this issue over the years. But now we’re seeing doctors put in some pretty hairy positions, right?

Luthra: One thing I’ve been really struck by is talking to a lot of — and this is especially doctors, but true probably of all health professionals, is this idea that they didn’t have to take a position on abortion before, so many of them simply didn’t. They were happy to sort of think of it in a silo separate from the rest of their jobs. And that was because, like you said, Julie, they weren’t concerned about losing Roe. And now that we’re in this world, many of them have been really stunned to see what the consequences are, and a lot have described to me this feeling of being sort of called to political activism that they did not expect, did not train for, it’s not the job that they have — but being really pushed to talk about abortion in a way they otherwise wouldn’t have. And what we’ve also seen, of course, is many moving from states that have bans on abortion. Many of those states that have bans on abortion are also passing bans on gender-affirming care for minors, which puts even more doctors, nurses, med students, residents in a bind. We should also note that the health care workforce is a majority woman workforce, and so many of them feel personally affected by these laws as well and are factoring that in their decisions as to whether to practice. And it’s still quite early to say what the implications will be. But there is a lot of real concern in these states that already were these, you know, lower-health-care-access states, especially in rural areas, losing even more health care professionals because of the bans they’ve put in place.

Ollstein: Doctors are becoming more vocal. I think a lot of players in the medical space that haven’t been as vocal about this are weighing in, telling state legislatures, “You’re putting our members in danger.” And so I completely agree. And I think that a lot of this anxiety seems to be from the medical community, like, If we accept this intrusion into our work, what’s next? What else will state legislators who are not doctors try to dictate that we can and can’t do? And so there’s sort of a sense of, If we don’t stand up to this, we’re sort of opening the door to a lot more intrusion into the patient-provider relationship.

Raman: So I have done a lot of looking at the long-term. I’ve been following, since last year, kind of the steps with workforce because I think, for context, we’re expected in a few years to have a shortage of obstetrics providers already, given a higher percentage of women of reproductive age and a lot of folks just leaving that workforce altogether. And I have been kind of curious how this is going to affect that. And I think some of the takeaways, I think, to echo Shefali, is A) it’s early. So it’s hard to go through the data and see what is because of this, what’s because of that. But I think one thing that I’ve noticed is that it hasn’t been just obstetrics or just emergency room or family medicine. I’ve been hearing from folks in all sorts of specialties, even if they aren’t even related to this, because wherever you do your training, it might affect your family or yourself. And that is something that I’ve heard come up — you know, harassment and is there options for themselves? And I think also just unclarity in the laws. I’ve heard multiple either folks training to be physicians or who have just become them say that they didn’t go to school to become a lawyer; they went to school to become a health care provider. And having to have that intermediary and consult the legal team of the hospital in between is just very difficult for them to do their care. But datawise, I think that we had, according to the AMA, a drop in residency apps for obstetrics and gynecology, and it was higher in the more restrictive states, but it also dropped some in the states that are more progressive on abortion, like it dropped in California. So it’s kind of hard to tell so soon what that could mean. But I think if you look at what happened in Texas, which had pretty flat numbers before SB 8, and then they had a huge drop after that law was implemented and who was applying to go there, and they have the third most programs in the country — like, that can provide some clues that we could see kind of further on as we keep looking. But yeah, a lot of it’s not going to be felt for a while.

Rovner: I think two really important points there, though, is one is that it’s not just restricted to the specialties that we would think because, as you point out, health care, particularly graduating medical students, are now majority women and they are mostly of childbearing age, so they are concerned about themselves and their families. And if they’re men, they likely have partners, so they’re still considered worried about themselves and their families. So it can be kind of a big deal. And the other one, of course, is that where medical students train after medical school, where they do their residencies, is very, very indicative of where they’re going to end up practicing. So if you don’t have people training in those states, you’re going to have fewer people practicing in those states. And that we do know from way, way, way back. So I think that’s also going to be an issue going forward. Well, we are running out of time, but I wanted to go around the table once really quickly and say you’ve all been obviously very steeped in this for the last year. I want everybody to tell us sort of the one thing that’s going to stick with you most from reporting over the course of this first year without Roe. Shefali, why don’t you start?

Luthra: I think the thing that will stick with me this year and probably the rest of my life is hearing from the people who have tried to get abortions in states where they cannot, whether that was because of a wanted pregnancy that went wrong, whether that was to save their own lives, whether that was because they already had two kids and didn’t want another or they didn’t want any kids. And just the themes that you keep hearing from them, right? The anger; the betrayal; the feeling like they are less of a person because they can’t get this in their home state; the financial distress that they go through; and, in many cases, the isolation, because they have no one they can talk to about this. It’s really, really striking to hear those stories. And I think they’re some of the most important things that we as reporters can hear about and that our readers can see and internalize and think about when they conceive of what abortion bans mean.

Rovner: Sandhya.

Raman: I think the thing that sticks with me is just really how far the reverberations from this decision have gone. You know, what really comes to mind is last year when I was at an international family planning conference, this woman from a Kenyan nonprofit said to me, “You know, when the U.S. sneezes, the rest of the countries catch a cold.” And I think that was really striking and just seeing how far a U.S. court case can be felt around the world, whether it is countries that have made more progressive abortion laws or more restrictive abortion laws, kind of in the light of something the U.S. does, and just kind of how something that I think is easy to think of as just here, how that can have an effect on other leaders and the people there, or just countries that rely on the U.S. for a variety of things. So that, that really sticks with me.

Rovner: Alice.

Ollstein: Yeah. In traveling, it’s just been really striking to see how abortion bans have had these knock-on effects and limited the availability of other kinds of health care, whether that’s by putting clinics out of business or causing an exodus of doctors and residents and medical students from particular parts of the country that already were experiencing shortages and really just making these medical deserts, and particularly maternal health deserts, that were already there even worse, and just meeting people who were telling me, “I was told it would be, you know, a four-month wait just to get an IUD.” You know, these are people who are trying to prevent an unwanted pregnancy. And there’s just nowhere for them to go in a lot of places in the country, more than we think. And so just looking at people who are not pregnant, are not seeking an abortion, are also being hit by these legal changes.

Rovner: I’ve been struck just by how accurate a lot of the predictions were about what would happen if Roe went down. I mean, there were things that were unexpected. But I think most of the things, particularly the red state, blue state, have and have-not, have been exactly what people predicted would happen. All right. It is time for our extra credit segment. That’s normally when we each recommend a story we read this week that we think you should read too. This week, though, I’ve asked the panelists to choose their favorite story about reproductive health that they have written in this past year. 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. Sandhya, why don’t you go first this week?

Raman: So the story I picked is called “Conservatives Use Abortion Strategies in Fight Over Trans Care,” and I wrote this for Roll Call in February. What I did was kind of take a look at how we got to the Dobbs decision in the first place, is after the passing of legislation and the litigation and a number of state abortion laws and how those parallels are pretty striking to what’s been happening with trans health right now that has been really ramping up as a political messaging issue. And so, you know, in some cases it’s been very clear, where they’ve been putting language about abortion and gender-affirming care in the same bill, or restrictions there. But I think there are a lot of parallels that I was kind of finding in that, you know, starting with minors and then scaling up in restrictions or looking at science that’s odds with major medical organizations or messaging on safety or looking to penalize doctors or just, like, amplifying very rare cases of regret — that kind of thing. And so looking forward, that’s something that just keeps resonating with me as something to watch, that the abortion blueprint is not unique. It’s going to be there for other things.

Rovner: Alice.

Ollstein: So I chose the piece I did from the ground in Kansas when they voted. They were the first state where voters could weigh in directly on abortion access post-Roe, and it just revealed so many things that continue to be true for the states that are voting on this. It was just such a clear preview of what was to come. It was the flood of out-of-state money and staff on both sides. It was just how heated it got on the ground. It was the attempts by Republican state legislatures to structurally make it harder for folks to vote and more likely for things to go their way. And yet it was a blowout vote for the pro-abortion rights side in the end. And that was just such a preview of what was to come on both sides, and just being there on the ground and being able to see this and to see how people were feeling when the Dobbs decision was so fresh will really stay with me.

Rovner: Shefali.

Luthra: My story published in May at the anniversary of the Dobbs leak. It’s called “93 Days: The Summer America Lost Roe v. Wade.” And for this, it was an oral history that my editor and I had talked about. And we spent a few months working on it, talking to a dozen different folks about what it was like to live through last summer, from the Dobbs leak to the Dobbs decision up to the Kansas election. And there are stories from doctors; from politicians; from activists; people who organized on the Kansas abortion rights initiative; lawmakers who talked about their experience of learning of the decision; Kristan Hawkins, the head of Students for Life. But the people whose stories I think are most worth reading are the, I think it was three women I spoke to, who talked about their experiences navigating abortion, including one woman who was trying to schedule her abortion. She was in line at Disney when the decision came out and she found out her appointment had been canceled. She was never able to get another one and she had a baby soon afterward. There was another who was taking her medication abortion pills at home when the decision was revealed, and she wasn’t sure if she was breaking the law by taking misoprostol in her bathtub. And I think these stories just — they really cemented for me that this is not only the world that we live in, but that these are the real-life implications on the people who are affected. And I just always really love getting a chance to tell those stories.

Rovner: Well, my story is a piece that I wrote last July, so almost a year ago, called “Three Things About the Abortion Debate That Many People Get Wrong.” And one myth, of course, is that abortion bans and restrictions would only affect people seeking abortions, which we now know in sometimes horrifying detail is not true. Women with very wanted pregnancies gone wrong are also caught in the crossfire, and, as we said, forced to travel long distances or wait until they are literally at death’s door to get needed care. But it’s worth reminding people about the other two myths. One is that Congress could have codified abortion rights at any time since Roe but never really tried very hard, and the other one that Congress could have acted in 2022 — the end of last year — when Democrats still had majorities, albeit very tiny ones, in the House and Senate. In fact, Congress never had the votes to enshrine abortion rights for the entire life of Roe. There were several attempts to do that, many of which I personally covered. And to those who think Congress could have done something last year, I ask, “Have you met Democratic Senators Joe Manchin and Kyrsten Sinema?” That wasn’t going to happen either. All right. Well, 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 @jrovner.

Rovner: Shefali?

Luthra: I’m @shefalil.

Rovner: Sandhya.

Raman: I’m @SandhyaWrites.

Rovner: Alice.

Ollstein: @AliceOllstein.

Rovner: We are taking next week off for the Fourth of July holiday, so we will be back in your feed with our regular news update on July 13. Until then, be healthy.

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Francis Ying
Audio producer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Pero no Springfield, Illinois”, bromeó Dempsey.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“But not Springfield, Illinois,” Dempsey quipped.

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

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

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

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

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

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

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

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

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

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As hot days become more extreme and common, California education researchers are urging that school districts be required to develop heat plans to keep students safe, just as they have policies for severe storms and active shooters.

A policy brief published last month by the UCLA Luskin Center for Innovation offers a series of recommendations on how education and building codes can help schools become more heat-resilient in the face of global warming. State Sen. Caroline Menjivar, a Democrat, introduced legislation this year requiring schools to have heat plans by 2027, and another bill would make it easier for schools to create more shaded spaces.

“Obviously, the California Education Board wasn’t set up to think about climate change. But now that climate change is a reality, virtually every sector is going to have to think about it,” said V. Kelly Turner, an urban planning associate professor and the director of the Luskin Center.

The center’s recommendations include steps such as setting an indoor temperature limit, documenting the air-conditioning and shade infrastructure of each school, and investing in shade and greenery for play areas. The brief also calls out areas needing more research, such as the safest indoor temperature range.

The best way to keep kids cool is perhaps the most obvious: providing shade, which can reduce the heat stress experienced throughout the day by 25% to 35%, according to the Luskin Center.

That requires reconfiguring playgrounds to make them cooler, said Perry Sheffield, a pediatrician and an environmental medicine researcher at Mount Sinai in New York City. In addition to shade, swapping heat-absorbing materials like asphalt and rubber for grass and wood chips helps cool things down.

“The more we can encourage play as well as physical activity, the healthier our kids are going to be, so figuring out a way to do that safely is really key,” said Sheffield.

On a playground in the San Fernando Valley, Turner said, she once measured 145-degree asphalt and 162-degree rubber — hot enough to cause a third-degree burn in seconds.

California already has millions of dollars of grant funding available for greening schoolyards and increasing tree canopy, such as the Urban and Community Forestry grants through Cal Fire that set a goal to shade at least 30% of school campuses.

To help schools make the best use of funding for extra trees, Turner and her graduate student Morgan Rogers are modeling how increasing the tree canopy to 30% can affect heat stress. They will compare different tree configurations, like dispersed or clustered, and hope to issue recommendations this fall.

Legislators in Sacramento are also looking at amending state building codes to make it easier for schools to install shade structures. Currently, the rules require that an additional 20% of the budget be spent on any new construction or renovation to make an accessible path to the completed project. The bill would add an exception for free-standing shade structures.

Schools would still be required to meet accessibility requirements, but installing a shade structure wouldn’t trigger additional construction. “That’s what we are asking, not to be exempted from those requirements, but to not put the burden on the shade structure,” said Mark Hovatter, chief facilities executive of the Los Angeles Unified School District.

Menjivar said she was excited to see the new UCLA research. Her bill would require the state Department of Education to develop a template for schools to follow in creating their own heat plans, which would have to be completed by 2025 for implementation in 2027. The bill recently passed the state Senate and is now being considered in the Assembly.

Schools outside California are also reckoning with the heat. Researchers at Arizona State University partnered with public health experts and school leaders last spring to develop guidelines for “HeatReady Schools.” The 30 recommendations span topics like school policy (e.g., access to a health professional), the environment (shade coverage on at least half the playground), and training (workshops on identifying heat illness).

The program is working with 35 schools and community centers in Phoenix, with plans to expand to all of Maricopa County by 2026.

Preparing for the warming climate is front of mind for Principal Brad Rumble at Esperanza Elementary School in Los Angeles. The school’s heat-resilience efforts started with filling empty tree wells in front of the campus in 2014. Now, the school boasts a shaded courtyard and a native plant garden, and, courtesy of a grant from the district, more trees are on the way.

“We work together to make sure that our students’ needs are addressed on hot days,” Rumble said. “And, certainly, as more shade becomes available on this campus, we will be able to address those needs even better.”

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

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

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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.

A final deal cut between President Joe Biden and House Republicans extends the U.S. debt ceiling deadline to 2025 and reins in some spending. The bill signed into law by the president will preserve many programs at their current funding levels, and Democrats were able to prevent any changes to the Medicare and Medicaid programs.

Still, millions of Americans are likely to lose their Medicaid coverage this year as states are once again allowed to redetermine who is eligible and who is not; Medicaid rolls were frozen for three years due to the pandemic. Data from states that have begun to disenroll people suggests that the vast majority of those losing insurance are not those who are no longer eligible, but instead people who failed to complete required paperwork — if they received it in the first place.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Lauren Weber of The Washington Post, and Jessie Hellmann of CQ Roll Call.

Panelists

Jessie Hellmann
CQ Roll Call

@jessiehellmann

Read Jessie's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

• Lawmakers and White House officials spared health programs from substantial spending cuts in a last-minute agreement to raise the nation’s debt ceiling. And Biden named Mandy Cohen, a former North Carolina health director who worked in the Obama administration, to be the next director of the Centers for Disease Control and Prevention. Though she lacks academic credentials in infectious diseases, Cohen enters the job with a reputation as someone who can listen and be listened to by both Democrats and Republicans.
• The removal of many Americans from the Medicaid program, post-public health emergency, is going as expected: With hundreds of thousands already stripped from the rolls, most have been deemed ineligible not because they don’t meet the criteria, but because they failed to file the proper paperwork in time. Nearly 95 million people were on Medicaid before the unwinding began.
• Eastern and now southern parts of the United States are experiencing hazardous air quality conditions as wildfire smoke drifts from Canada, raising the urgency surrounding conversations about the health effects of climate change.
• The drugmaker Merck & Co. sued the federal government this week, challenging its ability to press drugmakers into negotiations over what Medicare will pay for some of the most expensive drugs. Experts predict Merck’s coercion argument could fall flat because drugmakers voluntarily choose to participate in Medicare, though it is unlikely this will be the last lawsuit over the issue.
• In abortion news, some doctors are pushing back against the Indiana medical board’s decision to reprimand and fine an OB-GYN who spoke out about providing an abortion to a 10-year-old rape victim from Ohio. The doctors argue the decision could set a bad precedent and suppress doctors’ efforts to communicate with the public about health issues.

Also this week, Rovner interviews KFF Health News senior correspondent Sarah Jane Tribble, who reported the latest KFF Health News-NPR “Bill of the Month” feature, about a patient with Swiss health insurance who experienced the sticker shock of the U.S. health care system after an emergency appendectomy. If you have an outrageous or exorbitant medical bill you want to share with us, you can do that here.

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

Julie Rovner: The New York Times’ “This Nonprofit Health System Cuts Off Patients With Medical Debt,” by Sarah Kliff and Jessica Silver-Greenberg.

Jessie Hellmann: MLive’s “During the Darkest Days of COVID, Some Michigan Hospitals Made 100s of Millions,” by Matthew Miller and Danielle Salisbury.

Joanne Kenen: Politico Magazine’s “Can Hospitals Turn Into Climate Change Fighting Machines?” by Joanne Kenen.

Lauren Weber: The Washington Post’s “Smoke Brings a Warning: There’s No Escaping Climate’s Threat to Health,” by Dan Diamond, Joshua Partlow, Brady Dennis, and Emmanuel Felton.

Also mentioned in this week’s episode:

KFF Health News’ “As Medicaid Purge Begins, ‘Staggering Numbers’ of Americans Lose Coverage,” by Hannah Recht.

Click to open the transcript

Transcript: Debt Deal Leaves Health Programs (Mostly) Intact

KFF Health News’ ‘What the Health?’Episode Title: Debt Deal Leaves Health Programs (Mostly) IntactEpisode Number: 301Published: June 8, 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 at KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We are taping this week from the smoky, hazy, “code purple” Washington, D.C., area on Thursday, June 8, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: Lauren Weber, of The Washington Post.

Lauren Weber: Hi.

Rovner: And Jessie Hellmann, of CQ Roll Call.

Hellmann: Hello.

Rovner: Later in this episode we’ll have my interview with KFF Health News’s Sarah Jane Tribble about the latest KFF Health News-NPR “Bill of the Month.” This month is about the sticker shock of the American health care system experienced by residents of other countries. Before we get to this week’s news, I hope you all enjoyed our special panel of big health policy thinkers for our 300th episode. If you didn’t listen, you might want to go back and do that at some point. Also, that means we have two weeks of news to catch up on, so let us get to it. We’re going to start this week, I hope, for the last time with the fight over the debt ceiling. Despite lots of doubts, President Biden managed to strike a budget deal with House Republicans, which fairly promptly passed the House and Senate and was signed into law a whole two days before the Treasury Department had warned that the U.S. might default. The final package extends the debt ceiling until January 1, 2025, so after the next election, which was a big win for the Democrats, who don’t want to do this exercise again anytime soon. In exchange, Republicans got some budget savings, but nothing like the dramatic bill that House Republicans passed earlier this spring. So, Jessie, what would it do to health programs?

Hellmann: The deal cuts spending by 1.5 trillion over 10 years. It has caps on nondefense discretionary funding. That would have a big impact on agencies and programs like the NIH [National Institutes of Health], which has been accustomed to getting pretty large increases over the years. So nondefense discretionary spending will be limited to about 704 billion next fiscal year, which is a cut of about 5%. And then there’s going to be a 1% increase in fiscal 2025, which, when you consider inflation, probably isn’t much of an increase at all. So the next steps are seeing what the appropriators do. They’re going to have to find a balance between what programs get increases, which ones get flat funding — it’s probably going to be a lot of flat funding, and we’re probably at the end of an era for now with these large increases for NIH and other programs, which have traditionally been very bipartisan, but it’s just a different climate right now.

Rovner: And just to be clear, I mean, this agreement doesn’t actually touch the big sources of federal health spending, which are Medicare and Medicaid, not even any work requirements that the Republicans really wanted for Medicaid. In some ways, the Democrats who wanted to protect health spending got off pretty easy, or easier than I imagine they expected they would, right?

Hellmann: Advocates would say it could have been much worse. All things considered, when you look at the current climate and what some of the more conservative members of the House were initially asking for, this is a win for Democrats and for people who wanted to protect health care spending, especially the entitlements, because they — Republicans did want Medicaid work requirements and those just did not end up in the bill; they were a nonstarter. So, kind of health-care-related, depending on how you look at it, there was an increase in work requirements for SNAP [Supplemental Nutrition Assistance Program], which is, like, a food assistance program. So that will be extended to age 55, though they did include more exemptions for people who are veterans —

Rovner: Yeah, overall, that may be a wash, right? There may be the same or fewer people who are subject to work requirements.

Hellmann: Yeah. And all those changes would end in 2030, so —

Weber: Yeah, I just wanted to say, I mean, if we think about this — we’re coming out of a pandemic and we’re not exactly investing in the health system — I think it’s necessary to have that kind of step-back context. And we’ve seen this before. You know, it’s the boom-bust cycle of pandemic preparedness funding, except accelerated to some extent. I mean, from what I understand, the debt deal also clawed back some of the public health spending that they were expecting in the billions of dollars. And I think the long-term ramifications of that remain to be seen. But we could all be writing about that in 10 years again when we’re looking at ways that funding fell short in preparedness.

Rovner: Yeah, Joanne and I will remember that. Yeah, going back to 2001. Yeah. Is that what you were about to say?

Kenen: I mean, this happens all the time.

Weber: All the time, right.

Kenen: And we learn lessons. I mean, the pandemic was the most vivid lesson, but we have learned lessons in the past. After anthrax, they spent more money, and then they cut it back again. I mean, I remember in 2008, 2009, there was a big fiscal battle — I don’t remember which battle it was — you know, Susan Collins being, you know, one of the key moderates to cut the deal. You know, what she wanted was to get rid of the pandemic flu funding. And then a year later, we had H1N1, which turned out not to be as bad as it could have been for a whole variety of reasons. But it’s a cliche: Public health, when it works, you don’t see it and therefore people think you don’t need it. Put that — put the politics of what’s happened to public health over the last three years on top of that, and, you know, public health is always going to have to struggle for funds. Public health and larger preparedness is always going to happen to have to struggle for funds. And it would have, whether it was the normal appropriations process this year, which is still to come, or the debt ceiling. It is a lesson we do not learn the hard way.

Weber: That’s exactly right. I’ll never forget that Tom Harkin said to me that after Obama cut, he sacrificed a bunch of prevention funding for the CDC [Centers for Disease Control and Prevention] in the ACA [Affordable Care Act] deal, and he never spoke to him again, he told me, because he was so upset because he felt like those billions of dollars could have made a difference. And who knows if 10 years from now we’ll all be talking about this pivotal moment once more.

Rovner: Yeah, Tom Harkin, the now-former senator from Iowa, who put a lot of prevention into the ACA; that was the one thing he really worked hard to do. And he got it in. And as you point out, and it was almost immediately taken back out.

Weber: Yeah.

Kenen: Not all of it.

Weber: Not all of it, but a lot of it.

Kenen: It wasn’t zero.

Rovner: It became a piggy bank for other things. I do want to talk about the NIH for a minute, though, because Jessie, as you mentioned, there isn’t going to be a lot of extra money, and NIH is used to — over the last 30 years — being a bipartisan darling for spending. Well, now it seems like Congress, particularly some of the Republicans, are not so happy with the NIH, particularly the way it handled covid. There’s a new NIH director who has been nominated, Dr. Monica Bertagnolli, who is currently the head of the National Cancer Institute. This could be a rocky summer for the NIH on Capitol Hill, couldn’t it?

Hellmann: Yeah, I think there’s been a strong desire for Republicans to do a lot of oversight. They’ve been looking at the CDC. I think they’re probably going to be looking at the NIH next. Francis Collins is no longer at NIH. Anthony Fauci is no longer there. But I think Republicans have indicated they want to bring them back in to talk about some of the things that happened during the pandemic, especially when it comes to some of the projects that were funded.

Kenen: There was a lull in raising NIH spending. It was flat for a number of years. I can’t remember the exact dates, but I remember it was — Arlen Specter was still alive, and it … [unintelligible] … because he is the one who traditionally has gotten a lot of bump ups in spending. And then there was a few years, quite a few years, where it was flat. And then Specter got the spigots opened again and they stayed open for a good 10 or 15 years. So we’re seeing, and partly a fiscal pause, and partly the — again, it’s the politicization of science and public health that we did not have to this extent before this pandemic.

Rovner: Yeah, I think it’s been a while since NIH has been under serious scrutiny on Capitol Hill. Well, speaking of the CDC, which has been under serious scrutiny since the beginning of the pandemic, apparently is getting a new director in Dr. Mandy Cohen, assuming that she is appointed as expected. She won’t have to be confirmed by the Senate because the CDC director won’t be subject to Senate approval until 2025. Now, Mandy Cohen has done a lot of things. She worked in the Obama administration on the implementation of the Affordable Care Act. She ran North Carolina’s Department of Health [and Human Services], but she’s not really a noted public health expert or even an infectious disease doctor. Why her for this very embattled agency at this very difficult time?

Kenen: I think there are a number of reasons. A lot of her career was on Obamacare kind of things and on CMS kind of quality-over-quantity kind of things, payment reform, all that. She is a physician, but she did a good job in North Carolina as the top state official during the pandemic. I reported a couple of magazine pieces. I spent a lot of time in North Carolina before the pandemic when she was the state health secretary, and she was an innovator. And not only was she an innovator on things like, you know, integrating social determinants into the Medicaid system; she got bipartisan support. She developed not perfect, but pretty good relations with the state Republicans, and they are not moderates. So I think I remember writing a line that said something, you know, in one of those articles, saying something like, “She would talk to the Republicans about the return on investment and then say, ‘And it’s also the right thing to do.’ And then she would go to the Democrats and say, ‘This is the right thing to do. And there’s also an ROI.’”. So, so I think in a sort of low-key way, she has developed a reputation for someone who can listen and be listened to. I still think it’s a really hard job and it’s going to batter anyone who takes it.

Rovner: I suspect right now at CDC that those are probably more important qualities than somebody who’s actually a public health expert but does not know how to, you know, basically rescue this agency from the current being beaten about the head and shoulders by just about everyone.

Kenen: Yeah, but she also was the face of pandemic response in her state. And she did vaccination and she did disparities and she did messaging and she did a lot of the things that — she does not have an infectious disease degree, but she basically did practice it for the last couple of years.

Rovner: She’s far from a total novice.

Kenen: Yeah.

Rovner: All right. Well, it’s been a while since we talked about the Medicaid “unwinding” that began in some states in early April. And the early results that we’re seeing are pretty much as expected. Many people are being purged from the Medicaid rolls, not because they’re earning too much or have found other insurance, but because of paperwork issues; either they have not returned their paperwork or, in some cases, have not gotten the needed paperwork. Lauren, what are we seeing about how this is starting to work out, particularly in the early states?

Weber: So as you said, I mean, much like we expected to see: So 600,000 Americans have been disenrolled so far, since April 1. And some great reporting that my former colleague Hannah Recht did this past week: She reached out to a bunch of states and got ahold of data from 19 of them, I believe. And in Florida, it was like 250,000 people were disenrolled and somewhere north of 80% of them, it was for paperwork reasons. And when we think about paperwork reasons, I just want us all to take a step back. I don’t know about anyone listening to this, but it’s not like I fill out my bills on the most prompt of terms all of the time. And in some of these cases, people had two weeks to return paperwork where they may not have lived at the same address. Some of these forms are really onerous to fill out. They require payroll tax forms, you know, that you may not have easily accessible — all things that have been predicted, but the hard numbers just show is the vast majority of people getting disenrolled right now are being [dis]enrolled for paperwork, not because of eligibility reasons. And too, it’s worth noting, the reason this great Medicaid unwinding is happening is because this was all frozen for three years, so people are not in the habit of having to fill out a renewal form. So it’s important to keep that in mind, that as we’re seeing the hard data show, that a lot of this is, is straight-up paperwork issues. The people that are missing that paperwork may not be receiving it or just may not know they’re supposed to be doing it.

Rovner: As a reminder, I think by the time the three-year freeze was over, there were 90 million people on Medicaid.

Kenen: Ninety-five.

Rovner: Yeah. So it’s a lot; it’s like a quarter of the population of the country. So, I mean, this is really impacting a lot of people. You know, I know particularly red states want to do this because they feel like they’re wasting money keeping ineligible people on the rolls. But if eligible people become uninsured, you can see how they’re going to eventually get sicker, seek care; those providers are going to check and see if they’re eligible for Medicaid, and if they are, they’re going to put them back on Medicaid. So they’re going to end up costing even more. Joanne, you wanted to say something?

Kenen: Yeah. Almost everybody is eligible for something. The exceptions are the people who fall into the Medicaid gap, which is now down to 10 states.

Rovner: You mean, almost everybody currently on Medicaid is eligible.

Kenen: Anyone getting this disenrollment notification or supposed to receive the disenrollment notification that never reaches them — almost everybody is eligible for, they’re still eligible for Medicaid, which is true for the bulk of them. If they’re not, they’re going to be eligible for the ACA. These are low-income people. They’re going to get a lot heavily subsidized. Whether they understand that or not, someone needs to explain it to them. They’re working now, and the job market is strong. You know, it’s not 2020 anymore. They may be able to get coverage at work. Some of them are getting coverage at work. One of the things that I wrote about recently was the role of providers. States are really uneven. Some states are doing a much better job. You know, we’ve seen the numbers out of Florida. They’re really huge disenrollment numbers. Some states are doing a better job. Georgetown Center on Health Insurance — what’s the right acronym? — Children’s and Family. They’re tracking, they have a state tracker, but providers can step up, and there’s a lot of variability. I interviewed a health system, a safety net in Indiana, which is a red state, and they have this really extensive outreach system set up through mail, phone, texts, through the electronic health records, and when you walk in. And they have everybody in the whole system, from the front desk to the insurance specialists, able to help people sort this through. So some of the providers are quite proactive in helping people connect, because there’s three things: There’s understanding you’re no longer eligible, there’s understanding what you are eligible for, and then actually signing up. They’re all hard. You know, if your government’s not going to do a good job, are your providers or your community health clinics or your safety net hospitals — what are they doing in your state? That’s an important question to ask.

Rovner: Providers have an incentive because they would like to be paid.

Kenen: Paid.

Weber: Well, the thing about Indiana too, Joanne, I mean — so that was one of the states that Hannah got the data from. They had I think it was 53,000 residents that have lost coverage in the first amount of unwinding. 89% of them were for paperwork. I mean, these are not small fractions. I mean, it is the vast majority that is being lost for this reason. So that’s really interesting to hear that the providers there are stepping up to face that.

Kenen: It’s not all of them, but you can capture these people. I mean, there’s a lot that can go wrong. There’s a lot that — in the best system, you’re dealing with [a] population that moves around, they don’t have stable lives, they’ve got lots of other things to deal with day to day, and dealing with a health insurance notice in a language you may not speak delivered to an address that you no longer live at — that’s a lot of strikes.

Rovner: It is not easy. All right. Well, because we’re in Washington, D.C., we have to talk about climate change this week. My mother, the journalist, used to say whenever she would go give a speech, that news is what happens to or in the presence of an editor. I have amended that to say now news is what happens in Washington, D.C., or New York City. And since Washington, D.C., and New York City are both having terrible air quality — legendary, historically high air quality — weeks, people are noticing climate change. And yes, I know you guys on the West Coast are saying, “Uh, hello. We’ve been dealing with this for a couple of years.” But Joanne and Lauren, both of your extra credits this week have to do with it. So I’m going to let you do them early. Lauren, why don’t you go first?

Weber: Yeah, I’ve highlighted a piece by my colleague Dan Diamond and a bunch of other of my colleagues, who wrote all about how this is just a sign of what’s to come. I mean, this is not something that is going away. The piece is titled “Smoke Brings a Warning: There’s No Escaping Climate’s Threat to Health.” I think, Julie, you hit the nail on the head. You know, we all live here in Washington, D.C. A lot of other journalist friends live in New York. There’s been a lot of grousing on Twitter that everyone is now covering this because they can see it. But the reality is, when people can see it, they pay attention. And so the point of the story is, you know, look, I mean, this is climate change in action. We’re watching it. You know, it’s interesting; this story includes a quote from Mitch McConnell saying [to] follow the public health authorities, which I found to be quite fascinating considering the current Republican stance on some public health authorities during the pandemic. And I’m just very curious to see, as we continue to see this climate change in reality, how that messaging changes from both parties.

[Editor’s note: The quote Weber referenced did not come from McConnell but from Senate Majority Leader Chuck Schumer, a Democrat, and would not have warranted as much fascination in this context.]

Kenen: But I think that you’ve seen, with the fires on the West Coast, nobody is denying that there’s smoke and pollutants in the air — of either party. You know, we can look out our windows and see it right now, right? But they’re not necessarily accepting that it’s because of climate change, and that — I’m not sure that this episode changes that. Because many of the conservatives say it’s not climate change; it’s poor management of forests. That’s the one you hear a lot. But there are other explain — or it’s just, you know, natural variation and it’ll settle down. So it remains to be seen whether this creates any kind of public acknowledgment. I mean, you have conservative lawmakers who live in parts of the country that are already very — on coasts, on hurricane areas, and, you know, forest fire areas there. You have people who are already experiencing it in their own communities, and it does not make them embrace the awareness of poor air quality because of a forest fire. Yes. Does it do what Julie was alluding to, which is change policy or acknowledging what, you know, the four of us know, and many millions of other people, you know, that this is related to climate change, not just — you know, I’m not an expert in forestry, but this is not just — how many fires in Canada, 230?

Rovner: Yeah. Nova Scotia and Quebec don’t tend to have serious forest fire issues.

Kenen: Right. This is across — this is across huge parts of the United States now. It’s going into the South now. I was on the sixth floor of a building in Baltimore yesterday, and you could see it rolling in.

Rovner: Yeah. You have a story about people trying to do something about it. So why don’t you tell us about that.

Kenen: Well it was a coincidence that that story posted this week, because I had been working on it for a couple of months, but I wrote a story. The headline was — it’s in Politico Magazine — it’s “Can Hospitals Turn Into Climate Change Fighting Machines?” Although one version of it had a headline that I personally liked more, which was “Turn Off the Laughing Gas.” And it’s about how hospitals are trying to reduce their own carbon footprint. And when I wrote this story, I was just stunned to learn how big that carbon footprint is. The health sector is 8.5% of greenhouse gas emissions in the United States, and that’s twice as high as the health sector in comparable industrial countries, and —

Rovner: We’re No. 1!

Kenen: Yes, once again, and most of it’s from hospitals. And there’s a lot that the early adopters, which is now, I would say about 15% of U.S. hospitals are really out there trying to do things, ranging from changing their laughing gas pipes to composting to all sorts of, you know, energy, food, waste, huge amount of waste. But one of the — you know, everything in hospitals is use once and throw it out or unwrap it and don’t even use it and still have to throw it out. But one of the themes of the people I spoke to is that hospitals and doctors and nurses and everybody else are making the connection between climate change and the health of their own communities. And that’s what we’re seeing today. That’s where the phenomenon Laura was talking about is connected. Because if you look out the window and you can see the harmful air, and some of these people are going to be showing up in the emergency rooms today and tomorrow, and in respiratory clinics, and people whose conditions are aggravated, people who are already vulnerable, that the medical establishment is making the connection between the health of their own community, the health of their own patients, and climate. And that’s where you see more buy-in into this, you know, greening of American hospitals.

Rovner: Speaking of issues that that seem insoluble but people are starting to work on, drug prices. In drug price news, drug giant Merck this week filed suit against the federal government, charging that the new requirements for Medicare price negotiation are unconstitutional for a variety of reasons. Now, a lot of health lawyers seem pretty dubious about most of those claims. What’s Merck trying to argue here, and why aren’t people buying what they’re selling?

Hellmann: So there’s two main arguments they’re trying to make. The primary one is they say this drug price negotiation program violates the Fifth Amendment, which prohibits the government from taking private property for public use without just compensation. So they argue that under this negotiation process they would basically be coerced or forced into selling these drugs for a price that they think is below its worth. And then the other argument they make is it violates their First Amendment rights because they would be forced to sign an agreement they didn’t agree with, because if they walk away from the negotiations, they have to pay a tax. And so it’s this coercive argument that they are making. But there’s been some skepticism. You know, Nick Bagley noted on Twitter that it’s voluntary to participate in Medicare. Merck doesn’t have a constitutional right to sell its drugs to the government at a price that they have set. And he also noted — I thought this was interesting — I didn’t know that there was kind of a similar case 50 years ago, when Medicare was created. Doctors had sued over a law Congress passed requiring that a panel review treatment decisions that doctors were making. The doctors sued also under the Fifth Amendment in the courts, and the Supreme Court sided with the government. So he seems to think there’s a precedent in favor of the government’s approach here. And there just seems to be a lot of skepticism around these arguments.

Rovner: And Nick Bagley, for those of you who don’t know, is a noted law professor at the University of Michigan who specializes in health law. So he knows whereof he speaks on this stuff. I mean, Joanne, you were, you were mentioning, I mean, this was pretty expected somebody was going to sue over this.

Kenen: It’s probably not the last suit either. It’s probably the first of, but, I mean, the government sets other prices in health care. And, you know, it sets Medicare Advantage rates. It sets rates for all sorts of Medicare procedures. The VA [U.S. Department of Veterans Affairs] sets prices for every drug that’s in its formulary or, you know, buys it at a negotiated —

Rovner: Private insurers set prices.

Kenen: Right. But that’s not government. That’s different.

Rovner: That’s true.

Kenen: They’re not suing private insurers. So, you know, I’m not Nick Bagley, but I usually respect what Nick Bagley has to say. On the other hand, we’ve also seen the courts do all sorts of things we have not expected them to do. There’s another Obamacare case right now. So, precedent, schmecedent, you know, like — although on this one we did expect the lawsuits. Somebody also pointed out, I can’t remember where I read it, so I’m sorry not to credit it, maybe it was even Nick — that even if they lose, if they buy a extra year or two, they get another year or two of profits, and that might be all they care about.

Rovner: It may well be. All right. Well, let us turn to abortion. It’s actually been relatively quiet on the abortion front these last couple of weeks as we approach the one-year anniversary of the Supreme Court striking down Roe v Wade. I did want to mention something that’s still going on in Indiana, however. You may remember the case last year of the 10-year-old who was raped in Ohio and had to go to Indiana to have the pregnancy terminated. That was the case that anti-abortion activists insisted was made up until the rapist was arraigned in court and basically admitted that he had done it. Well, the Indiana doctor who provided that care is still feeling the repercussions of that case. Caitlin Bernard, who’s a prominent OB-GYN at the Indiana University Health system, was first challenged by the state’s attorney general, who accused her of not reporting the child abuse to the proper state authorities. That was not the case; she actually had. But the attorney general, who’s actually a former congressman, Todd Rokita, then asked the state’s medical licensing board to discipline her for talking about the case, without naming the patient, to the media. Last month, the majority of the board voted to formally reprimand her and fine her $3,000. Now, however, lots of other doctors, including those who don’t have anything to do with reproductive health care, are arguing that the precedent of punishing doctors for speaking out about important and sometimes controversial issues is something that is dangerous. How serious a precedent could this turn out to be? She didn’t really violate anybody’s private — she didn’t name the patient. Lauren, you wanted to respond.

Weber: Yeah, I just think it’s really interesting. If you look at the context, the number of doctors that actually get dinged by the medical board, it’s only a couple thousand a year. So this is pretty rare. And usually what you get dinged for by the medical board are really severe things like sexual assault, drug abuse, alcohol abuse. So this would seem to indicate quite some politicization, and the fact that the AG was involved. And I do think that, especially in the backdrop of all these OB-GYN residents that are looking to apply to different states, I think this is one of the things that adds a chilling effect for some reproductive care in some of these red states, where you see a medical board take action like this. And I just think in general — it cannot be stated enough — this is a rare action, and a lot of medical board actions will be, even if there is an action, will be a letter in your file. I mean, to even have a fine is quite something and not it be like a continuing education credit. So it’s quite noteworthy.

Rovner: Well, meanwhile, back in Texas, the judge who declared the abortion pill to have been wrongly approved by the FDA, Trump appointee Matthew Kacsmaryk, is now considering a case that could effectively bankrupt Planned Parenthood for continuing to provide family planning and other health services to Medicaid patients while Texas and Louisiana were trying to kick them out of the program because the clinics also provided abortions in some cases. Now, during the time in question, a federal court had ordered the clinics to continue to operate as usual, banning funding for abortions, which always has been the case, but allowing other services to be provided and reimbursed by Medicaid. This is another of those cases that feels very far-fetched, except that it’s before a judge who has found in favor of just about every conservative plaintiff that has sought him out. This could also be a big deal nationally, right? I mean, Planned Parenthood has been a participant in the Medicaid program in most states for years — again, not paying for abortion, but for paying for lots of other services that they provide.

Kenen: The way this case was structured, there’s all these enormous number of penalties, like 11,000 per case or something, and it basically comes out to be $1.8 billion. It would bankrupt Planned Parenthood nationally, which is clearly the goal of this group, which has a long history that — we don’t have time to go into their long history. They’re an anti-abortion group that’s — you know, they were filming people, and there’s a lot of history there. It’s the same people. But, you know, this judge may in fact come out with a ruling that attempts to shut down Planned Parenthood completely. It doesn’t mean that this particular decision would be upheld by the 5th Circuit or anybody else.

Rovner: Or not. The same way the mifepristone ruling finally woke up other drugmakers who don’t have anything to do with the abortion fight because, oh my goodness, if a judge can overturn the approval of a drug, what does the FDA approval mean? This could be any government contractor — that you can end up being sued for having accepted money that was legal at the time you accepted it, which feels like not really a very good business partner issue. So another one that we will definitely keep an eye on.

Kenen: I mean, that’s the way it may get framed later, is that this isn’t really about Planned Parenthood; this is about a business or entity obeying the law, or court order. I mean, that’s how the pushback might come. I mean, I think people think Planned Parenthood, abortion, they equate those. And most Planned Parenthood clinics do not provide abortion, while those that do are not using federal funds, as a rule; there are exceptions. And Planned Parenthood is also a women’s health provider. They do prenatal care in some cases; they do STD [sexually transmitted disease] treatment and testing. They do contraception. They, you know, they do other things. Shutting down Planned Parenthood would mean cutting off many women’s access to a lot of basic health care.

Rovner: And men too, I am always reminded, because, particularly for sexually transmitted diseases, they’re an important provider.

Kenen: Yeah. HIV and other things.

Rovner: All right. Well, that is this week’s news. Now we will play my “Bill of the Month” interview with Sarah Jane Tribble, and then we will be back with our extra credits. We are pleased to welcome back to the podcast Sarah Jane Tribble, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” story. Sarah, thanks for coming in.

Sarah Jane Tribble: Thanks for having me.

Rovner: So this month’s patient is a former American who now lives in Switzerland, a country with a very comprehensive health insurance system. But apparently it’s not comprehensive enough to cover the astronomical cost of U.S. health care. So tell us who the patient is and how he ended up with a big bill.

Tribble: Yeah. Jay Comfort is an American expatriate, and he has lived overseas for years. He’s a former educator. He’s 66 years old. And he decided to retire in Switzerland. He has that country’s basic health insurance plan. He pays his monthly fee and gets a deductible, like we do here in the U.S. He traveled last year for his daughter’s wedding and ended up with an emergency appendectomy in the ER [emergency room] at the University of Pittsburgh in Williamsport.

Rovner: And how big was the ultimate bill?

Tribble: Well, he was in the hospital just about 14 hours, and he ended up with a bill of just over $42,000.

Rovner: So not even overnight.

Tribble: No.

Rovner: That feels like a lot for what was presumably a simple appendectomy. Is it a lot?

Tribble: We talked to some experts, and it was above what they had predicted it would be. It did include the emergency appendectomy, some scans, some laboratory testing, three hours in the recovery room. There was also some additional diagnostic testing. They had sent off some cells for a diagnostics and did find cancer at the time. Still, it didn’t really explain all the extra cost. Healthcare Bluebook, which you can look up online, has this at about $14,000 for an appendectomy. One expert told me, if you look at Medicare prices and average out in that region, it would be between $6,500 and $18,000-ish. So, yeah, this was expensive compared to what the experts told us.

Rovner: So he goes home and he files a claim with his Swiss insurance. What did they say?

Tribble: Well, first let me just say, cost in the U.S. can be two to three times that in other countries. Switzerland isn’t known as a cheap country, actually. Its health care is —

Rovner: It’s the second most expensive after the U.S.

Tribble: Considered the most expensive in Europe, right. So this is pretty well known. So he was still surprised, though, when he got the response from his Swiss insurance. They said they were willing to pay double because it was an emergency abroad. Total, with the appendectomy and some extra additional scans and so forth: About $8,000 is what they were willing to pay.

Rovner: So, double what they would have paid if he’d had it done in Switzerland.

Tribble: Yeah.

Rovner: So 42 minus 8 leaves a large balance left. Yeah. I mean, he’s stuck with — what is that — $34,000. He’s on the hook for that. I mean, it’s better than having nothing, obviously, but it’s a lot of money and it’s really striking, the difference, because, you know, in Switzerland, they’re very much like, we would pay this amount, then we’ll double it to pay you back. And he still has this enormous bill he’s left paying. He’s on a fixed income. He’s retired. So it’s quite the shock to his system.

Rovner: So what happened? Has this been resolved?

Tribble: Let me first tell you what happened at the ER, because Jay was very diligent about providing documents and explaining everything. We had multiple Zoom calls. Jay’s wife was with him, and she provided the Swiss insurance card to UPMC. Now, UPMC had confirmed that there was some confusion, and it took months for Jay to get his bill. He had to call and reach out to UPMC to get his bill. He wants to pay his bill. He wants to pay his fair share, but he doesn’t consider $42,000 a fair share. So he wants to now negotiate the bill. We’ve left it at that, actually. UPMC says they are charging standard charges and that he has not requested financial assistance. And Jay says he would like to negotiate his bill.

Rovner: So that’s where we are. What is the takeaway here? Obviously, “don’t have an emergency in a country where you don’t have insurance” doesn’t feel very practical.

Tribble: Well, yeah, I mean, this was really interesting for me. I’ve been a health care reporter a long time. I’ve heard about travel insurance. The takeaway here for Jay is he would have been wise to get some travel insurance. Now, Jay did tell me previously he had tried to get Medicare. He is a U.S. citizen residing in Switzerland. He does qualify. He had worked in the U.S. long enough to qualify for it. He had gone through some phone calls and so forth and didn’t have it before coming here. He told me in the last couple of weeks that he now has gotten Medicare. However, that may not have helped him too much because it was an outpatient procedure. And it’s important to note that if you have Medicare and you’re 65 in the U.S., when you go overseas, it’s not likely to cover much. So the takeaway: Costs in the U.S. are more expensive than most places in the world, and you should be prepared if you’re traveling overseas and you find yourself in a situation, you might consider travel insurance anyway.

Rovner: So both ways.

Tribble: Yeah.

Rovner: Americans going somewhere else and people from somewhere else coming here.

Tribble: Well, if you’re a contract worker or a student on visa or somebody visiting the U.S., you’re definitely [going to] want to get some insurance because, wherever you’re coming from, most likely that insurance isn’t going to pay the full freight of what the costs are in the U.S.

Rovner: OK. Sarah Jane Tribble, thank you very much.

Tribble: Thanks so much.

Rovner: OK, we’re back, and it’s time for our extra credit segment. That’s where we each recommend a story we read this week that 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. Lauren and Joanne, you’ve already given us yours, so Jessie, you’re next.

Hellmann: Yeah. My extra credit is from MLive.com, an outlet in Michigan. It’s titled “During the Darkest Days of COVID, Some Michigan Hospitals Made 100s of Millions.” They looked at tax records, audited financial statements in federal data, and found that some hospitals and health systems in Michigan actually did really well during the pandemic, with increases in operating profits and overall net assets. A big part of this was because of the covid relief funding that was coming in, but the article noted that, despite this, hospitals were still saying that they were stretched really thin, where they were having to lay off people. They didn’t have money for PPE [personal protective equipment], and they were having to institute, like, other cost-saving measures. So I thought this was a really interesting, like, a local look at how hospitals are kind of facing a backlash now. We’ve seen it in Congress a little bit, just more of an interest in looking at their finances and how they were impacted by the pandemic, because while some hospitals really did see losses, like small, rural, or independent hospitals, some of the bigger health systems came out on top. But you’re still hearing those arguments that they need more help, they need more funding.

Rovner: Well, my story is also about a hospital system. It’s yet another piece of reporting about nonprofit hospitals failing to live up to their requirement to provide, quote, “community benefits,” by our podcast panelist at The New York Times Sarah Kliff and Jessica Silver-Greenberg. It’s called “This Nonprofit Health System Cuts Off Patients With Medical Debt.” And it’s about a highly respected and highly profitable health system based in Minnesota called Allina and its policy of cutting off patients from all nonemergency services until they pay back their debts in full. Now, nonemergency services because federal law requires them to treat patients in emergencies. It’s not all patients. It’s just those who have run up debt of at least $1,500 on three separate occasions. But that is very easy to do in today’s health system. And the policy isn’t optional. Allina’s computerized appointment system will actually block the accounts of those who have debts that they need to pay off. It is quite a story, and yet another in this long list of stories about hospitals behaving badly. 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 ever-patient producer, Francis Ying. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me, at least for now. I’m still there. I’m @jrovner. Joanne?

Kenen: @JoanneKenen

Rovner: Jessie.

Hellmann: @jessiehellmann

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Algunos médicos e investigadores que están interesados en un enfoque más individualizado para encontrar tumores problemáticos se muestran escépticos y plantean preguntas sobre los datos y el razonamiento detrás del cambio radical del Grupo de Trabajo de Servicios Preventivos de Estados Unidos con respecto a sus pautas de 2016.

“La evidencia para que todas comiencen a los 40 no es convincente”, dijo Jeffrey Tice, profesor de medicina en la Universidad de California-San Francisco.

Tice es parte del equipo de investigación del estudio WISDOM, que tiene como objetivo, en palabras de Laura Esserman, cirujana de cáncer de seno y líder del equipo, “hacer pruebas de manera más inteligente, no probar más”. Esserman lanzó el estudio en curso en 2016 con el objetivo de adaptar las pruebas de detección al riesgo de una mujer, y poner fin al debate sobre cuándo iniciar las mamografías.

Los defensores de un enfoque personalizado enfatizan los costos de la detección universal a los 40, no en dólares, sino en resultados falsos positivos, biopsias innecesarias, sobretratamiento y ansiedad.

Las pautas provienen del Grupo de Trabajo de Servicios Preventivos de Estados Unidos, parte del Departamento de Salud y Servicios Humanos (HHS) federal, un panel independiente de 16 expertos médicos voluntarios que se encargan de ayudar a guiar a los médicos, aseguradoras de salud y legisladores.

En 2009, y de nuevo en 2016, el grupo presentó el aviso actual, que elevó la edad para comenzar la mamografía de rutina de 40 a 50 años e instó a las mujeres de 50 a 74 a hacérselas cada dos años.

Las mujeres de 40 a 49 años que “le otorgan un mayor valor al beneficio potencial que a los daños potenciales” también deberían someterse al procedimiento de detección, dijo el grupo de trabajo.

Ahora, el grupo ha publicado un borrador de una actualización de sus directrices, recomendando la detección para todas las mujeres a partir de los 40 años.

“Esta nueva recomendación ayudará a salvar vidas y evitará que más mujeres mueran debido al cáncer de mama”, dijo Carol Mangione, profesora de medicina y salud pública en UCLA, quien presidió el panel.

Pero la evidencia no es clara. Karla Kerlikowske, profesora de la UCSF que ha estado investigando la mamografía desde la década de 1990, dijo que no vio una diferencia en los datos que justificara el cambio. Dijo que la única forma en que podía explicar las nuevas pautas era un cambio en el panel.

“Son diferentes miembros del grupo de trabajo”, dijo. “Interpretaron los beneficios y los daños de manera diferente”.

Sin embargo, Mangione citó dos puntos de datos como impulsores cruciales de las nuevas recomendaciones: el aumento de la incidencia de cáncer de mama en mujeres más jóvenes, y modelos que muestran la cantidad de vidas que podrían salvar las pruebas de detección, especialmente entre las mujeres negras.

No hay evidencia directa de que evaluar a mujeres de 40 años salve vidas, dijo. La cantidad de mujeres que murieron de cáncer de mama disminuyó de manera constante desde 1992 hasta 2020, debido en parte a una detección más temprana y a mejores tratamientos.

Pero los modelos predictivos que construyó el grupo de trabajo, basados en varias suposiciones en lugar de datos reales, encontraron que expandir la mamografía a mujeres de 40 años podría evitar 1.3 muertes adicionales por cada 1,000 en esa cohorte, dijo Mangione. Lo más crítico, agregó, es que un nuevo modelo que incluye solo mujeres negras mostró que se podría salvar 1.8 por 1,000.

Un aumento anual del 2% en la cantidad de personas de 40 a 49 años diagnosticadas con cáncer de mama en el país entre 2016 y 2019 alertó al grupo de trabajo sobre una tendencia preocupante, dijo.

Mangione lo llamó un “salto realmente considerable”. Pero Kerlikowske lo llamó “bastante pequeño” y Tice lo llamó “muy modesto”: percepciones contradictorias que subrayan cuánta subjetividad está involucrada en la ciencia de las pautas de salud preventiva.

A los miembros del grupo de trabajo los designa la Agencia para la Investigación y la Calidad de la Atención Médica del HHS, y cumplen mandatos de cuatro años. El nuevo borrador de las pautas está abierto para comentarios públicos hasta el 5 de junio. Después de incorporar los comentarios, el grupo de trabajo planea publicar su recomendación final en JAMA, la revista de la Asociación Médica Estadounidense.

Cerca de 300,000 mujeres serán diagnosticadas con cáncer de mama en el país este año, y morirán más de 43,000 por este mal, según proyecciones del Instituto Nacional del Cáncer. Muchos consideran que expandir la detección para incluir a mujeres más jóvenes es una forma obvia de detectar el cáncer antes y salvar vidas.

Pero los críticos de las nuevas pautas argumentan que hay verdaderas concesiones.

“¿Por qué no empezar al nacer?”, ironizó Steven Woloshin, profesor del Instituto de Políticas de Salud y Práctica Clínica de Dartmouth. “¿Por qué no todos los días?”.

“Si no hubiera inconvenientes, eso podría ser razonable”, dijo. “El problema son los falsos positivos, que dan mucho miedo. El otro problema es el sobrediagnóstico”. Algunos tumores de mama son inofensivos y el tratamiento puede ser peor que la enfermedad, enfatizó.

Tice estuvo de acuerdo en que el sobretratamiento es un problema subestimado.

“Estos cánceres nunca causarían síntomas”, dijo, refiriéndose a ciertos tipos de tumores. “Algunos simplemente retroceden, se encogen y desaparecen, son de crecimiento tan lento que una mujer muere de otra cosa antes de que causen problemas”.

Las pruebas de detección tienden a encontrar cánceres de crecimiento lento que tienen menos probabilidades de causar síntomas, dijo. Por el contrario, las mujeres a veces descubren cánceres letales de crecimiento rápido poco después de haberse realizado mamografías que salieron normales.

“Nuestro fuerte sentimiento es que una sola talla no sirve para todos y que debe personalizarse”, dijo Tice.

WISDOM, que significa “Mujeres informadas para evaluar según las medidas de riesgo”, evalúa el riesgo de las participantes a los 40 mediante la revisión de los antecedentes familiares y la secuenciación de nueve genes. La idea es comenzar con mamografías periódicas de inmediato para las mujeres de alto riesgo mientras que esperar para las de menos.

Las mujeres negras no hispanas tienen más probabilidades de hacerse mamografías de detección que las mujeres blancas no hispanas. Sin embargo, tienen un 40% más de probabilidades de morir de cáncer de seno y de que les diagnostiquen cánceres mortales a edades más tempranas.

El grupo de trabajo espera que las mujeres negras se beneficien más de la detección temprana, dijo Mangione.

No está claro por qué las mujeres negras tienen más probabilidades de sufrir cánceres de mama más letales, pero las investigaciones apuntan a disparidades en el tratamiento.

“Las mujeres negras no obtienen un seguimiento de las mamografías tan rápido ni un tratamiento adecuado tan rápido”, dijo Tice. “Eso es lo que realmente impulsa las discrepancias en la mortalidad”.

También continúa el debate sobre la detección en mujeres de 75 a 79 años. El grupo de trabajo optó por no pedir pruebas de detección de rutina en el grupo de mayor edad porque un estudio observacional no mostró ningún beneficio, dijo Mangione. Pero el panel emitió un llamado urgente para investigar si las mujeres de 75 años o más deberían hacerse una mamografía de rutina.

Los modelos sugieren que evaluar a las mujeres mayores podría evitar 2,5 muertes por cada 1,000 mujeres en ese grupo de edad, más de las que se salvarían al expandir la evaluación a las mujeres más jóvenes, apuntó Kerlikowske.

“Siempre decimos que las mujeres mayores de 75 años deberían decidir junto con sus médicos si se hacen mamografías, según sus preferencias, valores, historial familiar y de salud”, dijo Mangione.

Tice, Kerlikowske y Woloshin argumentan que lo mismo es cierto para las mujeres de 40 años.

Esta historia fue producida 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).