The FDA conducted an investigation into morel mushrooms after the severe illness outbreak linked to Dave’s Sushi in Bozeman in late March and April. The investigation found that undercooked or raw morels were the likely culprit, and it led the agency to issue its first guidelines on preparing morels.

“The toxins in morel mushrooms that may cause illness are not fully understood; however, using proper preparation procedures, such as cooking, can help to reduce toxin levels,” according to the FDA guidance.

Even then, a risk remains, according to the FDA: “Properly preparing and cooking morel mushrooms can reduce risk of illness, however there is no guarantee of safety even if cooking steps are taken prior to consumption.”

Jon Ebelt, spokesperson for Montana’s health department, said there is limited public health information or medical literature on morels. And samples of the morels taken from Dave’s Sushi detected no specific toxin, pathogen, pesticide, or volatile or nonvolatile organic compound in the mushrooms.

Aaron Parker, the owner of Dave’s Sushi, said morels are a “boutique item.” In season, generally during the spring and fall, morels can cost him $40 per pound, while morels purchased out of season are close to $80 per pound, he said.

Many highly regarded recipe books describe sauteing morels to preserve the sought-after, earthy flavor. At Dave’s, a marinade, sometimes boiling, was poured over the raw mushrooms before they were served, Parker said. After his own investigation, Parker said he found boiling them between 10 and 30 minutes is the safest way to prepare morel mushrooms.

Parker said he reached out to chefs across the country and found that many, like him, were surprised to learn about the toxicity of morels.

“They had no idea that morel mushrooms had this sort of inherent risk factor regardless of preparation,” Parker said.

According to the FDA’s Food Code, the vast majority of the more than 5,000 fleshy mushroom species that grow naturally in North America have not been tested for toxicity. Of those that have, 15 species are deadly, 60 are toxic whether raw or cooked — including “false” morels, which look like spongy edible morels — and at least 40 are poisonous if eaten raw, but safer when cooked.

The North American Mycological Association, a national nonprofit whose members are mushroom experts, recorded 1,641 cases of mushroom poisonings and 17 deaths from 1985 to 2006. One hundred and twenty-nine of those poisonings were attributed to morels, but no deaths were reported.

Marian Maxwell, the outreach chairperson for the Puget Sound Mycological Society, based in Seattle, said cooking breaks down the chitin in mushrooms, the same compound found in the exoskeletons of shellfish, and helps destroy toxins. Maxwell said morels may naturally contain a type of hydrazine — a chemical often used in pesticides or rocket fuel that can cause cancer — which can affect people differently. Cooking does boil off the hydrazine, she said, “but some people still have reactions even though it’s cooked and most of that hydrazine is gone.”

Heather Hallen-Adams, chair of the toxicology committee of the North American Mycological Association, said hydrazine has been shown to exist in false morels, but it’s not as “clear-cut” in true morels, which were the mushrooms used at Dave’s Sushi.

Mushroom-caused food poisonings in restaurant settings are rare — the Montana outbreak is believed to be one of the first in the U.S. related to morels — but they have happened infrequently abroad. In 2019, a morel food poisoning outbreak at a Michelin-star-rated restaurant in Spain sickened about 30 customers. One woman who ate the morels died, but her death was determined to be from natural causes. Raw morels were served on a pasta salad in Vancouver, British Columbia, in 2019 and poisoned 77 consumers, though none died.

Before the new guidelines were issued, the FDA’s Food Code guidance to states was only that serving wild mushrooms must be approved by a “regulatory authority.”

The FDA’s Food Code bans the sale of wild-picked mushrooms in a restaurant or other food establishment unless it’s been approved to do so, though cultivated wild mushrooms can be sold if the cultivation operations are overseen by a regulatory agency, as was the case with the morels at Dave’s Sushi. States’ regulations vary, according to a 2021 study by the Georgia Department of Public Health and included in the Association of Food and Drug Officials’ regulatory guidelines. For example, Montana and a half-dozen other states allow restaurants to sell wild mushrooms if they come from a licensed seller, according to the study. Seventeen other states allow the sale of wild mushrooms that have been identified by a state-credentialed expert.

The study found that the varied resources states use to identify safe wild mushrooms — including mycological associations, academics, and the food service industry — may suggest a need for better communication.

The study recognized a “guidance document” as the “single most important step forward” given the variety in regulations and the demand for wild mushrooms.

Hallen-Adams said raw morels are known to be poisonous by “mushroom people,” but that’s not common knowledge among chefs.

In the Dave’s Sushi case, Hallen-Adams said, it was obvious that safety information didn’t get to the people who needed it. “And this could be something that could be addressed by labeling,” she said.

There hasn’t been much emphasis placed on making sure consumers know how to properly prepare the mushrooms, Hallen-Adams said, “and that’s something we need to start doing.”

Hallen-Adams, who trains people in Nebraska on mushroom identification, said the North American Mycological Association planned to update its website and include more prominent information about the need to cook mushrooms, with a specific mention of morels.

Montana’s health department intends to publish guidelines on morel safety in the spring, when morel season is approaching.

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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Quinto, 30, had been pinned on the ground for at least 90 seconds by police in California and stopped breathing. He died three days later.

Now his relatives are asking a federal judge to exclude any testimony about “excited delirium” in their wrongful death case against the city of Antioch. Their case may be stronger than ever.

Their push comes at the end of a pivotal year for the long-standing, nationwide effort to discard the use of excited delirium in official proceedings. Over the past 40 years, the discredited, racially biased theory has been used to explain away police culpability for many in-custody deaths. But in October, the American College of Emergency Physicians disavowed a key paper that seemingly gave it scientific legitimacy, and the College of American Pathologists said it should no longer be cited as a cause of death.

That same month, California’s Democratic Gov. Gavin Newsom signed the nation’s first law to ban the term “excited delirium” as a diagnosis and cause of death on death certificates, autopsy reports, and police reports. Legislators in other states are expected to consider similar bills next year, and some law enforcement agencies and training organizations have dropped references to excited delirium from their policy manuals and pulled back from training police on the debunked theory.

Despite all that momentum, families, attorneys, policing experts, and doctors say much remains to be done to correct the mistakes of the past, to ensure justice in ongoing trials, and to prevent avoidable deaths in the future. But after years of fighting, they’re heartened to see any movement at all.

“This entire thing, it’s a nightmare,” said Bella Collins, Angelo’s sister. “But there are silver linings everywhere, and I feel so fortunate to be able to see change happening.”

Ultimately, the campaign against excited delirium seeks to transform the way police deal with people undergoing mental health crises.

“This is really about saving lives,” said Joanna Naples-Mitchell, an attorney who worked on an influential Physicians for Human Rights review of excited delirium.

Changing Law Enforcement Training

The use of the term “excited delirium syndrome” became pervasive after the American College of Emergency Physicians published a white paper on it in 2009. It proposed that individuals in a mental health crisis, often under the influence of drugs or alcohol, can exhibit superhuman strength as police try to control them, and then die suddenly from the condition, not the police response.

The ACEP white paper was significant in catalyzing police training and policy, said Marc Krupanski, director of criminal justice and policing at Arnold Ventures, one of the largest nonprofit funders of criminal justice policy. The theory contributed to deaths, he said, because it encouraged officers to apply greater force rather than call medical professionals when they saw people in aggressive states.

After George Floyd’s 2020 death, which officers blamed on excited delirium, the American Medical Association and the American Psychiatric Association formally rejected it as a medical condition. Then came disavowals from the National Association of Medical Examiners and the emergency physicians’ and pathologists’ groups this year.

The moves by medical societies to renounce the term have already had tangible, albeit limited, effects. In November, Lexipol, a training organization used by thousands of public safety agencies in the U.S., reiterated its earlier move away from excited delirium, citing the California law and ACEP’s retraction of the 2009 white paper.

Lexipol now guides officers to rely on what they can observe, and not to guess at a person’s mental status or medical condition, said Mike Ranalli, a lawyer and police trainer with the Texas-based group. “If somebody appears to be in distress, just get the EMS,” he said, referring to emergency medical services.

Patrick Caceres, a senior investigator at the Bay Area Rapid Transit’s Office of the Independent Police Auditor, successfully pushed to remove excited delirium from the BART Police Department’s policy manual after learning about Quinto’s death in 2020 and seeing the American Medical Association’s rejection of it the following year.

Caceres fears that rooting out the concept — not just the term — more broadly will take time in a country where law enforcement is spread across roughly 18,000 agencies governed by independent police chiefs or sheriffs.

“The kinds of training and the kinds of conversations that need to happen, we’re still a long way away from that,” said Caceres.

In Tacoma, Washington, where three police officers have been charged with the 2020 death of Manuel Ellis, The Seattle Times reported that local first responders testified as recently as October that they still “embrace” the concept.

But in Colorado, the state’s Peace Officer Standards and Training board ruled on Dec. 1 to drop excited delirium training for new law enforcement officers, KUSA-TV reported.

And two Colorado lawmakers, Democratic state Reps. Judy Amabile and Leslie Herod, have drafted a bill for the 2024 legislative session banning excited delirium from other police and EMS training and prohibiting coroners from citing it as a cause of death.

“This idea that it gives you superhuman strength causes the police to think they should respond in a way that is often completely inappropriate for what’s actually happening,” Amabile said. “It just seems obvious that we should stop doing that.”

She would like police to focus more on de-escalation tactics, and make sure 911 calls for people in mental health crisis are routed to behavioral health professionals who are part of crisis intervention teams.

Taking ‘Excited Delirium’ Out of the Equation

As the Quinto family seeks justice in the death of the 30-year-old Navy veteran, they are hopeful the new refutations of excited delirium will bolster their wrongful death lawsuit against the city of Antioch. On the other side, defense lawyers have argued that jurors should hear testimony about the theory.

On Oct. 26, the family cited both the new California law and the ACEP rebuke of the diagnosis when it asked a U.S. District Court judge in California to exclude witness testimony and evidence related to excited delirium, saying it “cannot be accepted as a scientifically valid diagnosis having anything to do with Quinto’s death.”

“A defense based on BS can succeed,” family attorney Ben Nisenbaum said. “It can succeed by giving jurors an excuse to give the cops a way out of this.”

Meanwhile, advocates are calling for a reexamination of autopsies of those who died in law enforcement custody, and families are fighting to change death certificates that blame excited delirium.

The Maryland attorney general’s office is conducting an audit of autopsies under the tenure of former chief medical examiner David Fowler, who has attributed various deaths to excited delirium. But that’s just one state reviewing a subset of its in-custody deaths.

The family of Alexander Rios, 28, reached a $4 million settlement with Richland County, Ohio, in 2021 after jail officers piled on Rios and shocked him until he turned blue and limp in September 2019. During a criminal trial against one of the officers that ended in a mistrial this November, the pathologist who helped conduct Rios’ autopsy testified that her supervisor pressured her to list “excited delirium” as the cause of death even though she didn’t agree. Still, excited delirium remains his official cause of death.

The county refused to update the record, so his relatives are suing to force a change to his official cause of death. A trial is set for May.

Changing the death certificate will be a form of justice, but it won’t undo the damage his death has caused, said Don Mould, Rios’ stepfather, who is now helping to raise one of Rios’ three children.

“Here is a kid that’s life is upside down,” he said. “No one should go to jail and walk in and not be able to walk out.”

In some cases, death certificates may be hard to refile. Quinto’s family has asked a state judge to throw out the coroner’s findings about his 2020 death. But the California law, which takes effect in January and bans excited delirium on death certificates, cannot be applied retroactively, said Contra Costa County Counsel Thomas Geiger in a court filing.

And, despite the 2023 disavowals by the main medical examiners’ and pathologists’ groups, excited delirium — or a similar explanation — could still show up on future autopsy reports outside California. No single group has authority over the thousands of individual medical examiners and coroners, some of whom work closely with law enforcement officials. The system for determining a cause of death is deeply disjointed and chronically underfunded.

“One of the unfortunate things, at least within forensic pathology, is that many things are very piecemeal,” said Anna Tart, a member of the Forensic Pathology Committee of the College of American Pathologists. She said that CAP plans to educate members through conferences and webinars but won’t discipline members who continue to use the term.

Justin Feldman, principal research scientist with the Center for Policing Equity, said that medical examiners need even more pressure and oversight to ensure that they don’t find other ways to attribute deaths caused by police restraint to something else.

Only a minority of deaths in police custody now cite excited delirium, he said. Instead, many deaths are being blamed on stimulants, even though fatal cocaine or methamphetamine overdoses are rare in the absence of opioids.

Yet advocates are hopeful that this year marks enough of a turning point that alternative terms will have less traction.

The California law and ACEP decision take “a huge piece of junk science out of the equation,” said Julia Sherwin, a California civil rights attorney who co-authored the Physicians for Human Rights report.

Sherwin is representing the family of Mario Gonzalez, who died in police custody in 2021, in a lawsuit against the city of Alameda, California. Excited delirium doesn’t appear on Gonzalez’s death certificate, but medical experts testifying for the officers who restrained him cited the theory in depositions. 

She said she plans to file a motion excluding the testimony about excited delirium in that upcoming case and similar motions in all the restraint-asphyxia cases she handles.

“And, in every case, lawyers around the country should be doing that,” Sherwin said.

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

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

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Impulsado por los planes Medi-Cal del condado —que proporcionan seguro médico a los residentes con bajos ingresos— en colaboración con su Oficina de Educación y el Departamento de Salud Mental, el programa se basa en servicios de teleterapia proporcionados por Hazel Health, una de las empresas que han surgido para hacer frente a la escasez nacional de servicios de salud mental, algo que se agravó durante la pandemia de covid-19.

La teleterapia es uno de los cuatro proyectos del condado de Los Angeles que recibirán en conjunto hasta $83 millones del Programa de Incentivos de Salud Mental para Estudiantes del estado, uno de los componentes del “plan maestro” del gobernador demócrata para subsanar las deficiencias en el acceso de los jóvenes a los servicios de salud mental.

El contrato de Hazel Health en Los Angeles tiene como meta ayudar a las escuelas sobrecargadas a hacer frente al aumento de la demanda de estos servicios. Promete ser una iniciativa piloto para demostrar tanto la eficacia de la terapia virtual para los alumnos, como la capacidad de educadores y administradores para gestionar eficazmente un programa extenso y delicado en colaboración con una empresa con fines de lucro.

Para algunos educadores y familias los resultados iniciales son prometedores.

Anjelah Salazar, de 10 años, dijo que el especialista de Hazel la ha ayudado a sentirse mucho mejor. La estudiante de quinto grado empezó a sufrir ataques de pánico diarios al cambiar de escuela este año a la primaria Stanton de Glendora.

Su madre, Rosanna Chavira, contó que no sabía qué hacer —aunque es coordinadora clínica de una empresa que trata enfermedades mentales— y le preocupaba no poder pagar un terapeuta que aceptara su seguro. Cuando Chavira supo de Hazel, no lo dudó.

“El hecho de que sea gratis y de que un profesional le enseñe estrategias para sobrellevar distintas situaciones significa mucho”, dijo Chavira. “Ya se notan los resultados”.

Salazar dijo que hasta ahora tuvo cinco citas virtuales con su terapeuta. Una técnica de afrontamiento que aprecia especialmente es un ejercicio de tapping: todas las noches, antes de acostarse, se presiona con el dedo un poquito los ojos, las mejillas, el pecho y las rodillas. Con cada toque, dice: “Soy valiente”.

Christine Crone, madre de Brady, alumno de séptimo grado, afirmó que aún no ha comprobado si las sesiones son eficaces para su hijo, que estudia en Arroyo Seco Junior High en Santa Clarita, pero sí sabe que las disfruta.

“Normalmente le cuesta llegar a tiempo y estar preparado, pero con estas sesiones siempre deja lo que está haciendo y es puntual”, dijo Crone. “Dice que su terapeuta es agradable, divertido y que es fácil hablar con él”.

Jennifer Moya, consejera de salud mental en la escuela primaria Martha Baldwin de Alhambra, una ciudad al este de Los Angeles, dijo que a sus alumnos les gusta la flexibilidad de la teleterapia, que les permite reunirse con los terapeutas en cualquier momento entre las 7 de la mañana y las 7 de la tarde.

“Esta generación de niños ha crecido en la era digital”, señaló Moya, que se encarga de remitir a los alumnos a Hazel en su centro. “Les encanta que esto sea fácil”.

Pablo Isais, consejero de salud mental en la escuela primaria Granada’s Alhambra, dijo que los servicios también pueden ser una solución provisional mientras un estudiante espera una cita en persona, que puede tomar de seis a ocho semanas.

“Ser capaz de comunicarles que hay servicios disponibles a los que pueden acceder en la próxima semana es increíble”, dijo Moya.

Hasta ahora, sólo 607 estudiantes del condado de Los Angeles han participado en las sesiones desde que se ofrecieron por primera vez, en Compton, en diciembre de 2022, explicó Alicia Garoupa, jefa de servicios de bienestar y apoyo de la Oficina de Educación. Ella reconoció algunos problemas iniciales, pero aseguró que Hazel es “otra herramienta en nuestra caja de herramientas”.

El estado confía en las empresas con fines de lucro

La teleterapia desempeña un papel cada vez más importante en las escuelas del país, a medida que educadores y trabajadores sociales se enfrentan a la presión de abordar los crecientes problemas de salud mental. Según un informe de abril de Chalkbeat, 13 de los 20 distritos escolares más grandes del país, incluido Los Angeles Unified, la han incorporado desde que comenzó la pandemia.

El acuerdo del condado de Los Angeles con Hazel prevé el pago a la empresa de hasta $20 millones hasta finales de 2024. Además, Hazel puede facturar a los seguros de los estudiantes.

La empresa con sede en San Francisco, fundada en 2015, ha recaudado $112,5 millones de inversores y tiene contratos en 15 estados. Entre las empresas que buscan los dólares destinados para la salud mental de los jóvenes están otra startup de San Francisco, Daybreak Health, graduada de la prestigiosa incubadora tecnológica Y Combinator, junto con BeMe, Brightline y Kooth.

California eligió a Brightline y Kooth para una iniciativa estatal de $532 millones, en 2024, sobre servicios virtuales de comportamiento juvenil, otro componente importante del plan maestro de Newsom. Algunos programas estatales y locales se superponen, reconoció Naomi Allen, cofundadora y CEO de Brightline, pero dijo que la oferta de Brightline es más amplia que lo que Hazel hace en las escuelas, con servicios que incluyen desde sesiones de coaching para cuidadores hasta recursos de meditación.

“El estado financia el acceso gratuito a los servicios para todos los niños del estado, lo cual es un programa extraordinariamente ambicioso”, afirmó Allen.

Aún así, quedan muchos interrogantes sobre la eficacia de la teleterapia para estudiantes. Tampoco ha resultado ser una fuente de ingresos segura para las empresas: Brightline despidió al 20% de su plantilla la primavera pasada, la segunda ronda de despidos en seis meses.

Complemento, no solución

Chelsy Duffer-Dunbar, que en aquel momento trabajaba para Los Angeles Unified como trabajadora social psiquiátrica, declaró a KFF Health News en octubre que aún no había trabajado con Hazel, pero señaló que el condado exige que un miembro del personal permanezca a la vista del estudiante durante sus citas y le ayude si surgen problemas técnicos.

“Le sigue quitando tiempo al personal”, aseguró Duffer-Dunbar. “Mi día ya es muy estresante. No puedo imaginar tener una evaluación por amenaza y otra por suicidio en el trabajo y luego tener que buscar a alguien para que se siente en esta sesión de terapia con el niño o la niña y su iPad”.

Duffer-Dunbar añadió que quiere que el distrito dé prioridad a los terapeutas en persona que trabajan con la comunidad local, especialmente para los niños más pequeños que tienen problemas con la teleterapia.

Duffer-Dunbar ha dejado el distrito por recortes presupuestarios que la obligaban a desempeñar un trabajo más agobiante.

Hazel insistió en que la teleterapia no es una solución para todas las situaciones.

“Es una oportunidad para ampliar el acceso”, apuntó Andrew Post, jefe de innovación de la empresa.

Colaboración entre educación y salud

Fue necesaria una complicada colaboración entre los distritos escolares, las agencias del condado y los dos planes de Medi-Cal, L.A. Care Health Plan y Health Net, para poner en marcha el programa de terapia escolar. Las normas de financiación estatales se diseñaron para ayudar a las entidades a trabajar juntas.

“Este programa nos ha ayudado a acercarnos a los distritos escolares”, comentó Michael Brodsky, director de salud comunitaria de L.A. Care Health Plan. “Si podemos tratar a los niños cuando van a la escuela y derivarlos para que reciban tratamiento mientras están en la escuela, eso es bueno”.

Hazel ofrece principalmente sesiones de terapia individual de corta duración con trabajadores sociales clínicos u otros consejeros, el 40% de los cuales son bilingües. Son los más indicados para prestar apoyo temporal a quienes tienen necesidades leves o moderadas, como los estudiantes que luchan contra el estrés académico o empiezan en una escuela nueva, pero también pueden derivar a pacientes para que reciban atención a largo plazo.

El mayor distrito inscrito en el programa, Los Angeles Unified, cuenta con el 41% de los alumnos del condado, pero no todos los distritos están preparados para dar el salto. Cuatro de cada 10 distritos han optado por no ofrecer los servicios de Hazel, lo que Garoupa atribuye en parte a la preocupación por el intercambio de información sobre los estudiantes.

El contrato con Hazel termina en diciembre de 2024, pero Garoupa dijo que la Oficina de Educación y sus socios tienen la intención de mantener los servicios hasta junio de 2025. Cualquier prórroga posterior dependerá de los resultados.

Sonya Smith, colega de Garoupa, indicó que la Oficina de Educación evaluará la eficacia de Hazel a través de una encuesta anual, informes mensuales de impacto y reuniones semanales.

“El número de estudiantes que utilizan Hazel va a ser, obviamente, una medida clave”, añadió Smith. “La tasa de utilización de Hazel es del 3% al 8%. Evaluaremos si esas cifras se mantienen, si los estudiantes acceden a la atención en el momento oportuno y si alivia la carga del personal escolar y los proveedores comunitarios”.

Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation. 

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

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Spearheaded by the county’s Medi-Cal plans — which provide health insurance to low-income residents — in collaboration with its Office of Education and Department of Mental Health, the LA school program relies on teletherapy services provided by Hazel Health, one of a clutch of companies that have sprung up to address a nationwide shortage of mental health services that grew much worse during the covid-19 pandemic.

The teletherapy effort is one of four LA County projects that will collectively receive up to $83 million from the state’s Student Behavioral Health Incentive Program, one component of the Democratic governor’s “master plan” to address gaps in youth mental health care access.

LA’s Hazel Health contract is aimed at helping overburdened schools cope with a surge in demand for mental health services. It promises to be a telling case study in both the efficacy of virtual therapy for students and the ability of educators and administrators to effectively manage a sprawling and sensitive program in partnership with a for-profit company.

For some Los Angeles County educators and families, the initial results are promising.

Anjelah Salazar, 10, said her Hazel clinician has helped her feel a lot better. After the fifth grader switched to a new school this year, Stanton Elementary in Glendora, she started having panic attacks every day.

Her mom, Rosanna Chavira, said she didn’t know what to do — even though she’s a clinical coordinator for a company that treats mental health conditions — and worried she wouldn’t be able to find an affordable therapist who accepted their insurance. Once Chavira learned about Hazel, she jumped at the opportunity.

“This being free and having a licensed professional teaching her coping skills, it just means the world,” Chavira said. “You can already see changes.”

Salazar said she’s met with her virtual therapist five times so far. One coping technique that she especially appreciates is a tapping exercise: Every night before bed, she taps her eyes, her cheeks, her chest, and her knees. With each tap, she recites the same affirmation: “I am brave.”

Christine Crone, parent of seventh grader Brady, said she has yet to see if the sessions have been effective for her son, who attends Arroyo Seco Junior High in Santa Clarita, but she knows he enjoys them.

“He struggles normally with being on time and prepared, but with these sessions, he always stops what he is doing and makes sure he is logged in on time,” Crone said. “He says that his therapist is nice, fun, and easy to talk to.”

Jennifer Moya, a mental health counselor at Martha Baldwin Elementary in Alhambra, a city east of Los Angeles, said her students like the flexibility of teletherapy, which allows them to meet with clinicians anytime between 7 a.m. and 7 p.m.

“This generation of kids has grown up digital,” said Moya, who is in charge of referring students to Hazel at her school. “They love that this is easy.”

Pablo Isais, a mental health counselor at Alhambra’s Granada Elementary School, said the services can also be a stopgap while a student waits for an in-person appointment, which can take six to eight weeks.

“To be able to let them know that there are services available that they can access within the next week is amazing,” Moya said.

Thus far, early in the rollout, only 607 Los Angeles County students have participated in Hazel sessions since they were first offered, in Compton, in December 2022, said Alicia Garoupa, chief of well-being and support services for the Office of Education. She acknowledged some bumps in the rollout but said Hazel is “another tool in our toolbox.”

State Relies on For-Profit Ventures

Teletherapy is playing an increasingly important role in schools across the nation as educators and social workers face pressure to address growing mental health issues. According to an April Chalkbeat report, 13 of the nation’s 20 largest school districts, including Los Angeles Unified, have added teletherapy since the pandemic began.

LA County’s deal with Hazel calls for the company to be paid up to $20 million through the end of 2024. In addition, Hazel can bill students’ insurance.

The San Francisco-based company, founded in 2015, has raised $112.5 million from investors and has contracts in 15 different states. Other companies chasing youth mental health dollars include another San Francisco startup, Daybreak Health, a graduate of the prestigious Y Combinator tech incubator, along with BeMe, Brightline, and Kooth.

California chose Brightline and Kooth for a 2024 $532 million statewide initiative on virtual youth behavioral services, another important component of Newsom’s master plan. There is some overlap between the state and local programs, Brightline co-founder and CEO Naomi Allen acknowledged, but she said the Brightline offering is broader than what Hazel is doing in schools, with services including everything from coaching sessions for caregivers to meditation resources.

“The state is funding free access to services for every child in the state, which is just a remarkably ambitious program,” said Allen.

Still, many questions remain about the efficacy of teletherapy for students. It’s also proving to be no surefire moneymaker for the companies thus far: Brightline laid off 20% of its staff last spring, the second round of layoffs in six months.

Supplement, Not Solution

Chelsy Duffer-Dunbar, who at the time worked for Los Angeles Unified as a psychiatric social worker, told KFF Health News in October that she hadn’t yet worked with Hazel, but noted that the county requires that a member of staff stay within eyesight of the student during their appointments and assist if tech issues arise.

“It is still taking up staff time,” Duffer-Dunbar said. “My day is already so stressful. I can’t imagine having a threat assessment and a suicide assessment at work and then trying to scramble around to find someone to sit in on this therapy session with the kiddo and their iPad.”

Duffer-Dunbar said she wants the district to prioritize in-person clinicians who are immersed in the local community, especially for younger kids who have trouble engaging with teletherapy.

Duffer-Dunbar has since left the district in response to budget cuts that forced her into a more burdensome role.

Hazel emphasized that teletherapy is not a one-size-fits-all solution.

“It’s an opportunity to expand access,” said Andrew Post, chief of innovation at the company.

Education and Health Care Working Together

It took a complicated collaboration between school districts, county agencies, and the two Medi-Cal plans, L.A. Care Health Plan and Health Net, to set up the school therapy program. The state funding rules were designed to push the entities to work together.

“This program has helped us get closer to school districts,” said Michael Brodsky, senior medical director for community health at L.A. Care Health Plan. “If we can catch kids while they’re at school and refer them to get treatment while they’re in school, that’s good.”

Hazel provides primarily short-term one-to-one therapy sessions with clinical social workers or other licensed counselors, 40% of whom are bilingual. They are best suited to provide temporary support to those with mild to moderate needs, such as students struggling with academic stress or starting at a new school, but they can also make referrals for long-term care.

The largest district enrolled in the program, Los Angeles Unified, accounts for 41% of the county’s students, but not all districts are ready to take the leap. Four in 10 districts have opted to not offer Hazel’s services, which Garoupa attributes partially to data-sharing concerns.

The contract with Hazel ends in December 2024, but Garoupa said the Office of Education and its partners intend to maintain services through June 2025. Any extension beyond that will depend on the results.

Sonya Smith, a colleague of Garoupa’s, said the Office of Education will be continuously evaluating Hazel’s effectiveness through an annual survey, monthly impact reports, and weekly meetings.

“The number of students that are using Hazel is obviously going to be a key metric,” Smith said. “Hazel’s historic utilization rate is 3% to 8%. We’ll be evaluating if those numbers hold up, if students are accessing care in a timely manner, and if it’s lightening the burden for school staff and community-based providers.”

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

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

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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.

With other GOP presidential candidates following Donald Trump’s lead in calling for an end to the Affordable Care Act, Democrats are jumping on an issue they think will favor them in the 2024 elections. The Biden administration almost immediately rolled out a controversial proposal that could dramatically decrease the price of drugs developed with federally funded research dollars. The drug industry and the business community at large are vehemently opposed to the proposal, but it is likely to be popular with voters.

Meanwhile, the Supreme Court hears arguments in a case to decide whether the Sackler family should be able to shield billions of dollars taken from its bankrupt drug company, Purdue Pharma, from further lawsuits regarding the company’s highly addictive drug OxyContin.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Alice Miranda Ollstein of Politico, and Rachana Pradhan of KFF Health News.

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Anna Edney
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Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories

Among the takeaways from this week’s episode:

• The ACA may end up back on the proverbial chopping block if Trump is reelected. But as many in both parties know, it is unlikely to be a winning political strategy for Republicans. ACA enrollment numbers are high, as is the law’s popularity, and years after a failed effort during Trump’s presidency, Republicans still have not unified around a proposal to replace it.
• Democrats are eager to capitalize on the revival of “repeal and replace.” This week, the Biden administration announced plans to exercise so-called “march-in rights,” which it argues allow the government to seize certain patent-protected drugs whose prices have gotten too high and open them to price competition. The plan, once largely embraced by progressives, could give President Joe Biden another opportunity to claim his administration has proven more effective than Trump’s heading into the 2024 election.
• The Senate voted to approve more than 400 military promotions this week, effectively ending the 10-month blockade by Republican Sen. Tommy Tuberville of Alabama over a Pentagon policy that helps service members travel to obtain abortions. At the state level, the Texas courts are considering cases over its exceptions to the state’s abortion ban, while in Ohio, a woman who miscarried after being sent home from the hospital is facing criminal charges.
• Meanwhile, the Supreme Court soon could rule on whether EMTALA, or the Emergency Medical Treatment and Active Labor Act, requires doctors to perform abortions in emergencies. And justices are also considering whether to allow a settlement deal to move forward that does not hold the Sacker family accountable for the harm caused by opioids.
• “This Week in Medical Misinformation” highlights a lawsuit filed by Texas Attorney General Ken Paxton accusing Pfizer of failing to end the covid-19 pandemic with its vaccine.

Also this week, Rovner interviews Dan Weissmann, host of KFF Health News’ sister podcast, “An Arm and a Leg,” about his investigation into hospitals suing their patients for unpaid medical bills.

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

Julie Rovner: The Wisconsin State Journal’s “Dane, Milwaukee Counties Stop Making Unwed Fathers Pay for Medicaid Birth Costs,” by David Wahlberg.  

Anna Edney: Bloomberg News’ “Tallying the Best Stats on US Gun Violence Is Trauma of Its Own,” by Madison Muller.  

Alice Miranda Ollstein: Stat’s “New Abortion Restrictions Pose a Serious Threat to Fetal Surgery,” by Francois I. Luks, Tippi Mackenzie, and Thomas F. Tracy Jr. 

Rachana Pradhan: KFF Health News’ “Patients Expected Profemur Artificial Hips to Last. Then They Snapped in Half,” by Brett Kelman and Anna Werner, CBS News.

Also mentioned in this week’s episode:

• Bloomberg News’ “The Pentagon Wants to Root Out Shoddy Drugs. The FDA Is in Its Way,” by Anna Edney and Riley Griffin.
• Ars Technica’s “Texas Sues Pfizer With COVID Anti-Fax Argument That Is Pure Stupid,” by Beth Mole.

Click to open the transcript

Transcript: Democrats See Opportunity in GOP Threats to Repeal Health Law 

KFF Health News’ ‘What the Health?’Episode Title: Democrats See Opportunity in GOP Threats to Repeal Health LawEpisode Number: 325Published: Dec. 7, 2023

[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 reporters in Washington. We’re taping this week on Thursday, Dec. 7, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this. So here we go. Today, we are joined via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Anna Edney of Bloomberg News.

Anna Edney: Hello.

Rovner: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Good morning, Julie.

Rovner: Later in this episode we’ll have my interview with Dan Weissmann, host of our sister podcast, “An Arm and a Leg.” Dan’s been working on a very cool two-part episode about hospitals suing their patients that he will explain. But first, this week’s news. So now that former President [Donald] Trump has raised the possibility of revisiting a repeal of the Affordable Care Act, all of the other Republican presidential wannabes are adding their two cents.

Florida Gov. Ron DeSantis says that rather than repeal and replace the health law, he would “repeal and supersede,” whatever that means. Nikki Haley has been talking up her anti-ACA bona fides in New Hampshire, and the leading Republican candidate for Senate in Montana is calling for a return to full health care privatization, which would mean getting rid of not only the Affordable Care Act, but also Medicare and Medicaid.

But the Affordable Care Act is more popular than ever, at least judging from this year’s still very brisk open enrollment signups. Alice, you wrote an entire story about how the ACA of 2023 is not the ACA of 2017, the last time Republicans took a serious run at it. How much harder would it be to repeal now?

Ollstein: It would be a lot harder. So, not only have a bunch of red and purple states expanded Medicaid since Republicans took their last swing at the law — meaning that a bunch more constituents in those states are getting coverage they weren’t getting before and might be upset if it was threatened by a repeal — but also just non-Medicaid enrollment is up as well, fueled in large part by all the new subsidies that were implemented over the last few years. And that’s true even in states that resisted expansions.

DeSantis’ Florida, for instance, has the highest exchange enrollment in the country. There’s just a lot more people with a lot more invested in maintaining the program. You have that higher enrollment, you have the higher popularity, and we still haven’t seen a real replacement or “supersede” plan, or whatever they want to call it. And folks I talk to on Capitol Hill, Republican lawmakers, even those that were pretty involved last time, do not think such a plan is coming.

Rovner: It did get asked about at the “last” Republican presidential primary debate last night, and there was an awful lot of hemming and hawing about greedy drug companies and greedy insurance companies, and I heard exactly nothing about any kind of plan. Has anybody else seen any sign of something that Republicans would actually do if they got rid of the Affordable Care Act?

Pradhan: No. There was a time, immediately after the ACA’s passage, that health care was a winning political issue for Republicans, right? It was multiple election cycles that they capitalized on Obamacare and used it to regain House majorities, Senate majorities, and the presidency eventually. But that has not been true for multiple years now. And I think they know that. I think establishment Republicans know that health care is not a winning issue for the party, which is why Democrats are so eager to capitalize on this reopening of ACA repeal, if you will.

Rovner: What a perfect segue, because I was going to say the Biden administration is wasting no time jumping back into health care with both feet, trying to capitalize on what it sees as a gigantic Republican misstep. Just this morning, they are rolling out new proposals aimed at further lowering prescription drug prices, and to highlight the fact that they’ve actually gotten somewhere in some lowering of prescription drug prices.

Now they would like to make it easier to use government “march-in rights,” which would let the government basically tell prescription drug companies, “You’re going to lower your price because we’re going to let other people compete against you, despite your patent.” They’re also doing, and I will use their words, a cross-government public inquiry into corporate greed in health care. Now, some of these things are super controversial. I mean, the march-in rights even before this was unveiled, we saw the drug industry complaining against. But they could also have a real impact if they did some of this, right? Anna, you’ve watched the drug price issue.

Edney: Yeah, I think they definitely could have an impact. This is one of those situations with the march-in rights where we don’t have any clue on where or how exactly, because we haven’t been told that this drug or this class of drugs are kind of what we’re aiming at at this point. It sounds like maybe there’s a little bit more of the plan to be baked, but I am sure there are a lot of progressives, particularly, who had pushed for this that, over the years, who are very excited to even see it mentioned and moving in some sort of way, which hasn’t really happened before.

And, clearly, the Biden administration wants to, like you said, capitalize on health care being part of the campaign. And they’ve done a lot on drug prices, at least a lot in the sense of what can be done. There’s negotiation in Medicare now for some drugs. They kept insulin for Medicare as well. So this is just another step they can say, “We’re doing something else,” and we’d have to see down the line exactly where they’d even plan to use it.

And, of course, as pharma always does, they said that this will hurt innovation and we won’t get any drugs. Not that things have been in place that long, but, clearly, we haven’t seen that so far.

Rovner: Yes, that is always their excuse. I feel like this is one of those times where it doesn’t even matter if any of these things get done, they’re putting them out there just to keep the debate going. This is obviously ground that the Biden campaign would love to campaign on — rather than talking about the economy that makes people mostly unhappy. I assume we’ll be seeing more of this.

Edney: Yeah. Your food prices and other things are very high right now. But if they can talk about getting drug prices lower, that’s a totally different thing that they can point to.

Ollstein: And it’s an easy way to draw the contrast. For people who might be apathetic and think, “Oh, it doesn’t matter who wins the presidential election,” this is an area where the Biden administration can credibly claim, based on what Trump recently said, “This is what’s at stake. This is the difference between my opponent and me. The health care of millions is on the line,” which has been a winning message in past elections.

And what’s been really striking to me is that even talking to a bunch of conservatives now, even though they don’t like the Affordable Care Act, they even are starting to argue that full-scale repeal and replace — now that it’s the status quo — that’s not even a conservative proposal.

They’re saying that it’s more conservative to propose smaller changes that chip around the edges and create some alternatives, but mainly leave it in place, which I think is really interesting, because for so long the litmus test was: Are you for full repeal, root and branch? And we’re just not really hearing that much anymore — except from Trump!

Rovner: The difficulty from the beginning is that the basis of the ACA was a Republican proposal. I mean, they were defanged from the start. It’s been very hard for them to come up with a replacement. What it already is is what Mitt Romney did in Massachusetts. Well, let us turn to the other big issue that Democrats hope will be this coming election year, and that’s abortion, where there was lots of news this week.

We will start with the fact that the 10-month blockade of military promotions by Alabama Republican Sen. Tommy Tuberville is over. Well, mostly over. On Tuesday, the Senate approved by voice vote more than 400 promotions that Tuberville had held up, with only a few four-star nominees still in question. Tuberville’s protests had angered not just Senate Democrats and the Biden administration, who said it was threatening national security, but increasingly his own Senate Republican colleagues.

Tuberville said he was holding up the nominations to protest the Biden administration’s policy of allowing active-duty military members and their dependents to travel out of state for an abortion if they’re stationed where it’s illegal, like in, you know, Alabama. So Alice, what did Tuberville get in exchange for dropping his 10-month blockade?

Ollstein: So, not much. I mean, his aim was to force the Biden administration to change the policy, and that didn’t happen — the policy supporting folks in the military traveling if they’re based in a state where abortion is banned and they need an abortion, supporting the travel to another state, still not paying for the abortion itself, which is still banned. And so that was the policy Tuberville was trying to get overturned, and he did not get that. So he’s claiming that what he got was drawing attention to it, basically. So we’ll see if he tries to use this little bit of remaining leverage to do anything. It does not seem like much was accomplished through this means, although there is a lot of anxiety that this sets a precedent for the future, not just on abortion issues, but, really, could inspire any senator to try to do this and hold a bunch of nominees hostage for whatever policy purpose they want.

Rovner: I know. I mean, senators traditionally sit on nominees for Cabinet posts. And the FDA and the CMS [Centers for Medicare & Medicaid Services] didn’t have a director for, like, three administrations because members were angry at the administration for something about Medicare and Medicaid. But I had never seen anybody hold up military promotions before. This was definitely something new. Rachana, you were going to add something?

Pradhan: Oh, I mean, I was just thinking on Alabama specifically. I mean, I don’t claim to know, even though there was rising anger in Sen. Tuberville’s own party about this move. I mean, I’m not saying I know that this is a factor or not, but in Alabama, regardless of what he tried to do, I think that the attorney general in Alabama has made it clear that he might try to prosecute organizations that help people travel out of state to get abortions.

And so, it’s not like this is only the last word when you’re even talking about military officers or people in the military. Even in his home state, you might see some greater activity on that anyway, which might make it easier for him to honestly, in a way, give it up because it’s not the only way that you could presumably prosecute organizations or people who tried to help others go out of state to access abortion.

Rovner: Yeah, it’s important to say that while he irritated a lot of people in Washington, he probably had a lot of support from people back home in Alabama, which he kept pointing out.

Ollstein: Right. And I saw national anti-abortion groups really cheering him on and urging their members to send him thank-you letters and such. And so definitely not just in his home state. There are conservatives who were backing this.

Rovner: Well, moving on to Texas, because there is always abortion news out of Texas, we have talked quite a bit about the lawsuit filed by women who experienced pregnancy complications and couldn’t get abortions. Well, now we have a separate emergency lawsuit from a woman named Kate Cox, who is currently seeking an abortion because of the threat to her health and life.

Both of these lawsuits aren’t trying to strike the Texas ban, just to clarify when a doctor can perform a medically needed abortion without possibly facing jail time or loss of their medical license. Alice, I know the hearing for Kate Cox is happening even now as we are taping. What’s the status of the other case? We’re waiting to hear from the Texas Supreme Court. Is that where it is?

Ollstein: Yeah. So oral arguments were the other day and a bunch of new plaintiffs have joined the lawsuit. So it’s expanded to a few dozen people now, mostly patients, but some doctors as well who are directly impacted by the law. There was some interesting back and forth in the oral arguments over standing.

And one of the things the state was hammering was that they don’t have standing to sue because they aren’t in this situation that this other woman is in today, where they’re actively pregnant, actively in crisis, and being actively prevented from accessing the health care that they need that their doctor recommends, which in some circumstances is an abortion. And so I think this is an interesting test of the state’s argument on that front.

Rovner: Also, the idea, I mean, that a woman who literally is in the throes of this crisis would step forward and have her name in public and it’s going to court in an emergency hearing today.

Ollstein: Right, as opposed to the other women who were harmed previously. By the time they are seeking relief in court, their pregnancy is already over and the damage has already been done, but they’re saying it’s a threat of a future pregnancy. It’s impacting their willingness to become pregnant again, knowing what could happen, what already happened. But the state was saying like, “Oh, but because you’re not actively in the moment, you shouldn’t have the right to sue.” And so now we’ll see what they say when someone is really in the throes of it.

Rovner: In the moment. Well, another troubling story this week comes from Warren, Ohio, where a woman who experienced a miscarriage is being charged with “abuse of a corpse” because she was sent home from the hospital after her water broke early and miscarried into her toilet, which is gross, but that’s how most miscarriages happen.

The medical examiner has since determined that the fetus was, in fact, born dead and was too premature to survive anyway. Yet the case seems to be going forward. Is this what we can expect to see in places like Ohio where abortion remains legal, but prosecutors want to find other ways to punish women?

Ollstein: I mean, I also think it’s an important reminder that people were criminalized for pregnancy loss while Roe [v. Wade] was still in place. I mean, it was rare, but it did happen. And there are groups tracking it. And so I think that it’s not a huge surprise that it could happen even more now, in this post-Roe era, even in states like Ohio that just voted overwhelmingly to maintain access to abortion.

Pradhan: Julie, do we know what hospital? Because when I was looking at the story, do we know what kind of hospital it was that sent this person away?

Rovner: No. The information is still pretty sketchy about this case, although we do know the prosecutor is sending it to a grand jury. We know that much. I mean, the case is going forward. And we do know that her water broke early and that she did visit, I believe, it was two hospitals, although I have not seen them named. I mean, there’s clearly more information to come about this case.

But yeah, Alice is right. I mean, I wrote about a case in Indiana that was in 2012 or 2013, it was a long time ago, about a woman who tried to kill herself and ended up only killing her fetus and ended up in jail for a year. I mean, was eventually released, but … it’s unusual but not unprecedented for women to be prosecuted, basically, for pregnancy loss.

Ollstein: Yeah, especially people who are struggling with substance abuse. That’s been a major area where that’s happened.

Pradhan: I would personally be very interested in knowing the hospitals that are a part of this and whether they are religiously affiliated, because there’s a standard of care in medicine for what happens if you have your water break before the fetus is viable and what’s supposed to happen versus what can happen.

Rovner: There was a case in Michigan a few years ago where it was a Catholic hospital. The woman, her water broke early. She was in a Catholic hospital, and they also sent her home. I’m trying to remember where she finally got care. But yeah, that has been an issue also over the years. Well, meanwhile, back here in Washington, the Supreme Court is likely to tell us shortly, I believe, whether the 1986 Emergency Medical Treatment and Active Labor Act, known as EMTALA, requires doctors to perform abortions in life-threatening situations, as the Biden administration maintains.

Alice, this case is on what’s known as the “shadow docket” of the Supreme Court, meaning it has not been fully briefed and argued. It’s only asking if the court will overturn a lower court’s ruling that the federal law trumps the state’s ban. When are we expecting to hear something?

Ollstein: It could be after justices meet on Friday. Really, it could be whenever after that. As we’ve seen in the last few years, the shadow docket can be very unpredictable, and we could just get, at very odd times, major decisions that impact the whole country or just one state. And so, yes, I mean, this issue of abortion care and emergency circumstances is playing out in court in a couple different states, and the federal government is getting involved in some of those states.

And so I think this could be a big test. Unlike a lot of lawsuits going on right now, this is not seeking to strike down the state’s abortion ban entirely. It’s just trying to expand and clarify that people who are in the middle of a medical emergency shouldn’t be subject to the ban.

Rovner: It’s similar to what they’re fighting about in Texas, actually.

Ollstein: Yeah, exactly. And this is still playing out at the 9th Circuit, but they’re trying to leapfrog that and get the Supreme Court to weigh in the meantime.

Rovner: Yeah, and we shall see. All right, well, while we’re on the subject of “This Week in Court,” let us move on to the case that was argued in public at the Supreme Court this week about whether the Sackler family can keep much of its wealth while declaring bankruptcy for its drug company, Purdue Pharma, that’s been found liable for exacerbating, if not causing much of the nation’s opioid epidemic.

The case involves basically two bad choices: Let the Sacklers manipulate the federal bankruptcy code to shield billions of dollars from future lawsuits or further delay justice for millions of people injured by the company’s behavior. And the justices themselves seem pretty divided over which way to go. Anna, what’s at stake here? This is a lot, isn’t it?

Edney: Yeah. I mean, it’s interesting how it doesn’t exactly break down on ideological lines. The justices were — I don’t want to say all over the place, because that sounds disrespectful — but they had concerns on many different levels. And one is that the victims and their lawyers negotiated the settlement because for them it was the best way they felt that they could get compensation, and they didn’t feel that they could get it without letting the Sacklers off the hook, that the Sacklers basically would not sign the settlement agreement, and they were willing to go that route.

And the government is worried about using that and letting the Sacklers off the hook in this way and using this bankruptcy deal to be able to shield a lot of their money that they took out of the company, essentially, and have in their personal wealth now. And so that’s something that a lot of companies are, not a lot, but companies are looking to hope to use the sign of bankruptcy protection when it comes to big class-action lawsuits and harm to consumers.

And so I think that what the worry is is that that then becomes the precedent, that the ones at the very top will always get off because it’s easier to negotiate the settlement that way.

Rovner: We’ll obviously have to wait until — as this goes a few months — to see the decisions in this case, but it’s going to be interesting. I think everybody, including the justices, are unhappy with the set of facts here, but that’s why it was in front of the Supreme Court. So our final entry in “This Week in Court” is a twofer. It is also “This Week in Health Misinformation.”

Texas Attorney General Ken Paxton has filed suit against Pfizer for allegedly violating Texas’ Deceptive Trade Practices Act because its covid vaccine did not, in fact, end the covid epidemic. Quoting from the attorney general’s press release, “We are pursuing justice for the people of Texas, many of whom were coerced by tyrannical vaccine mandates to take a defective product sold by lies.” It’s hard to even know where to start with this, except that, I guess, anyone can sue anyone for anything in Texas, right?

Edney: Yeah, that’s a very good point. The entire concept of it feels so weird. I mean, a vaccine doesn’t cure anything, right? That’s not the point of a vaccine. It’s not a drug. It is a vaccine that is supposed to prevent you from getting something, and not everybody took it. So that feels like the end of the story, but, clearly, the attorney general would prefer attention, I think, on this, and to continue to sow doubt in vaccines and the government and the Food and Drug Administration seems to be maybe more of the point here.

Rovner: I noticed he’s only suing for, I think, it’s $10 million, which is frankly not a ton of money to a company as big as Pfizer. So one would assume that he’s doing this more for the publicity than for the actual possibility of getting something.

Pradhan: Yeah, I think Pfizer’s CEO’s annual salary is more than the damages that are being sought in this case. So it’s really not very much money at all. I mean, more broadly speaking, I mean, Texas, Florida, I think you see especially post-public-health-emergency-covid times, the medical freedom movement has really taken root in a lot of these places.

And I think that it just seems like this is adding onto that, where doctors say they should be able to give ivermectin to covid patients and it helped them and not be at risk of losing their license. And that’s really kind of an anti-vaccine sentiment. Obviously, it’s very alive and well.

Rovner: We are post-belief-in-scientific-expertise.

Edney: Well, I was going to say, I appreciated The Texas Tribune’s story on this because they called out every time in this lawsuit that he was twisting the truth or just completely not telling the truth at all in the sense that he said that more people who took the vaccine died, and that’s clearly not the case. And so I appreciated that they were trying to call him out every time that he said something that wasn’t true, but was just completely willing to put that out in the public sphere as if it was.

Rovner: There was also a great story on Ars Technica, which is a scientific website, about how the lawsuit completely misrepresents the use of statistics, just got it completely backwards. We’ll post a link to that one too. Well, while we are talking about drug companies, let’s talk about some drugs that really may not be what companies say they are.

Anna, you have a new story up this week about the Pentagon’s effort to ensure that generic drugs are actually copies of the drugs they’re supposed to be. That effort’s running into a roadblock. Tell us a little about that.

Edney: Yeah, thanks for letting me talk about this one. It’s “The Pentagon Wants to Root Out Shoddy Drugs. The FDA Is in Its Way.” So the FDA is the roadblock to trying to figure out whether the drugs, particularly that the military and their family members are taking, work well and don’t have side effects that could be extremely harmful. So what’s going on here is that the Defense Department and others, the White House even, has grown skeptical of the FDA’s ability to police generic drugs, largely that are made overseas.

We did some analysis and we found that it was actually 2019 was the first time that generic drug-making facilities in India surpassed the number of those in the U.S. So we are making more, not just active ingredients, but finished products over in India. And the FDA just doesn’t have a good line into India. They don’t do many unannounced inspections. They usually have to tell the company they’re coming weeks in advance. And what we found is when the Defense Department started looking into this, they partnered with a lab to test some of these drugs.

They got some early results. Those results were concerning, as far as the drug might not work, and also could cause kidney failure, seizures. And even despite this, they’ve been facing the FDA around every corner trying to stop them and trying to get them not to test drugs. They say it’s a waste of money, when, in fact, Kaiser Permanente has been doing this for its 12.7 million members for several years.

And it just seems like something is going on at the FDA and that they don’t want people to have any questions about generic drugs. They really just want everyone to accept that they’re always exactly the same, and they even derail the White House effort to try to look into this more as well. But the Pentagon said, “Thank you very much, FDA, but we’re going forward with this.”

Rovner: Yeah. I mean, I could see that the FDA would be concerned about … they’re supposed to be the last word on these things. But, as you point out and as much of your reporting has pointed out over the last couple of years, the FDA has not been able to keep up with really making sure that these drugs are what they say they are.

Edney: One thing I learned that was interesting, and this is that in Europe, actually, there’s a network of 70 labs that do this kind of testing before drugs reach patients and after they reach patients. So it’s not a totally unusual thing. And for some reason, the FDA does not want that to happen.

Rovner: Well, finally on the drug beat this week, CVS announced earlier that it would overhaul its drug pricing to better reflect how much it pays for the drugs, all of which sounds great, but the fact is that how much CVS pays for the drugs doesn’t have all that much effect on how much we end up paying CVS for those same drugs, right? They’re just changing how they get the drugs from the manufacturers, not necessarily how they price it for the customers.

Pradhan: I think my main question would be, what does that mean for a patient’s out-of-pocket cost for prescriptions? I don’t know how much of this has to do with … for CVS as the pharmacy, but we have CVS Caremark, which is a major PBM, and how this affects the pricing models there. And PBMs, of course, have been under scrutiny in Congress. And there’s outside pressure too, right? The story that you highlighted, Julie, talks about Mark Cuban’s affordable-drug effort. And so, yeah, I don’t know. I mean, I think it sounds good until maybe we see some more details, right?

Rovner: I saw one story that said, “This could really help lower drug prices for consumers,” and one that said, “This could actually raise drug prices for consumers.” So I’m assuming that this is another one where we’re going to have to wait and see the details of. All right, well, that is this week’s news.

Now we will play my interview with Dan Weissmann of the “Arm and a Leg” podcast, and then we will come back with our extra credits. I am pleased to welcome back to the podcast Dan Weissmann, host of KFF Health News’s sister podcast, “An Arm and a Leg.” Dan has a cool two-part story on hospitals suing patients for overdue bills that he’s here to tell us about. Dan, welcome back.

Dan Weissmann: Julie, thanks so much for having me.

Rovner: So over the past few years, there have been a lot of stories about hospitals suing former patients, including a big investigation by KFF Health News. But you came at this from kind of a different perspective. Tell us what you were trying to find out.

Weissmann: We were trying to figure out why hospitals file lawsuits in bulk. Investigative reporters like Jay Hancock at KFF [Health News] have documented this practice, and one of the things that they note frequently is how little money hospitals get from these lawsuits. Jay Hancock compared the amount that VCU [Health] was seeking from patients and compared it to that hospital system’s annual surplus, their profit margin, and it looked tiny. And other studies document essentially the same thing. So why do they do it?

And we got a clue from a big report done by National Nurses United in Maryland, which, in addition to documenting how little money hospitals were getting compared to the million-dollar salaries they were paying executives in this case, also noted that a relatively small number of attorneys were filing most of these lawsuits. Just five attorneys filed two-thirds of the 145,000 lawsuits they documented across 10 years, and just one attorney filed more than 40,000 cases. So we were like, huh, maybe that’s a clue. Maybe we found somebody who is getting something out of this. We should find out more.

Rovner: So you keep saying “we” — you had some help working on this. Tell us about your partners.

Weissmann: Oh my God, we were so, so lucky. We work with The Baltimore Banner, which is a new daily news outlet in Baltimore, new nonprofit news outlet in Baltimore, that specializes in data reporting. Their data editor, Ryan Little, pulled untold numbers of cases, hundreds of thousands of cases, from the Maryland courts’ website and analyzed them to an inch of their life and taught us more than I could ever have imagined.

And Scripps News also came in as a partner and one of their data journalists, Rosie Cima, pulled untold numbers of records from the Wisconsin court system and worked to analyze data that we also got from a commercial firm that has a cache of data that has more detail than what we could pull off the website. It was a heroic effort by those folks.

Rovner: So what did you find? Not what you were expecting, right?

Weissmann: No. While Rosie and Ryan were especially gathering all this data and figuring out what to do with it, I was out talking to a lot of people. And what I found out is that in the main, it appears that frequently when these lawsuits happen and when hospitals file lawsuits in general, they’re not being approached by attorneys. They’re working with collection agencies. And most hospitals do work with a collection agency, and it’s essentially like, I put it like, you get a menu, oh, I’m having a hamburger, I’m going to pursue people for bills.

Like, OK, do you want onions? Do you want mustard? Do you want relish? What do you want on it? And in this case, it’s like, how hard do you want us to go after people? Do you want us to hit their credit reports — if you still can do that, because the CFPB [Consumer Financial Protection Bureau] has been making regulations about that — but do you want us to do that? How often can we call them? And do you want us to file lawsuits if we don’t get results? And so that is essentially in consultation with the hospital’s revenue department and the collection agency, and it’s a strategic decision between them.

That was what we found out through talking to people. What Rosie and Ryan turned up, and the data we had from the folks in New York backed up, is that, surprisingly, in the three states that we looked at, there’s just so much less of this activity than we had expected to find. In Maryland, Ryan sent me a series of emails, the first saying, like, “I’m not actually seeing any this year. That’s got to be wrong. They must be hiding them somewhere. I’m going to go investigate.” And a week later he was like, “I think I found them, and then we’ll go run some more numbers.”

And then a week later, after going to the courthouse and looking at everything you could find, he was like, “No, actually Maryland hospitals just do not seem to be suing anybody this year.” And we had expected there to be fewer lawsuits, but zero was a surprise to everybody. In New York, we appear to have found that two of those three law firms handling all those cases are no longer handling medical bill cases. And in Wisconsin, final numbers are still being crunched. Our second part will have all those numbers.

The Banner is coming out with their numbers this week. But Scripps News and us are still crunching numbers in Wisconsin. But what was the biggest shocker was, I can just tell you, there were so many fewer lawsuits than we had expected, and many of the most active plaintiffs had either cut the practice entirely, like filing zero lawsuits or filing hardly any. One of the things that a lot of these reports that look at across a state, like in New York and the Maryland report, note, and that we found in Wisconsin too, is that most hospitals don’t do this.

Noam Levey at KFF [Health News] found that many hospitals have policies that say, “We might file a lawsuit,” and some larger number of hospitals file some lawsuits. But in all these cases where you’re seeing tons of lawsuits filed, the phenomenon of suing people in bulk is actually not business as usual for most hospitals. That is driven by a relatively small group of players. There was a study in North Carolina by the state treasurers, obviously and Duke University, that found 95% of all the lawsuits were filed by just a few institutions.

The New York people found this. We’ve seen it in Wisconsin. So I mean, it’s another very interesting question when you’re looking at why does this happen. It’s like it’s not something that most institutions do. And again, in Wisconsin, we found that most of the players that had been the most active had basically stopped.

Rovner: Do we know why? Is it just all of the attention that we’ve seen to this issue?

Weissmann: Probably the answer is we don’t know why. Our colleagues at The Banner called every hospital in Maryland and were not told very much. We emailed all the hospitals in Wisconsin that we could that we had seen dramatically decrease, and nobody came to the phone. So we don’t really know.

But it does seem like, certainly in Maryland and New York, there were these huge campaigns that got tons of publicity and got laws changed, got laws passed. And there has been attention. The reports that Bobby Peterson put out in Wisconsin got attention locally. Sarah Kliff of The New York Times, who’s been writing about these kinds of lawsuits, has written multiple times about hospitals in Wisconsin. So it seems like a good first guess, but it’s a guess. Yeah.

Rovner: Well, one thing that I was interested that you did turn up, as you pointed out at the top, hospitals don’t get very much money from doing this. You’re basically suing people for money that they don’t have. So you did find other ways that hospitals could get reimbursed. I mean, they are losing a lot of money from people who can’t pay, even people with insurance, who can’t pay their multi-thousand-dollar deductible. So what could they be doing instead?

Weissmann: They could be doing a better job of evaluating people’s ability to pay upfront. The majority of hospitals in the United States are obligated by the Affordable Care Act to have charity care policies, financial assistance policies, in which they spell out, if you make less than a certain amount of money, it’s a multiple of the federal poverty level that they choose, we’ll forgive some or all of your bill. And, frequently, that number is as much as four times the federal poverty level. They might knock 75% off your bill, which is a huge help.

And as a guy that I met noted, using data from KFF, 58% of Americans make less than 75% of the federal poverty level. That is a lot of people. And so if you’re chasing someone for a medical bill, they might very well have been someone you could have extended financial assistance to. This guy, his name is Nick McLaughlin, he worked for 10 years for a medical bill collections agency. Someone in his family had a medical bill they were having a hard time paying, and he figured out that they qualified for charity care, but the application process, he noted, was really cumbersome, and even just figuring out how to apply was a big process. And so he thought, I know that chasing people for money they don’t have isn’t really the best business model and that we’re often chasing people for money they don’t have. What if we encourage hospitals to be more proactive about figuring out if someone should be getting charity care from them in the first place?

Because, as he said, every time you send someone a bill, you’re spending two bucks. And you’re not just sending one bill, you’re sending like three bills and a final notice. That all adds up, and you’re manning a call center. You’re spending money and you’re missing opportunities by not evaluating people. Because while you’re asking about their income, you might find out they’re eligible for Medicaid, and you can get paid by Medicaid rather than chasing them for money they don’t have.

And two, they might update their insurance information from you and you can get money from their insurance. You can extend financial assistance to somebody, as you said, who has a deductible they can’t pay, and they might actually come to you for care that you can unlock money from their insurance if they’re going to come to you because they’re not afraid of the bill.

I should absolutely say, while Nick McLaughlin is selling hospitals on the idea of adopting new software, which is a great idea, they should do that, they should be more proactive, an entity called Dollar For, a nonprofit organization out of the Pacific Northwest that’s been doing work all over the country, has been beating the drum about this and has a tool that anybody can use.

Essentially, go to their website, dollarfor.org, and type in where you were seen and an estimate of your income, and they will tell you, you’re likely to qualify for charity care at this hospital, because they have a database of every hospital’s policy. And if you need help applying, because some of these applications are burdensome, we’ll help you. So this exists, and everybody should know about it and everybody should tell everybody they know about it. I think the work they’re doing is absolutely heroic.

Rovner: Well, Dan Weissmann, thank you so much for joining us. We will post a link to Dan’s story in our show notes and on our podcast page.

Weissmann: Julie, thanks so much for having me.

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

Edney: Sure. This is from my colleague Madison Muller, “Tallying the Best Stats on US Gun Violence Is Trauma of Its Own.” And I thought she just did such an amazing job with this story, talking to Mark Bryant, who helped start an organization, Gun Violence Archive, which is essentially the only place that is trying to tally every instance of gun violence.

And because of a lot of the restrictions that the NRA has helped get into government regulations and things, some of them which are more recently loosening, but because of those in the past, this is really the only way you could try to look up these statistics. And he’s just given the last decade of his life, with no breaks, trying to do this and his health is failing. And I thought it was just a really poignant look at somebody who has no skin in the game, but just wanted the right information out there.

Rovner: Yeah, obviously this is a big deal. Alice.

Ollstein: I did an op-ed that was published in Stat by a group of fetal medicine specialists who are writing about how their work is being compromised by state abortion bans right now. They were saying these are very risky, high-stakes procedures where they perform operations in utero, latent pregnancy usually, and it’s an attempt to save the pregnancy where there is a big risk. But with all of these, there are risks that it could end the pregnancy, and now they’re afraid of being prosecuted for that.

And they describe a bunch of challenging situations that, even without these bans are challenging, things where there’s twins and something to help one could harm the other twin, and this could all affect the health and life of the parent as well. And so they’re saying that they’re really in this whole new era and have to think about the legal risks, as well as the medical and bioethical ones that they already have to deal with.

Rovner: I’ve reported about this over the years, and I can tell you that these are always really wrenching family decisions about trying to desperately save a pregnancy by doing this extraordinarily difficult and delicate kind of procedure. Rachana.

Pradhan: My extra credit is a story from our colleague Brett Kelman, who worked on this investigation with CBS News. It is about a type of artificial hip known as Profemur that literally were snapping in half in patients’ bodies. I told Brett earlier this week that I was cringing at every line that I read. So if folks want to get a really, frankly, pretty gruesome, awful story about how people around the country have received these artificial hips, and the fact that they broke inside their bodies has really caused a lot of damage.

And, frankly, I know we talked about the FDA, but also this story really sheds light on how the FDA has dropped the ball in not acting with more urgency. And had they done that, many of these injuries likely would’ve been avoided. So, I urge everyone to read it. It’s a great story.

Rovner: It is. I also flinched when I was reading a lot of it. Well, my story is from the Wisconsin State Journal by David Wahlberg, and it’s called “Dane, Milwaukee Counties Stop Making Unwed Fathers Pay for Medicaid Birth Costs.” And while I have been covering Medicaid since the 1980s, and I never knew this even existed, it seems that a handful of states, Wisconsin among them, allows counties to go after the fathers of babies born on Medicaid, which is about half of all births — Medicaid’s about half of all births.

Not surprisingly, making moms choose between disclosing the father to whom she is not married to the state or losing Medicaid for her infant is not a great choice. And there’s lots of research to suggest that it can lead to bad birth outcomes, particularly in African American and Native American communities. I have long known that states can come after the estates of seniors who died after receiving Medicaid-paid nursing home or home care, but this one, at the other end of life, was a new one to me.

Now, I want to know how many other states are still doing this. And when I find out, I’ll report back.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcast. We’d appreciate it if you left us a review. That helps other people find us too. Thanks, as always, to our tireless tech guru, Francis Ying, who’s back from vacation. Also, 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 Threads. Anna?

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

Rovner: Rachana.

Pradhan: I’m @rachanadpradhan on X.

Rovner: Alice.

Ollstein: I’m @AliceOllstein on X, and @AliceMiranda on Bluesky.

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

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At no point along his three-year path to earning a degree in physical therapy has Matthew Lee worried about getting a job.

Being able to make a living off that degree? That’s a different question — and the answer is affecting the supply of physical therapists across the nation: The cost of getting trained is out of proportion to the pay.

“There’s definitely a shortage of PTs. The jobs are there,” said Lee, a student at California State University-Sacramento who is on track to receive his degree in May. “But you may be starting out at $80,000 while carrying up to $200,000 in student debt. It’s a lot to consider.”

As many patients seeking an appointment can attest, the nationwide shortage of PTs is real. According to survey data collected by the American Physical Therapy Association, the job vacancy rate for therapists in outpatient settings last year was 17%.

Wait times are generally long across the nation, as patients tell of waiting weeks or even months for appointments while dealing with ongoing pain or post-surgical rehab. But the crunch is particularly acute in rural areas and places with a high cost of living, like California, which has a lower ratio of therapists to residents — just 57 per 100,000, compared with the national ratio of 72 per 100,000, according to the association.

The reasons are multifold. The industry hasn’t recovered from the mass defection of physical therapists who fled as practices closed during the pandemic. In 2021 alone, more than 22,000 PTs — almost a tenth of the workforce — left their jobs, according to a report by the health data analytics firm Definitive Healthcare.

And just as baby boomers age into a period of heavy use of physical therapy, and covid-delayed procedures like knee and hip replacements are finally scheduled, the economics of physical therapy are shifting. Medicare, whose members make up a significant percentage of many PT practices’ clients, has cut reimbursement rates for four years straight, and the encroachment of private equity firms — with their bottom-line orientation — means many practices aren’t staffing adequately.

According to APTA, 10 companies, including publicly held and private equity-backed firms, now control 20% of the physical therapy market. “What used to be small practices are often being bought up by larger corporate entities, and those corporate entities push productivity and become less satisfying places to work,” said James Gordon, chair of the Division of Biokinesiology and Physical Therapy at the University of Southern California.

There’s a shortage of physical therapists in all settings, including hospitals, clinics, and nursing homes, and it’s likely to continue for the foreseeable future, said Justin Moore, chief executive of the physical therapy association. “Not only do we have to catch up on those shortages, but there are great indicators of increasing demand for physical therapy,” he said.

The association is trying to reduce turnover among therapists, and is lobbying Congress to stop cutting Medicare reimbursement rates. The Centers for Medicare & Medicaid Services plans a 3.4% reduction for 2024 to a key metric that governs pay for physical therapy and other health care services. According to the association, that would bring the cuts to a total of 9% over four years.

Several universities, meanwhile, have ramped up their programs — some by offering virtual classes, a new approach for such a hands-on field — to boost the number of graduates in the coming years.

“But programs can’t just grow overnight,” said Sharon Gorman, interim chair of the physical therapy program at Oakland-based Samuel Merritt University, which focuses on training health care professionals. “Our doctoral accreditation process is very thorough. I have to prove I have the space, the equipment, the clinical sites, the faculty to show that I’m not just trying to take in more tuition dollars.”

All of this also comes at a time when the cost of obtaining a physical therapy doctorate, which typically takes three years of graduate work and is required to practice, is skyrocketing. Student debt has become a major issue, and salaries often aren’t enough to keep therapists in the field.

According to the APTA’s most recent published data, median annual wages range from $88,000 to $101,500. The association said wages either met or fell behind the rate of inflation between 2016 and 2021 in most regions.

A project underway at the University of Iowa aims to give PT students more transparency about tuition and other costs across programs. According to an association report from 2020, at least 80% of recent physical therapy graduates carried educational debt averaging roughly $142,000.

Gordon said USC, in Los Angeles’ urban core, has three PT clinics and 66 therapists on campus, several of whom graduated from the school’s program. “But even with that, it’s a challenge,” he said. “It’s not just hard to find people, but people don’t stay, and the most obvious reason is that they don’t get paid enough relative to the cost of living in this area.”

Fewer therapists plus growing demand equals long waits. When Susan Jones, a Davis, California, resident, experienced pain in her back and neck after slipping on a wet floor in early 2020, she went to her doctor and was referred for physical therapy. About two months later, she said, she finally got an appointment at an outpatient clinic.

“It was almost like the referral got lost. I was going back and forth, asking, ‘What’s going on?’” said Jones, 57. Once scheduled, her first appointment felt rushed, she said, with the therapist saying he could not identify an issue despite her ongoing pain. After one more session, Jones paid out-of-pocket to see a chiropractor. She said she’d be hesitant to try for a physical therapy referral in the future, in part because of the wait.

Universities and PT programs graduate about 12,000 therapists a year, Moore said, and representatives of several schools told KFF Health News they’re studying whether and how to expand. In 2018, USC added a hybrid model in which students learn mostly online, then travel to campus twice a semester for about a week at a time for hands-on instruction and practice.

That bumped USC’s capacity from 100 students a year to 150, and Gordon said many of the hybrid students’ professional skills are indistinguishable from those of students on campus full time.

Natalia Barajas received her PT doctorate from USC last year and was recently hired at a clinic in nearby Norwalk, with a salary of $95,000, a signing bonus, and the opportunity to earn more in incentives.

She’s also managing a lot of debt. Three years of tuition for the USC physical therapy program comes to more than $211,000, and Barajas said she owes $170,000 in student loans.

“If it were about money alone, I probably would have shifted to something else a while ago,” Barajas said. “I’m OK with my salary. I chose to do this. But it might not be the perfect situation for everybody.”

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

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

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At 19, Velasquez Lopez knows a lot about ammunition because many of his friends own guns, he said. They carry to defend themselves in East Oakland, where metal bars protect shop windows and churches stand behind tall, chain-link fences.

Some people even hide AR-15-style assault weapons down their pants legs, he said.

“It doesn’t feel safe. Wherever you’re at, you’re always anxious,” said Velasquez Lopez, who dreams of leaving the city where he was born. “You’re always wondering what’s going to happen.”

Last year, two gunmen in ski masks stormed his high school, killing a school district carpenter and injuring five other adults, including two students.

Oakland won acclaim just a few years ago as a national model for gun violence prevention, in part by bringing police and community groups together to target the small number of people suspected of driving the gun violence.

Then, in 2020, the covid-19 pandemic shut down schools, businesses, and critical social services nationwide, leaving many low-income people isolated and desperate — facing the loss of their jobs, homes, or both. The same year, police murdered George Floyd, a Black man in Minneapolis, which released pent-up fury over racial discrimination by law enforcement, education, and other institutions — sparking nationwide protests and calls to cut police funding.

In the midst of this racial reckoning and facing the threats of an unknown and deadly virus, Americans bought even more guns, forcing some cities, such as Raleigh, North Carolina; Chicago; New York City; and Oakland, to confront a new wave of violent crime.

“There was emotional damage. There was physical damage,” said James Jackson, CEO of Alameda Health System, whose Wilma Chan Highland Hospital Campus, a regional trauma center in Oakland, treated 502 gunshot victims last year, compared with 283 in 2019. “And I think some of this violence that we’re seeing is a manifestation of the damage that people experienced.”

Jackson is among a growing chorus of health experts who describe gun violence as a public health crisis that disproportionately affects Black and Hispanic residents in poor neighborhoods, the very people who disproportionately struggle with Type 2 diabetes and other preventable health conditions. Covid further eviscerated these communities, Jackson added.

While the pandemic has retreated, gun violence has not. Oaklanders, many of whom take pride in the ethnic diversity of their city, are overwhelmingly upset about the rise in violent crime — the shootings, thefts, and other street crimes. At town halls, City Council meetings, and protests, a broad cross-section of residents say they no longer feel safe.

Programs that worked a few years ago don’t seem to be making a dent now. City leaders are spending millions to hire more police officers and fund dozens of community initiatives, such as placing violence prevention teams at high schools to steer kids away from guns and crime.

Yet gun ownership in America is at a historic high, even in California, which gun control advocates say has the strictest gun laws in the country. More than 1 million Californians bought a gun during the first year of the pandemic, according to the latest data from the state attorney general.

As Alameda County District Attorney Pamela Price told an audience at a September town hall in East Oakland: “We are in a unique, crazy time where everybody in this community has a gun.”

The Streets of Oakland

Oakland’s flatlands southeast of downtown are the backdrop of most of the city’s shootings and murders.

The area stands in stark contrast to the extreme wealth of the millionaire homes that dot the Oakland Hills and the immaculate, flower-lined streets of downtown. The city’s revived waterfront, named after famed author and local hero Jack London, draws tourists to trendy restaurants.

On a Saturday night in August, Shawn Upshaw drove through the flatlands along International Boulevard, past the prostitutes who gather on nearly every corner for at least a mile, and into “hot spots,” where someone is shot nearly every weekend, he said.

“When I grew up, women and kids would get a pass. They wouldn’t get caught in the crossfire,” said Upshaw, 52, who was born and raised in Oakland. “But now women and kids get it, too.”

Upshaw works as a violence interrupter for the city’s Department of Violence Prevention, which coordinates with the police department and community organizations in a program called Ceasefire.

When there’s a shooting, the police department alerts Upshaw on his phone and he heads to the scene. He doesn’t wear a police uniform. He’s a civilian in street clothes: jeans and a black zip-up jacket. It makes him more approachable, he said, and he’s not there to place blame, but rather to offer help and services to survivors and bystanders.

The goal, he said, is to stop a retaliatory shooting by a rival gang or grieving family member.

Police also use crime data to approach people with gang affiliations or long criminal records who are likely to use a gun in a crime — or be shot. Community groups follow up with offers of job training, education, meals, and more.

“We tell them they’re on our radar and try to get them to recognize there are alternatives to street violence,” said Oakland Police Department Capt. Trevelyon Jones, head of Ceasefire. “We give them a safe way of backing out of a conflict while maintaining their street honor.”

Every Thursday at police headquarters, officers convene a “shooting review.” They team up with representatives from community groups to make house calls to victims and their relatives.

After the program launched in 2012, Oakland’s homicides plummeted and were down 39% in 2019, according to a report commissioned by the Oakland Police Department.

Then covid hit.

“You had primary care that became an issue. You had housing that became an issue. You had employment that became an issue,” said Maury Nation, an associate professor at Vanderbilt University. “It created a surplus of the people who fit that highest risk group, and that overwhelms something like Ceasefire.”

With ever-rising housing prices in Oakland and across California, homeless encampments have multiplied on sidewalks and under freeway bypasses. The city is also bracing for the loss of jobs and civic pride if the Oakland Athletics baseball team relocates after April 2024, following departures by the NBA’s Golden State Warriors in 2019 and the NFL’s Raiders in 2020.

“Housing, food insecurity, not having jobs that pay wages for folks, all can lead to violence and mental health issues,” said Sabrina Valadez-Rios, who works at the Freedom Community Clinic in Oakland and teaches a high school class for students who have experienced gun violence. Her father was fatally shot outside their Oakland home when she was a child. “We need to teach kids how to deal with trauma. Violence is not going to stop in Oakland.”

Shared with permission from The Trace.

Homicides in Oakland climbed to 123 people in 2021, police reports show, dipping slightly to 120 last year. Police have tallied 108 homicides as of Nov. 12 this year. Neither the police department nor the city provided statistics on how many of those killings involved firearms, despite repeated requests from KFF Health News.

Experts also blame the rise in killings in Oakland and other American cities on the prevalence of gun ownership in the U.S., which has more guns than people. For all the pandemic disruption worldwide, homicide rates didn’t go up in countries with strict gun laws, said Thomas Abt, director of the Center for the Study and Practice of Violence Reduction at the University of Maryland.

“We saw gun violence, homicides, shootings spike up all around the country. And interestingly, it did not happen internationally,” Abt said. “The pandemic did not lead to more violence in other nations.”

Unrest in Oakland

Oakland residents are angry. One by one, business owners, community organizers, church leaders, and teenagers have stood at town halls and City Council meetings this year with an alarming message: They no longer feel safe anywhere in their city — at any time.

“It’s not just a small number of people in the evening or nighttime. This is all hours, day and night,” said Noha Aboelata, founder of the Roots Community Health Center in Oakland. “Someone’s over here pushing a stroller and someone’s getting shot right next to them.”

One morning in early April, automatic gunfire erupted outside a Roots clinic. Patients and staff members dropped to the ground and took cover. After the shooting stopped, medical assistants and a doctor gave first aid to a man in his 20s who had been shot six times.

Everyone is blaming someone or something else for the bloodshed.

Business owners have had enough. In September, Target announced it would close nine stores in four states, including in Oakland because of organized retail theft; the famed Vietnamese restaurant Le Cheval shut its doors after 38 years, partly blaming car break-ins and other criminal activity for depressing its business; and more than 200 business owners staged an hours-long strike to protest the rise in crime.

The leadership of the local NAACP, the nation’s oldest civil rights organization, made headlines this summer when it said Oakland was seeing a “heyday” for criminals, and pointed to the area’s “failed leadership” and “movement to defund the police.”

“It feels like there’s a dark cloud over Oakland,” said Cynthia Adams, head of the local chapter, which has called on the city to hire 250 more police officers.

Price, a progressive elected last year, already faces a recall effort, in part because she rejects blanket enhanced sentences for gangs and weapons charges, and has declined to charge youths as adults.

The new mayor, Sheng Thao, was criticized for firing the police chief for misconduct and breaking a campaign promise to double funding at the city’s Department of Violence Prevention. In her first State of the City address last month, Thao described the surge in crime as “totally and completely unacceptable,” and acknowledged that Oaklanders are hurting and scared. She said the city has expanded police foot patrols and funded six new police academies, as well as boosted funding for violence prevention and affordable housing.

“Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire,” Thao said.

Many in the community, including Valadez-Rios, advocate for broader investment in Oakland’s poorest neighborhoods over more law enforcement.

City councils, states, and the federal government are putting their faith in violence prevention programs, in some cases bankrolling them from nontraditional sources, such as the state-federal Medicaid health insurance program for low-income people.

Last month, California’s Democratic Gov. Gavin Newsom approved an 11% state tax on guns and ammunition, and $75 million of the revenue annually is expected to go to violence prevention programs.

Although these programs are growing in popularity, it is unclear how successful they are. In some cases, proven programs that involve law enforcement, such as Ceasefire, were cut back or shelved after George Floyd was murdered, said Abt, the Maryland researcher.

“The intense opposition to law enforcement means that the city was unwilling to use a portion of the tools that have been proven,” Abt said. “It’s good to work on preventing youth violence, but the vast majority of serious violence is perpetrated by adults.”

Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire.

Oakland Mayor Sheng Thao

A Focus on Schools

Kentrell Killens, interim chief at the Oakland Department of Violence Prevention, acknowledges that young adults drive Oakland’s gun violence, not high school kids. But, he said, shootings on the streets affect children. Of the 171 homicides in 2019 and 2020, 4% of victims were 17 or under, while 59% were ages 18 to 34, according to the Oakland Police Department.

The number of children injured in nonfatal shootings is also worrisome, he said. Roughly 6% of victims and 14% of suspects in nonfatal shootings were 17 or younger in 2019 and 2020.

“We’ve seen the impact of violence on young people and how they have to make decisions around what roles they want to play,” said Killens, who spent a decade as a case manager working with schoolkids.

By being in the schools, “we can deal with the conflicts” that could spill into the community, he added.

At Fremont High School, Principal Nidya Baez has welcomed a three-person team to her campus to confront gun violence. One caseworker focuses on gun violence and another on sexual assaults and healthy relationships. The third is a social worker who connects students and their families to services.

They are part of a $2 million city pilot program created after the Oakland School Board eliminated school-based police in 2020 — about one month after George Floyd was killed and after a nine-year push by community activists to kick police out of schools.

“We’ve been at a lot of funerals, unfortunately, for gang-related stuff or targeting of kids, wrong-place-wrong-time kind of thing,” said Baez, whose father was shot and injured on his ice cream truck when she was a child.

When Francisco “Cisco” Cisneros, a violence interrupter from the nonprofit group Communities United for Restorative Youth Justice, arrived at Fremont in January, students were wary, he said. Many still are. Students are hard-wired not to share information — not to be a “snitch” — or open up about themselves or their home life, especially to an adult, Cisneros said. And they don’t want to talk to fellow students from another network, group, or gang.

“If we catch them at an early age, right now, we can change that mindset,” said Cisneros, who was born and raised in Oakland.

Cisneros pulls from his past to build a rapport with students. This summer, for example, when he overheard a student chatting on the phone to an uncle in jail, Cisneros asked about him. It turns out Cisneros and the boy’s uncle had grown up in the same neighborhood.

That was enough to begin a relationship between Cisneros and the student, “J,” who declined to be identified by his full name for fear of retribution. The 16-year-old credits Cisneros, whom he describes as “like a dad,” with keeping him engaged in school and employed with summer jobs — away from trouble. Still, he regularly worries about making a wrong move.

“You could do one thing and you could end up in a situation where your life is at risk,” J said in Cisneros’ office. “You go from being in school one day to being in a very bad, sticky situation.”

The program is underway in seven high schools, and Cisneros believes he has helped prevent a handful of conflicts from escalating into gun violence.

A Better Life

After his school counselor was shot at Rudsdale High School in September 2022, Velasquez Lopez heard that the man and other victims were treated at nearby Highland Hospital.

“Seeing him get hurt, he obviously needed medical attention,” Velasquez Lopez said. “That made it obvious I could help my community if I were to be a nurse to help people that live around my area.”

When a recruiter from the Alameda Health System came to campus to promote a six-week internship at Highland Hospital, Velasquez Lopez applied. It was, he said, a dramatic step for a student who had never cared about school or sought vocational training.

Over the summer, he volunteered in the emergency room, learned how to take a patient’s vitals, watched blood transfusions, and translated for Spanish-speaking patients.

Velasquez Lopez, who graduated this year, is now looking for ways to get a nursing degree. The cost of college is out of reach at the moment, but he knows he doesn’t want to stay in a city where you can easily buy a gun for $1,000 — or half that, if it’s been used in a crime.

Velasquez Lopez said he has bigger goals for himself.

Young people in East Oakland “always feel like we’re trapped in that community, and we can’t get out,” he said. “But I feel like we still have a chance to change our lives.”

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

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

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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.

Supporters of abortion rights again scored big at the polls in several states’ off-year elections Nov. 7, including in some Republican-dominated states like Ohio and Kentucky. The biggest prize came in Ohio, where voters approved a ballot measure writing the right to an abortion into the state constitution, despite strong opposition from the governor and other top elected state officials.

Meanwhile, the Senate approved the nomination of Monica Bertagnolli to become the new director of the National Institutes of Health by a bipartisan 62-36 vote. Bertagnolli — previously director of the National Cancer Institute, a large NIH component — had seen her nomination held up for weeks by Sen. Bernie Sanders (I-Vt.) over a mostly unrelated fight with the Biden administration about prescription drug prices.

This week’s panelists are Julie Rovner of KFF Health News, Tami Luhby of CNN, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll.

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Tami Luhby
CNN

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Alice Miranda Ollstein
Politico

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Read Alice's stories

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Among the takeaways from this week’s episode:

• Election night 2023 was a very good night for abortion rights supporters generally and, specifically, in Ohio, Kentucky, Virginia, Pennsylvania, and New Jersey. Republican governors and state leaders invested significant political capital to defeat abortion rights ballot questions and candidates, and lost. Some anti-abortion leaders’ embrace of a 15-week abortion ban as a potential compromise didn’t seem to help their cause.
• Abortion rights supporters’ winning streak raises a broader point about ballot initiatives. State legislatures in some red-leaning states have not only enacted abortion restrictions but also fought off Democratic-backed issues like Medicaid expansion only to have the state’s voters reverse them through ballot questions. As a result, conservative leaders are pushing states to make it harder to get referendums on state ballots.
• On Capitol Hill, lawmakers are once again facing a potential government shutdown Nov. 17, with the expiration of the last “continuing resolution” to keep government spending going. But House Republicans are not making much progress on passing individual spending bills, as several measures have been pulled from the House floor because they lacked the votes to pass.
• The Federal Trade Commission this week announced it is challenging more than 100 patents on brand-name medicines. Although mind-numbingly complex, the action, which could open the door to more generic options for some commonly used medicines such as asthma inhalers, could lead to lowering drug costs.
• “This Week in Medical Misinformation” highlights a study from the Ohio State University that found much of the information available to gynecologic cancer patients on TikTok is inaccurate or of little value.

Also this week, Rovner interviews KFF Health News’s Julie Appleby, who reported and wrote the latest “Bill of the Month” feature, about a woman who got billed for what should have been a no-cost physical exam. If you have an outrageous or baffling medical bill you’d like to share with us, you can do that here.

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

Julie Rovner: ProPublica’s “Find Out Why Your Health Insurer Denied Your Claim.”

Alice Miranda Ollstein: Politico’s “Congenital Syphilis Jumped Tenfold Over the Last Decade,” by Alice Miranda Ollstein.

Sandhya Raman: The Texas Tribune’s “Sex Trafficking, Drugs and Assault: Texas Foster Kids and Caseworkers Face Chaos in Rental Houses and Hotels,” by Karen Brooks Harper.

Tami Luhby: ProPublica’s “Big Insurance Met Its Match When It Turned Down a Top Trial Lawyer’s Request for Cancer Treatment,” by T. Christian Miller.

Also mentioned in this week’s episode:

The Journal of Gynecologic Oncology’s “‘More Than a Song and Dance’: Exploration of Patient Perspectives and Educational Quality of Gynecologic Cancer Content on TikTok,” by Molly Morton et al.

Click to open the transcript

Transcript: A Very Good Night for Abortion Rights Backers

[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, Nov. 9, at 10 a.m. As always, news happens fast, and things might’ve 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: Tami Luhby of CNN.

Tami Luhby: Hello.

Rovner: And Sandhya Raman of CQ Roll Call.

Sandhya Raman: Hello, everyone.

Rovner: Later in this episode, we’ll have my interview with my colleague Julie Appleby, who wrote the latest KFF Health News-NPR “Bill of the Month.” This month’s patient had a very small bill, but it violated an important principle. But first, this week’s news, and there is more than enough.

Election night 2023 has come and gone, and it was a very good night for abortion rights supporters in Ohio, Kentucky, Virginia, Pennsylvania, and New Jersey. Alice, catch us up here.

Ollstein: Yeah, so this was a really striking example that I think undermined some of the talking points from the anti-abortion side after the 2022 midterms, where they also did worse than they expected. The narrative after that was that they lose when Republican candidates shy away from the abortion issue and don’t forcefully campaign on it. And the results this week sort of undermined that because, in Ohio, the Republican state officials went all in. I was at rallies where they were speaking, they cut ads saying, “Vote no on this abortion rights amendment.” They really put political capital into it.

An even stronger example is in Virginia, where Gov. Glenn Youngkin went all in on promoting his 15-week ban, wanting to flip the state legislature in order to advance that. He put a lot of his own money into this, et cetera. And it just …

Rovner: And the state legislature did flip, just not his way.

Ollstein: Exactly. It flipped the other way. So it really flopped in both places. And so now you have another round of finger-pointing on the right and disagreements over why they lost and what they need to do better. And so you have some people staying on that same narrative from last year saying, “Oh, they need to campaign even harder on restricting abortion.” And then you have other people saying, “Look, this is clearly a loser for us. We need to talk about other topics.”

But what was really striking, you mentioned New Jersey, and that’s sort of a counter-example because there, the Republican candidates tried to sidestep the abortion issue and say, “Look, this is settled. Abortion is legal in our state. This is not something we’re going to touch.” And they still lost. So it’s like, they lose on abortion when they campaign hard on it, they lose on abortion when they don’t campaign hard on it. And you have people arguing over what sort of magic words to use to connect with voters, but it really seems that it’s not really about the words; it’s about the policy itself.

Rovner: I want to dig a little harder into the whole 15-week-ban thing, and in Ohio it was just a straight up or down, are we going to enshrine abortion rights in the state constitution? And voters said yes, which did surprise a lot of people in a red state, although it’s, what, the fifth red state to do this?

But in Virginia, it was a little more subtle. The governor was trying to push a 15-week and they were calling it a limit, not a ban. And that’s apparently been the talking point for national Republicans, too, on federal, that this could be a compromise to have only a 15-week limit. Not working so well, right?

Ollstein: That’s right. I mean, that goes to what I was saying about you can sort of rebrand all you want. There’s been talk about rebranding “ban” to “limit.” There’s been talking about rebranding the term “pro-life,” but, ultimately, because of the events of the last several years, people associate Republicans with wanting to ban abortion. And that’s true whether it’s a total ban or a 15-week ban. It’s true whether you call it a ban or a limit or a restriction or whatever. And, like I said, it’s true when Republicans talk about it and when they don’t talk about it.

Most people, the country is still quite divided on this, but most people, a majority, enough to sway these elections, are saying that they would rather not have these kinds of imposed restrictions. And that’s really been galvanized by the overturning of Roe [v. Wade]. A lot of people were bringing up what Justice [Samuel] Alito wrote in his opinion overturning Roe saying, “Women are not without political power.” And people are saying, “Hey, look, that’s quite true. Thank you, Justice Alito.”

Rovner: So the other big political event obviously this week was the third Republican presidential candidate debate, this time with only five candidates on the stage, none of them named Trump.

As popular as abortion is turning out to be as a voting issue, President [Joe] Biden is not popular. In fact, I’ve seen many, many of these charts that showed that support for abortion rights is running 10 or 15 points better than President Biden. So these Republicans, who are hoping that something happens to Donald Trump, did finally talk about abortion, and most of them still seem to be in the “I’m proudly pro-life” stage. I mean, is there any way to walk this tightrope for them?

Ollstein: I think what was fascinating about the debate was you’re not really seeing a shift in reaction to this electoral shellacking that they got. The candidates who were for national bans and restrictions are still for national bans and restrictions. The candidates who want the states to decide say, “I want the states to decide.”

And it’s interesting that Nikki Haley is getting a lot of praise for her position, which she came out and said, “Yes, I’ll sign whatever Congress is able to pass that restricts abortion, but we should be upfront with voters and say that it is highly unlikely that anything will be able to pass the Senate.” It’s interesting that that seems to be appealing to people because …

Rovner: It’s true.

Ollstein: It is true, but it pisses off multiple groups. Democrats are zeroing in and hammering her on saying, “I will sign whatever ban Congress is able to pass” as evidence that she is still a threat to abortion access. Meanwhile, folks on the right, conservatives, anti-abortion people, they want her to champion a ban. They don’t want her to sort of downplay its likelihood. They want her to say, “Look, this might be very hard to get done, but I will be your champion for it.” And so she’s sort of not appealing to the left or the right with that stance, but it seems like there are some she is appealing to.

Rovner: Yeah. If anybody has ever succeeded in straddling the middle, she’s certainly making the effort.

I want to go back to the states for a minute. I think it was in your story that I read that one of the anti-abortion groups was talking about “the tyranny of the majority,” which took me a minute to think about, trying to get some of these states that could still put abortion constitutional amendments on their ballots, trying to get that stopped. Is that basically the next battleground we’re going to see?

Ollstein: Oh, yes. And it’s already started, but what really struck me is how open they’re being about it. So over the past year, a lot of states have quietly moved with legislation and through other means to try to make it harder or impossible to put an up-or-down question about abortion before voters, raising the threshold, raising the signature limit, mandating that people get signatures from this many counties and this and that and the other thing, making it more difficult. Mississippi is trying to make a carve-out so you can do a ballot measure on anything but abortion. We’ll see where that goes.

And so this has been going on, but the statements after Tuesday’s election from anti-abortion groups openly saying, “This is the tyranny of the majority and the human rights of babies should not be subject to a popular vote,” just completely going down this anti-Democratic road and being explicit about it. So I think it’s definitely something to keep an eye on.

Luhby: And this started with expanding Medicaid also because there’ve been multiple states now that have expanded Medicaid through ballot measures, multiple red states, and several states, including states that eventually passed that, have been trying to limit the ability of voters to pass it.

Rovner: Yes, we’ve got all these sort of Republican-dominated legislatures, but when the voters actually go to these single topics, they don’t necessarily agree with the legislators that they have elected.

Raman: Last year, one of the ones that abortion rights supporters had really championed was Michigan as the first citizen-led constitutional amendment to codify abortion rights. And then this week, we had a lawsuit brought against to invalidate that passing last year, and it’s unclear how that’ll go and play out in the courts, but it really seems like they’ve been slowly ramping up the strategies to see what sticks to be able to claw back some of this stuff.

Rovner: They, the anti-abortion force.

Raman: Yes, yes. And I was also going to say that when we’re talking about Mississippi, that is probably one of the one places where I think abortion opponents really had their win in that we had Lynn Fitch, their attorney general, who was the one that litigated the Dobbs decision that is making this such a big topic now, who pretty handily won reelection. And her opponent was pretty vocally an abortion rights supporter, Greta Kemp Martin. So that is one …

Rovner: The Republican governor also won in Mississippi.

Raman: Yes, yeah.

Rovner: It kind of prevented it from being a clean sweep for Democrats.

All right, well, I want to go back to the debate for a minute because they also talked mostly about foreign policy, but they did talk about entitlement reform, which had not come up, I don’t think, before. Talk about trying to straddle the middle. Here, Donald Trump has come out and vowed not to cut Social Security and Medicare, and yet we know that both programs need to have some kind of change or else they’re going to run out of money.

So how are these candidates trying to separate themselves on this thorny problem, Tami? They all seemed to say as much as they could without really saying anything.

Luhby: Exactly. I’m not sure there’s a lot of separation there, other than just saying, “We’ll look at it and we’ll see it.” But I mean, to some extent they’re right. The moderators were really trying to press them on what’s the age? What are you going to raise the age to? It’s now, the full retirement age is being ramped up to 67. The early retirement age has stayed at 62, and the moderators were like … they wanted a number.

And the candidates were sort of right in saying that they can’t just give a number because there are multiple things that can be done. I mean, a little bit more than I think what Nikki Haley said, or one of them had said it was three things that can be done. There’s more levers than that, but the age will ultimately depend on what they do with the formula, what they do with COLA, what they do with taxes. So there’s multiple things that can be done.

But what is definitely true is you can’t say that discussions are off the table because, according to the latest Trustees Report, Social Security will not be able to pay full benefits after 2034. At that time, it’ll only be able to pay about 80%. Medicare Part A can only pay full-schedule benefits till 2031. After that, it’ll only be able to cover 89%. And the new [House] speaker, Mike Johnson, has called for a debt commission and he says he wants to address Medicare and Social Security’s insolvency as part of the debt commission, which has really scared a lot of Social Security and Medicare advocates because of his Republican Study Committee background.

Rovner: Of actually wanting to cut Social Security and Medicare.

Luhby: Right. And do a lot of the things, although not raise taxes, but do a lot of things that the advocates don’t like. But yeah, there wasn’t really a lot to take away from the debate on Social Security and Medicare, other than them saying they wanted to do something, which they need to do.

Rovner: I was amused, though, that Nikki Haley said she wanted to expand Medicare Advantage without pointing out that Medicare … as if that was a way to save money because, as we’ve talked about many, many, many times, Medicare Advantage actually costs more than traditional Medicare at the moment. That’s one of the things that’s hastening the demise of Medicare’s trust fund in other places.

While we are on the subject of Washington and spending, we have yet another funding deadline coming up, this one Nov. 17, which is a week from Friday. We’ll obviously talk more about this next week, but Sandhya, how is it looking to keep the lights on?

Raman: I think we could just put a big question mark and that would be evergreen, but we’re still not close to a consensus, either short-term or long-term. So ideally, in the next several days, we’re going to get some sort of short-term selection, solution, and that it would get the votes. And those are big maybes.

Speaker Mike Johnson has said that he would come up with kind of a stopgap plan by the weekend, but this is all allegedly, and if that is something that would also be appeasable to the senators. And so a lot of that is still a question mark, but the House is still going ahead on trying to get HHS funding. So they recently released a revised version of their Labor, HHS, and Education bill. It’s still all the same topline spending, but it has additional …

Rovner: Which is lower than was agreed to. Right?

Raman: Yes, yeah.

Rovner: I mean, this bill’s having trouble … because of the magnitude of the cuts that it would make.

Raman: Yeah. They didn’t do any additional cuts to that, but they did add several more social policy riders. So the revised version would prevent funding from going to a hospital that requires abortion training or funding from athletic programs in schools that allow trans children to participate, which is something the House has passed legislation on earlier this year, calls for barring … calling for a public health emergency related to guns, a lot of just social issues that they’ve been messaging on.

So if this were to pass, this is also going to make it even more difficult to come to an agreement with the Senate. So the next thing to watch is that Monday, the House Rules Committee is going to meet and see the path to get it to the floor. And then even there, if it gets past the Rules Committee, it’s a will-or-will-not pass there. Because if you look at some of the other spending bills that have been going through, a lot of them have been getting pulled or not getting votes or getting pulled and repulled and all sorts of things.

Rovner: Pulled from the House floor?

Raman: Yes.

Rovner: Pulled like … they put them on the House floor and they don’t have the votes and they say, “Oops,” so they pull them back.

Raman: Yeah. So it’s all very tenuous. And I think one other interesting thing is that we didn’t have a full committee markup of this bill, which is something that the House has traditionally done and the Senate has not done in a few years. But the Senate did have their full markup. They did have a bipartisan consensus on it. And so we’ve kind of flipped roles, at least for now, in terms of how the regular order of Congress is going.

Rovner: Yeah, that’s right. Again, because the cuts were so big that the HHS bill couldn’t get through the Appropriations Committee.

Raman: Yeah. A lot of this is to be determined in the next few days.

Rovner: And this whole “laddered CR” that the speaker was talking about that nobody seems to quite understand except it would create different deadlines for different programs, that doesn’t seem to be on the table anymore or is it?

Raman: It also further complicates something that when they all have the same deadline, we’re still already struggling to get that done. So changing the dates is going to make it even more complicated to get to that point, but so much has really been in flux that I don’t think that that’s really on the table right now.

Rovner: Maybe he was hoping that having a partial shutdown would not be as disruptive or look as bad as having a full shutdown. I mean, I kept trying to figure out why he would try to do this because it just seemed, as you say, way more complicated.

Raman: If you look at the letter that he sent to other members of the House before he was elected as speaker, he did have a plan of outlining when he intends to get various bills done. And if you look at Labor, HHS, and Education, that one was one of the later ones kind of pegged to getting a deal for fiscal 2024 in April or so as the deadline, versus we’re still in November and the deadline was technically the end of September. There’s so many loose-hanging threads that hopefully they will come together with some sort of short-term solution over the next few days.

Rovner: They will, obviously, we shall see. Well, the House, as we say, is not getting a lot done, but the Senate is sort of.

The National Institutes of Health has a new director, former Cancer Institute director Monica Bertagnolli, whose nomination was approved on a bipartisan vote of 62 to 36 after being held up for months by Democrats who were upset that she wouldn’t, in the words of Senate Health, Education, Labor, and Pensions Committee Chairman Bernie Sanders, “take on Big Pharma enough.”

So when did controlling drug prices become part of the NIH portfolio? That’s not something that I was aware necessarily went together.

Ollstein: I think it was just that her nomination was the one that was up, so you got to sort of dance with the partner you can find. Obviously, other agencies and other official positions would have made more sense and had more direct power over drug prices. But this was the open seat, and so this was the leverage they thought they could use, and whether what they got out of it made it worth it, that’s up for debate. But yeah, it is very unusual to see somebody going against a president with whom they are largely aligned.

So this was eventually cleared, but Bernie Sanders wasn’t the only one. There were some other Democratic senators who were asking for ethics pledges and other things around this nomination, but it did ultimately go through.

Rovner: Yeah, there was a statement from John Fetterman. He said, “I’m not going to vote for her because she’s not going to be tough enough on the drug industry.” It’s like, I’m pretty sure that’s not her job as the head of NIH.

I mean, before people start to complain, I know that there are some levers that NIH can pull in deciding how to do some of their clinical trials. They can have sort of a secondary effect on drug prices, but it’s certainly not …

Ollstein: Not as direct.

Rovner: … their main role in the federal bureaucracy.

Well, meanwhile, there was some actual real stuff on drug prices this week. The Federal Trade Commission, which the last time I checked was in charge of unfair pricing practices, is officially challenging 100 drug industry patent listings charging that the listings are inaccurate. And because those listings help prevent cheaper generics from entering the market, that’s not fair. This is one of those things that’s kind of mind-numbingly complex, but it can have a real impact, right? If some of these patents get disallowed or delisted, I guess, from the Orange Book, the official listing of patents for drugs?

Luhby: If that happens, it does clear the pathway for us to get generics and cheaper drugs that way. So there definitely is that that could lower the prices of some of these, and some of the ones listed are pretty commonly used things that people use on a regular basis like inhalers, that kind of stuff.

Rovner: So if there was a generic, it could have a big impact because a lot of people would end up using it.

Finally, this week the Biden administration — remember the Biden administration? — issued a rule that would crack down on some marketing tactics by Medicare Advantage plans. Meanwhile, the Senate Finance Committee approved a health “extenders” bill that extends programs that would otherwise expire, and it includes, among lots of Medicare and Medicaid odds and ends, a requirement that Medicare Advantage plans keep a more timely list of the providers that are in and out of network, which I think might be the most frustrating thing about most managed-care plans, not just Medicare Advantage.

Both the administration’s proposed rule and the finance bill are smallish, but they represent stuff that keeps these programs up to date. I mean, Tami, there’s some significant stuff here, isn’t there?

Luhby: Yeah. Medicare Advantage is getting more attention because it’s getting larger. I think this is the first year that it’s crossed the 50% threshold and it’s expected to just continue growing as younger baby boomers coming in who are used to employer health insurance want to keep that. And there are a lot of pros and cons about Medicare Advantage for the consumer, and the administration is making sure … or is trying incrementally to make sure that people understand what they’re getting into.

I’ve seen a couple, now that it’s open enrollment time, I’ve seen a couple of the ads, which interestingly do seem to be targeted towards older women, not necessarily baby boomers coming in, but they’re kind of crazy and they can be very misleading. And the administration, in this latest effort, is trying to limit commissions of brokers because there are additional incentives that companies and insurers can provide to brokers beyond just the fees. So they’re trying to rein that in. Previously, they were working on Medicare Advantage marketing, so there’s a lot that they’re trying to do to just make sure that people are aware of what they can do.

This proposed rule would require that these supplemental benefits, which are one of the attractive features of Medicare Advantage, because Medicare doesn’t cover vision, dental, hearing, et cetera, but the administration wants to make sure that people actually know about these benefits and are using them and it’s not just a sweetener that the insurers are dangling at open enrollment time.

Rovner: To get people to sign up.

Luhby: They’re incremental, but they’re trying to make it a little more transparent.

Rovner: Yeah, I think it’s just important to remember that the incessant marketing, and boy, it is incessant, suggests that these companies are making a lot of money on Medicare Advantage.

Luhby: Oh, yeah.

Rovner: They would not be spending all of this money to advertise if this were not a very profitable line of business for them.

Luhby: And a growing line, of course, because more and more people are going to be eligible.

Rovner: Yeah. So we will watch that space too.

Well, before we get to our “Bill of the Month” interview, it’s time for “This Week in Medical Misinformation.” I chose this week a study from the Ohio State University of health advice related to gynecologic cancers that was most popular on TikTok. The study found at least 73% of content was inaccurate and of poor educational quality and that it furthered already existing racial disparities in cancer care. We will link to the study in the notes, but at least we know that there are people trying to quantify the amount of misinformation that’s out there, if not figure out what to do about it.

OK. That is this week’s news. Now we will play my interview with my colleague Julie Appleby, then we will come back with our extra credits.

I am pleased to welcome back to the podcast my colleague Julie Appleby, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Julie, thanks for joining us again.

Julie Appleby: Thanks for having me.

Rovner: So this month’s patient had a very small bill compared to most of them, but likely the kind that affects millions of patients. Tell us who she is and what brought her to our attention.

Appleby: Yes, exactly. Her name is Christine Rogers and she lives in Wake Forest, North Carolina. And like a lot of us, she went in for an exam with her doctor, sort of an annual-type exam. And while she was in the waiting room, they handed her a screening form for depression and for other mental health concerns, and she filled it out, and then went and saw her doctor.

During the discussion with her doctor, her doctor asked her about depression and her general mood, and Rogers had lost her mother that year, and so she told her doctor, “Yeah, it’s been a horrible year. I lost my mom.” So they had some discussion about that, and Rogers estimates it was about a five-minute discussion about depression, and then the visit wrapped up. Her doctor didn’t recommend any treatment or refer her for counseling or anything like that. It was just a discussion.

So Rogers was a little surprised when, later, she got a bill for that visit because, as you’ll remember, under the Affordable Care Act, preventive services, including depression screening, is supposed to be covered without a copay or a deductible. So she was a little surprised, and yeah, it wasn’t much. It was $67. That was her share of the visit. So she was just curious, why is this happening and what’s going on?

Rovner: So she calls the doctor’s office and said, “This is supposed to be free.” And what did they say?

Appleby: Right. She said that, and they explained to her that she had a discussion above and beyond just preventive, and so she was billed for a separate visit, basically, a 20- to 29-minute visit, specifically for the discussion treatment and that’s why she owed the money. So really, it wasn’t part of the wellness exam. It was part of a separate exam even though she was in the same office at the same time.

Rovner: But when I go for an annual physical, they give you a questionnaire. It’s not just about mental health. It’s about a lot of things, and it includes mental health. If you had a discussion about any of them, would that be billed separately? Could it be billed separately?

Appleby: Well, here’s where the nuance kicks in. So, as I said, under the Affordable Care Act, there’s a lot of preventive services that are covered without a copay. Things like certain cancer tests, certain vaccines, and yes, depression screening, but if you bring up something else during your wellness visit, they can indeed bill you for that.

So let’s say, for example, you mentioned to your doctor, “My shoulder’s really been killing me ever since I started playing pickleball,” and so then the doctor did some more exam of your shoulder. That could potentially be billed separately because it’s not part of the wellness visit. And in this case, initially, the doctor’s office coded it as two separate visits because it went above and beyond just a quick discussion of the questionnaire or just filling out the questionnaire.

Rovner: She goes to the doctor, the doctor says, “No, this is correct.” Then what happens?

Appleby: So then after we started calling around, we did talk to the insurer, Cigna, and the doctor’s practice, which is owned by WakeMed Physician Practices. And initially, they said the bill was coded correctly from the doctor’s office because it was a separate discussion. But after Cigna got involved, eventually after we talked to them, Rogers got a new explanation of benefits that zeroed out the visit. And a Cigna spokesperson said that the wellness visit was initially billed incorrectly with these two separate visit codes, basically, and that they had fixed that.

And so Christine Rogers did get her $67 back. But I think this does illustrate the issue of not all preventive services are covered without a copay if it goes beyond what they consider preventive. And that can be challenging. And many people that I spoke with for this article said Rogers did the exact right thing. She talked to her doctor honestly, and everybody emphasized that people should not avoid discussing health concerns with their doctors at a wellness visit for fear of getting a bill because, really, you’re there to get health care.

So what they do suggest is if after one of these wellness visits, if you do get a bill, you should ask about it, ask for an explanation of benefits, ask for an itemized billing statement. And if something seems off, question that. But keep in mind that some things, if they go beyond the preventive care guidelines, that you might get a separate bill even during what you might otherwise think would be a no-cost wellness visit.

Rovner: And if your shoulder’s bothering you after you take up pickleball, you probably should let a doctor look at it.

Appleby: You probably should.

Rovner: And I know that this was a fairly small bill, certainly in the scope of the bills that we usually look at, but this happened a lot with colonoscopies, that people would go in for the preventive colonoscopy that was paid for, but then if they found a polyp and took it off, suddenly they’d be charged for the surgery having the polyp removed. And that’s a lot more than $67.

Appleby: Right. And that has since been fixed. There’s been some clarification issued by CMS and others that that is not supposed to happen. So again, you go in for a screening colonoscopy, and that is supposed to be covered whether they find a polyp or not.

Now, if you go in because you have symptoms and there’s some other kind of problem, that’s where it can get more complicated. And we’ve seen that with other screenings too, such as mammograms. A screening mammogram is covered under the preventive services guidelines, but if you find a lump, there may be some questions to whether it’s gone from a screening mammogram to a diagnostic mammogram, which is covered under different guidelines.

Rovner: Bottom line, you should always look at your bill even if it’s for something small.

Appleby: Yes, that’s always a good rule of thumb. And if you have any questions, certainly contact your physician’s office and start there and ask about that. And you may also want to ask your insurer.

Rovner: Great. Julie Appleby, thanks for joining us.

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

Sandhya, why don’t you go first this week?

Raman: So my extra credit is called “Sex Trafficking, Drugs and Assault: Texas Foster Kids and Caseworkers Face Chaos in Rental Houses and Hotels,” and it’s by Karen Brooks Harper at the Texas Tribune.

Her story examines a report that looks at the Texas Department of Family and Protective Services that was done by some court-appointed watchdogs to report about some of the efforts to improve the foster care system. And they found a lot of overworked case workers that didn’t have training and no round-the-clock security. And it’s just a really important story about what’s trying to be done and what needs to be done for caring for some very vulnerable kids. Many of them, as the title suggests, are sex trafficking victims or from psychiatric facilities, and it’s just an unsafe environment for both the workers and the kids. So check that out.

Rovner: Alice?

Ollstein: So I picked a piece I did this week that sort of fell through the cracks in the news, but people should really be paying attention to this. It was a pretty scary report out of the Centers for Disease Control [and Prevention] about congenital syphilis. This is syphilis in pregnant people that is passed to infants in birth. And when not treated, it can be really deadly. It can cause stillbirths, it can cause birth defects, it can cause all kinds of issues, infertility in the parent, et cetera. And this has jumped tenfold over the last decade. It is killing hundreds of infants.

This is really scary. They sound that … so many people are just getting no prenatal care at all. And even when they are, they’re not getting tested for syphilis. And even when they’re getting tested and even when it’s detected, they’re not getting the treatment. And so people are really falling through the cracks. And, hopefully, this gets some more attention on this, but it’s also coming at a time when Congress is debating cutting these kinds of sexual health programs and services even more, not expanding them, which is what the report says is needed.

Rovner: That’s right. These are some of the things that would be cut in the proposed HHS spending bill that’s still kicking around in the House. Tami?

Luhby: So I looked at a ProPublica story. ProPublica has done several excellent deep dives into health insurers’ rejections of policyholders’ claims. These are very hard stories to do. They really are good at pulling back the curtain on these decisions that most people know very little about. So the latest story is by T. Christian Miller. It’s titled, “Big Insurance Met Its Match When It Turned Down a Top Trial Lawyer’s Request for Cancer Treatment.” It’s a long story, but it’s a piece about Robert Salim, I think, a litigator who was diagnosed with stage 4 throat cancer in 2018. His doctor recommended proton therapy, which specifically would minimize the damage to the surrounding tissues. Some of the side effects could be loss of hearing, damage to the sense of taste and smell, brain issues, memory loss. But the insurer, Blue Cross Blue Shield of Louisiana, refused to pay for it, saying it was not medically necessary. So Salim was able to pay the nearly $100,000 cost of treatment because he didn’t want to do these additional therapies first, which could leave him with hearing loss and all these other problems.

Rovner: Yeah, because he’s a rich trial lawyer, so he could afford it.

Luhby: Right, so he could afford it and he didn’t want to waste the time. But he also decided to battle Blue Cross and Blue Shield because, as he put it, he’s paid them $100,000 in premiums for him and for his employees at his law firm. And he’s just like, “Now that I need it, they’re not there.” So the story goes into the lengths that Salim had to go to, including his doctor sending in a 225-page request to Blue Cross to do an independent medical review. But what was interesting was that multiple doctors that were hired by the insurer to battle Salim’s appeal kept referring to guidelines that are created by this company called AIM Specialty Health, which is actually part of Anthem. So Salim, who has now been cancer-free for nearly five years, the appeal didn’t work, so he ended up taking Blue Cross to court and he actually won, but he’s still waiting to get his reimbursement. So read the story. It has a lot of twists and turns and shows that even someone with means and expertise, the battle is still so difficult. How can people who don’t have the resources, both financially and legally to do this … he had to hire a friend of his to take them to court, like a childhood friend or a college friend, because it was such a difficult case to put before the courts. It’s a good story.

Rovner: Yeah, it’s the juicy story of the week.

Luhby: It’s a scary story.

Rovner: Scary and juicy. Well, my story actually builds on Tami’s story. It’s also from ProPublica. It also builds on our “Bill of the Month” project. It is a new tool that can help patients file the paperwork to find out why their insurer denied a claim. As we have pointed out so many times, most people simply don’t bother to argue with their health care providers or insurers because they don’t know how, and it is not easy. They make it difficult on purpose. This tool actually walks you through a key part of the process: how to ask for the information that the insurance company used to deny the claim. It’s super helpful and it’s a good place to go rather than doing the sort of one at a time, “I have this bill, will you look at it, journalist?” Here’s a way where people can at least start to do their own digging. As Tami says, it gets harder, but many people are being denied care that they are, in fact, eligible to. So here’s a way to at least start to try and get that care.

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 tireless engineer, Francis Ying.

Also, 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 Threads. Sandhya?

Raman: @SandhyaWrites.

Rovner: Tami?

Luhby: Well, I’m at @Luhby, but it’s not really worth looking at it.

Rovner: Alice?

Ollstein: @AliceOllstein.

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

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Partnerships Editor and Senior Correspondent, oversees placement of KFF Health News content in publications nationwide and covers health reform and federal health policy. Before joining KFF Health News, Mary Agnes was associate editor of CQ HealthBeat, Capitol Hill Bureau Chief for Congressional Quarterly, and a reporter with Dow Jones Newswires. A frequent radio and television commentator, she has appeared on CNN, C-SPAN, the PBS NewsHour, and on NPR affiliates nationwide. Her stories have appeared in The Washington Post, USA Today, TheAtlantic.com, Time.com, Money.com, and The Daily Beast, among other publications. She worked for newspapers in Connecticut and Pennsylvania, and has a master’s degree in journalism from Columbia University.

In most states, open enrollment for plans on the Affordable Care Act exchange — also known as Obamacare — began Nov. 1 and lasts until Dec. 15, though some states go longer. With premiums expected to increase by a median of 6%, consumers who get their health coverage through the federal or state ACA marketplaces are encouraged to shop around. Because of enhanced subsidies and cost-sharing assistance, they might save money by switching plans.

Meanwhile, Ohio is yet again an election-year battleground state. A ballot issue that would provide constitutional protection to reproductive health decisions has become a flashpoint for misinformation and message testing.

This week’s panelists are Mary Agnes Carey of KFF Health News, Jessie Hellmann of CQ Roll Call, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachana Pradhan of KFF Health News.

Panelists

Jessie Hellmann
CQ Roll Call

@jessiehellmann

Read Jessie's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories

Among the takeaways from this week’s episode:

• Open enrollment for most plans on the Affordable Care Act exchange — also known as Obamacare — began Nov. 1 and lasts until Dec. 15, though enrollment lasts longer in some states. With premiums expected to increase by a median of 6%, consumers are advised to shop around. Enhanced subsidies are still in place post-pandemic, and enhanced cost-sharing assistance is available to those who qualify. Many people who have lost health coverage may be eligible for subsidies.
• In Ohio, voters will consider a ballot issue that would protect abortion rights under the state constitution. This closely watched contest is viewed by anti-abortion advocates as a testing ground for messaging on the issue. Abortion is also key in other races, such as for Pennsylvania’s Supreme Court and Virginia’s state assembly, where the entire legislature is up for election.
• Earlier this week, President Joe Biden issued an executive order that calls on federal agencies, including the Department of Health and Human Services, to step into the artificial intelligence arena. AI is a buzzword at every health care conference or panel these days, and the technologies are already in use in health care, with insurers using AI to help make coverage decisions. There is also the recurring question, after many hearings and much discussion: Why hasn’t Congress acted to regulate AI yet?
• Our health care system — in particular the doctors, nurses, and other medical personnel — hasn’t recovered from the pandemic. Workers are still burned out, and some have participated in work stoppages to make the point that they can’t take much more. Will this be the next area for organized labor, fresh from successful strikes against automakers, to grow union membership? Take pharmacy workers, for instance, who are beginning to stage walkouts to push for improvements.
• And, of course, for the next installment of the new podcast feature, “This Week in Medical Misinformation:” The official government website of the Republican-controlled Ohio Senate is attacking the proposed abortion amendment in what some experts have said is a highly unusual and misleading manner. Headlines on its “On The Record” blog include “Abortion Is Killing the Black Community” and say the ballot measure would cause “unimaginable atrocities.” The Associated Press termed the blog’s language “inflammatory.”

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

Mary Agnes Carey: Stat News’ “The Health Care Issue Democrats Can’t Solve: Hospital Reform,” by Rachel Cohrs.

Jessie Hellmann: The Washington Post’s “Drugstore Closures Are Leaving Millions Without Easy Access to a Pharmacy,” by Aaron Gregg and Jaclyn Peiser.

Joanne Kenen: The Washington Post’s “Older Americans Are Dominating Like Never Before, but What Comes Next?” by Marc Fisher.

Rachana Pradhan: The New York Times’ “How a Lucrative Surgery Took Off Online and Disfigured Patients,” by Sarah Kliff and Katie Thomas.

Click to open the Transcript

Transcript: For ACA Plans, It’s Time to Shop Around

[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.]

Mary Agnes Carey: Hello, and welcome back to “What the Health?” I’m Mary Agnes Carey, partnerships editor for KFF Health News, filling in this week for Julie Rovner. I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Nov. 2, at 10 a.m. ET. As always, news happens fast, and things might’ve changed by the time you hear this.

We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Carey: Jessie Hellmann, of CQ Roll Call.

Jessie Hellmann: Hey there.

Carey: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Thanks for having me.

Carey: It’s great to have you here. It’s great to have all of you here. Let’s start today with the Affordable Care Act. If you’re interested in enrolling in an ACA plan for coverage that begins Jan. 1, it’s time for you to sign up. The ACA’s open enrollment period began Nov. 1 and lasts through Dec. 15 for plans offered on the federal exchange, but some state-based ACA exchanges have longer enrollment periods. Consumers can go online, call an 800 number, get help from an insurance broker or from other ACA navigators and others who are trained to help you research your coverage options, help you find out if you qualify for a subsidy, or if you should consider changing your ACA plan.

What can consumers expect this year during open enrollment? Are there more or fewer choices? Are premiums increasing?

Hellmann: So, I saw the average premium will increase about 6%. So people are definitely going to want to shop around and might not necessarily just want to stick with the same plan that they had last year. And we’re also going to continue seeing the enhanced premiums, subsidies, that Congress passed last year that they kind of stuck with after the pandemic. So subsidies might be more affordable for people — I’m sorry, premiums might be more affordable for people. There’s also some enhanced cost-sharing assistance.

Carey: So it kind of underscores the idea that if you’re on the ACA exchange, you really should go back and take a look, right? Because there might be a different deal out there waiting.

Kenen: I think the wrinkle — this may be what you were just about to ask — but the wrinkle this year is the Medicaid disenroll, the unwinding. There are approximately 10 million, 10 million people, who’ve been disenrolled from Medicaid. Many of them are eligible for Medicaid, and at some point hopefully they’ll figure out how to get them back on. But some of those who are no longer eligible for Medicaid will probably be eligible for heavily subsidized ACA plans if they understand that and go look for it.

This population has been hard to reach and hard to communicate with for a number of reasons, some caused by the health system, not the people, or the Medicaid system, the states. They do have a fallback; they have some extra options. But a lot of those people should click and see what they’re eligible for.

Pradhan: One thing, kind of piggybacking on what Joanne said, that I’m really interested in: Of course, right now is a time when people can actively sign up for ACA plans. But the people who lost Medicaid, or are losing Medicaid — technically, the state Medicaid agency, if they think that a person might qualify for an ACA plan, they’re supposed to automatically transfer those people’s applications to their marketplace, whether it’s healthcare.gov or a state-based exchange. But the data we have so far shows really low enrollment rates into ACA plans from those batches of people that are being automatically transferred. So I’m really curious about whether that’s going to improve and what does enrollment look like in a few months to see if those rates actually increase.

Carey: I’m also wondering what you’re all picking up on the issue of the provider networks. How many doctors and hospitals and other providers are included in these plans? Are they likely to be smaller for 2024? Are they getting bigger? Is there a particular trend you can point to?

I know that sometimes insurers might reduce the number of providers, narrow that network, for example to lower costs. So I guess that remains to be seen here.

Kenen: I haven’t seen data on the ACA plans, and maybe one of the other podcasters has. I haven’t seen that. But we do know that in certain cities, including the one we all live in [Washington, D.C.], many doctors are stopping, are no longer taking insurance. I mean, it’s not most, but the number of people who are dropping being in-network in some of the major networks that we are used to, I think we have all encountered that in our own lives and our friends’ and families’ lives. There are doctors opting out, or they’re in but their practices are closed; they’re not taking more patients, they’re full.

I don’t want to pretend I know how much worse it is or isn’t in ACA plans, but we do know that this is a trend for multiple years. In some parts of the country, it’s getting worse.

Hellmann: Yeah, the Biden administration has been doing some stuff to try to address some of these problems. Last year there were some rules requiring health plans have enough in-network providers that meet specific driving time and distance requirements. So, they are trying to address this, but I wouldn’t be surprised if some of these plans’ networks are still pretty narrow.

Pradhan: Yeah. I mean, I think the concern for a while now with ACA plans is because insurance companies can’t do the things that they did a decade ago to limit premium increases, etc., one of the ways they can keep their costs down is to curtail the number of available providers for someone who signs up for one of these plans. So, like Jessie, I’m curious about how those new rules from last year will affect whether people see meaningful differences in the availability of in-network providers under specific plans.

Carey: That and many other trends are worth watching as we head into the open enrollment season. But right now, I’d like to turn to another topic in the news, and that’s abortion. “What the Health?” listeners know that last week your host, Julie Rovner, created a new segment that she’s calling “This Week in Health Care Misinformation.” Here’s this week’s entry.

A measure before Ohio voters next Tuesday, that’s Nov. 7, would amend Ohio’s constitution to guarantee the right to reproductive health care decisions, including abortion. Abortion rights opponents say the measure is crafted too broadly and should not be approved. The official government website of the Republican-controlled Ohio Senate is attacking the proposed abortion amendment in what some experts have said is a highly unusual and misleading manner. Headlines on the “On The Record” blog — and that’s what it’s called, “On The Record”; this is on the Ohio state website — it makes several claims about the measure that legal and medical experts have told The Associated Press were false or misleading. Headlines on this site include, and I’m quoting here, “Abortion Is Killing the Black Community” and that the proposal would cause, again, another quote, “unimaginable atrocities.” Isn’t it unusual for an official government website to operate in this manner?

Pradhan: I think yes, as far as we know, and that’s really scary. It’s hard enough these days to sort out what is legitimate and what isn’t. We’ve seen AI [artificial intelligence] used in other political campaign materials in the forms of altered videos, photographs, etc. But now this is a really terrifying prospect, I think, that you could provide misinformation to voters — particularly in close races, I would say, that you could really swing an outcome based on what people are being told.

Kenen: The other thing that’s being said in Ohio by the Republicans is that the measure would allow, quote, “partial-birth abortions,” which is a particular — it’s a phrase used to describe a particular type of late-term abortion that’s illegal. Congress passed legislation, I think it’s 15 to 20 years ago now, and it went through the courts and it’s been upheld by the courts. This measure in Ohio does not undo federal law in the state of Ohio or anywhere else. So that’s not true. And that’s another thing circulating.

Carey: This discussion is very important. And to Rachana’s point, how voters perceive this is very important because Ohio is serving as a testing ground for political messaging headed into the presidential race next year. And abortion groups are trying to qualify initiatives in more states in 2024, potentially including Arizona. So even if you haven’t followed this story closely, I mean, how do you think this tactic may influence voters? Again, you’re talking about something — when you hit a news tab on an official state website, you come to this blog. Do you think voters will reject it? Could it possibly influence them — as you were talking about earlier, tip the results?

Kenen: Well, I don’t think we know how it’s going to tip, because I don’t know how many people actually read the state legislature blog.

Carey: Yeah, that could be an issue.

Kenen: Although, and the coverage of it, one would hope, in the state media would point out that some of these claims are untrue. But I mean, it’s taking — you know, the Republicans have lost every single state ballot initiative on abortion, and it’s been a winning issue for the Democrats and they’re trying to reframe it a little bit, because while polls have shown — not just polls, but voting behavior has shown — many Americans want abortion to remain legal, they aren’t as comfortable with late-term abortions, with abortions in the final weeks or months of pregnancy. So this is trying to shift it from a general debate over banning abortion, which is not popular in the U.S., to an area where there’s softer support for abortions later during pregnancy.

And polls have shown really strong support for abortion rights. But this is an area that is not as strong, or a little bit more open to maybe moving people. And if the Republicans succeed in portraying this as falsely allowing a procedure that the country has decided to ban, I think that’s part of what’s going on, is to shift the definition, shift the terms of debate.

Carey: As we know, Ohio is not the only state where abortion is taking center stage. For example, in Pennsylvania, abortion is a key issue in the state Supreme Court justice election, and it’s a test case of political fallout from the Supreme Court, the United States Supreme Court’s decision last summer to overrule Roe v. Wade. In Texas, the state is accusing Planned Parenthood of defrauding the Republican-led state’s Medicaid health insurance program. And in Kansas, in a victory for abortion rights advocates, a judge put a new state law on medication abortions on hold and blocked other restrictions governing the use and distribution of these medications and imposed waiting periods.

And of course, abortion remains a huge issue on Capitol Hill, with House Republicans inserting language into many spending bills to restrict abortion access, to block funding for HIV prevention, contraception, global health programs, and so on. So, which of these cases, or others maybe that you are watching, do you think will be the strongest indicators of how the abortion battle will shake out for the rest of this year and into 2024?

Pradhan: I’m actually going to make a plug for another one that we didn’t mention, which is for our local, D.C.-area listeners, Virginia next week has a state legislative election. So, Gov. [Glenn] Youngkin of course is still — he’s not up for reelection; he’ll sit one single four-year term, but the entire Virginia General Assembly is up for election. So currently Gov. Youngkin says that he wants to institute a 15-week abortion ban, but Republicans would need to control every branch of government, which they do not currently, but it is possible that they will after next week. So that would be a big change as you see abortion restrictions that have proliferated, especially throughout the South and the Midwest. But now Virginia so far has not, in the wake of last year’s Dobbs [v. Jackson Women’s Health Organization] decision, has not imposed greater restrictions on access to abortion.

But I think the 15-week limit also provides kind of a test case, I think, for whether Republicans might be able to coalesce around that standard as opposed to something more aggressive like, say, a total ban or a six-week ban that’s obviously been instituted in certain states but I think at a national level right now is a nonstarter. I’m pretty interested in seeing what happens even in a lot of our own backyard.

Kenen: Because Virginia’s really tightly divided. I mean, the last few elections. This was a traditional Republican state that has become a purple state. And the last few state legislature elections, didn’t they once decide by drawing lots? It was so close. I mean it’s flipped back. It’s really, really, really tiny margins in both houses. I think Rachana lives there and knows the details better than I do. But it’s razor-thin, and it was Republican-controlled for a long time and Democrats, what, have one-seat-in-the-Senate control? Something like that, a very narrow margin. And they may or may not keep it.

Pradhan: Joanne, your memory’s so good, because they had —

Kenen: Because I edited your stories.

Pradhan: You did. I know. And they had to draw names out of a bowl that was— it was in a museum. It was something that a Virginia potter had made and they had to take it out of a museum exhibit. I mean, it was the most — it’s really fascinating what democracy can look like in this country when it comes down to it. It was such a bizarre situation to decide control of the state House. So you’re very right, so it’s very close.

Kenen: It’s also worth pointing out, as we have in prior weeks, that 15 weeks is now being offered as this sort of moderate position, when 15 weeks — a year ago, that’s what the Supreme Court case was really about, the case we know as Dobbs. It was about a law in Mississippi that was a 15-week ban. And what happened is once the courts gave the states the go-ahead, they went way further than 15 weeks. I don’t know how many states have a 15-week ban, not many. The anti-abortion states now have sort of six weeks-ish or less. North Carolina has 12, with some conditions. So 15 weeks is now Youngkin saying, “Here’s the middle ground.” I mean, even when Congress was trying to do a ban, it was 20, so — when they had those symbolic votes, I think it was always 20. He’s changed the parameters of what we’re talking about politically.

Carey: Jessie, how do you see the abortion riders on these appropriations bills, particularly in the House. House Republicans have put a lot of this abortion language into the approps bills. How do you see that shaking out, resolving itself, as we look forward?

Hellmann: It is hard to see how some of these riders could become law, like the one in the FDA-Ag approps bill that would basically ban mailing of mifepristone, which can be used for abortions. Even some moderate Republicans who are really against that rider — I mean just a handful, but it’s enough where it should just be a nonstarter. So I’m just not sure how I can see a compromise on that right now. And I definitely don’t see how that could pass the Senate. So it’s just everything has become so much more contentious since the Roe decision. And things that weren’t contentious before, like the PEPFAR [The United States President’s Emergency Plan for AIDS Relief] reauthorization, are now being bogged down in abortion politics. It’s hard to see how the two sides can come to an agreement at this point.

Carey: Yes, contentious issues are everywhere. So, let’s switch from abortion to AI. Earlier this week, President Biden issued an executive order that calls on several federal agencies, including the Department of Health and Human Services, to create regulations governing the use of AI, including in health care. What uses of AI now in health care, or even future uses, are causing the greatest concern and might be the greatest focus of this executive order? And I’m thinking of things that work well in AI or are accepted, and things that maybe aren’t accepted at this point or people are concerned about.

Kenen: I think that none of us on the panel are super AI experts.

Carey: Nor am I, nor am I.

Kenen: But we are all following it and learning about it the way everybody else is. I think this is something that Vice President Harris pointed out in a summit in London on AI yesterday. There’s a lot of focus on the existential, cosmic scary stuff, like: Is it going to kill us all? But there’s also practical things right now, particularly in health care, like using algorithms to deny people care. And there’s been some exposés of insurance doing batch denials based on an AI formula. There’s concerns about — since AI is based on the data we have and the data, that’s the foundation, that’s the edifice. So the data we have is flawed, there’s racial bias in the data we have. So how do you make sure the algorithms in the future don’t bake in the inequities we already have? And there’s questions too about AI is already being used clinically, and how well does it really work? How reliable are the studies and the data? What do we know or not know before we start?

I mean, it has huge potential. There are risks, but it also has huge potential. So how do we make sure that we don’t have exaggerated happy-go-lucky mistrust in technology before we actually understand what it can and cannot do and what kind of safeguards the government —and the European governments as well; it’s not just us, and they may do a better job — are going to be in place so that we have the good without … The goal is sort of, to be really simplistic about it, is let’s have the good without the bad, but doing it is challenging.

Carey: Oh, Rachana, please.

Pradhan: Well, all I was going to say was nowadays you cannot go to a health care conference or a panel discussion without there being some session about AI. I guess it demonstrates the level of interest. It kind of reminds me of every few years there’s a new health care unicorn. So there was ACOs [accountable care organizations] for a long time; that’s all people would talk about. Or value-based care, like every conference you went to. And then with covid, and for other reasons, everyone is really big on equity, equity, equity for a long time. And now it’s like AI is everywhere.

So like Joanne said, I mean, we have everything from a chatbot that pops up on your screen to answer even benign questions about insurance. That’s AI. It’s a form of AI. It’s not generative AI, but it is. And yeah, I mean, insurance companies use all sorts of algorithms and data to make decisions about what claims they’re going to pay and not pay. So yeah, I think we all just have to exercise some skepticism when we’re trying to examine how this might be used for good or bad.

Kenen: I just want a robot to clean my kitchen. Why doesn’t anyone just handle the … Silicon Valley does the really important stuff.

Carey: That would be a use for good in your house, in my house, in all our houses.

Kenen: Yeah.

Carey: So, while we’re understandably and admittedly not AI experts, we are experts on Congress here. And the president did say in his announcement earlier this week that Congress still needs to act on this issue. Why haven’t they done it yet? They’ve had all these hearings and all this conversation about crafting rules around privacy, online safety, and emerging technologies. Why no action so far? And any bets on whether it may or may not happen in the near future?

Hellmann: I think they don’t know what to do. We’ve only, as a country, started really talking about AI at kitchen tables, to use a cliche, this year. And so Congress is always behind the eight ball on these issues. And even if they are having these member meetings and talking about it, I think it could take a long time for them to actually pass any meaningful legislation that isn’t just directing an agency to do a study or directing an agency to issue regulations or something that could have a really big impact.

Carey: Excellent. Thank you. So let’s touch briefly — before we wrap, I really do want to get to this point and some of the stuff we continue to see in the news about health care workers under fire. It’s certainly not easy to be a health care worker these days. New findings published by the Centers for Disease Control and Prevention show that, in 2022, 13.4% of health workers said they had been harassed at work. That’s up from 6.4% in 2018. That’s more than double the rate of workplace harassment compared to pre-pandemic times, the CDC found.

We’ve talked about this before. It’s worth revisiting again. What is going on with our health care workforce? And what do these kind of findings mean for keeping talented people in the workforce, attracting new people to join?

Hellmann: Has anyone actually caught a break after the pandemic?

Carey: That’s a good point.

Hellmann: I mean, covid is still out there, but I don’t think that our health care system has really recovered from that. People have left the workforce because they’re burned out. People still feel burned out who stuck around, and I don’t know if they really got any breaks or the support that they needed. There’s just kind of this recognition of people being burned out. But I don’t know how much action there is to address the issue.

I feel like sometimes that leads to more burnout, when you see executives and leaders acknowledging the problem but then not really doing much to address it.

Carey: Well, that’s certainly been the complaint by pharmacy staff and others and pharmacists at some of the large drugstore chains, retail chains, that have gone out on strike. They’ve had these two- and three-day strikes recently. So, I’m assuming that will continue, unfortunately, for all the reasons that Jessie just laid out.

Pradhan: Actually, kind of going back to the strikes from pharmacists, I was thinking about this earlier because we’ve seen recently, I think separately in the news when it comes to labor unions, and maybe this will have some bearing, maybe not, but the United Auto Workers strike — I mean, they extracted some of the largest concessions from automakers as far as pay increases. And people are seeing, they really got a victory after striking for weeks. And I think people, at least the coverage that I’ve seen has talked about how that union win might not just catalyze greater labor union involvement, not just in the auto industry but in other parts of the country and other sectors.

And so, I’m not sure what percentage of pharmacists are part of labor unions, but I think people have sort of said more recently that organized labor is having a moment, or has been, that it has not in a while. And so, I’ll be fascinated to see whether there’s a greater appetite among pharmacists to actually be part of a labor union and sort of whether that results in greater demands of some of these corporate chains. As we know — we can talk about this I think in a little bit — but the corporate chains have really taken over pharmacies in America, and rural pharmacies are really dying off. And so that has a lot of important implications for the country.

Kenen: I think the problems with the health care workforce are not all things that labor unions can address, because some of it is how many hours you work and what kind of shifts you have and how often they change and things that — yeah, I mean, labor is having a moment, Rachana’s right. But they’re also tied to larger demographic trends, with an aging society. It’s tied to, our whole system is geared toward the, like dean of nursing at [Johns] Hopkins Sarah Szanton is always talking about, it’s not so much not having enough nurses; we’ve got them in the wrong places. If we did more preventive care and community care and chronic disease management in the community, you wouldn’t have so many people in the hospital in the first place where the workforce crisis is.

So some of these larger issues of how do we have a better health care system; labor negotiations can address aspects of it. Nursing ratios are controversial, but that’s a labor issue. It’s a regulatory issue as well. But our whole system’s so screwed up now that Jessie’s right, nobody recovered from the strains of the pandemic in many sectors, probably all sectors of society, but obviously particularly brutal on the health care workforce. We didn’t get to hit pause and say, OK, nobody get sick for six months while we all recover. The unmet psychiatric needs. I mean, it’s just tons of stuff is wrong, and it’s manifesting itself in a workforce crisis. So maybe if you don’t have anyone to take care of you, maybe people will pay attention to the larger underlying reasons for that.

Carey: That’s an issue I’m sure we will talk more about in the future because it’s just not going anywhere. But for now, we’re going to turn to our extra credit segment. That’s when we each recommend a story we read this week and think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device.

Joanne, why don’t you go first this week?

Kenen: Well, speaking of which, after we just talked about, there’s a piece in The Washington Post by Marc Fisher. It has a long headline: “Older Americans Are Dominating Like Never Before, but What Comes Next?” And basically it’s talking about not so much the nursing and physician workforce, although that’s part of it, just the workforce in general. We have more people working longer, and in areas where there’s shortages, there’s nothing wrong with having old people. A lot of communities have shortages of school bus drivers. So if you have a lot of older school bus drivers and they’re safe and like kids and like driving the bus, more power to them. If you’re 55 and you can drive a school bus full of nine-year-olds, middle schoolers, so much more.

Carey: Good luck with that one.

Kenen: But some of the physician specialties — one of the people in the story is a palliative care physician who retired and isn’t happy retired and wants to go back to work. And that’s another area where we need more people. But it’s a cultural shift, like, who’s doing what when, and how does it affect the younger generation? Although there was a reference to Angelina Jolie being on the old side at 48. I guess for an actress that might be old. But that wasn’t the gist of it. But we have this shift toward older people in many places, not just Trump and Biden. It’s sort of the whole workforce.

Carey: Got it. Jessie.

Hellmann: My extra credit is also a story from The Washington Post. It’s called “Drugstore Closures Are Leaving Millions Without Easy Access to a Pharmacy.” Focused specifically on some of the big national chains like CVS and Walgreens and Rite Aid, which have really kind of dominated the drugstore space over the past few decades. But now they are dealing with the repercussions from all these lawsuits that are being filed alleging they had a role in the opioid epidemic. And the story just kind of looks at the consequences of that.

These aren’t just places people get prescriptions. They rely on them for food, for medical advice, especially in rural and underserved areas. So yeah, I just thought it was a really interesting look at that issue.

Carey: Rachana?

Pradhan: So my extra credit is a story in The New York Times called “How a Lucrative Surgery Took Off Online and Disfigured Patients.” It’s horrifying. It’s a story about surgeons who are performing a complex type of hernia surgery and evidently are learning their techniques, or at least a large share of them are learning their techniques, by watching videos on social media. And the techniques that are demonstrated there are not exactly high quality. So the story digs into resulting harm to patients.

Kenen: And it’s unnecessary surgery in the first place — for many, not all. But it’s a more complicated procedure than they even need in a large portion of these patients.

Carey: My extra credit is written by Rachel Cohrs of Stat, and she’s a frequent guest on this program. Her story is called “The Health Care Issue Democrats Can’t Solve: Hospital Reform.” While Democrats have seized on lowering health care costs as a politically winning issue — they’ve taken on insurers and the drug industry, for example — Rachel writes that hospitals may be a health care giant they’re unable to confront alone, and they being the Democrats. As we know, hospitals are major employers in many congressional districts. There’s been a lot of consolidation in the industry in recent years. And hospital industry lobbyists have worked hard to preserve the image that they are the good guys in the health care industry, Rachel writes, while others, like pharma, are not.

Well, that’s 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 others find us too. Special thanks, as always, to our engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you could still find me on X. I am @maryagnescarey. Rachana?

Pradhan: I am @rachanadpradhan on X.

Carey: Jessie.

Hellmann: @jessiehellmann.

Carey: And Joanne.

Kenen: I’m occasionally on X, @JoanneKenen, and I’m trying to get more on Threads, @joannekenen1.

Carey: We’ll be back in your feed next week, and until then, be healthy.

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A 48 horas de su nacimiento en un hospital del área de Seattle en 2021, Layla Babayev fue sometida a una cirugía por una obstrucción intestinal. Dos semanas después, tuvo otra cirugía de emergencia. Luego desarrolló meningitis.

Layla pasó más de un mes en terapia intensiva neonatal en tres hospitales mientras los médicos buscaban la causa de su enfermedad.

Sus padres la inscribieron en un ensayo clínico para buscar una condición genética. A diferencia de las pruebas genéticas centradas en algunas variantes causantes de enfermedades, que pueden tardar meses en producir resultados, el estudio en el Hospital de Niños de Seattle secuenciaría todo el genoma de Layla, buscando una amplia gama de anomalías, con la posibilidad de ofrecer respuestas en menos de una semana.

La prueba reveló que Layla tenía un trastorno genético raro que causaba defectos gastrointestinales y comprometía su sistema inmunológico. Su padre, Dmitry Babayev contó que, por este hallazgo, sus médicos la aislaron, comenzaron administrarle infusiones semanales de antibióticos, y se pusieron en contacto con otros hospitales que habían tratado la misma condición.

Hoy en día, Babayev atribuye a la prueba, conocida como secuenciación rápida de todo el genoma, la vida de su hija. “Es por eso que creemos que Layla todavía está con nosotros hoy”, dijo.

Sin embargo, la experiencia de Layla con su trastorno es rara. Pocos bebés hospitalizados con una enfermedad sin diagnosticar se someten a la secuenciación rápida de todo el genoma, una herramienta de diagnóstico que permite a los científicos identificar rápidamente trastornos genéticos y guiar las decisiones de tratamiento de los médicos al analizar todo el ADN del paciente.

Esto se debe en gran parte a que muchos seguros de salud, públicos y privados, no cubren el costo que oscila entre $4,000 y $8,000.

Pero una alianza de empresas de pruebas genéticas, farmacéuticas, hospitales infantiles y médicos ha presionado a los estados para aumentar la cobertura bajo Medicaid, y estos esfuerzos han comenzado a dar resultados.

Desde 2021, programas de Medicaid en ocho estados han agregado la secuenciación rápida de todo el genoma a su cobertura o la cubrirán pronto, según GeneDX, un proveedor de la prueba. Esto incluye a Florida, donde la legislatura controlada por los republicanos ha resistido la expansión de Medicaid bajo la Ley de Cuidado de Salud a Bajo Precio (ACA).

Georgia, Massachusetts, Nueva York y Carolina del Norte también están considerando cubrirla, según el Rady Children’s Institute for Genomic Medicine, otro importante proveedor de la prueba.

Que Medicaid cubra la prueba puede expandir significativamente el acceso para los bebés; el programa de salud federal gerenciado por los estados que asegura a las familias de bajos ingresos y que cubre a más del 40% de los niños en su primer año de vida.

“Esta es una prueba extraordinaria y poderosa que puede cambiar el curso de las enfermedades de estos niños y nuestra propia comprensión”, dijo Jill Maron, jefa de pediatría en el Women & Infants Hospital en Providence, Rhode Island, quien ha investigado sobre este test.

“Lo único que está interfiriendo con un uso más generalizado es el pago del seguro”, agregó.

Los defensores de la secuenciación de todo el genoma, que ha estado comercialmente disponible por alrededor de seis años, dicen que puede ayudar a los bebés enfermos con enfermedades potencialmente raras a evitar una odisea de pruebas y hospitalizaciones de meses o años sin un diagnóstico claro, y aumentar la supervivencia.

También señalan estudios que muestran que las pruebas rápidas de todo el genoma pueden reducir los costos generales de salud al disminuir las hospitalizaciones, pruebas y atención innecesarias.

Pero la prueba puede tener sus limitaciones. Aunque es mejor para identificar trastornos raros que las pruebas genéticas antiguas, la secuenciación de todo el genoma detecta una mutación solo alrededor de la mitad de las veces, ya sea porque la prueba no detecta algo o porque el paciente no tiene un trastorno genético en absoluto.

Además, plantea preguntas éticas porque también puede revelar que los bebés, y sus padres, tienen genes que los colocan en mayor riesgo de condiciones que se desarrollan en la adultez, como el cáncer de mama y ovario.

Aun así, algunos médicos dicen que la secuenciación ofrece la mejor oportunidad para hacer un diagnóstico cuando las pruebas de rutina no ofrecen respuestas. Pankaj Agrawal, jefe de neonatología en la Escuela de Medicina Miller de la Universidad de Miami, dijo que solo alrededor del 10% de los bebés que podrían beneficiarse de la secuenciación de todo el genoma la están recibiendo.

“Es súper frustrante tener bebés enfermos y no tener una explicación de qué está causando sus síntomas”, dijo.

Ahora, algunos seguros privados cubren la prueba con ciertas limitaciones, incluidos UnitedHealthcare y Cigna, pero otros no. Incluso en los estados que han adoptado la prueba, la cobertura varía. Florida agregará el beneficio a Medicaid más adelante este año para pacientes de hasta 20 años que estén en terapias intensivas.

Adam Anderson, representante estatal de Florida, un republicano cuyo hijo de 4 años murió en 2019 después de ser diagnosticado con la enfermedad de Tay-Sachs, un trastorno genético raro, lideró la campaña para que Medicaid cubriera la secuenciación. El nuevo beneficio de Medicaid estatal lleva el nombre de su hijo, Andrew.

Anderson dijo que persuadir a sus colegas republicanos fue un desafío, dado que generalmente se oponen a cualquier aumento en el gasto de Medicaid.

“Tan pronto como escucharon el término ‘mandato de Medicaid’, se cerraron”, dijo. “Como estado, somos fiscalmente conservadores, y nuestro programa de Medicaid ya es enorme, y queremos ver Medicaid más pequeño”.

Anderson dijo que a los médicos les llevó más de un año diagnosticar a su hijo, un momento emocionalmente difícil para la familia mientras Andrew soportaba numerosas pruebas y viajes para ver a distintos especialistas en varios estados.

“Sé lo que es no obtener esas respuestas mientras los médicos intentan descubrir qué está mal, y sin pruebas genéticas, es casi imposible”, dijo.

Un análisis de la Cámara de Representantes de Florida estimó que si el 5% de los bebés en las terapias intensivas neonatales del estado se sometieran a la prueba cada año, costaría al programa de Medicaid alrededor de $3.3 millones anuales.

Los líderes legislativos de Florida se persuadieron en parte por un estudio de 2020 llamado Proyecto Baby Manatee, en el cual el Hospital de Niños Nicklaus en Miami secuenció los genomas de 50 pacientes. Como resultado, 20 pacientes, aproximadamente el 40%, recibieron un diagnóstico, lo que llevó a cambios en el cuidado de 19 de ellos.

El ahorro estimado superó los $3.7 millones, con un retorno de inversión de casi $2.9 millones, después del costo de las pruebas, según el informe final.

“Hemos demostrado que podemos justificar esto como una buena inversión”, dijo Parul Jayakar, directora de la División de Genética Clínica y Metabolismo del hospital, quien trabajó en el estudio.

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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This story can be republished for free (details).