Así que Barton condujo 50 millas desde Osawatomie, Kansas, hasta el centro de Kansas City, Missouri, con su esposa Bridget, Gabriella, su hija de 13 años, y una amiga del colegio de la niña. Cuando por fin regresaron esa noche a casa, tuvieron que limpiar sangre de las zapatillas de Gabriella y encontraron una bala en la mochila de Bridget.

Gabriella tenía quemaduras en las piernas por los chispazos de una bala que rebotó cerca de ella, Bridget había sido pisoteada mientras protegía a su hija en medio del caos, y Jason le había practicado masajes cardíacos a un hombre herido de bala: cree que era Lyndell Mays, uno de los dos acusados de asesinato.

“Se supone que San Valentín es un día en el que nos divertimos y celebramos a nuestros afectos. Pero ya nunca habrá un San Valentín en el que no me acuerde de esto”, dijo Gabriella.

Un mes después del desfile —en el que esa crisis de salud pública que es la violencia armada en el país se transmitió por televisión en vivo— los Barton siguen impactados por el papel que les tocó en el epicentro de los acontecimientos.

Se encontraban a escasos metros de Lisa López-Galván, de 43 años, que fue asesinada. Otras 24 personas resultaron heridas. Los Barton no están incluidos en el número oficial de víctimas, sin embargo, quedaron traumatizados, física y emocionalmente, y el dolor impregna sus vidas.

Ahora, Bridget y Jason prefieren quedarse juntos en casa y siguen cancelando planes para salir; Gabriella cambió de proyecto y en vez de tomar clases de baile se anotó en un club de boxeo.

Durante el primer mes, los líderes comunitarios de Kansas City han discutido cómo atender a las personas que quedaron atrapadas bajo el fuego cruzado y cómo distribuir los más de $2 millones donados a los fondos públicos para las víctimas bajo el doloroso impacto inicial.

Hay muchas preguntas: ¿cómo compensar a las personas por los gastos en atención médica y psicológica, por los tratamientos de recuperación, por los salarios perdidos? ¿Qué ocurre con quienes padecen síntomas de estrés post traumático (TEPT), que pueden durar años? ¿Cómo hace una comunidad para identificar y atender a los heridos, que son las víctimas que a menudo se pasan por alto en los primeros informes sobre un tiroteo masivo?

Y la lista de heridos podría aumentar. Mientras investigan a cuatro de los sospechosos del tiroteo, la fiscalía y la policía de Kansas City convocan a otras víctimas a presentarse.

“En concreto, buscamos personas que hayan sufrido heridas cuando intentaban escapar y se produjo la estampida”, explicó la fiscal del condado de Jackson, Jean Peters Baker. Alguien que, “mientras huía, se cayó, se torció un tobillo, se rompió un hueso o lo pisotearon”.

Mientras tanto, las personas que se encargaron de recaudar dinero y facilitar la atención de los heridos debaten los criterios para distribuirlo. Gracias a las cuantiosas donaciones de famosos como Taylor Swift y Travis Kelce, algunas víctimas o sus familias dispondrán de cientos de miles de dólares para gastos médicos. A otras es posible que solo se les cubra la terapia.

Una investigación reciente de la Facultad de Medicina de Harvard calcula que el costo económico global de las lesiones causadas por armas de fuego en Estados Unidos asciende a $557,000 millones anuales. El 88% de ese monto se explica por la pérdida de calidad de vida de las personas heridas y sus familias. El estudio revela que, solo en el primer año, cada lesión no mortal por arma de fuego genera unos $30,000 de gastos de salud directos por superviviente.

Inmediatamente después de los tiroteos, mientras aparecían páginas como GoFundMe para ayudar a las víctimas, los ejecutivos de United Way of Greater Kansas City se reunieron para idear una respuesta colectiva de donación. Se les ocurrieron “tres círculos concéntricos de víctimas”, explicó Jessica Blubaugh, directora de Filantropía de United Way, y lanzaron la campaña #KCStrong.

“Obviamente, en el primer círculo estás las personas que sufrieron directamente el impacto de los disparos. En el siguiente círculo se encuentran los que sufrieron un impacto físico —no necesariamente de los disparos—, por ejemplo, personas que fueron pisoteadas o se rompieron un ligamento cuando estaban huyendo”, dijo Blubaugh. “Luego, en tercer lugar, están las personas que se encontraban en las inmediaciones y los transeúntes, que quedaron psicológicamente muy afectados”.

Estrés post traumático, pánico y el eco de los disparos

Bridget Barton regresó a Kansas City al día siguiente del tiroteo para entregar la bala que había encontrado en su mochila y declarar en la comisaría.

Ella no lo sabía, pero el alcalde Quinton Lucas y los jefes de policía y bomberos acababan de terminar una rueda de prensa fuera del edificio. Bridget fue acosada por los periodistas allí reunidos, entrevistas que ahora le resultan borrosas. “No sé cómo hacen esto todos los días”, recuerda que le dijo a un detective cuando por fin pudo entrar.

Mientras atraviesan el trauma, los Barton se han visto abrumados, al punto del agotamiento, por las buenas intenciones de amigos y familiares. Bridget usó las redes sociales para explicar que no ignoraba los mensajes pero que los iba respondiendo en la medida que podía. Algunos días apenas puedo mirar el teléfono, contó.

Una amiga de la familia compró nuevas mantas de Barbie para Gabriella y su amiga; las que llevaron al desfile se perdieron o estropearon. Bridget había intentado reemplazar ella misma las mantas en Walmart. Pero alguien la empujó accidentalmente y le dio un ataque de pánico. Así que abandonó el carrito y condujo de vuelta a casa.

“Estoy intentando controlar mi ansiedad”, cuenta Bridget. Eso significa que necesita terapia. Antes del desfile ya consultaba a un terapeuta y planeaba empezar la desensibilización y reprocesamiento por movimientos oculares, un método asociado al tratamiento del TEPT. Ahora, de lo primero que quiere hablar en terapia es del tiroteo.

Desde que Gabriella, alumna de 8vo grado, volvió a la escuela, tiene que lidiar con la inmadurez propia de la adolescencia: compañeros que la instan a superar lo ocurrido, que la señalan con el dedo o que incluso le dicen que debería haber sido ella la asesinada. Pero sus amigos la contienen y le preguntan cómo está. Le gustaría que más gente hiciera lo mismo con su amiga, que salió corriendo cuando empezó el tiroteo y así evitó que la hirieran. Gabriella se siente culpable por haberla llevado a lo que se convirtió en una experiencia aterradora.

“Podemos decirle todo el día: ‘No fue culpa tuya. No es tu responsabilidad’, lo mismo que yo me digo: ‘No fue culpa mía, ni mi responsabilidad'”, explica Bridget. “Pero igualmente lloré en el hombro de la madre de la otra niña diciéndole lo mucho que sentía haber agarrado primero a mi hija”.

Desde el tiroteo, las dos niñas han pasado mucho tiempo hablando. Según Gabriella, eso la ayuda a aliviar su propio estrés. También la alivia pasar tiempo con su perro y con su lagartija, maquillarse y escuchar música: la actuación del rapero Tech N9ne fue para ella un momento culminante de la celebración del Super Bowl.

Además de que las chispas le quemaron las piernas, en la estampida Gabriella cayó sobre el cemento y eso le reabrió una quemadura que tenía en el abdomen, causada por una plancha de pelo. “Cuando veo eso, me imagino a mi madre intentando protegerme y a todo el mundo corriendo”, dijo Gabriella.

Es difícil no sentirse olvidada por la gente, opina Bridget. El tiroteo, y especialmente sus sobrevivientes, han desaparecido en gran medida de los titulares excepto en las fechas de los juicios. Desde el desfile hubo otros dos tiroteos de gran repercusión en la zona. Y se pregunta si a la comunidad no le importa que ella y su familia sigan viviendo con las secuelas a diario.

“Voy a decirlo de la forma más clara posible. Estoy muy, pero muy enojada porque mi familia haya tenido que pasar por algo traumático”, se desahogaba Bridget en una reciente publicación en las redes sociales. “En realidad no quiero otra cosa [que]: ‘Tu historia también importa y queremos saber cómo te va’. ¿Lo hemos conseguido? Absolutamente no.”

¿Qué se necesita?

Ayudados en parte por famosos como Swift y Kelce, las donaciones para la familia de López-Galván, la única víctima mortal, y para otras víctimas llegaron en masa inmediatamente después del tiroteo. Swift y Kelce donaron $100,000 cada uno. Con la ayuda de un aporte inicial de $200,000 de los Kansas City Chiefs, la campaña #KCStrong de United Way alcanzó el millón de dólares en las dos primeras semanas y ahora llega a los $1,2 millones.

Se crearon seis fondos GoFundMe verificados. Uno, destinado exclusivamente a la familia López-Galván, ha recaudado más de $406,000. Otros más pequeños fueron creados por un estudiante universitario local y por fans de Swift. Las iglesias también se comprometieron y una coalición local recaudó $183,000, dinero destinado al funeral de López-Galván, a solventar la terapia para cinco víctimas y a pagar facturas médicas del hospital Children’s Mercy Kansas City, según dijo Ray Jarrett, director ejecutivo de Unite KC.

Los líderes de esta iniciativa encontraron modelos en otras ciudades. Blubaugh, de United Way, consultó a funcionarios e instituciones que habían tenido que dar respuesta a las víctimas de sus propios tiroteos masivos en Orlando (Florida), Buffalo (Nueva York) y Newtown (Connecticut).

“La desafortunada realidad es que en todo el país existen comunidades que ya se han enfrentado a tragedias como ésta, explicó Blubaugh. Así que lamentablemente hay un protocolo que, en cierto modo, ya está en marcha”.

A partir de que Blubaugh informó que el dinero de #KCStrong podría empezar a pagarse a finales de marzo, cientos de personas llamaron a la línea 211 de las organizaciones sin fines de lucro. United Way está consultando con los hospitales y las fuerzas del orden para identificar a las víctimas, y ofrecerles los servicios que puedan necesitar.

El abanico de necesidades es asombroso: varias personas siguen recuperándose en su casa, y otras necesitan apoyo emocional y psicológico. Muchas, al principio, ni siquiera fueron contabilizadas. Por ejemplo, un agente de policía que ese día vestía de civil y resultó herido. Según el jefe de policía Stacey Graves, ya se encuentra bien.

Determinar quién es elegible para recibir asistencia fue una de las primeras conversaciones que tuvieron los funcionarios de United Way cuando crearon el fondo. Y decidieron priorizar tres áreas: primero a los heridos y sus familias; segundo a servicios de salud mental y a organizaciones que ya estuvieran ayudando a las víctimas en prevención de la violencia, y en tercer lugar a los socorristas.

En concreto, los fondos se destinarán a cubrir los costos médicos o los salarios perdidos de quienes no hayan podido trabajar desde los tiroteos, explicó Blubaugh. Y agregó que si bien el objetivo es ayudar rápidamente a la gente también se debe utilizar el dinero de una manera juiciosa y estratégica.

“No tenemos una visión clara del panorama al que nos enfrentamos”, dijo Blubaugh. “No sólo no sabemos de cuánto dinero disponemos sino cuál es el panorama de las necesidades. Hacen falta ambas cosas para tomar decisiones”.

Experiencia de la violencia cotidiana en Kansas City

Jason utilizó el único día de licencia que le quedaba para quedarse en casa con Bridget y Gabriella. Como técnico de automatización nocturna, es el principal sostén de la familia. “No puedo faltar al trabajo, explicó.  Sucedió. Fue una porquería. Pero es hora de seguir adelante.”

“Es un hombre de verdad”, afirma Bridget.

La primera noche que Jason fue al trabajo, el ruido repentino de los platos al caer sobresaltó a Bridget y Gabriella, que se abrazaron llorando. “Son esos recuerdos los que nos están atormentando”, dijo Bridget, enojada.

En cierto modo, el tiroteo ha unido más a la familia que había pasado por muchas cosas recientemente: Jason sobrevivió a un ataque al corazón y a un cáncer el año pasado; y criar a un adolescente nunca es fácil.

Bridget agradece que la bala se alojara en su mochila y no la alcanzara, y que las chispas le hayan quemado las piernas a Gabriella pero que no le dispararan.

Jason está agradecido por otra razón: no ha sido un atentado terrorista, como temía al principio. En cambio, se trata del tipo de violencia armada a la que estaba acostumbrado porque creció en Kansas City, una ciudad que alcanzó su pico de muertes el año pasado. Aunque Jason nunca le había tocado tan de cerca.

“Esta basura ocurre todos los días, dijo. La única diferencia es que nosotros estábamos ahí para verlo”.

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

The Affordable Care Act was signed into law 14 years ago this week, and Health and Human Services Secretary Xavier Becerra joined KFF Health News’ Julie Rovner on this week’s “What the Health?” podcast to discuss its accomplishments so far — and the challenges that remain for the health law.

Meanwhile, Congress appears on its way to, finally, finishing the fiscal 2024 spending bills, including funding for HHS — without many of the reproductive or gender-affirming health care restrictions Republicans had sought.

This week’s panelists are Julie Rovner of KFF Health News, Mary Agnes Carey of KFF Health News, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.

Panelists

Mary Agnes Carey
KFF Health News

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Read Mary Agnes' stories.

Tami Luhby
CNN

@Luhby

Read Tami's stories.

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Among the takeaways from this week’s episode:

• The Supreme Court will hear oral arguments next week in a case that could decide whether the abortion pill mifepristone will remain easily accessible. The case itself deals with national restrictions rather than an outright ban. But, depending on how the court rules, it could have far-reaching results — for instance, preventing people from getting the pills in the mail and limiting how far into pregnancy the treatment can be used.
• The case is about more than abortion. Drug companies and medical groups are concerned about the precedent it would set for courts to substitute their judgment for that of the FDA regarding drug approvals.
• Abortion-related ballot questions are in play in several states. The total number ultimately depends on the success of citizen-led efforts to collect signatures to gain a spot. Such efforts face opposition from anti-abortion groups and elected officials who don’t want the questions to reach the ballot box. Their fear, based on precedents, is that abortion protections tend to pass.
• The Biden administration issued an executive order this week to improve research on women’s health across the federal government. It has multiple components, including provisions intended to increase research on illnesses and diseases associated with postmenopausal women. It also aims to increase the number of women participating in clinical trials.
• This Week in Medical Misinformation: The Supreme Court heard oral arguments in the case Murthy v. Missouri. At issue is whether Biden administration officials overstepped their authority when asking companies like Meta, Google, and X to remove or downgrade content flagged as covid-19 misinformation.

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

Julie Rovner: The Washington Post’s “Arizona Lawmaker Tells Her Abortion Story to Show ‘Reality’ of Restrictions,” by Praveena Somasundaram. (Full speech here.)

Alice Miranda Ollstein: CNN’s “Why Your Doctor’s Office Is Spamming You With Appointment Reminders,” by Nathaniel Meyersohn.

Tami Luhby: KFF Health News’ “Georgia’s Medicaid Work Requirement Costing Taxpayers Millions Despite Low Enrollment,” by Andy Miller and Renuka Rayasam.

Mary Agnes Carey: The New York Times’ “When Medicaid Comes After the Family Home,” by Paula Span, and The AP’s “State Medicaid Offices Target Dead People’s Homes to Recoup Their Health Care Costs,” by Amanda Seitz.

Also mentioned on this week’s podcast:

• NPR’s “Standard Pregnancy Care Is Now Dangerously Disrupted in Louisiana, Report Reveals,” by Rosemary Westwood.
• The Washington Post’s “As the Cost of Storing Frozen Eggs Rises, Some Families Opt to Destroy Them,” by Amber Ferguson.

Click to open the transcript

Transcript: The ACA Turns 14

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 21, 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: Tami Luhby of CNN.

Tami Luhby: Hello.

Rovner: And my KFF Health News colleague Mary Agnes Carey.

Mary Agnes Carey: It’s great to be here.

Rovner: Later in this episode to mark the 14th anniversary of the Affordable Care Act, we’ll have my interview with Health and Human Services Secretary Xavier Becerra, but first, this week’s news. So it appears our long national nightmare following the progress of the fiscal 2024 spending bill for the Department of Health and Human Services is nearly over, nearly halfway through the fiscal year. The White House, House, and Senate have, as far as we can tell, reached a compromise on the last tranche of spending bills, which is a good thing because the latest temporary spending bill runs out at midnight Friday. Funding for the Department of Health and Human Services, from what I’ve seen so far, is basically flat, which is a win for the Democrats because the Republicans had fought for a cut of something in the neighborhood of 22%.

Now, assuming this all happens, the House is scheduled to vote, as we speak now, on Friday at 11 a.m., leaving the Senate not very much time to avert a possible partial shutdown. Democrats seem also to have avoided adding all manner of new restrictions on reproductive and gender-affirming health care to the HHS part of the bill. It’s the last big train leaving the station likely until after the election. So Alice, we’ll get to the add-ons in a minute, but have you seen anything in the HHS funding worthy of note or did they manage to fend off everything that would’ve been significantly newsworthy?

Ollstein: Like you said, it is basically flat. It’s a small increase, less than 1% overall for HHS, and then a lot of individual programs are just completely flat, which advocacy groups argue is really a cut when you factor in inflation. The cost of providing services and buying medications and running programs and whatnot goes up. So flat funding is a cut in practice. I’m hearing that particularly from the Title X family planning folks that have had flat funding for a decade now even as demand for services and costs have gone up.

So I think that in the current environment, Democrats are ready to vote for this. They don’t want to see a shutdown. And in the House, the bill passage will depend on those Democratic votes because they are likely to lose a lot of Republicans. Republicans are mad that there weren’t deeper cuts to spending and, as you alluded to, they’re mad that they didn’t get these policy rider wins they were banking on.

Rovner: As I’ve mentioned, since this is a must-pass bill, there are always the efforts to add non-spending things to it. And on health care, apparently, the effort to add the PBM, pharmacy benefit regulation bill we’ve talked about so much failed, but lawmakers did finally get a one-year deal to extend PEPFAR, the international AIDS/HIV program. Alice, you’ve been dutifully following this since it expired last year. Remind us why it got held up and what they finally get.

Ollstein: What happened in the end is it is a one-year reauthorization that’s a so-called clean reauthorization, meaning they are not adding new anti-abortion restrictions and provisions that the Republicans wanted. So what we reported this week is, like any compromise, no one’s happy. So Republicans are upset that they didn’t get the anti-abortion restrictions they wanted, and I’ll explain more on that in a second, and Democrats are upset that this is just a one-year reauthorization. It’s the first reauthorization that’s this sort of short-term stopgap length. In the program’s decades of history, it’s always been a full five-year reauthorization up until now. But the fight over abortion and accusations that program funds were flowing to abortion providers really split Congress on this.

Even though you had mainstream leadership Republicans who were saying, “Look, we just want to reauthorize this as-is,” you had a small but very vocal contingent of hard-line anti-abortion lawmakers backed by some really influential groups like the Heritage Foundation and SBA [Susan B. Anthony Pro-Life America] who were saying, “No, we have to insist on a shorter-term reauthorization,” so that they hope Trump will be in office next year and can impose these exact same anti-abortion restrictions through executive action. So they’re basically trying to punt control of the program into what they hope is a more favorable environment, where either they’ll have the votes in Congress to make these changes and restrictions to the program or they can do it through the White House.

Rovner: So basically, the fight over PEPFAR, not over. So as I already mentioned, Saturday is the 14th anniversary of the Affordable Care Act, which you’ll hear more about in my interview with HHS Secretary Becerra, but I wanted to pose to you guys one of the questions that I posed to him. As Nancy Pelosi famously predicted, at least according to public opinion polls, the more people learned about the health law, indeed, the more they are liking it. But it still lacks the popularity and branding of big government health programs, like Medicare and Medicaid, and I think lots of people still don’t know that lots of the provisions that they like, things like letting your adult children stay on your health plan until they’re 26 or banning preexisting condition exclusions, those were things that came from the Affordable Care Act. Any theories as to why it is still so polarizing? Republicans didn’t love Medicare and Medicaid at the beginning either, so I don’t think it’s just that Republicans still talk about it.

Luhby: Part of it I think is because there are so many provisions and they’re not labeled the Affordable Care Act like Medicare is. Actually to some extent, Medicaid may not be as well known in some states because states have different Medicaid programs and different names and so do the ACA exchanges. So that’s part of it, but also, things like why do you get a free mammogram and why you get to go for a routine checkup every year; that’s not labeled as an Affordable Care Act provision, that’s just the preventive services. So I think that it would be difficult now after 14 years to bring all of that into the everyday branding by doctors and health providers. But that’s certainly what the administration and advocates are trying to do by sending out a lot of messages that list all of the benefits of the ACA.

Rovner: I will say this is the biggest full-court press I’ve seen an administration do on the ACA in quite a while. Obviously, it’s a presidential election year and it’s something that the Biden administration is proud of, but at least I would think that maybe just all the publicity might be part of their strategy. Mac, you wanted to say something.

Carey: No, absolutely. It’s going to be part of the Biden reelection campaign. They’re going to be pushing it, talking a lot about it. We have to remember we’ve had this ringside seat to all the Republican opposition to the Affordable Care Act. All the conversation about we’re going to repeal it and put something better in, former President Trump is still sending that message out to the electorate. I don’t know how much confusion, if any confusion, it creates, but to Tami’s point, you’ve got millions of people that have gotten coverage under the Affordable Care Act but millions more have benefited by all these provisions we’re talking about: the preventive care provisions, leaving adult kids up to 26 on your health insurance plan, that kind of thing.

Also, give it time. Fourteen years is a long time, but it’s not the time of Medicare, which was created in 1965, and Medicaid. So I think over time, the Affordable Care Act is part of the fabric and it will continue to be. But absolutely, for sure, President Biden is going to run on this, like you said, Julie, full-court press, talk extensively about it in the reelection campaign.

Ollstein: It makes sense that they’re leaning really hard on Obamacare as a message because, even if everyone isn’t familiar with it, a lot more people are familiar with it and like it than, polling shows, on the Biden administration’s other big health care accomplishment, which is drug price negotiation, which polling shows that most people, and even most seniors, who are the ones who are set to benefit the most, aren’t aware that it exists. And that makes sense because they’re not feeling the impact of the lower prices yet because this whole thing just started and it won’t be until 2026 that they’ll really actually experience cheaper medications. But people are already feeling the direct impact of Obamacare on their lives, and so it does make sense that they’re going to lean really hard on this.

Rovner: Of course, we went through the same thing with Obamacare, which also didn’t take full effect until, really, this is really the 10th anniversary of the full effect of the Affordable Care Act because it didn’t take effect until 2014. Tami, you wanted to add something.

Luhby: No, I was going to say it’s also the seventh anniversary of the Trump administration and congressional Republicans trying to tear apart the Affordable Care Act and repeal and replace it, which is the messaging that you’re seeing now is very similar to what you saw in 2017. It’s just surprising to me that with very intensive messaging on both sides at that time about what the Republicans saying what the problems are and the Democrats saying what all of the benefits are, — including the protections for people with preexisting conditions and the other things we’ve mentioned — that more people don’t associate those provisions with the ACA now. But the Biden administration is trying to revive all of that and remind people, as they did in 2018 in the successful midterm elections for the Democrats, that the ACA does provide a lot of the benefits that they are taking advantage of and appreciate.

Rovner: I think, in some ways, the 2017 fight was one of the best things that ever happened to the ACA in terms of helping people understand what actually was in it, because the Democrats managed to frighten people about things that they liked being taken away. Here we go again. All right, let us turn to abortion. There’s a new report out from the Guttmacher Institute that finds a dramatic jump in the use of medication abortion in 2023, the first full year since the Supreme Court reversed the nationwide right to abortion in the Dobbs [v. Jackson Women’s Health Organization] case, more than 60% of abortions use medication rather than a procedure last year. This news comes as the Supreme Court next week prepares to hear oral arguments in a case that could dramatically restrict availability of the abortion pill mifepristone. Alice, remind us what’s at stake in this case. It’s no longer whether they’re going to just outright cancel the approval.

Ollstein: That’s right. So the Supreme Court is taking up the narrowed version of this from the 5th Circuit. So what’s at stake are national restrictions on abortion pills, but not a national outright ban like you mentioned. But those restrictions could be really sweeping and really impactful. It would prevent people from getting the pills through the mail like they currently do. It would prevent people from potentially getting them in any other way other than directly from a doctor. So this would apply to red states and blue states alike. It would override abortion rights provisions in blue states that have done a lot to increase access to the pills. And it would also restrict their use back to the first seven weeks of pregnancy instead of 10, which is a big deal because people don’t often find out they’re pregnant until getting close to that line or beyond.

So this is a really big deal, and I think you can really see, especially from the flurry of amicus briefs have been filed, that anxiety about this case in the medical community and the pharmaceutical community, the scientific community, it goes way beyond the impact just on abortion. People are really worried about setting a precedent where the FDA’s scientific judgment is second-guessed by courts, and they worry that a win for the anti-abortion groups in this case would open the door to people challenging all kinds of other medications that they have an issue with: contraception, covid vaccines, HIV drugs, the list goes on and on, gender-affirming care medications, all sorts of things. So there are the bucket of potential impacts on abortion specifically, which are certainly significant, and then there’s the bigger slippery slope fears as well.

Rovner: Also, this is obviously still way political. More than just the abortion pill. It’s been a while since we’ve talked about state ballot measures. We, I think, feel like we spent all of last year talking about abortion state ballot measures. Alice, catch us up real quick on where we are. How many states have them? And what is this campaign against, by the anti-abortion people, to try to prevent them from getting on the ballot?

Ollstein: Check me if I’m wrong, but I don’t believe we know for sure about, especially the states that have citizen-led ballot initiatives where people are gathering signatures. So Florida had one of the earliest deadlines and they did meet their signature threshold. But they are now waiting on the state Supreme Court to say whether or not they have a green light to go forward this fall. A lot of other states are still collecting signatures. I think the only states we know for sure are the ones where the state legislature is the one that is ordering it to be put on the ballot, not regular citizens gathering signatures.

We still don’t know, but things are moving forward. I was just in Arizona reporting on their efforts. Things are moving forward there. Things are moving forward in Montana. They just got a court ruling in their favor to put something on the ballot. And things are moving forward in Missouri, a lot of places. So this could be really huge. Of course, like you mentioned, anti-abortion groups and anti-abortion elected officials are doing a lot of different things to try to prevent this from going on the ballot.

It’s interesting, you heard arguments over the last couple years against this being more along the lines of, “Oh, this is allowing these out-of-state big-money groups to swoop in and mislead and tell us what to do,” and those were the anti-abortion arguments against allowing people to vote on this directly. Now, you’re hearing, I’m hearing, more arguments along the lines of, “This shouldn’t be something subject to a popular vote at all. We shouldn’t put this up for a vote at all.” They consider this a human rights issue, and so I think that’s a really interesting evolution as well, particularly when the fall of Roe [v. Wade] was celebrated for returning the question of abortion access to the people, but maybe not these people specifically.

Rovner: I’ve been interested in seeing some of these anti-abortion groups trying to launch campaigns to get people not to put signatures on petitions. That’s moving it back a step I don’t think I’d ever seen. I don’t think I’ve ever seen a campaign to say, “Don’t sign the petition that would put this on the ballot to let people vote on it.” But that’s what we’re seeing, right?

Ollstein: Well, that’s what I went to Arizona to see firsthand is how that’s working, and it’s fascinating. They really worry that if it gets on the ballot, it’ll pass. It has in every state so far, so it’s reasonable for them to assume that. So they’re trying to prevent it from getting on the ballot. The way they’re doing that is they’re tracking the locations of signature gatherers and trying to go where they are and trying to intervene and hold up signs. I saw this firsthand. I saw it at a street fair. People were gathering signatures and several anti-abortion demonstrators were standing right in front of them with big signs and trying to argue with people and deter them from signing. It was not working, from what I observed. And from the overall signature count statewide, it was not working in Arizona. But it’s fascinating that they’re trying this.

Carey: I was going to say just our reporting from our KFF Health News colleagues found that 13 states are weighing abortion-related ballot measures, most of which would protect abortion rights. To your point, the scope is pretty extensive. And for all the reasons Alice just discussed, it’s quite the issue.

Rovner: Yeah, and we will obviously talk more about this as the election gets closer. I know we talk about Texas a lot on this podcast, but this week, I want to highlight a study from next door in Louisiana, also a very strong anti-abortion state. A new report from three groups, all of which support abortion rights, charges that, as in Texas, women with pregnancy complications are being forced to wait for care until their conditions become critical. And in some cases, women with nonviable pregnancies are being forced to have C-section surgery because their doctors don’t dare use medication or other less-risky procedures in case they could be accused of performing an abortion.

At some point, you have to think that somebody is going to have a malpractice case. Having a C-section because your doctor is afraid to terminate a nonviable pregnancy seems like pretty dangerous and rather aggressive way to go. This is the first I’ve ever heard of this. Alice, have you heard anything about this?

Ollstein: Not the C-section statistics specifically, but definitely the delays in care and some of the other impacts described in that report have absolutely been reported in other states and in legal challenges that have come up in Texas, in Oklahoma, in Tennessee, in Idaho by people who were denied abortions and experienced medical harms because of it. So I think that fits into the broader pattern. And it’s just more evidence about how this is having a chilling effect on doctors. And the exact letter of the law may be one thing, and you have elected officials pointing to exemptions and provisions in the law, but the chilling effect, the fear and the confusion in the medical community, is something in addition to that.

Rovner: As we put it out before, doctors have legitimate fears even if they don’t want to get dragged into court and have to hire lawyers and take time off — even if they’re innocent, even if they have what they consider to be pretty strong evidence that whatever it was that they did was legitimate under the law in terms of taking care of pregnant women. A lot of them, they don’t want to come under scrutiny, let’s put it that way, and it is hard to blame them about that.

Meanwhile, the backlash over the Alabama Supreme Court decision that fertilized embryos for IVF have legal rights is continuing as blue states that made themselves safe spaces for those seeking abortion are now trying to welcome those seeking IVF. Anybody think this is going to be as big a voting issue as abortion this fall? It’s certainly looking like those who support IVF, including some Republicans, are trying to push it.

Carey: I would think yes, it absolutely will be because it has been brought into the abortion debate. The actual Alabama issue is about an Alabama law and whether or not this particular, the litigants who sued were … it was germane and covered by the law, but it’s been brought into the abortion issue. The whole IVF thing is so compelling, about storage of the embryos and what people have to pay and all the restrictions around it and some of the choices they’re making. I guess that you could say more people have been touched by IVF perhaps than the actual abortion issue. So now, it’s very personal to them and it’s been elevated, and Republicans have tried to get around it by saying they support it, but then there’s arguments that whether or not that’s a toothless protection of IVF. It came out of nowhere I think for a lot of politicians and they’ve been scrambling and trying to figure it out. But to your point, Julie, I do wonder if it will be elevated in the election. And it was something they didn’t think they’d have to contend with, rather, and now they do.

Rovner: Obviously, it’s an issue that splits the anti-abortion community because now we’ve had all these very strong pro-lifers like Mike Pence saying, “I created my family using IVF.” Nikki Haley. There are a lot of very strong anti-abortion Republicans who have used IVF. So you’ve got some on the far … saying, “No, no, no, you can’t create embryos and then destroy them,” and then you’ve got those who are saying, “But we need to make sure that IVF is still available to people. If we’re going to call ourselves pro-life, we should be in favor of people getting pregnant and having babies, which is what IVF is for.” Alice, I see you nodding your head.

Ollstein: Yeah. So we’re having sort of a frustrating discourse around this right now because Democrats are saying, “Republicans want to ban IVF.” And Republicans are saying, “No, we don’t. We support IVF. We love IVF. IVF is awesome.” And neither is totally accurate. It’s just missing a lot of nuance. Republicans who say they support IVF also support a lot of different kinds of restrictions on the way it’s currently practiced. So they might correctly argue that they don’t want to ban it entirely, but they do want it practiced in a different way than it is now, such as the production of many embryos, some of which are discarded. So I think people are just not being asked the right questions right now. I think you got to get beyond, “Do you support IVF?” That gives people a way to dodge. I think you really have to drill into, “OK. How specifically do you want this regulated and what would that mean for people?”

Carey: Right, and the whole debate with some of the abortion rights opponents, some of them want the federal government to regulate it. Mike Johnson, speaker of the House, has come out and said, “No, no, that can be done at the state level.” So they’ve got this whole split internally in the party that is, again, a fight they didn’t anticipate.

Rovner: Well, Mac, something that you alluded to that I was struck by was a piece in The Washington Post this week about couples facing increasing costs to store their IVF embryos, often hundreds of dollars a year, which is forcing them to choose between letting the embryos go or losing a chance to possibly have another child. It’s obviously a big issue. I’m wondering what the anti-IVF forces think about that. As we’ve seen in Alabama, it’s not like you can just pick your embryos up in a cooler and move them someplace else. Moving them is actually a very big deal.

I don’t wish to minimize this, but I remember you have storage units for things, not obviously for embryos. One of the ways that they make money is that they just keep raising the cost because they think you won’t bother to move your things, so that you’ll just keep paying the increased cost. It feels like that’s a little bit of what’s happening here with these stored embryos, and at some point, it just gets prohibitively expensive for people to keep them in storage. I didn’t realize how expensive it was.

Carey: They’re all over the place. In preparing for this discussion, I’ve read things about people are paying $600 a year, other people are paying $1,200 a year. There’s big jumps from year to year. It can be an extremely expensive proposition. Oh, my goodness.

Rovner: IVF itself, I think as we’ve mentioned, is also extremely expensive and time-consuming, and emotionally expensive. It is not something that people enter into lightly. So I think we will definitely see more as we go. There’s also women’s health news this week that doesn’t have to do with reproduction. That’s new. Earlier this week, President Biden issued an executive order attempting to ensure that women are better represented in medical research. Tami, what does this order do and why was it needed?

Luhby: Well, it’s another attempt by the Biden administration, as we’ve discussed, to focus on reproductive health and reproductive rights. During the State of the Union address earlier this month, Biden asked Congress to invest $12 billion in new funding for women’s health research. And there are actually multiple components to the executive order, but the big ones are that it calls for supporting research into health and diseases that are more likely to occur midlife for women after menopause, such as rheumatoid arthritis, heart attacks, osteoporosis, and as well as ways to improve the management of menopause-related issues.

We are definitely seeing that menopause care is of increasing focus in a multitude of areas including employer health insurance, but the executive order also aims to increase the number of women participating in clinical trials since they’re poorly represented now. We know that certain medications and certain treatments have different effects on women than men, but we don’t really know that that well because they’re not as represented in these clinical trials. Then it also directs agencies to develop and strengthen research and data standards on women’s health across all of the relevant research and funding opportunities in the government.

Rovner: I’ll say that this is an issue I have very strong feelings about because I covered the debate in 1992 about including women in medical research. At the time, doctors didn’t want to have women in clinical trials because they were worried about hormones, and they might get pregnant, and we wouldn’t really know what that meant for whatever it was that we were testing. Someone suggested that “If you’re going to use these treatments and drugs on women, maybe you should test them on women too.” Then I won an award in 2015 for a story about how they still weren’t doing it, even though it was required by laws.

Carey: And here we are, 2024.

Rovner: Yeah, here we are. It just continues, but at least they’re trying. All right, finally, this week in medical misinformation, we travel to the Supreme Court, where the justices heard oral arguments in a case brought by two Republican state attorneys general charging that the Biden administration, quote, “coerced” social media platforms, Google, Meta, and X, into downgrading or taking down what public health officials deemed covid disinformation. I didn’t listen to the arguments, but all the coverage I saw suggested that the justices were not buying what the attorneys general were selling.

Yet another public-health-adjacent case to watch for a decision later this spring, but I think this is really going to be an important one in terms of what public officials can and cannot do using their authority as public health officials. We’re obviously in a bit of a public health trust crisis, so we will see how that goes.

All right, that is the news for this week. Now, we will play my interview with HHS Secretary Xavier Becerra, then we will be back with our extra credits.

I am so pleased to welcome back to the podcast Health and Human Services Secretary Xavier Becerra. I’ve asked him to join us to talk about the Affordable Care Act, which was signed into law 14 years ago this weekend. Mr. Secretary, thanks so much for coming back.

Xavier Becerra: Julie, great to be with you on a great week.

Rovner: So the Affordable Care Act has come a long way, not just in the 14 years since President Obama signed it into law, but in the 10 years since the healthcare.gov website so spectacularly failed to launch, but this year’s enrollment setting a record, right?

Becerra: That’s right, and you should have said, “You’ve come a long way, baby.”

Rovner: So what do we know about this year’s enrollment numbers?

Becerra: Another record breaker. Julie, every year that President Biden has been in office, we have broken records. Today, more Americans have health insurance than ever in the history of the country. More than 300 million people can now go to a doctor, leave their child in a hospital and know they won’t go bankrupt because they have their own health insurance. That’s the kind of peace of mind you can’t buy. Some 21.5 million Americans today look to the marketplace on the Affordable Care Act to get their coverage. By the way, the Affordable Care Act overall, some 45 million Americans today count on the ACA for their health care insurance, whether it’s through the marketplace, through Medicaid, or some of these basic plans that were also permitted under the ACA.

Rovner: Obviously, one of the reasons for such a big uptake is the expanded subsidies that were extended by the Inflation Reduction Act in 2022, but those expire at the end of next year, the end of 2025. What do you think would happen to enrollment if they’re not renewed?

Becerra: Well, and that’s the big question. The fact that the president made health care affordable was the big news. Because having the Affordable Care Act was great, but if people still felt it was unaffordable, they wouldn’t sign on. They now know that this is the best deal in town and people are signing up. When you can get health insurance coverage for $10 or less a month in your premiums, that’s a great deal. You can’t even go see a movie at a theater today for under $10. Now, you can get health care coverage for a full month, Julie. Again, as I always tell people, that doesn’t even include the popcorn and the refreshment at the movie theater, and so it’s a big deal. But without the subsidies, some people would still say, “Ah, it’s still too expensive.” So that’s why the president in his budget calls for extending those subsidies permanently.

Rovner: So there are still 10 states that haven’t taken up the federal government’s offer to pay 90% of the costs to expand Medicaid to all low-income adults in their states. I know Mississippi is considering a bill right now. Are there other states that you expect could join them sometime in the near future? Or are any of those 10 states likely to join the other 40?

Becerra: We’re hoping that the other 10 states join the 40 that have come on board where millions of Americans today have coverage. They are forsaking quite a bit of money. I was in North Carolina recently where Gov. [Roy] Cooper successfully navigated the passage of expansion for Medicaid. Not only was he able to help some 600,000-plus North Carolinians get health coverage, but he also got a check for $1.6 billion as a bonus. Not bad.

Rovner: No, not bad at all. So many years into this law, I feel like people now understand a lot of what it did: let adult children stay on their parents’ health plans until the age of 26; banning most preexisting condition exclusions in health coverage. Yet most people still don’t know that those provisions that they support were actually created by Obamacare or even that Obamacare and the Affordable Care Act are the same thing. Medicare has had such great branding success over the years. Why hasn’t the ACA?

Becerra: Actually, Julie, I think that’s changing. Today, about two-thirds of Americans tell you that they support the marketplaces in the Affordable Care Act. I think we’re actually now beginning an era where it’s no longer the big three, where you had Social Security, Medicare, and Medicaid and everyone protects those. Today, I think it’s the big four, the cleanup hitter being marketplace. Today, you would find tens of millions of Americans who would say, “Keep your dirty, stinking hands off of my marketplace.”

Rovner: Well, we will see as that goes forward. Obviously, President Biden was heavily involved in the development of the Affordable Care Act as vice president, as were you as a member of the House Ways and Means Committee at the time. What do you hope is this administration’s biggest legacy to leave to the health law?

Becerra: Julie, I think it’s making it affordable. The president made a commitment when he was first running to be president. He said on health care he was going to make it more affordable for more Americans with better benefits, and that’s what he’s done. The ACA is perfect proof. And Americans are signing up and signaling they agree by the millions. To go from 12 million people on the Affordable Care Act marketplace to 21.5 million in three years, that’s big news.

Rovner: So if I may, one question on another topic. Next week, the Supreme Court’s oral arguments occur in the case it could substantially restrict the availability of the abortion pill mifepristone. Obviously, this is something that’s being handled by the Justice Department, but what is it about this case that worries you most as HHS secretary, about the potential impact if the court rolls back FDA approval to the 2016 regulations?

Becerra: Well, Julie, as you well know from your years of covering health care, today there are Americans who have less protection, fewer rights, than many of us growing up. My daughters, my three daughters today, have fewer protections and access to health care than my wife had when she was their age. That’s not the America most of us know. To see another case where, now, medication abortion, which is used by millions of Americans — in fact, it’s the most common form of care that is received by a woman who needs to have abortion services — that is now at stake. But we believe that if the Supreme Court believes in science and it believes in the facts, because mifepristone has been used safely and effectively publicly for more than 20 years, that we’re going to be fine.

The thing that worries me as much, not just in the reduction of access to care for women in America, is the fact that mifepristone went through a process at the FDA similar to scores and scores of other medications that Americans rely on, that have nothing to do with abortion. And if the process is shut down by the Supreme Court for mifepristone, then it’s probably now at risk for all those other drugs, and therefore those other drugs that Americans rely on for diabetes, for cancer, who knows what, might also be challenged as not having gone through the right process.

Rovner: I know the drug industry is very, very worried about this case and watching it closely, and so will we. Mr. Secretary, thank you so much for joining us.

Becerra: Always good to be with you, Julie.

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

Luhby: OK, my extra credit this week is an article about Georgia’s unique Medicaid program from KFF Health News’ Andy Miller and Renuka Rayasam. It’s titled “Georgia’s Medicaid Work Requirement Costing Taxpayers Millions Despite Low Enrollment.” And I’m really glad they did this story. I and many others wrote about Georgia launching this program initially but haven’t done follow-up. So I was very happy to see this story.

As many of our listeners probably know, the Trump administration allowed multiple states to impose work requirements in Medicaid for the first time in the program’s history in 2018. But the efforts were eventually stopped by the courts in all states except Georgia. Georgia was allowed to proceed with adding its work requirement to Medicaid because it was actually going to expand coverage to allowing adults with incomes up to 100% of the poverty line to qualify. So the Georgia Pathways to Coverage initiative began last June.

Andy and Renuka took a look at how it’s faring, and the answer is actually not so well. Only about 3,500 people have signed up, far short of the 25,000 that the state projected for the first year. What’s more, the program has cost taxpayers at least $26 million so far, with more than 90% of that going towards administrative and consulting costs rather than actual medical care for low-income people.

By contrast, expanding Medicaid under the Affordable Care Act to people with 138% of the poverty line would make at least 359,000 uninsured Georgia residents newly eligible for coverage and reduce state spending by $710 million over two years. That’s what the advocates are pushing. So we’ll see what happens in coming months. One thing that’s also noted in the story is that about 45% of Pathways applications were still waiting to be processed.

Rovner: I will point out that we did talk a couple of weeks ago about the low enrollment in the Georgia program. What we had not seen was how much it’s actually costing the states per enrollee. So it is really good story. Alice, why don’t you go next?

Ollstein: Yeah, so I have some very relatable news from CNN. It’s called “Why Your Doctor’s Office Is Spamming You With Appointment Reminders.” It’s about why we all get so many obnoxious repeat reminders for every medical appointment. It both explains why medical practices that operate on such a tiny profit margin are so anxious about no-shows and last-minute cancellations, and so that’s part of it. But also part of it is that there are all these different systems that don’t communicate with one another. So the prescription drug system and the electronic medical records system and the doctor’s office’s own system are all operating in parallel and not coordinating with one another, and that’s why you get all these annoying multiple reminders. The medical community is becoming aware that it’s backfiring because the more you get, the more you start tuning them out and you don’t pay attention to which ones might be important. So they are working on it. So a somewhat hopeful piece of news.

Rovner: Raise your hand if you have multiple patient portals that you have to deal with for your multiple …

Ollstein: Oh, my God, yes.

Rovner: I will note that everybody’s hands go up. Mac?

Carey: I have not one but two stories on a very important issue: Medicaid estate recovery. The first is from Paula Span at The New York Times. The headline says it all, “When Medicaid Comes After the Family Home.” And the second story is an AP piece by Amanda Seitz, and that’s titled “State Medicaid Offices Target Dead People’s Homes to Recoup Their Health Care Costs.” Now, these stories are both about a program that’s been around since 1993. That’s when Congress mandated Medicaid beneficiaries over the age of 55 that have used long-term care services, and I’m talking about nursing homes or home care, that states must try to recover those expenses from the beneficiaries’ estates after their deaths.

As you can imagine, this might be a problem for the beneficiaries. They might have to sell a family home, try to find other ways to pay a big bill from Medicaid. Rep. Jan Schakowsky, she’s a Democrat of Illinois, has reintroduced her bill. It’s called the Stop Unfair Medicaid Recoveries Act. She’s trying to end the practice. She thinks it’s cruel and harmful, and her argument is, in fact, the federal and state governments spend way more than what they collect, and these collections often go after low-income families that can’t afford the bill anyway.

So even though it’s been around, it’s important to read up on this. A critical point in the stories was do states properly warn people that assets were going to be recovered if they enroll a loved one in Medicaid for long-term care and so on. So great reading, people should bone up on that.

Rovner: This is one of those issues that just keeps resurfacing and doesn’t ever seem to get dealt with. Well, my story this week is from The Washington Post, although I will say it was covered widely in dozens of outlets. It’s called “Arizona Lawmaker Tells Her Abortion Story to Show ‘Reality’ of Restrictions.” On Monday, Arizona State Sen. Eva Birch stood up on the Senate floor and gave a speech unlike anything I have ever seen. She’s a former nurse at a women’s health clinic. She’s also had fertility issues of her own for at least a decade, having both had a miscarriage and an abortion for a nonviable pregnancy in between successfully delivering her two sons.

Now, she’s pregnant again, but with another nonviable pregnancy, which she plans to terminate. Her point in telling her story in public on the Senate floor, she said, was to underscore how cruel — her words — Arizona’s abortion restrictions are. She’s been subject to a waiting period, required to undergo an invasive transvaginal ultrasound to obtain information she and her doctor already knew about her pregnancy, and to listen to a lecture on abortion, quote, “alternatives,” like adoption, which clearly don’t apply in her case.

While she gave the speech on the floor, several of her Democratic colleagues stood in the camera shot behind her, while many of the Republicans reportedly walked out of the chamber. I will link to the story, but I will also link to the entire speech for those who want to hear it.

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

Carey: I’m hanging out on X, @MaryAgnesCarey.

Rovner: Alice?

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

Rovner: Tami?

Luhby: The best place to find me is at cnn.com.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The general election campaign for president is (unofficially) on, as President Joe Biden and former President Donald Trump have each apparently secured enough delegates to become his respective party’s nominee. And health care is turning out to be an unexpectedly front-and-center campaign issue, as Trump in recent weeks has suggested he may be interested in cutting Medicare and taking another swing at repealing and replacing the Affordable Care Act.

Meanwhile, the February cyberattack of Change Healthcare, a subsidiary of insurance giant UnitedHealth Group, continues to roil the health industry, as thousands of hospitals, doctors, nursing homes, and other providers are unable to process claims and get paid.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Joanne Kenen of Johns Hopkins University and Politico Magazine, and Margot Sanger-Katz of The New York Times.

Panelists

Anna Edney
Bloomberg

@annaedney

Read Anna's stories.

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's articles.

Margot Sanger-Katz
The New York Times

@sangerkatz

Read Margot's stories.

Among the takeaways from this week’s episode:

• It is unclear exactly what Trump meant in his recent remarks about possible cuts to Medicare and Social Security, though his comments provided an opening for Biden to pounce. By running as the candidate who would protect entitlements, Biden could position himself well, particularly with older voters, as the general election begins.
• Health care is shaping up to be the sleeper issue in this election, with high stakes for coverage. The Biden administration’s expanded subsidies for ACA plans are scheduled to expire at the end of next year, and the president’s latest budget request highlights his interest in expanding coverage, especially for postpartum women and for children. Plus, Republicans are eyeing what changes they could make should Trump reclaim the presidency.
• Meanwhile, Republicans are grappling with an internal party divide over access to in vitro fertilization, and Trump’s mixed messaging on abortion may not be helping him with his base. Could a running mate with more moderate perspectives help soften his image with voters who oppose abortion bans?
• A federal appeals court ruled that a Texas law requiring teenagers to obtain parental consent for birth control outweighs federal rules allowing teens to access prescription contraceptives confidentially. But concerns that if the U.S. Supreme Court heard the case a conservative-majority ruling would broaden the law’s impact to other states may dampen the chances of further appeals, leaving the law in effect. Also, the federal courts are making it harder to file cases in jurisdictions with friendly judges, a tactic known as judge-shopping, which conservative groups have used recently in reproductive health challenges.
• And weeks later, the Change Healthcare hack continues to cause widespread issues with medical billing. Some small providers fear continued payment delays could force them to close, and it is possible that the hack’s repercussions could soon block some patients from accessing care at all.

Also this week, Rovner interviews Kelly Henning of Bloomberg Philanthropies about a new, four-part documentary series on the history of public health, “The Invisible Shield.”

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

Julie Rovner: The Washington Post’s “Navy Demoted Ronny Jackson After Probe Into White House Behavior,” by Dan Diamond and Alex Horton.

Joanne Kenen: The Atlantic’s “Frigid Offices Might Be Killing Women’s Productivity,” by Olga Khazan.

Margot Sanger-Katz: Stat’s “Rigid Rules at Methadone Clinics Are Jeopardizing Patients’ Path to Recover From Opioid Addiction,” by Lev Facher.

Anna Edney: Scientific American’s “How Hospitals Are Going Green Under Biden’s Climate Legislation,” by Ariel Wittenberg and E&E News.

Also mentioned on this week’s podcast:

• KFF Health News’ “Energy-Hog Hospitals: When They Start Thinking Green, They See Green,” by Julie Appleby.
• Stat’s “The War on Recovery: How the U.S. Is Sabotaging Its Best Tools to Prevent Deaths in the Opioid Epidemic,” by Lev Facher.

Click to open the transcript

Transcript: Maybe It’s a Health Care Election After All

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 14, at 10 a.m. Happy Pi Day, everyone. As always, news happens fast and things might have changed by the time you hear this, so here we go. We are joined today via video conference by Margot Sanger-Katz of The New York Times.

Margot Sanger-Katz: Good morning, everybody.

Rovner: Anna Edney of Bloomberg News.

Anna Edney: Hi there.

Rovner: And Joanne Kenen of the Johns Hopkins University and Politico Magazine.

Joanne Kenen: Hey, everyone.

Rovner: Later in this episode we’ll have my interview with Dr. Kelly Henning, head of the public health program at Bloomberg Philanthropies. She’ll give us a preview of the new four-part documentary series on the history of public health called “The Invisible Shield;” It premieres on PBS March 26. But first this week’s news. We’re going to start here in Washington with the annual State of the Union / budget dance, which this year coincides with the formal launch of the general election campaign, with both President Biden and former President Donald Trump having clinched their respective nominations this week.

Despite earlier claims that this year’s campaign would mostly ignore health issues, that’s turning out not so much to be the case. Biden in his speech highlighted reproductive health, which we’ll talk about in a minute, as well as prescription drug prices and the Affordable Care Act expansions. His proposed budget released on Monday includes suggestions of how to operationalize some of those proposals, including expanding Medicare’s drug negotiating powers. Did anything in particular in the speech or the budget jump out at any of you? Anything we weren’t expecting.

Edney: I wouldn’t say there was anything that I wasn’t expecting. There were things that I was told I should not expect and that I feel like I’ve been proven right, and so I’m happy about that, and that was the Medicare drug price negotiation. I thought that that was a win that he was going to take a lap on during the State of the Union, and certainly he did. And he’s also talking about trying to expand it, although that seems to face an extremely uphill battle, but it’s a good talking point.

Rovner: Well, and of course the expanded subsidies from the ACA expire at the end of next year. I imagine there’s going to be enough of a fight just to keep those going, right?

Edney: Yeah, certainly. I think people really appreciate the subsidies. If those were to go away, then the uninsured rate could go up. It’s probably an odd place in a way for Republicans, too, who are talking about, again, still in some circles, in some ways, getting rid of Obamacare. We’re back at that place even though I don’t think anyone thinks that’s entirely realistic.

Rovner: Oh, you are anticipating my next question, which is that former President Trump, who is known for being all over the place on a lot of issues, has been pretty steadfast all along about protecting Medicare and Social Security, but he’s now backing away from even that. In an interview on CNBC this week, Trump said, and I’m quoting, “There is a lot you can do in terms of entitlements in terms of cutting” — which his staff said was referring to waste and fraud, but which appears to open that up as a general election campaign issue. Yes, the Biden people seem to be already jumping on it.

Sanger-Katz: Yes. They could not be more excited about this. I think this has been an issue that Biden has really wanted to run on as the protector of these programs for the elderly. He had this confrontation with Congress in the State of the Union last year, as you may remember, in which he tried to get them to promise not to touch these programs. And I think his goal of weaponizing this issue has been very much hindered by Trump’s reluctance to take it on. I think there are Republicans, certainly in Congress, and I think that we saw during the presidential primary some other candidates for president who were more interested in rethinking these programs and concerned about the long-term trajectory of the federal deficit. Trump has historically not been one of them. What Trump meant exactly, I think, is sort of TBD, but I think it does provide this opening. I’m sure that we’ll see Biden talking about this a lot more as the campaign wears on and it wouldn’t surprise me at all to see this clip in television ads and featured again and again.

Kenen: So it’s both, I mean, it’s basically, he’s talked about reopening the repeal fight as Julie just mentioned, which did not go too well for the Republicans last time, and there’s plenty to cut in Medicare. If you read the whole quote, he does then talk about fraud and abuse and mismanagement, but the soundbite is the soundbite. Those are the words that came out of his mouth, whether he meant it that way or not, and we will see that campaign ad a lot, some version of it.

Rovner: My theory is that he was, and this is something that Trump does, he was on CNBC, he knew he was talking to a business audience, and he liked to say what he thinks the audience wants to hear without — you would think by now he would know that speaking to one audience doesn’t mean that you’re only speaking to that one audience. I think that’s why he’s all over the place on a lot of issues because he tends to tailor his remarks to what he thinks the people he is speaking directly to want to hear. But meanwhile, Anna, as you mentioned, he’s also raised the specter of the Affordable Care Act repeal again.

Sanger-Katz: I do think the juxtaposition of the Biden budget and State of the Union and these remarks from Trump, who now is officially the presumptive nominee for president, I think it really does highlight that there are pretty high stakes in health care for this election. I think it’s not been a focus of our discussion of this election so far. But Julie, you’ve mentioned the expiration of these subsidies that have made Affordable Care Act plans substantially more affordable for Americans and substantially more appealing, nearly doubling the number of people who are enrolled in these plans.

That is a policy that is going to expire at the end of next year. And so you could imagine a scenario, even if Trump did not want to repeal the Affordable Care Act, which he does occasionally continue to make noises about, where that could just go away through pure inertia if you didn’t have an administration that was actively trying to extend that policy and you could see a real retrenchment: increases in prices, people leaving the market, potentially some instability in the marketplace itself, where you might see insurers exiting or other kinds of problems and a situation much more akin to what we saw in the Trump administration where those markets were “OK, but were a little bit rocky and not that popular.”

I think similarly for Medicare and Medicaid, these big federal health programs, Biden has really been committed to, as he says, not cutting them. The Medicare price negotiation for drugs has provided a little bit more savings for the program. So it’s on a little bit of a better fiscal trajectory, and he has these additional proposals, again, I think long shots politically to try to shore up Medicare’s finances more. So you see this commitment to these programs and certainly this commitment to — there were multiple things in the budget to try to liberalize and expand Medicaid coverage to make postpartum coverage for women after they give birth, permanently one year after birth, people would have coverage.

Right now, that’s an option for states, but it’s not required for every state. And additionally to try to, in an optional basis, make it a little easier to keep kids enrolled in Medicaid for longer, to just allow states to keep kids in for the first six years of life and then three years at a time after that. So again, that’s an option, but I think you see the Biden administration making a commitment to expand and shore up these programs, and I do think a Trump administration and a Republican Congress might be coming at these programs with a bit more of a scalpel.

Rovner: And also, I mean, one of the things we haven’t talked about very much since we’re on the subject of the campaign is that this year Trump is ready in a way that he was not, certainly not in 2016 and not even in 2020. He’s got the Heritage Foundation behind him with this whole 2025 blueprint, people with actual expertise in knowing what to turn, what to do, actually, how to manipulate the bureaucracy in a way that the first Trump administration didn’t have to. So I think we could see, in fact, a lot more on health care that Republicans writ large would like to do if Trump is reelected. Joanne, you wanted to add something.

Kenen: Yeah, I mean, we all didn’t see this year as a health care election, and I still think that larger existential issues about democracy, it’s a reprise. It’s 2020 all over again in many ways, but abortion yes, abortion is a health care issue, and that was still going …

Rovner: We’re getting to that next.

Kenen: I know, but I mean we all knew that was still going to be a ballot driver, a voter driver. But Trump, with two remarks, however, well, there’s a difference between the people at the Heritage Foundation writing detailed policy plans about how they’re going to dismantle the CDC [Centers for Disease Control and Prevention] as we currently know it versus what Trump says off the cuff. I mean, if you say to a normal person on the street, we want to divide the CDC in two, that’s not going to trigger anything for a voter. But when you start talking about we want to take away your health care subsidies and cut Medicare, so these are sort of, some observers have called them unforced errors, but basically right now, yeah, we’re in another health care election. Not the top issue — and also depending on what else goes on in the world, because it’s a pretty shaky place at the moment. By September, will it be a top three issue? None of us know, but right now it’s more of a health care election than it was shaping up to be even just a few weeks ago.

Rovner: Yeah. Well, one thing, as you said, that we all know will be a big campaign issue this fall is abortion. We saw that in the State of the Union with the gallery full of women who’d been denied abortion, IVF services, and other forms of reproductive health care and the dozens of Democratic women on the floor of the House wearing white from head to toe as a statement of support for reproductive health care. While Democrats do have some divides over how strongly to embrace abortion rights, a big one is whether restoring Roe [v. Wade] is enough or they need to go even further in assuring access to basically all manner of reproductive health care.

It’s actually the Republicans who are most on the defensive, particularly over IVF and other state efforts that would restrict birth control by declaring personhood from the moment of fertilization. Along those lines, one of the more interesting stories I saw this week suggested that Donald Trump, who has fretted aloud about how unpopular the anti-abortion position is among the public, seems less likely to choose a strong pro-lifer as his running mate this time. Remember Mike Pence came along with that big anti-abortion background. What would this mean? It’s not like he’s going to choose Susan Collins or Lisa Murkowski or some Republican that we know actually supports abortion rights. I’m not sure I see what this could do for him and who might fit this category.

Kenen: Well, I think there’s a good chance he’ll choose a woman, and we all have names at the tip of our tongues, but we don’t know yet. But yeah, I mean they need to soften some of this stuff. But Trump’s own attempt right now bragging about appointing the justices that killed Roe, at the same time, he’s apparently talking about a 15-week ban or a 16-week ban, which is very different than zero. So he’s giving a mixed message. That’s not what his base wants to hear from him, obviously. I mean, Julie, you’ll probably get to this, but the IVF thing is also pitting anti-abortion Republican against anti-abortion Republican, with Mike Pence, again, being a very good example where Mike Pence’s anti-abortion bona fides are pretty clear, but he has been public about his kids are IVF babies? I’m not sure if all of them are, but at least some of them are. So he does not think that two cells in a freezer or eight cells or 16 cells is the same to child. In his view, it’s a potential child. So yeah.

Edney: I think you can do a lot with a vice president. We see Biden has his own issues with the abortion issue and, as people have pointed out, he demurred from saying that word in the State of the Union and we see just it was recently announced that Vice President Kamala Harris is going to visit an abortion clinic. So you can appease maybe the other side, and that might be what Trump is looking to do. I think, as Joanne mentioned, his base wants him to be anti-abortion, but now you’re getting all of these fractures in the Republican Party and you need someone that maybe can massage that and help with the crowd that’s been voting on the state level, voting on more of a personal level, to keep reproductive rights, even though his base doesn’t seem to be that that’s what they want. So I feel like he may be looking to choose someone who’s very different or has some differences that he can, not acknowledge, but that they can go out and please the other side.

Rovner: Of course, the only person who really fits that bill is Nikki Haley, who is very, very strongly anti-abortion, but at least tried, not very well, but tried to say that there are other people around and they believe other things and we should embrace them, too. I can’t think of another Republican except for Nikki Haley who’s really tried to do that. Margot, you wanted to say something?

Sanger-Katz: Oh, I was just going to say that if this reporting is correct, I think it does really reflect the political moment that Trump finds himself in. I think when he was running the last time, I think he really had to convince the anti-abortion voter, the evangelical voter, to come along with him. I think they had reservations about his character, about his commitment to their cause. He was seen as someone who maybe wasn’t really a true believer in these issues. And so I think he had to do these things, like choosing Mike Pence, choosing someone who was one of them. Pre-publishing a list of judges that he would consider for the Supreme Court who were seen as rock solid on abortion. He had to convince these voters that he was the real deal and that he was going to be on their side, and I just don’t think he really has that problem to the same degree right now.

I think he’s consolidated support among that segment of the electorate and his bigger concern going into the general election, and also the primaries are over, and so his bigger concern going into the general election is how to deal with more moderate swing voters, suburban women, and other groups who I think are a little bit concerned about the extreme anti-abortion policies that have been pursued in some of these states. And I think they might be reluctant to vote for Trump if they see him as being associated with those policies. So you see him maybe thinking about how to soften his image on this issue.

Rovner: I should point out the primaries aren’t actually over, most of states still haven’t had their primaries, but the primaries are effectively over for president because both candidates have now amassed enough delegates to have the nomination.

Sanger-Katz: Yes, that’s right. And it’s not over until the convention, although I think the way that the Republicans have arranged their convention, it’s very hard to imagine anyone other than Trump being president no matter what happens.

Rovner: Yes.

Sanger-Katz: Or not being president. Sorry, being the nominee.

Rovner: Being the nominee, yes, indeed. Well, we are only two weeks away from the Supreme Court oral arguments in the abortion pill case and a little over a month from another set of Supreme Court oral arguments surrounding whether doctors have to provide abortions in medical emergencies. And the cases just keep on coming in court this week. A three-judge panel from the 5th Circuit Court of Appeals upheld in part a lower court ruling that held that Texas’ law requiring parents to provide consent before their teenage daughters may obtain prescription birth control, Trump’s federal rules requiring patient confidentiality even for minors at federally funded Title X clinics.

Two things about this case. First, it’s a fight that goes all the way back to the Reagan administration and something called the “Squeal Rule,” which I did not cover, I only read about, but it’s something that the courts have repeatedly ruled against, that Title X is in fact allowed to maintain patient privacy even for teenagers. And the second thing is that the lower court ruling came from Texas federal Judge Matthew Kacsmaryk, who also wrote the decision attempting to overturn the FDA’s approval of the abortion drug mifepristone. This one, though, we might not expect to get to the Supreme Court.

Kenen: But we’re often wrong on these kinds of things.

Rovner: Yeah, that’s true.

Kenen: I mean, things that seem based on the historical pathway that shouldn’t have gotten to the court are getting to the court and the whole debate has shifted so far to the right. An interesting aside, there is a move, and I read this yesterday, but now I’m forgetting the details, so one of you can clarify for me. I can’t remember whether they’re considering doing this or the way they’ve actually put into place steps to prevent judge-shopping.

Rovner: That’s next.

Kenen: OK, I’m sorry, I’m doing such a good job of reading your mind.

Rovner: You are such a good job, Joanne.

Kenen: But I mean so many in these cases go back to one. If there was a bingo card for reproductive lawsuits, there might be one face in it.

Rovner: Two, Judge [Reed] O’Connor, remember the guy with the Affordable Care Act.

Kenen: Right. But so much of this is going back to judge-shopping or district-shopping for the judge. So a lot of these things that we thought wouldn’t get to the court have gotten to the court.

Rovner: Yeah, well, no, I was going to say in this case, though, there seems to be some suggestion that those who support the confidentiality and the Title X rules might not want to appeal this to the Supreme Court because they’re afraid they’ll lose. That this is the Supreme Court that overturned Roe, it would almost certainly be a Supreme Court that would rule against Title X confidentiality for birth control, that perhaps they want to just let this lie. I think as it stands now it only applies to the 5th Circuit. So Texas, Louisiana, and I forget what else is in the 5th Circuit, but it wouldn’t apply around the country and in this case, I guess it’s just Texas because it’s Texas’ law that conflicts with the rules.

Kenen: Except when one state does something, it doesn’t mean that it’s only Texas’ law six months from now.

Rovner: Right. What starts in Texas doesn’t necessarily stay in Texas.

Kenen: Right, it could go to Nevada. They may decide that they have a losing case and they want to wait 20 years, but other people end up taking things — I mean, it is very unpredictable and a huge amount of the docket is reproductive health right now.

Rovner: I would say the one thing we know is that Justice Alito, when he said that the Supreme Court was going to stop having to deal with this issue was either disingenuous or just very wrong because that is certainly not what’s happened. Well, as Joanne already jumped ahead a little bit, I mentioned Judge Kacsmaryk for a specific reason. Also this week, the Judicial Conference of the United States, which makes rules for how the federal courts work, voted to make it harder to judge-shop by filing cases in specific places like Amarillo, Texas, where there’s only one sitting federal judge. This is why Judge Kacsmaryk has gotten so many of those hot-button cases. Not because kookie stuff happens all the time in Amarillo, but because plaintiffs have specifically filed suit there to get their cases in front of him. The change by the judicial conference basically sets things back to the way they used to be, right, where it was at least partly random, which judge you got when you filed a case.

Kenen: But there are also some organizations that have intentionally based themselves in Amarillo so that they’re there. I mean, we may also see, if the rules go back to the old days, we may also still say you have a better case for filing in where you actually operate. So everybody just keeps hopping around and playing the field to their advantage.

Rovner: Yeah. And I imagine in some places there’s only a couple of judges, I think it was mostly Texas that had these one-judge districts where you knew if you filed there, you were going to get that judge, so — the people who watch these things and who worry about judge-shopping seem to be heartened by this decision by the judicial conference. So I’m not someone who is an expert in that sort of thing, but they seem to think that this will deter it, if not stop it entirely.

Moving on, remember a couple of weeks ago when I said that the hack of UnitedHealth [Group] subsidiary Change Healthcare was the most undercovered story in health? Clearly, I had no idea how true that was going to become. That processes 15 billion — with a B — claims every year handles one of every three patient records is still down, meaning hospitals, doctor’s offices, nursing homes, and all other manner of health providers still mostly aren’t getting paid. Some are worrying they soon won’t be able to pay their employees. How big could this whole mess ultimately become? I don’t think anybody anticipated it would be as big as it already is.

Sanger-Katz: I think it’s affecting a number of federal programs, too, that rely on this data, like quality measurement. And it really is a reflection, first of all, obviously of the consolidation of all of this, which I know that you guys have talked about on the podcast before, but also just the digitization and interconnectedness of everything. All of these programs are relying on this billing information, and we use that not just to pay people, but also to evaluate what kind of health care is being delivered, and what quality it is, and how much we should pay people in Medicare Advantage, and on all kinds of other things. So it’s this really complex, interconnected web of information that has been disrupted by this hack, and I think there’s going to be quite a lot of fallout.

Edney: And the coverage that I’ve read we’re potentially, and not in an alarmist way, but weeks away from maybe some patients not getting care because of this, particularly at the small providers. Some of my colleagues did a story yesterday on the small cancer providers who are really struggling and aren’t sure how long they’re going to be able to keep the lights on because they just aren’t getting paid. And there are programs now that have been set up but maybe aren’t offering enough money in these no-interest loans and things like that. So it seems like a really precarious situation for a lot of them. And now we see that HHS [Department of Health and Human Services] is looking into this other side of it. They’re going to investigate whether there were some HIPAA violations. So not looking exactly at the money exchange, but what happened in this hack, which is interesting because I haven’t seen a lot about that, and I did wonder, “Oh, what happened with these patients’ information that was stolen?” And UnitedHealth has taken a huge hit. I mean, it’s a huge company and it’s just taken a huge hit to its reputation and I think …

Rovner: And to its stock price.

Edney: And it’s stock price. That is very true. And they don’t know when they’re actually going to be able to resolve all of this. I mean, it’s just a huge mess.

Rovner: And not to forget they paid $22 million in ransom two weeks ago. When I saw that, I assumed that this was going to be almost over because usually I know when a hospital gets hacked, everybody says, don’t pay ransom, but they pay the ransom, they get their material back, they unlock what was locked away. And often that ends it, although it then encourages other people to do it because hey, if you do it, you can get paid ransom. Frankly, for UnitedHealthcare, I thought $22 million was a fairly low sum, but it does not appear — I think this has become such a mess that they’re going to have to rebuild the entire operation in order to make it work. At least, not a computer expert here. But that’s the way I understand this is going on.

Kenen: But I also think this, I mean none of us are cyber experts, but I’m also wondering if this is going to lead to some kind of rethinking about alternative ways of paying people. If this created such chaos, and not just chaos, damage, real damage, the incentive to do something similar to another, intermediate, even if it’s not quite this big. It’s like, “Wait, no one wants to be the next one.” So what kind of push is there going to be, not just for greater cybersecurity, but for Plan B when there is a crisis? And I don’t know if that’s something that the cyberexperts can put together in what kind of timeline — if HHS was to require that or whether the industry just decides they need it without requirements that this is not OK. It’s going to keep happening if it’s profitable for whoever’s doing it.

Rovner: I remember, ruefully, Joanne and I were there together covering HIPAA when they were passing it, which of course had nothing whatsoever to do with medical privacy at the time, but what it did do was give that first big push to start digitizing medical information. And there was all this talk about how wonderful it was going to be when we had all this digitally and researchers could do so much with it, and patients would be able to have all of their records in one place and …

Kenen: You get to have 19 passwords for 19 different forums now.

Rovner: Yes. But in 1995 it all seemed like a great, wonderful new world of everything being way more efficient. And I don’t remember ever hearing somebody talking about hacking this information, although as I point out the part of HIPAA that we all know, the patient medical records privacy, was added on literally at the last minute because someone said, “Uh-oh, if we’re going to digitize all this information, maybe we better be sure that it doesn’t fall into the wrong hands.” So at least somebody had some idea that we could be here. What are we 20, 30 … are we 30 years later? It’s been a long time. Anyway, that’s my two cents. All right, next up, Mississippi is flirting with actually expanding Medicaid under the Affordable Care Act. It’s one of only 10 remaining states that has not extended the program to people who have very low incomes but don’t meet the so-called categorical eligibility requirements like being a pregnant woman or child or person with a disability.

The Mississippi House passed an expansion bill including a fairly stringent work requirement by a veto-proof majority last week, week before.

Kenen: I think two weeks ago.

Rovner: But even if it passed the Senate and gets signed by the governor, which is still a pretty big if, the governor is reportedly lobbying hard against it. The plan would require a waiver from the Biden administration, which is not a big fan of work requirements. On the other hand, even if it doesn’t happen, and I would probably put my money at this point that it’s not going to happen this year, does it signal that some of the most strident, holdout states might be seeing the attraction of a 90% federal match and some of the pleas of their hospital associations? Anna, I see you nodding.

Edney: Yeah, I mean it was a little surprising, but this is also why I love statehouses. They just do these unexpected things that maybe make sense for their constituents sometimes, and it’s not all the time. I thought that it seemed like they had come around to the fact that this is a lot of money for Mississippi and it can help a lot of people. I think I’ve seen numbers like maybe adding 200,000 or so to the rolls, and so that’s a huge boost for people living there. And with the work requirement, is it true that even if the Biden administration rejects it, this plan can still go into place, right?

Kenen: The House version.

Edney: The House version.

Kenen: Yes.

Edney: Yeah.

Rovner: My guess is that’s why the governor is lobbying so hard against it. But yeah.

Kenen: I mean, I think that we had been watching a couple of states, we keep hearing Alabama was one of the states that has been talking about it but not doing anything about it. Wyoming, which surprised me when they had a little spurt of activity, which I think has subsided. I mean, what we’ve been saying ever since the Supreme Court made this optional for states more than 10 years ago now. Was it 2012? We’ve been saying eventually they’ll all do it. Keeping in mind that original Medicaid in [19]65, it took until 1982, which neither Julie nor I covered, until the last state, which was Arizona, took regular Medicare, Medicaid, the big — forget the ACA stuff. I mean, Medicaid was not in all states for almost 20 years. So I think we’ve all said eventually they’re going to do it. I don’t think that we are about to see a domino effect that North Carolina, which is a purple state, they did it a few months ago, maybe a year by now.

There was talk then that, “Oh, all the rest will do it.” No, all the rest will probably do it eventually, but not tomorrow. Mississippi is one of the poorest states in the country. It has one of the lowest health statuses of their population, obesity, diabetes, other chronic diseases. It has a very small Medicaid program. The eligibility levels are even for very, very, very poor childless adults, you can’t get on their plan. But have we heard rural hospitals pushing for this for a decade? Yes. Have we heard chambers of commerce in some of these states wanting it because communities without hospitals or communities without robust health systems are not economically attractive? We’ve been hearing the business community push for this for a long time. But the holdouts are still holdouts and I do think they will all take it. I don’t think it’s imminent.

Rovner: Yeah, I think that’s probably a fair assessment.

Kenen: It makes good economic sense, I mean, you’re getting all this money from the federal government to cover poor people and keep your hospitals open. But it’s a political fight. It’s not just a …

Rovner: It’s ideology.

Kenen: Yes, it’s not a [inaudible]. And it’s called Obamacare.

Edney: And sometimes things just have to fall into place. Mississippi got a new speaker of the House in their state government, so that’s his decision to push this as something that the House was going to take up. So whether that happens in other places, whether all those cards fall into places can take more time.

Kenen: Well, the last thing is we also know it’s popular with voters because we’ve seen it on the ballot in what, seven states, eight states, I forgot. And it won, and it won pretty big in really conservative states like Idaho and Utah. So as Julie said, this is ideology, it’s state lawmakers, it’s governors, it’s not voters, it’s not hospitals, it’s not chambers of commerce. It’s not particularly rural hospitals. A lot of people think this makes sense, but their own governments don’t think it makes sense.

Rovner: Yes. Well, another of those stories that moves very, very slowly. Finally, “This Week in Medical Misinformation”: I want to call out those who are fighting back against those who are accusing them of spreading false or misleading claims. I know this sounds confusing. Specifically, 16 conservative state attorneys general have called on YouTube to correct a, quote, “context disclaimer” that it put on videos posted by the anti-abortion Alliance Defending Freedom claiming serious and scientifically unproven harms that can be caused by the abortion pill mifepristone.

Unfortunately, for YouTube, their context disclaimer was a little clunky and conflated medication and surgical abortion, which still doesn’t make the original ADF videos more accurate, just means that the disclaimer wasn’t quite right. Meanwhile, more anti-abortion states are having legal rather than medical experts try to “explain” — and I put explain in air quotes — when an abortion to save the life of a woman is or isn’t legal, which isn’t really helping clarify the situation much if you are a doctor worried about having your license pulled or, at best, ending up having to defend yourself in court. It feels like misinformation is now being used as a weapon as well as a way to mislead people. Or am I reading this wrong?

Edney: I mean, I had to read that disclaimer a few times. Just the whole back-and-forth was confusing enough. And so it does feel like we’re getting into this new era of, if you say one wrong thing against the disinformation, that’s going to be used against you. So everybody has to be really careful. And the disclaimer, it was odd because I thought it said the procedure is [inaudible]. So that made me think, oh, they’re just talking about the actual surgical abortion. But it was clunky. I think clunky is a good word that you used for it. So yeah.

Rovner: Yeah, it worries me. I think I see all of this — people who want to put out misinformation. I’m not accusing ADF of saying, “We’re going to put out misinformation.” I think this is what they’ve been saying all along, but people who do want to put out misinformation for misinformation’s sake are then going to hit back at the people who point out that it’s misinformation, which of course there’s no way for the public to then know who the heck is right. And it undercuts the idea of trying to point out some of this misinformation. People ask me wherever I go, “What are we going to do about this misinformation?” My answer is, “I don’t know, but I hope somebody thinks of something.”

Kenen: I mean, if you word something poorly, you got to fix it. I mean, that’s just the bottom line. Just like we as journalists have to come clean when we make a mistake. And it feels bad to have to write a correction, but we do it. So Google has been working on — there’s a group convened by the Institute of Medicine [National Academy of Medicine] and the World Health Organization and some others that have come out with guidelines and credible communicators, like who can you trust? I mean, we talked about the RSV [respiratory syncytial virus] story I did a few weeks ago, and if you Google RSV vaccine on and you look on YouTube or Google, it’s not that there’s zero misinformation, but there’s a lot less than there used to be. And what comes up first is the reliable stuff: CDC, Mayo Clinic, things like that. So YouTube has been really working on weeding out the disinformation, but again, for their own credibility, if they want to be seen as clean arbiters of going with credibility, if they get something mushy, they’ve got to de-mush it at the end.

Rovner: And I will say that Twitter of all places — or X, whatever you want to call it, the place that everybody now is like, “Don’t go there. It’s just a mess” — has these community notes that get attached to some of the posts that I actually find fairly helpful and it lets you rate it.

Kenen: Some of them, I mean overall, there’s actually research on that. We’ll talk about my book when it comes out next year, but we have stuff. I’m in the final stages of co-authoring a book that … it goes into misinformation, which is why I’ve learned a lot about this. Community Notes has been really uneven and …

Rovner: I guess when it pops up in my feed, I have found it surprisingly helpful and I thought, “This is not what I expect to see on this site.”

Kenen: And it hasn’t stopped [Elon] Musk himself from tweeting misinformation about drugs …

Rovner: That’s certainly true.

Kenen: … drugs he doesn’t like, including the birth control pill he tells people not to use because it promotes suicide. So basically, yeah, Julie, you’re right that we need tools to fight it, and none of the tools we currently have are particularly effective yet. And absolutely everything gets politicized.

Sanger-Katz: And it’s a real challenge I think for these social media platforms. You know what I mean? They don’t really want to be in the editorial business. I think they don’t really want to be in the moderation business in large part. And so you can see them grappling with the problem of the most egregious forms of misinformation on their platforms, but doing it clumsily and anxiously and maybe making mistakes along the way. I think it’s not a natural function for these companies, and I think it’s not a comfortable function for the people that run these companies, who I think are much more committed to free discourse and algorithmic sharing of information and trying to boost engagement as opposed to trying to operate the way a newspaper editor might be in selecting the most useful and true information and foregrounding that.

Kenen: Yeah, I mean that’s what the Supreme Court has been grappling with too, is another [inaudible] … what are the rules of the game? What should be legally enforced? What is their responsibility, that the social media company’s responsibilities, to moderate versus what is just people get to post? I mean, Google’s trying to use algorithms to promote credible communicators. It’s not that nothing wrong is there, but it’s not what you see first.

Rovner: I think it’s definitely the issue of the 2020s. It is not going away anytime soon.

Kenen: And it’s not just about health.

Rovner: Oh, absolutely. I know. Well, that is the news for this week. Now, we will play my interview with Dr. Kelly Henning of Bloomberg Philanthropies, and then we’ll come back with our extra credits.

I am so pleased to welcome to the podcast Dr. Kelly Henning, who heads the Bloomberg Philanthropies Public Health program. She’s here to tell us about a new documentary series about the past, present, and future of public health called “The Invisible Shield.” It premieres on PBS on March 26. Dr. Henning, thank you so much for joining us.

Kelly Henning: Thank you for having me.

Rovner: So the tagline for this series is, “Public health saved your life today, and you don’t even know it.” You’ve worked in public health in a lot of capacities for a lot of years, so have I. Why has public health been so invisible for most of the time?

Henning: It’s a really interesting phenomenon, and I think, Julie, we all take public health for granted on some level. It is what really protects people across the country and across the world, but it is quite invisible. So usually if things are working really well in public health, you don’t think about it at all. Things like excellent vaccination programs, clean water, clean air, these are all public health programs. But I think most people don’t really give them a lot of thought every day.

Rovner: Until we need them, and then they get completely controversial.

Henning: So to that point, covid-19 and the recent pandemic really was a moment when public health was in the spotlight very much no longer behind an invisible shield, but quite out in front. And so this seemed like a moment when we really wanted to unpack a little bit more around public health and talk about how it works, why it’s so important, and what some of the opportunities are to continue to support it.

Rovner: I feel like even before the pandemic, though, the perceptions of public health were changing. I guess it had something to do with a general anti-science, anti-authority rising trend. Were there warning signs that public health was about to explode in people’s consciousness in not necessarily a good way?

Henning: Well, I think those are all good points, but I also think that there are young generations of students who have become very interested in public health. It’s one of the leading undergraduate majors nowadays. Johns Hopkins Bloomberg School of Public Health has more applications than ever before, and that was occurring before the pandemic and even more so throughout. So I think it’s a bit of a mixed situation. I do think public health in the United States has had some really difficult times in terms of life expectancy. So we started to see declines in life expectancy way back in 2017. So we have had challenges on the program side, but I think this film is an opportunity for us to talk more deeply about public health.

Rovner: Remind people what are some of the things that public health has brought us besides, we talk about vaccines and clean water and clean air, but there’s a lot more to public health than the big headlines.

Henning: Yeah, I mean, for example, seat belts. Every day we get into our vehicle, we put a seat belt on, but I think most people don’t realize that was initially extremely controversial and actually not so easy to get that policy in place. And yet it saved literally tens of hundreds of thousands of lives across the U.S. and now across the world. So seat belts are something that often come to mind. Similar to that are things like child restraints, what we would call car seats in the U.S. That’s another similar strategy that’s been very much promoted and the evidence has been created through public health initiatives. There are other things like window guards. In cities, there are window guards that help children not fall out of windows from high buildings. Again, those are public health initiatives that many people are quite unaware of.

Rovner: How can this documentary help change the perception of public health? Right now I think when people think of public health, they think of people fighting over mask mandates and people fighting over covid vaccines.

Henning: Yeah, I really hope that this documentary will give people some perspective around all the ways in which public health has been working behind the scenes over decades. Also, I hope that this documentary will allow the public to see some of those workers and what they face, those public health front-line workers. And those are not just physicians, but scientists, activists, reformers, engineers, government officials, all kinds of people from all disciplines working in public health. It’s a moment to shine a light on that. And then lastly, I hope it’s hopeful. I hope it shows us that there are opportunities still to come in the space of public health and many, many more things we can do together.

Rovner: Longtime listeners to the podcast will know that I’ve been exploring the question of why it has been so difficult to communicate the benefits of public health to the public, as I’ve talked to lots of people, including experts in messaging and communication. What is your solution for how we can better communicate to the public all of the things that public health has done for them?

Henning: Well, Julie, I don’t have one solution, but I do think that public health has to take this issue of communication more seriously. So we have to really develop strategies and meet people where they are, make sure that we are bringing those messages to communities, and the messengers are people that the community feels are trustworthy and that are really appropriate spokespeople for them. I also think that this issue of communications is evolving. People are getting their information in different ways, so public health has to move with the times and be prepared for that. And lastly, I think this “Invisible Shield” documentary is an opportunity for people to hear and learn and understand more about the history of public health and where it’s going.

Rovner: Dr. Kelly Henning, thank you so much for joining us. I really look forward to watching the entire series. OK, we are back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Joanne, you have everybody’s favorite story this week. Why don’t you go first?

Kenen: I demanded the right to do this one, and it’s Olga, I think her last name is pronounced Khazan. I actually know her and I don’t know how to pronounce her name, but Olga Khazan, apologies if I’ve got it wrong, from The Atlantic, has a story that says “Frigid Offices Might Be Killing Women’s Productivity.” Well, from all of us who are cold, I’m not sure I would want to use the word “frigid,” but of all of us who are cold in the office and sitting there with blankets. I used to have a contraband, very small space heater hidden behind a trash basket under my desk. We freeze because men like colder temperatures and they’re wearing suits. So we’ve been complaining about being cold, but there’s actually a study now that shows that it actually hurts our actual cognitive performance. And this is one study, there’s more to come, but it may also be one explanation for why high school girls do worse than high school boys on math SATs.

Rovner: Did not read that part.

Kenen: It’s not just comfort in the battle over the thermostat, it’s actually how do our brains function and can we do our best if we’re really cold?

Rovner: True. Anna.

Edney: This is a departure from my normal doom and gloom. So I’m happy to say this is in Scientific American, “How Hospitals Are Going Green Under Biden’s Climate Legislation.” I thought it was interesting. Apparently if you’re a not-for-profit, there were tax credits that you were not able to use, but the Inflation Reduction Act changed that so that there are some hospitals, and they talked to this Valley Children’s in California, that there had been rolling blackouts after some fires and things like that, and they wanted to put in a micro-grid and a solar farm. And so they’ve been able to do that.

And health care contributes a decent amount. I think it’s like 8.5% of U.S. greenhouse gas emissions. And Biden had established this Office of Climate Change [and Health Equity] a few years ago and within the health department. So this is something that they’re trying to do to battle those things. And I thought that it was just interesting that we’re talking about this on the day that the top story, Margot, in The New York Times is, not by you, but is about how there’s this huge surge in energy demand. And so this is a way people are trying to do it on their own and not be so reliant on that overpowered grid.

Rovner: KFF Health News has done a bunch of stories about contribution to climate change from the health sector, which I had no idea, but it’s big. Margot.

Sanger-Katz: I wanted to highlight the second story in this Lev Facher series on treatment for opioid addiction in Stat called “Rigid Rules at Methadone Clinics Are Jeopardizing Patients’ Path to Recovery From Opioid Addiction,” which is a nice long title that tells you a lot about what is in the story. But I think methadone treatment is a really evidence-based treatment that can be really helpful for a lot of people who have opioid addiction. And I think what this story highlights is that the mechanics of how a lot of these programs work are really hard. They’re punitive, they’re difficult to navigate, they make it really hard for people to have normal lives while they’re undergoing methadone treatment and then, in some cases, arbitrarily so. And so I think it just points out that there are opportunities to potentially do this better in a way that better supports recovery and it supports the lives of people who are in recovery.

Rovner: Yeah, it used the phrase “liquid handcuffs,” which I had not seen before, which was pretty vivid. For those of you who weren’t listening, the Part One of this series was an extra credit last week, so I’ll post links to both of them. My story’s from our friend Dan Diamond at The Washington Post. It’s called “Navy Demoted Ronnie Jackson After Probe Into White House Behavior.” Ronnie Jackson, in case you don’t remember, was the White House physician under Presidents [Barack] Obama and Trump and a 2021 inspector general’s report found, and I’m reading from the story here, quote, “that Jackson berated subordinates in the White House medical unit, made sexual and denigrating statements about a female subordinate, consumed alcohol inappropriately with subordinates, and consumed the sleep drug Ambien while on duty as the president’s physician.” In response to the report, the Navy demoted Jackson retroactively — he’s retired —from a rear admiral down to a captain.

Now, why is any of this important? Well, mainly because Jackson is now a member of Congress and because he still incorrectly refers to himself as a retired admiral. It’s a pretty vivid story, you should really read it.

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

Sanger-Katz: I’m at all the places @Sanger-Katz, although not particularly active on any of them.

Rovner: Anna.

Edney: On X, it’s @annaedney and on Threads it’s @anna_edneyreports.

Rovner: Joanne.

Kenen: I’m Threads @joannekenen1, and I’ve been using LinkedIn more. I think some of the other panelists have said that people are beginning to treat that as a place to post, and I think many of us are seeing a little bit more traction there.

Rovner: Great. Well, we will be back in your feed next week. Until then, be healthy.

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Jason Barton didn’t want to attend the Super Bowl parade this year. He told a co-worker the night before that he worried about a mass shooting. But it was Valentine’s Day, his wife is a Kansas City Chiefs superfan, and he couldn’t afford to take her to games since ticket prices soared after the team won the championship in 2020.

So Barton drove 50 miles from Osawatomie, Kansas, to downtown Kansas City, Missouri, with his wife, Bridget, her 13-year-old daughter, Gabriella, and Gabriella’s school friend. When they finally arrived home that night, they cleaned blood from Gabriella’s sneakers and found a bullet in Bridget’s backpack.

Gabriella’s legs were burned by sparks from a ricocheted bullet, Bridget was trampled while shielding Gabriella in the chaos, and Jason gave chest compressions to a man injured by gunfire. He believes it was Lyndell Mays, one of two men charged with second-degree felony murder.

“There’s never going to be a Valentine’s Day where I look back and I don’t think about it,” Gabriella said, “because that’s a day where we’re supposed to have fun and appreciate the people that we have.”

One month after the parade in which the U.S. public health crisis that is gun violence played out on live television, the Bartons are reeling from their role at its epicenter. They were just feet from 43-year-old Lisa Lopez-Galvan, who was killed. Twenty-four other people were injured. Although the Bartons aren’t included in that official victim number, they were traumatized, physically and emotionally, and pain permeates their lives: Bridget and Jason keep canceling plans to go out, opting instead to stay home together; Gabriella plans to join a boxing club instead of the dance team.

During this first month, Kansas City community leaders have weighed how to care for people caught in the bloody crossfire and how to divide more than $2 million donated to public funds for victims in the initial outpouring of grief.

The questions are far-reaching: How does a city compensate people for medical bills, recovery treatments, counseling, and lost wages? And what about those who have PTSD-like symptoms that could last years? How does a community identify and care for victims often overlooked in the first flush of reporting on a mass shooting: the injured?

The injured list could grow. Prosecutors and Kansas City police are mounting a legal case against four of the shooting suspects, and are encouraging additional victims to come forward.

“Specifically, we’re looking for individuals who suffered wounds from their trying to escape. A stampede occurred while people were trying to flee,” said Jackson County Prosecutor Jean Peters Baker. Anyone who “in the fleeing of this event that maybe fell down, you were trampled, you sprained an ankle, you broke a bone.”

Meanwhile, people who took charge of raising money and providing services to care for the injured are wrestling with who gets the money — and who doesn’t. Due to large donations from celebrities like Taylor Swift and Travis Kelce, some victims or their families will have access to hundreds of thousands of dollars for medical expenses. Other victims may simply have their counseling covered.

The overall economic cost of U.S. firearm injuries is estimated by a recent Harvard Medical School study at $557 billion annually. Most of that — 88% — represented quality-of-life losses among those injured by firearms and their families. The JAMA-published study found that each nonfatal firearm injury leads to roughly $30,000 in direct health care spending per survivor in the first year alone.

In the immediate aftermath of the shootings, as well-intentioned GoFundMe pages popped up to help victims, executives at United Way of Greater Kansas City gathered to devise a collective donation response. They came up with “three concentric circles of victims,” said Jessica Blubaugh, the United Way’s chief philanthropy officer, and launched the #KCStrong campaign.

“There were folks that were obviously directly impacted by gunfire. Then the next circle out is folks that were impacted, not necessarily by gunshots, but by physical impact. So maybe they were trampled and maybe they tore a ligament or something because they were running away,” Blubaugh said. “Then third is folks that were just adjacent and/or bystanders that have a lot of trauma from all of this.”

PTSD, Panic, and the Echo of Gunfire

Bridget Barton returned to Kansas City the day after the shooting to turn in the bullet she found in her backpack and to give a statement at police headquarters. Unbeknownst to her, Mayor Quinton Lucas and the police and fire chiefs had just finished a press conference outside the building. She was mobbed by the media assembled there — interviews that are now a blur.

“I don’t know how you guys do this every day,” she remembered telling a detective once she finally got inside.

The Bartons have been overwhelmed by well wishes from close friends and family as they navigate the trauma, almost to the point of exhaustion. Bridget took to social media to explain she wasn’t ignoring the messages, she’s just responding as she feels able — some days she can hardly look at her phone, she said.

A family friend bought new Barbie blankets for Gabriella and her friend after the ones they brought to the parade were lost or ruined. Bridget tried replacing the blankets herself at her local Walmart, but when she was bumped accidentally, it triggered a panic attack. She abandoned her cart and drove home.

“I’m trying to get my anxiety under control,” Bridget said.

That means therapy. Before the parade, she was already seeing a therapist and planning to begin eye movement desensitization and reprocessing, a form of therapy associated with treating post-traumatic stress disorder. Now the shooting is the first thing she wants to talk about in therapy.

Since Gabriella, an eighth grader, has returned to middle school, she has dealt with the compounding immaturity of adolescence: peers telling her to get over it, pointing finger guns at her, or even saying it should have been her who was shot. But her friends are checking on her and asking how she’s doing. She wishes more people would do the same for her friend, who took off running when the shooting started and avoided injury. Gabriella feels guilty about bringing her to what turned into a horrifying experience.

“We can tell her all day long, ‘It wasn’t your fault. She’s not your responsibility.’ Just like I can tell myself, ‘It wasn’t my fault or my responsibility,’” Bridget said. “But I still bawled on her mom’s shoulder telling her how sorry I was that I grabbed my kid first.”

The two girls have spent a lot of time talking since the shooting, which Gabriella said helps with her own stress. So does spending time with her dog and her lizard, putting on makeup, and listening to music — Tech N9ne’s performance was a highlight of the Super Bowl celebration for her.

In addition to the spark burns on Gabriella’s legs, when she fell to the concrete in the pandemonium she split open a burn wound on her stomach previously caused by a styling iron.

“When I see that, I just picture my mom trying to protect me and seeing everyone run,” Gabriella said of the wound.

It’s hard not to feel forgotten by the public, Bridget said. The shooting, especially its survivors, have largely faded from the headlines aside from court dates. Two additional high-profile shootings have occurred in the area since the parade. Doesn’t the community care, she wonders, that her family is still living with the fallout every day?

“I’m going to put this as plainly as possible. I’m f—ing pissed because my family went through something traumatic,” Bridget vented in a recent social media post. “I don’t really want anything other [than], ‘Your story matters, too, and we want to know how you’re doing.’ Have we gotten that? Abso-f—lutely not.”

‘What Is the Landscape of Need?’

Helped in part by celebrities like Swift and Kelce, donations for the family of Lopez-Galvan, the lone fatality, and other victims poured in immediately after the shootings. Swift and Kelce donated $100,000 each. With the help of an initial $200,000 donation from the Kansas City Chiefs, the United Way’s #KCStrong campaign took off, reaching $1 million in the first two weeks and sitting at $1.2 million now.

Six verified GoFundMe funds were established. One solely for the Lopez-Galvan family has collected over $406,000. Smaller ones were started by a local college student and Swift fans. Churches have also stepped up, and one local coalition had raised $183,000, money set aside for Lopez-Galvan’s funeral, counseling services for five victims, and other medical bills from Children’s Mercy Kansas City hospital, said Ray Jarrett, executive director of Unite KC.

Money for Victims Rolls In

Donations poured in for those injured at the Super Bowl Parade in Kansas City after the Feb. 14 shootings. The largest, starting with a $200,000 donation from the Kansas City Chiefs, is at the United Way of Greater Kansas City. Six GoFundMe sites also popped up, due in part to $100,000 donations each from Taylor Swift and Travis Kelce. Here’s a look at the totals as of March 12.United Way#KCStrong: $1.2 million.Six Verified GoFundMe AccountsLisa Lopez-Galvan GoFundMe (Taylor Swift donated): $406,142Reyes Family GoFundMe (Travis Kelce donated): $207,035Samuel Arellano GoFundMe: $11,896Emily Tavis GoFundMe: $9,518Cristian Martinez’s GoFundMe for United Way: $2,967Swifties’ GoFundMe for Children’s Mercy hospital: $1,060ChurchesResurrection (Methodist) “Victims of Violence Fund”: $53,358‘The Church Loves Kansas City’: $183,000 

Meanwhile, those leading the efforts found models in other cities. The United Way’s Blubaugh called counterparts who’d responded to their own mass shootings in Orlando, Florida; Buffalo, New York; and Newtown, Connecticut.

“The unfortunate reality is we have a cadre of communities across the country who have already faced tragedies like this,” Blubaugh said. “So there is an unfortunate protocol that is, sort of, already in place.”

#KCStrong monies could start being paid out by the end of March, Blubaugh said. Hundreds of people called the nonprofit’s 211 line, and the United Way is consulting with hospitals and law enforcement to verify victims and then offer services they may need, she said.

The range of needs is staggering — several people are still recovering at home, some are seeking counseling, and many weren’t even counted in the beginning. For instance, a plainclothes police officer was injured in the melee but is doing fine now, said Police Chief Stacey Graves.

Determining who is eligible for assistance was one of the first conversations United Way officials had when creating the fund. They prioritized three areas of focus: first were the wounded victims and their families, second was collaborating with organizations already helping victims in violence intervention and prevention and mental health services, and third were the first responders.

Specifically, the funds will be steered to cover medical bills, or lost wages for those who haven’t been able to work since the shootings, Blubaugh said. The goal is to work quickly to help people, she said, but also to spend the money in a judicious, strategic way.

“We don’t have a clear sightline of the entire landscape that we’re dealing with,” Blubaugh said. “Not only of how much money do we have to work with, but also, what is the landscape of need? And we need both of those things to be able to make those decisions.”

Firsthand Experience of Daily Kansas City Violence

Jason used his lone remaining sick day to stay home with Bridget and Gabriella. An overnight automation technician, he is the family’s primary breadwinner.

“I can’t take off work, you know?” he said. “It happened. It sucked. But it’s time to move on.”

“He’s a guy’s guy,” Bridget interjected.

On Jason’s first night back at work, the sudden sound of falling dishes startled Bridget and Gabriella, sending them into each other’s arms crying.

“It’s just those moments of flashbacks that are kicking our butts,” Bridget said.

Tell Us About Your Experience

We are continuing to report on the effects of the parade shooting on the people who were injured and the community as a whole. Do you have an experience you want to tell us about, or a question you think we should look into? Message KCUR’s text line at (816) 601-4777. Your information will not be used in an article without your permission.

In a way, the shooting has brought the family closer. They’ve been through a lot recently. Jason survived a heart attack and cancer last year. Raising a teenager is never easy.

Bridget can appreciate that the bullet lodged in her backpack, narrowly missing her, and that Gabriella’s legs were burned by sparks but she wasn’t shot.

Jason is grateful for another reason: It wasn’t a terrorist attack, as he initially feared. Instead, it fits into the type of gun violence he’d become accustomed to growing up in Kansas City, which recorded its deadliest year last year, although he’d never been this close to it before.

“This crap happens every single day,” he said. “The only difference is we were here for it.”

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Gayle Borne ha cuidado a más de 300 niños en Springfield, Tennessee. Niños que rara vez han visto a un médico y que han sido tan descuidados que ni siquiera pueden hablar.

Una ley que este estado aprobó en 2023 —que requiere el consentimiento de los padres biológicos o tutores legales para que los niños reciban vacunas de rutina— vuelve a estos niños aún más vulnerables.

Los padres temporales, trabajadores sociales y otros cuidadores no pueden otorgar ese permiso.

En enero, Borne llevó a una bebé que estaba cuidando, que nació con poco apenas 2 libras, a su primera cita médica. Los proveedores de salud dijeron que sin el consentimiento de la madre de la niña, no podían vacunarla contra enfermedades como la neumonía, la hepatitis B y la polio.

La madre no ha sido localizada, por lo que un trabajador social tuvo que solicitar una orden judicial para poder vacunarla. “Estamos esperando”, dijo Borne. “Nuestras manos están atadas”.

La ley de Tennessee también impide que las abuelas y otros cuidadores que acompañan a los niños a citas de rutina cuando los padres están trabajando, en rehabilitación, o simplemente no pueden ir, otorguen ese permiso.

La ley pretende “devolverles a los padres el derecho a tomar decisiones médicas para sus hijos”.

Enmarcada en la retórica de la elección y el consentimiento, esta ley es una de más de una docena de propuestas recientes y pendientes en todo el país que usan la libertad para decidir de los padres en contra de la salud comunitaria y de los niños.

En realidad, crean obstáculos para la vacunación, el fundamento de la atención pediátrica. Siembran dudas sobre la seguridad de las vacunas en un clima lleno de desinformación médica.

Esta tendencia ha explotado a medida que políticos e influencers en las redes sociales hacen afirmaciones falsas sobre los riesgos de las vacunas, a pesar de los estudios que muestran lo contrario.

Los médicos tradicionalmente brindan información sobre vacunas a los cuidadores y obtienen su permiso antes de administrar más de una docena de inmunizaciones infantiles que protegen contra el sarampión, la polio y otras enfermedades debilitantes.

Pero ahora, la ley de Tennessee exige que los padres biológicos asistan a citas de rutina y firmen formularios de consentimiento para cada vacuna administrada durante dos años o más.

“Los formularios podrían tener un efecto disuasorio”, opinó el doctor Jason Yaun, pediatra de Memphis y ex presidente del capítulo de Tennessee de la Academia Americana de Pediatría. “Las personas que promueven los derechos parentales sobre las vacunas tienden a minimizar los derechos de los niños”, dijo Dorit Reiss, investigadora de políticas de vacunas en la Facultad de Derecho de la Universidad de California en San Francisco.

Baja en la tasa de vacunación de rutina

La desinformación, junto con un movimiento por el derecho de los padres que aleja la toma de decisiones de la salud pública, ha contribuido a las tasas de vacunación infantil más bajas en una década.

Este año, legisladores en Arizona, Iowa y West Virginia han presentado proyectos de ley relacionados con el consentimiento.

Una enmienda del Parent’s Bill of Rights en Oklahoma busca asegurar que los padres sepan que pueden eximir a sus hijos de los mandatos de vacunación escolar junto con las lecciones sobre educación sexual y el SIDA.

En Florida, el escéptico médico que lidera el Departamento de Salud del estado recientemente desafió las recomendaciones de los Centros para el Control y la Prevención de Enfermedades (CDC) diciéndoles a los padres que podían enviar a los niños no vacunados a la escuela durante un brote de sarampión.

El año pasado, Mississippi comenzó a permitir exenciones de los requisitos de vacunación escolar por motivos religiosos debido a una demanda financiada por la Informed Consent Action Network (ICAN), que está catalogada como una de las principales fuentes de desinformación antivacunas por el Center for Countering Digital Hate.

Aunque algunos proyectos de ley fracasen, Reiss teme que el resurgimiento del movimiento por los derechos de los padres pueda llevar a abolir leyes que requieren vacunas de rutina para asistir a la escuela.

En un reciente mitín de campaña, el candidato presidencial republicano Donald Trump dijo: “No daré ni un centavo a ninguna escuela que tenga un mandato de vacunación”.

Este movimiento se remonta a la pandemia de influenza de 1918, cuando algunos padres se opusieron a reformas progresistas que volvieron obligatorio asistir a la escuela y prohibieron el trabajo infantil. Desde entonces, las tensiones entre las medidas estatales y la libertad de los padres han estallado ocasionalmente sobre una variedad de temas.

Las vacunas se convirtieron en un tema prominente en 2021, cuando el movimiento encontró puntos en común con personas escépticas sobre las vacunas contra covid.

“El movimiento de derechos parentales no comenzó con las vacunas”, dijo Reiss, “pero el movimiento antivacunas se ha aprovechado, ampliando su alcance”.

Cuando legisladores callan a expertos

En Tennessee, los activistas antivacunas y las organizaciones de tendencia libertaria arremetieron contra el Departamento de Salud del estado en 2021 cuando recomendó vacunas contra covid a menores, siguiendo la orientación de los CDC.

Gary Humble, director ejecutivo del grupo conservador Tennessee Stands, pidió a los legisladores que criticaran al departamento por aconsejar el uso de máscaras y la vacunación.

También hubo repercusiones después que Michelle Fiscus, entonces directora de inmunización del estado, envió un aviso a los médicos. Les recordó que no necesitaban el permiso de los padres para vacunar a adolescentes de 14 años o más que dieran su consentimiento, según una regla estatal de décadas llamada Doctrina del Menor Maduro (Mature Minor Doctrine).

En las semanas siguientes, los legisladores estatales amenazaron con retirarle al departamento su financiamiento, y lo presionaron para que redujera la promoción de la vacuna contra covid, según reveló The Tennessean.

Fiscus fue despedida abruptamente. “Hoy me convertí en la vigésimo quinta de los 64 directores de programas de inmunización estatales y territoriales en dejar su puesto durante esta pandemia”, escribió en un comunicado. “Eso es casi el 40% de nosotros”.

La tasa de mortalidad por covid en Tennessee aumentó, convirtiéndose en una de las más altas del país a mediados de 2022.

Para cuando dos legisladores estatales presentaron un proyecto de ley para revertir la doctrina, el departamento de salud guardó silencio sobre la propuesta. A pesar de los obstáculos para los niños en hogares temporales que requerirían de una orden judicial para vacunas de rutina, el Departamento de Servicios Infantiles de Tennessee tampoco dijo nada.

El representante republicano John Ragan, quien presentó el proyecto en abril de 2023, dijo: “Los niños pertenecen a sus familias, no al estado”.

El representante demócrata Justin Pearson habló en contra del proyecto de ley. “No tiene en cuenta a las personas y niños que son descuidados”, le dijo a Ragan. “Estamos legislando desde un lugar de privilegio y no reconociendo a las personas que no tienen estos privilegios”, agregó.

El proyecto de Ragan obtuvo la mayoría y el gobernador republicano Bill Lee lo firmó en mayo, haciéndolo efectivo de inmediato.

Deborah Lowen, entonces subcomisionada de salud infantil en el Departamento de Servicios Infantiles, recibió decenas de llamadas de médicos que ahora enfrentan pena de cárcel y multas por vacunar a menores sin un consentimiento adecuado. “Me sentí, y me siento, muy descorazonada”, dijo.

Derecho a la salud

Yaun, el pediatra de Memphis, dijo que se sintió conmocionado cuando se negó a administrar una primera serie de vacunas a un bebé acompañado por un trabajador social. “Ese niño está entrando en una situación en donde está rodeado de otros niños y adultos”, dijo, “donde podría estar expuesto a algo y fracasamos en protegerlo”.

“Hemos tenido muchos abuelos enojados en nuestra sala de espera que traen a sus nietos a las citas porque los padres están trabajando o pasando por un mal momento”, dijo Hunter Butler, pediatra en Springfield, Tennessee. “Una vez llamé a una instalación de rehabilitación para encontrar a una madre y hablar con ella por teléfono para obtener su consentimiento verbal para vacunar a su bebé”, dijo. “Y no está claro si eso estuvo bien”.

Las tasas de vacunación infantil han disminuido por tres años consecutivos en Tennessee. A nivel nacional, las tendencias en baja de la vacunación contra el sarampión llevaron a los CDC a estimar que un cuarto de millón de niños de jardín de infantes están en riesgo de contraer la enfermedad altamente contagiosa.

Las comunidades con tasas bajas de vacunación son vulnerables a medida que el sarampión aumenta a nivel internacional. Los casos confirmados de sarampión en 2023 fueron casi el doble que en 2022, un año en el que la Organización Mundial de la Salud (OMS) estima que más de 136,000 personas murieron por la enfermedad en todo el mundo.

Cuando los viajeros infectados en el extranjero llegan a comunidades con bajas tasas de vacunación infantil, el virus altamente contagioso puede propagarse rápidamente entre personas no vacunadas, así como entre bebés demasiado pequeños para ser vacunados y personas con sistemas inmunes debilitados.

“Existe un aspecto de libertad en el otro lado de este argumento”, dijo Caitlin Gilmet, directora de comunicaciones del grupo de defensa de vacunas SAFE Communities Coalition and Action Fund. “Deberías tener el derecho de proteger a tu familia de enfermedades prevenibles”.

A finales de enero, Gilmet y otros defensores de la salud infantil se reunieron en una sala del Capitolio de Tennessee en Nashville y ofrecieron un desayuno gratuito. Distribuyeron folletos mientras los legisladores y sus asistentes llegaban a comer. Un folleto describía el costo de un brote de sarampión en 2018-19 en el estado de Washington que enfermó a 72 personas, la mayoría de las cuales no estaban vacunadas. El brote costó $76,000 en atención médica, $2,3 millones para la respuesta de salud pública y aproximadamente $1 millón en pérdidas económicas debido a la enfermedad, cuarentena y atención.

Barb Dentz, defensora del grupo de base Tennessee Families for Vaccines, repitió que la mayoría de los constituyentes del estado apoyan políticas sólidas a favor de las vacunas. De hecho, siete de cada 10 adultos estadounidenses sostuvieron que las escuelas públicas deberían exigir la vacunación contra el sarampión, las paperas y la rubéola, en una encuesta del Pew Research Center realizada el año pasado.

Pero las cifras han estado disminuyendo. “Proteger a los niños debería ser algo tan obvio”, le dijo Dentz al representante republicano Sam Whitson. Whitson estuvo de acuerdo y reflexionó sobre una explosión de desinformación antivacunas. “El Dr. Google y Facebook han sido un desafío tan grande”, dijo. “Combatir la ignorancia se ha convertido en un trabajo de tiempo completo”.

Whitson fue uno de los pocos republicanos que votaron en contra de la enmienda de vacunas de Tennessee del año pasado. “La cuestión de los derechos de los padres realmente se ha afianzado”, dijo, “y puede ser utilizada a nuestro favor y en nuestra contra”.

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A doctor confirmed that Hyatt had covid-19 and sent him to CVS with a prescription for the antiviral drug Paxlovid, the generally recommended medicine to fight covid. Hyatt handed the pharmacist the script, but then, he said, “She kept avoiding me.”

She finally looked up from her computer and said, “It’s $1,600.”

The generally healthy 76-year-old went out to the car to consult his wife about their credit card limits. “I don’t think I’ve ever spent more than $20 on a prescription,” the astonished Hyatt recalled.

That kind of sticker shock has stunned thousands of sick Americans since late December, as Pfizer shifted to commercial sales of Paxlovid. Before then, the federal government covered the cost of the drug.

The price is one reason Paxlovid is not reaching those who need it most. And patients who qualify for free doses, which Pfizer offers under an agreement with the federal government, often don’t realize it or know how to get them.

“If you want to create a barrier to people getting a treatment, making it cost a lot is the way to do it,” said William Schaffner, a professor at Vanderbilt University School of Medicine and spokesperson for the National Foundation for Infectious Diseases.

Public and medical awareness of Paxlovid’s benefits is low, and putting people through an application process to get the drug when they’re sick is a non-starter, Schaffner said. Pfizer says it takes only five minutes online.

It’s not an easy drug to use. Doctors are wary about prescribing it because of dangerous interactions with common drugs that treat cholesterol, blood clots, and other conditions. It must be taken within five days of the first symptoms. It leaves a foul taste in the mouth. In one study, 1 in 5 patients reported “rebound” covid symptoms a few days after finishing the medicine — though rebound can also occur without Paxlovid.

A recent JAMA Network study found that sick people 85 and older were less likely than younger Medicare patients to get covid therapies like Paxlovid. The drug might have prevented up to 27,000 deaths in 2022 if it had been allocated based on which patients were at highest risk from covid. Nursing home patients, who account for around 1 in 6 U.S. covid deaths, were about two-thirds as likely as other older adults to get the drug.

Shrunken confidence in government health programs is one reason the drug isn’t reaching those who need it. In senior living facilities, “a lack of clear information and misinformation” are “causing residents and their families to be reluctant to take the necessary steps to reduce covid risks,” said David Gifford, chief medical officer for an association representing 14,000 health care providers, many in senior care.

The anti-vaxxers spreading falsehoods about vaccines have targeted Paxlovid as well. Some call themselves anti-paxxers.

“Proactive and health-literate people get the drug. Those who are receiving information more passively have no idea whether it’s important or harmful,” said Michael Barnett, a primary care physician at Brigham and Women’s Hospital and an associate professor at Harvard, who led the JAMA Network study.

In fact, the drug is still free for those who are uninsured or enrolled in Medicare, Medicaid, or other federal health programs, including those for veterans.

That’s what rescued Hyatt, whose Department of Veterans Affairs health plan doesn’t normally cover outpatient drugs. While he searched on his phone for a solution, the pharmacist’s assistant suddenly appeared from the store. “It won’t cost you anything!” she said.

As Hyatt’s case suggests, it helps to know to ask for free Paxlovid, although federal officials say they’ve educated clinicians and pharmacists — like the one who helped Hyatt — about the program.

“There is still a heaven!” Hyatt replied. After he had been on Paxlovid for a few days his symptoms were gone and his surgery was rescheduled.

About That $1,390 List Price

Pfizer sold the U.S. government 23.7 million five-day courses of Paxlovid, produced under an FDA emergency authorization, in 2021 and 2022, at a price of around $530 each.

Under the new agreement, Pfizer commits to provide the drug for the beneficiaries of the government insurance programs. Meanwhile, Pfizer bills insurers for some portion of the $1,390 list price. Some patients say pharmacies have quoted them prices of $1,600 or more.

How exactly Pfizer arrived at that price isn’t clear. Pfizer won’t say. A Harvard study last year estimated the cost of producing generic Paxlovid at about $15 per treatment course, including manufacturing expenses, a 10% profit markup, and 27% in taxes.

Pfizer reported $12.5 billion in Paxlovid and covid vaccine sales in 2023, after a $57 billion peak in 2022. The company’s 2024 Super Bowl ad, which cost an estimated $14 million to place, focused on Pfizer’s cancer drug pipeline, newly reinforced with its $43 billion purchase of biotech company Seagen. Unlike some other recent oft-aired Pfizer ads (“If it’s covid, Paxlovid”), it didn’t mention covid products.

Connecting With Patients

The other problem is getting the drug where it is needed. “We negotiated really hard with Pfizer to make sure that Paxlovid would be available to Americans the way they were accustomed to,” Department of Health and Human Services Secretary Xavier Becerra told reporters in February. “If you have private insurance, it should not cost you much money, certainly not more than $100.”

Yet in nursing homes, getting Paxlovid is particularly cumbersome, said Chad Worz, CEO of the American Society of Consultant Pharmacists, specialists who provide medicines to care homes.

If someone in long-term care tests positive for covid, the nurse tells the physician, who orders the drug from a pharmacist, who may report back that the patient is on several drugs that interact with Paxlovid, Worz said. Figuring out which drugs to stop temporarily requires further consultations while the time for efficacious use of Paxlovid dwindles, he said.

His group tried to get the FDA to approve a shortcut similar to the standing orders that enable pharmacists to deliver anti-influenza medications when there are flu outbreaks in nursing homes, Worz said. “We were close,” he said, but “it just never came to fruition.” “The FDA is unable to comment,” spokesperson Chanapa Tantibanchachai said.

Los Angeles County requires nursing homes to offer any covid-positive patient an antiviral, but the Centers for Medicare & Medicaid Services, which oversees nursing homes nationwide, has not issued similar guidance. “And this is a mistake,” said Karl Steinberg, chief medical officer for two nursing home chains with facilities in San Diego County, which also has no such mandate. A requirement would ensure the patient “isn’t going to fall through the cracks,” he said.

While it hasn’t ordered doctors to prescribe Paxlovid, CMS on Jan. 4 issued detailed instructions to health insurers urging swift approval of Paxlovid prescriptions, given the five-day window for the drug’s efficacy. It also “encourages” plans to make sure pharmacists know about the free Paxlovid arrangement.

Current covid strains appear less virulent than those that circulated earlier in the pandemic, and years of vaccination and covid infection have left fewer people at risk of grave outcomes. But risk remains, particularly among older seniors, who account for most covid deaths, which number more than 13,500 so far this year in the U.S.

Steinberg, who sees patients in 15 residences, said he orders Paxlovid even for covid-positive patients without symptoms. None of the 30 to 40 patients whom he prescribed the drug in the past year needed hospitalization, he said; two stopped taking it because of nausea or the foul taste, a pertinent concern in older people whose appetites already have ebbed.

Steinberg said he knew of two patients who died of covid in his companies’ facilities this year. Neither was on Paxlovid. He can’t be sure the drug would have made a difference, but he’s not taking any chances. The benefits, he said, outweigh the risks.

Reporter Colleen DeGuzman contributed to this report.

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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.

President Joe Biden is working to lay out his health agenda for a second term, even as Congress races to finish its overdue spending bills for the fiscal year that began last October.

Meanwhile, Alabama lawmakers try to reopen the state’s fertility clinics over the protests of abortion opponents, and pharmacy giants CVS and Walgreens announce they are ready to begin federally regulated sales of the abortion pill mifepristone.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll Call.

Panelists

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah'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:

• Lawmakers in Washington are completing work on the first batch of spending bills to avert a government shutdown. The package includes a bare-bones health bill, leaving out certain bipartisan proposals that have been in the works on drug prices and pandemic preparedness. Doctors do get some relief in the bill from Medicare cuts that took effect in January, but the pay cuts are not canceled.
• The White House is floating proposals on drug prices that include expanding Medicare negotiations to more drugs; applying negotiated prices earlier in the market life of drugs; and capping out-of-pocket maximum drug payments at $2,000 for all patients, not just seniors. At least some of the ideas have been proposed before and couldn’t clear even a Democratic-controlled Congress. But they also keep up pressure on the pharmaceutical industry as it challenges the government in court — and as Election Day nears.
• Many in public health are expressing frustration after the Centers for Disease Control and Prevention softened its covid-19 isolation guidance. The change points to the need for a national dialogue about societal support for best practices in public health — especially by expanding access to paid leave and child care.
• Meanwhile, CVS and Walgreens announced their pharmacies will distribute the abortion pill mifepristone, and enthusiasm is waning for the first over-the-counter birth control pill amid questions about how patients will pay its higher-than-anticipated list price of $20 per month.
• Alabama’s governor signed a law protecting access to in vitro fertilization, granting providers immunity from the state Supreme Court’s recent “embryonic personhood” decision. But with opposition from conservative groups, is the new law also bound for the Alabama Supreme Court?

Also this week, Rovner interviews White House domestic policy adviser Neera Tanden about Biden’s health agenda.

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

Julie Rovner: NPR’s “How States Giving Rights to Fetuses Could Set Up a National Case on Abortion,” by Regan McCarthy.

Sarah Karlin-Smith: Stat’s  “The War on Recovery,” by Lev Facher.

Alice Miranda Ollstein: KFF Health News’ “Why Even Public Health Experts Have Limited Insight Into Stopping Gun Violence in America,” by Christine Spolar.

Sandhya Raman: The Journal’s “‘My Son Is Not There Anymore’: How Young People With Psychosis Are Falling Through the Cracks,” by Órla Ryan.

Also mentioned on this week’s podcast:

• NBC News’ “CDC Updates Covid Isolation Guidelines for People Who Test Positive,” by Erika Edwards.
• New York Magazine’s “Did Trump Really Vow to Defund Schools With Vaccine Mandates?” by Margaret Hartmann.

click to open the transcript

Transcript: The State of the Union Is … Busy

KFF Health News’ ‘What the Health?’Episode Title: The State of the Union Is … BusyEpisode Number: 337Published: March 7, 2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 7, at 9 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: Sarah Karlin-Smith, of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Sandhya Raman, of CQ Roll Call.

Raman: Good morning.

Rovner: Later in this episode we’ll have my interview with White House domestic policy adviser Neera Tanden about the Biden administration’s health accomplishment so far and their priorities for 2024. But first, this week’s news. It is a big week here in the nation’s capital. In addition to sitting through President Biden’s State of the Union address, lawmakers appear on the way to finishing at least some of the spending bills for the fiscal year that began last Oct. 1. Good thing, too, because the president will deliver to Congress a proposed budget for the next fiscal year that starts Oct. 1, 2024, next Monday. Sandhya, which spending bills are getting done this week, and which ones are left?

Sandhya Raman: We’re about half-and-half as of last night. The House is done with their six-bill deal that they released. Congress came to a bipartisan agreement on Sunday and released then, so the FDA is in that part, in the agriculture bill. We also have a number of health extenders that we can …

Rovner: Which we’ll get to in a second.

Raman: Now it’s on to the Senate and then to Biden’s desk, and then we still have the Labor HHS [Department of Labor and Department of Health and Human Services] bill with all of the health funding that we’re still waiting on sometime this month.

Rovner: Yeah, it’s fair to say that the half that they’re getting done now are the easy ones, right? It’s the big ones that are left.

Ollstein: Although, if they were so easy, why didn’t they get them done a long time ago? There have been a lot of fights over policy riders that have been holding things up, in addition to disagreements about spending levels, which are perennial of course. But I was very interested to see that in this first tranche of bills, Republicans dropped their insistence on a provision banning mail delivery of abortion pills through the FDA, which they had been fighting for for months and months and months, and that led to votes on that particular bill being canceled multiple times. It’s interesting that they did give up on that.

Rovner: Yes. I shouldn’t say these were the easy ones, I should say these were the easier ones. Not that there’s a reason that it’s March and they’re only just now getting them done, but they have until the 22nd to get the rest of them done. How is that looking?

Raman: We still have not seen text on those yet. If they’re able to get there, we would see that in the next week or so, before then. And it remains to be seen, that traditionally the health in Labor HHS is one of the trickiest ones to get across the finish line in a normal year, and this year has been especially difficult given, like Alice said, all of the different policy riders and different back-and-forth there. It remains to be seen how that’ll play out.

Rovner: They have a couple of weeks and we will see. All right, well as you mentioned, as part of this first spending minibus, as they like to call it, is a small package of health bills. We talked about some of these last week, but tell us what made the final cut into this current six-bill package.

Raman: It’s whittled down a lot from what I think a lot of lawmakers were hoping. It’s pretty bare-bones in terms of what we have now. It’s a lot of programs that have traditionally been added to funding bills in the past, extending the special diabetes program, community health center funding, the National Health Service Corps, some sexual risk-avoidance programs. All of these would be pegged to the end of 2024. It kind of left out a lot of the things that Congress has been working on, on health care.

Rovner: Even bipartisan things that Congress has been working for on health care.

Raman: Yeah. They didn’t come to agreement on some of the pandemic and emergency preparedness stuff. There were some provisions for the SUPPORT Act — the 2018 really big opioid law — but a lot of them were not there. The PBM [pharmacy benefit managers] reform, all of that, was not, not this round.

Rovner: But at least judging from the press releases I got, there is some relief for doctor fees in Medicare. They didn’t restore the entire 3.3% cut, I believe it is, but I think they restored all but three-quarters of a percent of the cut. It’s made doctors, I won’t say happy, but at least they got acknowledged in this package and we’ll see what happens with the rest of them. Well, by the time you hear this, the president’s State of the Union speech will have come and gone, but the White House is pitching hard some of the changes that the president will be proposing on drug prices. Sarah, how significant are these proposals? They seem to be bigger iterations of what we’re already doing.

Karlin-Smith: Right. Biden is proposing expanding the Medicare Drug [Price] Negotiation program that Congress passed through the Inflation Reduction Act. He wants to go from Medicare being able to negotiate eventually up to 20 drugs a year to up to 50. He seems to be suggesting letting drugs have a negotiated price earlier in their life, letting them have less time on the market before negotiation. Also, thinking about applying some of the provisions of the IRA right now that only apply to Medicare to people in commercial plans, so this $2,000 maximum out-of-pocket spending for patients. Then also there are penalties that drugmakers get if they raise prices above inflation that would also apply to commercial plans. He’s actually proposed a lot of this before in previous budgets and actually Democrats, if you go back in time, tried to actually get some of these things in the initial IRA and even with a Democratic-controlled capital, could not actually get Democratic agreement to go broader on some of the provisions.

Rovner: Thank you, Sen. [Joe] Manchin.

Karlin-Smith: That said, I think it is significant that Biden is still pressing on this, even if they would really need big Democratic majorities and more progressive Democratic majorities to get this passed, because it’s keeping the pressure on the pharmaceutical industry. There were times before the IRA was passed where people were saying, “Pharma just needs to take this hit, it’s not going to be as bad as they think it is. Then they’ll get a breather for a while.” They’re clearly not getting that. The public is still very concerned about drug pricing, and they’re both fighting the current IRA in court. Actually, today there’s a number of big oral arguments happening. At the same time, they’re trying to get this version of the IRA improved somehow through legislation. All at the same time Democrats are saying, “Actually, this is just the start, we’re going to keep going.” It’s a big challenge and maybe not the respite they thought they might’ve gotten after this initial IRA was passed.

Rovner: But as you point out, still a very big voting issue. All right, well I want to talk about covid, which we haven’t said in a while. Last Friday, the Centers for Disease Control and Prevention officially changed its guidance about what people should do if they get covid. There’s been a lot of chatter about this. Sarah, what exactly got changed and why are people so upset?

Karlin-Smith: The CDC’s old guidance, if you will, basically said if you had covid, you should isolate for five days. If you go back in time, you’ll remember we probably talked about how that was controversial on its own when that first happened, because we know a lot of people are infectious and still test positive for covid much longer than five days. Now they’re basically saying, if you have covid, you can return to the public once you’re fever-free for 24 hours and your symptoms are improving. I think the implication here is, that for a lot of people, this would be before five days. They do emphasize to some degree that you should take precautions, masking, think about ventilation, maybe avoid vulnerable people if you can.

But I think there’s some in the public health world that are really frustrated by this. They feel like it’s not science- and evidence-based. We know people are going to be infectious and contagious in many cases for longer than periods of time where the CDC is saying, “Sure, go out in public, go back to work.” On the flip side, CDC is arguing, people weren’t really following their old guidance. In part because we don’t have a society set up to structurally allow them to easily do this. Most people don’t have paid sick time. They maybe don’t have people to watch their children if they’re trying to isolate from them. I think the tension is that, we’ve learned a lot from covid and it’s highlighted a lot of the flaws already in our public health system, the things we don’t do well with other respiratory diseases like flu, like RSV. And CDC is saying, “Well, we’re going to bring covid in line with those,” instead of thinking about, “OK, how can we actually improve as a society managing respiratory viruses moving forward, come up with solutions that work.”

I think there probably are ways for CDC to acknowledge some of the realities. CDC does not have the power to give every American paid sick time. But if CDC doesn’t push to say the public needs this for public health, how are we ever going to get there? I think that’s really a lot of the frustration in a lot of the public health community in particular, that they’re just capitulating to a society that doesn’t care about public health instead of really trying to push the agenda forward.

Rovner: Or a society that’s actively opposed to public health, as it sometimes seems. I know speaking for my NF1, I was sick for most of January, and I used up all my covid tests proving that I didn’t have covid. I stayed home for a few days because I felt really crappy, and when I started to feel better, I wore a mask for two weeks because, hello, that seemed to be a practical thing to do, even though I think what I had was a cold. But if I get sick again, I don’t have any more covid tests and I’m not going to take one every day because now they cost $20 a pop. Which I suspect was behind a lot of this. It’s like, “OK, if you’re sick with a respiratory ailment, stay home until you start to feel better and then be careful.” That’s essentially what the advice is, right?

Ollstein: Yeah. Although one other criticism I heard was specifically basing the new guidance on being fever-free, a lot of people don’t get a fever, they have other symptoms or they don’t have symptoms at all, and that’s even more insidious for allowing spread. I heard that criticism as well, but I completely agree with Sarah, that this seems like allowing public behavior to shape the guidance rather than trying to shape the public behavior with the guidance.

Rovner: Although some of that is how public health works, they don’t want to recommend things that they know people aren’t going to do or that they know the vast majority of people aren’t going to do. This is the difficulty of public health, which we will talk about more. While meanwhile, speaking in Virginia earlier this week, former President Donald Trump vowed to pull all federal funding for schools with vaccine mandates. Now, from the context of what he was saying, it seemed pretty clear that he was talking only about covid vaccine mandates, but that’s not what he actually said. What would it mean to lift all school vaccine mandates? That sounds a little bit scary.

Raman: That would basically affect almost every public school district nationwide. But even if it’s just covid shots, I think that’s still a little bit of a shift. You see Trump not taking as much public credit anymore for the fact that the covid vaccines were developed under his administration, Operation Warp Speed, that started under the Trump administration. It’s a little bit of a shift compared to then.

Rovner: I’m old enough to remember two cycles ago, when there were Republicans who were anti-vaccine or at least anti-vaccine curious, and the rest of the Republican Party was like, “No, no, no, no, no.” That doesn’t seem to be the case anymore. Now it seems to be much more mainstream to be anti-vax in general. Cough, cough. We see the measles outbreak in Florida, so we will clearly watch that space, too.

All right, moving on to abortion. Later this month, the Supreme Court will hear oral argument in the case that could severely restrict distribution of the abortion pill mifepristone. But in the meantime, pharmacy giants, CVS and Walgreens have announced they will begin distributing the abortion pill at their pharmacies. Alice, why now and what does this mean?

Ollstein: It’s interesting that this came more than a year after the big pharmacies were given permission to do this. They say it took this long because they had to get all of these systems up in place to make sure that only certified pharmacists were filling prescriptions from certified prescribing doctors. All of this is required because when the Biden administration, when the FDA, moved to allow this form of distribution of the abortion pill, they still left some restrictions known as REMS [risk evaluation and mitigation strategies] in place. That made it take a little more time, more bureaucracy, more box checking, to get to this point. It is interesting that given the uncertainty with the Supreme Court, they are moving forward with this. It’s this interesting state-versus-federal issue, because we reported a year ago that Walgreens and CVS would not distribute the pills in states where Republican state attorneys general have threatened them with lawsuits.

So, they’ve noted the uncertainty at the state level, but even with this uncertainty at the federal level with the Supreme Court, which could come in and say this form of distribution is not allowed, they’re still moving forward. It is limited. It’s not going to be, even in blue states where abortion is protected by law, they’re not going to be at every single CVS. They’re going to do a slower, phased rollout, see how it goes. I’m interested in seeing if any problems arise. I’m also interested in seeing, anti-abortion groups have vowed to protest these big pharmacy chains for making this medication available. They’ve disrupted corporate meetings, they’ve protested outside brick-and-mortar pharmacies, and so we’ll see if any of that continues and has an effect as well.

Rovner: It’s hard to see how the anti-abortion groups though could have enough people to protest every CVS and Walgreens selling the abortion pill. That will be an interesting numbers situation. Well, in a case of not-so-great timing, if only for the confusion potential, also this week we learned that the first approved over-the-counter birth control pill, called Opill, is finally being shipped. Now, this is not the abortion pill. It won’t require a prescription, that’s the whole point of it being over-the-counter. But I’ve seen a lot of advocacy groups that worked on this for years now complaining that the $20 per month that the pill is going to cost, it’s still going to be too much for many who need it. Since it’s over-the-counter, it’s not going to be covered by most insurance. This is a separate issue of its own that’s a little bit controversial.

Karlin-Smith: You can with over-the-counter drugs, if you have a flexible spending account or an HSA or something else, you may be able to use money that’s somehow connected to your health insurance benefit or you’re getting some tax breaks on it. However, I think this over-the-counter pill is probably envisioned most for people that somehow don’t have insurance, because we know the Affordable Care Act provides birth control methods with no out-of-pocket costs for people. So if you have insurance, most likely you would be getting a better deal getting a prescription and going that route for the same product or something similar.

The question becomes then, does this help the people who fall in those gaps who are probably likely to have less financial means to begin with? There’s been some polling and things that suggest this may be too high a price point for them. I know there are some discounts on the price. Essentially if you can buy three months upfront or even some larger quantities, although again that means you then have to have that larger sum of money upfront, so that’s a big tug of war. I think the companies argue this is pretty similar pricing to other over-the-counter drug products in terms of volume and stuff, so we’ll see what happens.

Rovner: I think they were hoping it was going to be more like $5 a month and not $20 a month. I think that came as a little bit of a disappointment to a lot of these groups that have been working on this for a very long time.

Ollstein: Just quickly, the jury is also still out on insurance coverage, including advocacy groups are also pressuring public insurance, Medicaid, to come out and say they’ll cover it as well. So we’ll keep an eye on that.

Rovner: Yeah, although Medicaid does cover prescription birth control. All right, well let us catch up on the IVF [in vitro fertilization] controversy in Alabama, where there was some breaking news over last night. When we left off last week, the Alabama Legislature was trying to come up with legislation that would grant immunity to fertility clinics or their staff for “damaging or killing fertilized embryos,” without overtly overruling the state Supreme Court decision from February that those embryos are, “extrauterine children.” Alice, how’s that all going?

Ollstein: Well, it was very interesting to see a bunch of anti-abortion groups come out against the bill that Alabama, mostly Republicans, put together and passed and the Republican governor signed it into law. The groups were asking her to veto it; they didn’t want that kind of immunity for discarding or destroying embryos. Now what we will see is if there’s going to be a lawsuit that lands this new law right back in front of the same state Supreme Court that just opened this whole Pandora’s box in the first place, that’s very possible. That’s one thing I’m watching. I guess we should also watch for other states to take up this issue. A lot of states have fetal personhood language, either in their constitutions or in statute or something, so really any of those states could become the next Alabama. All it would take is someone to bring a court challenge and try to get a similar ruling.

Rovner: I was amused though that the [Alabama] Statehouse passed the immunity law yesterday, Wednesday during the day. But the Senate passed it later in the evening and the governor signed it. I guess she didn’t want to let it hang there while these big national anti-abortion groups were asking her to veto it. So by the time I woke up this morning, it was already law.

Ollstein: It’s just been really interesting, because the anti-abortion groups say they support IVF, but they came out against the Democrats’ federal bill that would provide federal protections. They came out against nonbinding House resolutions that Republicans put forward saying they support IVF, and they came out against this Alabama fix. So it’s unclear what form of IVF, if any, they do support.

Rovner: Meanwhile, in Kentucky, the state Senate has overwhelmingly passed a bill that would permit a parent to seek child support retroactively to cover pregnancy expenses up until the child reaches age 1. So you have until the child turns 1 to sue for child support. Now, this isn’t technically a “personhood” bill, and it’s legit that there are expenses associated with becoming a parent even before a baby is born, but it’s skating right up to the edge of that whole personhood thing.

It brings me to my extra credit for this week, which I’m going to do early. It’s a story from NPR called, “How States Giving Rights to Fetuses Could Set Up a National Case on Abortion,” by Regan McCarthy of member station WFSU in Tallahassee. In light of Florida’s tabling of a vote on its personhood bill in the wake of the Alabama ruling last week, the story poses a question I hadn’t really thought about in the context of the personhood debate, whether some of these partway recognition laws, not just the one in Kentucky, but there was one in Georgia last year, giving tax deductions for children who are not yet born as long as you could determine a heartbeat in the second half of the year, because obviously in the first half of the year the child would’ve been born.

Whether those are part of a very long game that will give courts the ability to put them all together at some point and declare not just embryos but zygotes children. Is this in some ways the same playbook that anti-abortion forces use to get Roe [v. Wade] overturned? That was a very, very long game and at least this story speculates that that might be what they’re doing now with personhood.

Ollstein: Some anti-abortion groups are very open that it is what they want to do. They have been seeding the idea in amicus briefs and state policies. They’ve been trying to tuck personhood language into all of these things to eventually prompt such a ruling, ideally from the Supreme Court and, in their view. So whether that moves forward remains to be seen, but it’s certainly the next goal. One of many next goals on the horizon.

Rovner: Yes, one of many. All right, well moving on. Last week I called the cyberattack on Change Healthcare, a subsidiary of UnitedHealth Group, the biggest under-covered story in health care. Well, it is not under-covered anymore. Two weeks later, thousands of hospitals, pharmacies, and doctor practices still can’t get their claims paid. It seems that someone, though it’s not entirely clear who, paid the hackers $22 million in ransom. But last time I checked the systems were still not fully up. I saw a letter this morning from the Medicaid directors worrying about Medicaid programs getting claims fulfilled. How big a wake-up call has this been for the health industry, Sarah? This is a bigger deal than anybody expected.

Karlin-Smith: There’s certainly been cyberattacks on parts of the health system before in hospitals. I think the breadth of this, because it’s UnitedHealth [Group], is really significant. Particularly, because it seems like some health systems were concerned that the broader United network of companies and systems would get impacted, so they sort of disconnected from things that weren’t directly changed health care, and that ended up having broader ramifications. It’s one consequence of United being such a big monolith.

Then the potential that United paid a ransom here, which is not 100% clear what happened, is very worrisome. Again, because there’s this sense that, that will then increase the — first, you’re paying the people that then might go back and do this, so you’re giving them more money to hack. But also again, it sets up a precedent, that you can hack health systems and they will pay you. Because it is so dangerous, particularly when you start to get involved in attacking the actual systems that provide people care. So much, if you’ve been in a hospital lately or so forth, is run on computer systems and devices, so it is incredibly disruptive, but you don’t want to incentivize hackers to be attacking that.

Rovner: I certainly learned through this how big Change Healthcare, which I had never heard of before this hack and I suspect most people even who do health policy had never heard of before this attack, how embedded they are in so much of the health care system. These hackers knew enough to go after this particular system that affected so much in basically one hack. I’m imagining as this goes forward, for those who didn’t listen to last week’s podcast, we also talked about the Justice Department’s new investigation into the size of UnitedHealth [Group], an antitrust investigation for… It was obviously not prompted by this, it was prompted by something else, but I think a lot of people are thinking about, how big should we let one piece of the health care system get in light of all these cyberattacks?

All right, well we’ll obviously come back to this issue, too, as it resolves, one would hope. That is the news for this week. Now we will play my interview with White House domestic policy adviser Neera Tanden, and then we will come back with our extra credits.

I am so pleased to welcome to the podcast Neera Tanden, domestic policy adviser to President Biden, and director of the White House Domestic Policy Council. For those of you who don’t already know her, Neera has spent most of the last two decades making health policy here in Washington, having worked on health issues for Hillary Clinton, President Barack Obama, and now President Joe Biden. Neera, thank you so much for joining us.

Neera Tanden: It’s really great to be with you, Julie.

Rovner: As we tape this, the State of the Union is still a few hours away and I know there’s stuff you can’t talk about yet. But in general, health care has been a top-of-mind issue for the Biden administration, and I assume it will continue to be. First, remind us of some of the highlights of the president’s term so far on health care.

Tanden: It’s a top concern for the president. It’s a top issue for us, but that’s also because it’s really a top issue for voters. We know voters have had significant concerns about access, but also about costs. That is why this administration has really done more on costs than any administration. This is my third, as you noted, so I’m really proud of all the work we’ve done on prescription drugs, on lowering costs of health care in the exchanges, on really trying to think through the cost burden for families when it comes to health care.

When we talk about prescription drugs, it’s a wide-ranging agenda, there are things or policies that people have talked about for decades, like Medicare negotiating drug prices, that this president is the first president to truly deliver on, which he will talk about in the State of the Union. But we’ve also innovated in different policies through the Inflation Reduction Act, the inflation rebates, which ensure that drug companies don’t raise the price of drugs faster than inflation. When they do, they pay a rebate both to Medicare but also ultimately to consumers. Those our high-impact policies that will really take a comprehensive approach on lowering prices.

Rovner: Yet for all the president has accomplished, and people who listen to the podcast regularly will know that it has been way more than was expected given the general polarization around Washington right now. Why does the president seem to get so little credit for getting done more things than a lot of his predecessors were able to do in two terms?

Tanden: Well, I think people do recognize the importance of prescription drug coverage. And health care as an issue that the president — it’s not my place to talk about politics, but he does have significant advantages on issues like health care. That I think, is because we’ve demonstrated tangible results. People understand what $35 insulin means. What I really want to point to in the Medicare negotiation process is, Sept. 1, Medicare will likely have a list of drugs which are significantly lower costs, that process is underway. But my expectation, you know I’m not part of it, that’s being negotiated by CMS [Centers for Medicare & Medicaid Services] and HHS, but we expect to have a list of 10 drugs that are high-cost items for seniors in which they’ll see a price that is lower than what they pay now. That’s another way in which, like $35 insulin, we’ll have tangible proof points of what this administration will be delivering for families.

Rovner: There’s now a record number of people who have health insurance under the Affordable Care Act, which I remember you also worked on. But in surveys, as you noted, voters now say they’re less worried about coverage and more worried about not being able to pay their medical bills even if they have insurance. I know a lot of what you’re doing on the drug side is limited to Medicare. Now, do you expect you’re going to be able to expand that to everybody else?

Tanden: First and foremost, our drug prices will be public, as you know. And as you know, prices in Medicare have been able to influence other elements of the health care system. That is really an important part of this. Which is that again, those prices will be public and our hope is that the private sector adopts those prices, because they’re ones that are negotiated. We expect this to affect, not just seniors, but families throughout the country.

There are additional actions we’ll be taking on Medicare drug negotiation. That will be a significant portion of the president’s remarks on health care, not just what we’ve been able to do in Medicare drug negotiation, but how we can really build on that and really ensure that we are dramatically reducing drug costs throughout the system. I look forward to hearing the president on that topic.

Rovner: I know we’re also going to get the budget next week. Are there any other big health issues that will be a priority this year?

Tanden: The president will have a range of policies on issues like access to sickle cell therapies, ensuring affordable generic drugs are accessible to everybody, ensuring that we are building on the Affordable Care Act gains. You mentioned this, but I just really do want to step back and talk about access under the Affordable Care Act. Because I think if people started off at the beginning of this administration and said the ACA marketplaces close to double, people would’ve been shocked. You know this well, a lot of people thought the exchanges were maximizing their potential. There are a lot of people who may not be interested in that, but the president had, in working with Congress, made the exchanges more affordable.

We’ve seen record adoption: 21 million people covered through the ACA exchanges today, when it was 12 million when we started. That’s 9 million more people who have the security of affordable health care coverage. I think it’s a really important point, which is, why are people signing up? Because it is a lot more affordable? Most people can get a very affordable plan. People are saving on average $800, and that affordability is crucial. Of course we have to do more work to reduce costs throughout the health care system. But it’s an important reminder that when you lower drug costs, you also have the ability to lower premiums and it’s another way in which we can drive health care costs down. I would be genuinely honest with you, which is, I did not think we would be able to do all of these things at the beginning of the administration. The president has been laser-focused on delivering, and as you know from your work on the ACA, he did think it was a big deal.

Rovner: I have that on a T-shirt.

Tanden: A lot of people have talked about different things, but he has been really focused on strengthening the ACA. He’ll talk about how we need to strengthen it in the future, and how that is another choice that we face this year, whether we’re going to entertain repealing the ACA or build on it and ensure that the millions of people who are using the ACA have the security to know that it’s there for them into the future. Not just on access, but that also means protections for preexisting conditions, ensuring women can no longer be discriminated against, the lifetime annual limits. There’s just a variety of ways that ACA has transformed the health care system to be much more focused on consumers.

Rovner: Last question. Obviously reproductive health, big, big issue this year. IVF in particular has been in the news these past couple of weeks, thanks to the Alabama Supreme Court. Is there anything that President Biden can do using his own executive power to protect access to reproductive health technology? And will we hear him at some point address this whole personhood movement that we’re starting to see bubble back up?

Tanden: I think the president will be very forceful on reproductive rights and will discuss the whole set of freedoms that are at stake and reproductive rights and our core freedom at stake this year. You and I both know that attacks on IVF are actually just the effectuation of the attacks on Roe. What animates the attacks on Roe, would ultimately affect IVF. I felt like I was a voice in the wilderness for the last couple of decades, where people were saying … They’re just really focused on Roe v. Wade. It won’t have any impact on IVF or [indecipherable] they’re just scare tactics when you talk about IVF.

Obviously the ideological underpinnings of attacks on Roe ultimately mean that you would have to take on IVF, which is exactly what women are saying. I think the president will speak forcefully to the attacks on women’s dignity that women are seeing throughout this country, and how this ideological battle has translated to misery and pain for millions of women. Misery and pain for their families. And has really reached the point where women who are desperate to have a family are having their reproductive rights restricted because of the ideological views of a minority of the country. That is a huge issue for women, a huge issue for the country, and exactly why he’ll talk about moving forward on freedoms and not moving us back, sometimes decades, on freedom.

Rovner: Well, Neera Tanden, you have a lot to keep you busy. I hope we can call on you again.

Tanden: There’s few people who know the health care system as well as Julie Rovner, so it’s just a pleasure to be with you.

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

Raman: My extra credit this week is called “My Son Is Not There Anymore: How Young People With Psychosis Are Falling Through the Cracks,” and it’s by Órla Ryan for The Journal. This was a really interesting story about schizophrenia in Ireland and just how the earlier someone’s symptoms are treated the better the outcome. But a lot of children and minors with psychosis and schizophrenia struggle to get access to the care they need and just fall through the cracks of being transferred from one system to another, especially if they’re also dealing with disabilities. If some of these symptoms are treated before puberty, the severity is likely to go down a lot and they’re much less likely to experience psychosis. She takes a really interesting look at a specific case and some of the consequences there.

Rovner: I feel like we don’t look enough at what other countries health systems are doing because we could all learn from each other. Alice, why don’t you go next?

Ollstein: I have a piece by KFF Health News called “Why Even Public Health Experts Have Limited Insight Into Stopping Gun Violence in America.” It’s looking at the toll taken by the long-standing restrictions on federal funding for research into gun violence, investigating it as a public health issue. Only recently this has started to erode at the federal level and some funding has been approved for this research, but it is so small compared to the death toll of gun violence. This article sort of argues that lacking that data for so many years is why a lot of the quote-unquote “solutions” that places have tried to implement to prevent gun violence, just don’t work. They haven’t worked, they haven’t stopped these mass shootings, which continue to happen. So, arguing that, if we had better data on why things happen and how to make it less lethal, and safe, in various spaces, that we could implement some things that actually work.

Rovner: Yeah, we didn’t have the research just as this problem was exploding and now we are paying the price. Sarah.

Karlin-Smith: I looked at the first in a Stat News series by Lev Facher, “The War on Recovery: How the U.S. Is Sabotaging Its Best Tools to Prevent Deaths in the Opioid Epidemic.” It looks at why the U.S. has had access to cheap effective medicines that help reduce the risk of overdose and death for people that are struggling with opioid-use disorder haven’t actually been able, in most cases, to get access to these drugs, methadone and buprenorphine.

The reasons range from even people not being allowed to take the drugs when they’re in prison, to not being able to hold certain jobs if you’re taking these prescription medications, to Narcotics Anonymous essentially banning people from coming to those meetings if they use these drugs, to doctors not being willing or open to prescribing them. Then of course, there’s what always seems to come up these days, the private equity angle. Which is that methadone clinics are becoming increasingly owned by private equity and they’ve actually pushed back on and lobbied against policies that would make it easier for people to get methadone treatment. Because one big barrier to methadone treatment is, right now you largely have to go every day to a clinic to get your medicine, which it can be difficult to incorporate into your life if you need to hold a job and take care of kids and so forth.

It’s just a really fascinating dive into why we have the tools to make what is really a terrible crisis that kills so many people much, much better in the U.S. but we’re just not using them. Speaking of how other countries handle it, the piece goes a little bit into how other countries have had more success in actually being open to and using these tools and the differences between them and the U.S.

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

Karlin-Smith: Trying mostly to be on Blue Sky, but on X, Twitter a little bit at either @SarahKarlin or @sarahkarlin-smith.

Rovner: Alice.

Ollstein: @alicemiranda on Blue Sky, and @AliceOllstein on X.

Rovner: Sandhya.

Raman: @SandhyaWrites on X and on Blue Sky.

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

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