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.

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

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The Host

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

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

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

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Victoria Knight
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Rachana Pradhan
KFF Health News

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Lauren Weber
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Read Lauren's stories.

Among the takeaways from this week’s episode:

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

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

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

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

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

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

Also mentioned on this week’s podcast:

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

click to open the transcript

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

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

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

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

Lauren Weber: Hello, hello.

Rovner: Victoria Knight of Axios.

Victoria Knight: Hello, everyone.

Rovner: And my KFF Health News colleague Rachana Pradhan.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: And whether those children have been born yet.

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

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

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

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

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

Rovner: I think Florida is six weeks now.

Knight: Oh, sorry, six weeks. OK.

Rovner: Right. Pending a court decision.

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

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

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

Rovner: Yes. Rachana.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Knight: Right. Who’s at fault …

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: Lauren.

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

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

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

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

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

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

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

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

Rovner: Victoria.

Knight: I’m also on X @victoriaregisk.

Rovner: Lauren?

Weber: Still on X @LaurenWeberHP.

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

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

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

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

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

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories.

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories.

Among the takeaways from this week’s episode:

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

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

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

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

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

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

Also mentioned on this week’s podcast:

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

click to open the transcript

Transcript: Biden Wins Early Court Test for Medicare Drug Negotiations

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

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

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

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

Alice Miranda Ollstein: Good morning.

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi everyone.

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

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

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

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

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

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

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

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

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

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

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

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

Cohrs: Have you seen …? Oh, go ahead.

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

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

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

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

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

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

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

Rovner: Two weeks.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ollstein: Medically, yes.

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

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

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

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

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

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

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

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

Rovner: Which happened in a Missouri Senate race.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: Yeah, like Einstein.

Cohrs: Right.

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

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

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

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

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

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

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

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

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

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

Rovner: And who’s that from?

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

Rovner: Alice.

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

Rovner: Very. Rachel.

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

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

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

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

Rovner: Indeed. Lauren.

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

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

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

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

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

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

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

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

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

Rovner: Alice.

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

Rovner: Rachel.

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

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

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For decades, rates of the sexually transmitted infection were low. But the Hamilton County Health Department in Chattanooga — a midsize city surrounded by national forests and nestled into the Appalachian foothills of Tennessee — was seeing several syphilis patients a day, Miller said. A nurse who had worked at the clinic for decades told Miller the wave of patients was a radical change from the norm.

What Miller observed in Chattanooga is reflective of a trend that is raising alarm bells for health departments across the country.

Nationwide, syphilis rates are at a 70-year high. The Centers for Disease Control and Prevention said Jan. 30 that 207,255 cases were reported in 2022, continuing a steep increase over five years. Between 2018 and 2022, syphilis rates rose about 80%. The epidemic of sexually transmitted infections — especially syphilis — is “out of control,” said the National Coalition of STD Directors.

The surge has been even more pronounced in Tennessee, where infection rates for the first two stages of syphilis grew 86% between 2017 and 2021.

But this already difficult situation was complicated last spring by a shortage of a specific penicillin injection that is the go-to treatment for syphilis. The ongoing shortage is so severe that public health agencies have recommended that providers ration the drug — prioritizing pregnant patients, since it is the only syphilis treatment considered safe for them. Congenital syphilis, which happens when the mom spreads the disease to the fetus, can cause birth defects, miscarriages, and stillbirths.

Across the country, 3,755 cases of congenital syphilis were reported to the CDC in 2022 — that’s 10 times as high as the number a decade before, the recent data shows. Of those cases, 231 resulted in stillbirth and 51 led to infant death. The number of cases in babies swelled by 183% between 2018 and 2022.

“Lack of timely testing and adequate treatment during pregnancy contributed to 88% of cases of congenital syphilis,” said a report from the CDC released in November. “Testing and treatment gaps were present in the majority of cases across all races, ethnicities, and U.S. Census Bureau regions.”

Hamilton County’s syphilis rates have mirrored the national trend, with an increase in cases for all groups, including infants.

In November, the maternal and infant health advocacy organization March of Dimes released its annual report on states’ health outcomes. It found that, nationwide, about 15.5% of pregnant people received care beginning in the fifth month of pregnancy or later — or attended fewer than half the recommended prenatal visits. In Tennessee, the rate was even worse, 17.4%.

But Miller said even those who attend every recommended appointment can run into problems because providers are required to test for syphilis only at the beginning of a pregnancy. The idea is that if you test a few weeks before birth, there is time to treat the infection.

However, that recommendation hinges on whether the provider suspects the patient was exposed to the bacterium that causes syphilis, which may not be obvious for people who say their relationships are monogamous.

“What we found is, a lot of times their partner was not as monogamous, and they were bringing it into the relationship,” Miller said.

Even if the patient tested negative initially, they may have contracted syphilis later in pregnancy, when testing for the disease is not routine, he said.

Two antibiotics are used to treat syphilis, the injectable penicillin and an oral drug called doxycycline.

Patients allergic to penicillin are often prescribed the oral antibiotic. But the World Health Organization strongly advises pregnant patients to avoid doxycycline because it can cause severe bone and teeth deformities in the infant.

As a result, pregnant syphilis patients are often given penicillin, even when they’re allergic, using a technique called desensitization, said Mark Turrentine, a Houston OB-GYN. Patients are given low doses in a hospital setting to help their bodies get used to the drug and to check for a severe reaction. The penicillin shot is a one-and-done technique, unlike an antibiotic, which requires sticking to a two-week regimen.

“It’s tough to take a medication for a long period of time,” Turrentine said. The single injection can provide patients and their clinicians peace of mind. “If they don’t come back for whatever reason, you’re not worried about it,” he said.

The Metro Public Health Department in Nashville, Tennessee, began giving all nonpregnant adults with syphilis the oral antibiotic in July, said Laura Varnier, nursing and clinical director.

Turrentine said he started seeing advisories about the injectable penicillin shortage in April, around the time the antibiotic amoxicillin became difficult to find and physicians were using penicillin as a substitute, potentially precipitating the shortage, he said.

The rise in syphilis has created demand for the injection that manufacturer Pfizer can’t keep up with, according to the American Society of Health-System Pharmacists. “There is insufficient supply for usual ordering,” the ASHP said in a memo.

Even though penicillin has been around a long time, manufacturing it is difficult, largely because so many people are allergic, said Erin Fox, associate chief pharmacy officer for the University of Utah health system and an adjunct professor at the university, who studies drug shortages.

“That means you can’t make other drugs on that manufacturing line,” she said. Only major manufacturers like Pfizer have the resources to build and operate such a specialized, cordoned-off facility. “It’s not necessarily efficient — or necessarily profitable,” Fox said.

In a statement, Pfizer confirmed the amoxicillin shortage and surge in syphilis increased demand for injectable penicillin by about 70%. Representatives said the company invested $38 million in the facility that produces this form of penicillin, hiring more staff and expanding the production line.

“This ramp up will take some time to be felt in the market, as product cycle time is 3-6 months from when product is manufactured to when it is available to be released to customers,” the statement reads. The company estimated the shortage would be significantly alleviated by spring.

In the meantime, Miller said, his clinic in Chattanooga is continuing to strategize. Each dose of injectable penicillin can cost hundreds of dollars. Plus, it has to be placed in cold storage, and it expires after 48 months.

Even with the dramatic increase in cases, syphilis is still relatively rare. More than 7 million people live in Tennessee, and in 2019, providers statewide reported 683 cases of syphilis.

Health departments like Miller’s treat the bulk of syphilis patients. Many patients are sent by their provider to the health department, which works with contact tracers to identify and notify sexual partners who might be affected and tests patients for other sexually transmitted infections, including HIV.

“When you diagnose in the office, think of it as just seeing the tip of the iceberg,” Miller said. “You need a team of individuals to be able to explore and look at the rest of the iceberg.”

This story is part of a partnership that includes WPLN, NPR, and KFF Health News.

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

USE OUR CONTENT

This story can be republished for free (details).