Es que el hospital donde se atendía, Winner Regional Health, se ha sumado recientemente al cada vez mayor número de centros de salud rurales que cierran sus unidades de maternidad.

“Ahora va a ser mucho más estresante y complicado para las mujeres recibir la atención médica que necesitan, porque tienen que ir mucho más lejos”, dijo Hofeldt, que tiene fecha de parto de su primer hijo el 10 de junio.

Hofeldt agregó que los viajes más largos suponen más gasto en gasolina y un mayor riesgo de no llegar a tiempo al hospital. “Mi principal preocupación es tener que parir en un auto”, afirma.

Más de un centenar de hospitales rurales han dejado de atender partos desde 2021, según el Center for Healthcare Quality and Payment Reform, una organización sin fines de lucro. El cierre de los servicios de obstetricia se suele achacar a la falta de personal y la falta de presupuesto.

En la actualidad, alrededor del 58% de los condados de Dakota del Sur no cuentan con salas de parto. Es la segunda tasa más alta del país, después de Dakota del Norte, según March of Dimes, una organización que asiste a las madres y sus bebés.

Además, el Departamento de Salud de Dakota del Sur informó que las mujeres embarazadas y los bebés del estado — especialmente las afroamericanas y las nativas americanas— presentan tasas más altas de complicaciones y mortalidad.

Winner Regional Health atiende a comunidades rurales en Dakota del Sur y Nebraska, incluyendo parte de la reserva indígena Rosebud Sioux. El año pasado nacieron allí 107 bebés, una baja considerable respecto de los 158 que nacieron en 2021, contó su director ejecutivo, Brian Williams.

Los hospitales más cercanos con servicios de maternidad se encuentran en pueblos rurales a una hora de distancia, o más, de Winner.

Sin embargo, varias mujeres afirmaron que el trayecto en coche hasta esos centros las llevaría por zonas donde no hay señal de celular confiable, lo que podría suponer un problema si tuvieran una emergencia en el camino.

KFF Health News habló con cinco pacientes de la zona de Winner que tenían previsto que su parto fuera en el Avera St. Mary’s Hospital de Pierre, a unas 90 millas de Winner, o en uno de los grandes centros médicos de Sioux Falls, a 170 millas de distancia.

Hofeldt y su novio conducen cada tres semanas para ir a las citas prenatales en el hospital de Pierre, que brinda servicios a la pequeña capital y a la vasta zona rural circundante.

A medida que se acerque la fecha del parto, las citas de control y, por lo tanto los viajes, tendrán que ser semanales. Ninguno de los dos tiene un empleo que le brinde permiso con goce de sueldo para ese tipo de consulta médica.

“Cuando necesitamos ir a Pierre, tenemos que tomarnos casi todo el día libre”, explicó Hofeldt, que nació en el hospital de Winner.

Eso significa perder una parte del salario y gastar dinero extra en el viaje. Además, no todo el mundo tiene auto ni dinero para la gasolina, y los servicios de autobús son escasos en las zonas rurales del país.

Algunas mujeres también tienen que pagar el cuidado de sus otros hijos para poder ir al médico cuando el hospital está lejos. Y, cuando nace el bebé, tal vez tengan que asumir el costo de un hotel para los familiares.

Amy Lueking, la médica que atiende a Hofeldt en Pierre, dijo que cuando las pacientes no pueden superar estas barreras, los obstetras tienen la opción de darles dispositivos para monitorear el embarazo en el hogar y ofrecerles consulta por teléfono o videoconferencia.

Las pacientes también pueden hacerse los controles prenatales en un hospital o una clínica local y, más tarde, ponerse en contacto con un profesional de un hospital donde se practiquen partos, dijo Lueking.

Sin embargo, algunas zonas rurales no tienen acceso a la telesalud. Y algunas pacientes, como Hofeldt, no quieren dividir su atención, establecer relaciones con dos médicos y ocuparse de cuestiones logísticas como transferir historias clínicas.

Durante una cita reciente, Lueking deslizó un dispositivo de ultrasonido sobre el útero de Hofeldt. El ritmo de los latidos del corazón del feto resonó en el monitor.

“Creo que es el mejor sonido del mundo”, expresó Lueking.

Hofeldt le comentó que quería un parto lo más natural posible.

Pero lograr que el parto se desarrolle según lo planeado suele ser complicado para quienes viven en zonas rurales, lejos del hospital. Para estar seguras de que llegarán a tiempo, algunas mujeres optan por programar una inducción, un procedimiento en el que los médicos utilizan medicamentos u otras técnicas para provocar el trabajo de parto.

Katie Larson vive en un rancho cerca de Winner, en la localidad de Hamill, que tiene 14 habitantes. Esperaba evitar que le indujeran el parto.

Larson quería esperar a que las contracciones comenzaran de forma natural y luego conducir hasta el Avera St. Mary’s, en Pierre.

Pero terminó programando una inducción para el 13 de abril, su fecha probable de parto. Más tarde, la adelantó al 8 de abril para no perderse una venta de ganado muy importante, que ella y su esposo estaban preparando.

“La gente se verá obligada a elegir una fecha de inducción aunque no sea lo que en un principio hubiera elegido. Si no, correrá el riesgo de tener al bebé en la carretera”, afirmó.

Lueking aseguró que no es frecuente que las embarazadas den a luz mientras se dirigen al hospital en automóvil o en ambulancia. Pero también recordó que el año anterior cinco mujeres que tenían previsto tener a sus hijos en Pierre acabaron haciéndolo en las salas de emergencias de otros hospitales, porque el parto avanzó muy rápido o porque las condiciones del clima hicieron demasiado peligroso conducir largas distancias.

Nanette Eagle Star tenía previsto que su bebé naciera en el hospital de Winner, a cinco minutos de su casa, hasta que el hospital anunció que cerraría su unidad de maternidad. Entonces decidió dar a luz en Sioux Falls, porque su familia podía quedarse con unos familiares que vivían allí y así ahorrar dinero.

El plan de Eagle Star volvió a cambiar cuando comenzó el trabajo de parto prematuramente y el clima se puso demasiado peligroso para manejar o para tomar un helicóptero médico a Sioux Falls.

“Todo ocurrió muy rápido, en medio de una tormenta de nieve”, contó.

Finalmente, Eagle Star tuvo a su bebé en el hospital de Winner, pero en la sala de emergencias, sin epidural, ya que en ese momento no había ningún anestesista disponible. Esto ocurrió  solo tres días después del cierre de la unidad de maternidad.

El fin de los servicios de parto y maternidad en el Winner Regional Health no es solo un problema de salud, según las mujeres de la localidad. También tiene repercusiones emocionales y económicas en la comunidad.

Eagle Star recuerda con cariño cuando era niña e iba con sus hermanas a las citas médicas. Apenas llegaban, iban a un pasillo que tenía fotos de bebés pegadas en la pared y comenzaban una “búsqueda del tesoro” para encontrar polaroids de ellas mismas y de sus familiares.

“A ambos lados del pasillo estaba lleno de fotos de bebés”, contó Eagle Star. Recuerda pensar: “Mira todos estos bebés tan lindos que han nacido aquí, en Winner”.

Hofeldt contó que muchos lugareños están tristes porque sus bebés no nacerán en el mismo hospital que ellos.

Anora Henderson, médica de familia, señaló que la falta de una correcta atención a las mujeres embarazadas puede tener consecuencias negativas para sus hijos. Esos bebés pueden desarrollar problemas de salud que requerirán cuidados de por vida, a menudo costosos, y otras ayudas públicas.

“Hay un efecto negativo en la comunidad”, dijo. “Simplemente no es tan visible y se notará bastante más adelante”.

Henderson renunció en mayo a su puesto en el Winner Regional Health, donde asistía partos vaginales y ayudaba en las cesáreas. El último bebé al que recibió fue el de Eagle Star.

Para que un centro de salud sea designado como hospital con servicio de maternidad, debe contar con instalaciones donde se pueden efectuar cesáreas y proporcionar anestesia las 24 horas del día, los 7 días de la semana, explicó Henderson.

Williams, el director ejecutivo del hospital, dijo que el Winner Regional Health no ha podido contratar suficientes profesionales médicos con formación en esas especializaciones.

En los últimos años, el hospital solo había podido ofrecer servicios de maternidad cubriendo aproximadamente $1,2 millones anuales en salarios de médicos contratados de forma temporal, señaló. Pero el hospital ya no podía seguir asumiendo ese gasto.

Otro reto financiero está dado porque muchos partos en los hospitales rurales están cubiertos por Medicaid, el programa federal y estatal que ofrece atención a personas con bajos ingresos o discapacidades.

El programa suele pagar aproximadamente la mitad de lo que pagan las aseguradoras privadas por los servicios de parto, según un informe de 2022 de la U.S. Government Accountability Office (GAO).

Williams contó que alrededor del 80% de los partos en Winner Regional Health estaban cubiertos por Medicaid.

Las unidades obstétricas suelen constituir el mayor gasto financiero de los hospitales rurales y, por lo tanto, son las primeras que se cierran cuando un centro de salud atraviesa dificultades económicas, explica el informe de la GAO.

Williams dijo que el hospital sigue prestando atención prenatal y que le encantaría reanudar los partos si pudiera contratar suficiente personal.

Henderson, la médica que dimitió del hospital de Winner, ha sido testigo del declive de la atención materna en las zonas rurales durante décadas.

Recuerda que, antes de que naciera su hermana, acompañaba a su madre a las citas médicas. En cada viaje, su madre recorría unas 100 millas después de que el hospital de la ciudad de Kadoka cerrara en 1979.

Henderson trabajó durante casi 22 años en el Winner Regional Health, lo que permitió que muchas mujeres no tuvieran que desplazarse para dar a luz, como le ocurrió a su madre.

A lo largo de los años, atendió a nuevas pacientes cuando cerraron las unidades de maternidad de un hospital rural cercano y luego las de un centro del Servicio de Salud Indígena. Finalmente, el propio hospital de Henderson dejó de atender partos.

“Lo que ahora realmente me frustra es que pensaba que iba a dedicarme a la medicina familiar y trabajar en una zona rural, y que así íbamos a solucionar estos problemas, para que las personas no tuvieran que conducir 100 millas para tener un bebé”, se lamentó.

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If they couldn’t reach an agreement, he’d have to find new doctors or new health insurance.

“All my medical information is with Baylor Scott & White,” said Neary, 87, who retired from a career in financial services. His doctors are a five-minute drive from his house. “After so many years, starting over with that many new doctor relationships didn’t feel like an option.”

After several anxious weeks, Neary learned Humana and Baylor were parting ways as of this year, and he was forced to choose between the two. Because the breakup happened during the annual fall enrollment period for Medicare Advantage, he was able to pick a new Advantage plan with coverage starting Jan. 1, a day after his Humana plan ended.

Other Advantage members who lose providers are not as lucky. Although disputes between health systems and insurers happen all the time, members are usually locked into their plans for the year and restricted to a network of providers, even if that network shrinks. Unless members qualify for what’s called a special enrollment period, switching plans or returning to traditional Medicare is allowed only at year’s end, with new coverage starting in January.

But in the past 15 months, the Centers for Medicare & Medicaid Services, which oversees the Medicare Advantage program, has quietly offered roughly three-month special enrollment periods allowing thousands of Advantage members in at least 13 states to change plans. They were also allowed to leave Advantage plans entirely and choose traditional Medicare coverage without penalty, regardless of when they lost their providers. But even when CMS lets Advantage members leave a plan that lost a key provider, insurers can still enroll new members without telling them the network has shrunk.

At least 41 hospital systems have dropped out of 62 Advantage plans serving all or parts of 25 states since July, according to Becker’s Hospital Review. Over the past two years, separations between Advantage plans and health systems have tripled, said FTI Consulting, which tracks reports of the disputes.

CMS spokesperson Catherine Howden said it is “a routine occurrence” for the agency to determine that provider network changes trigger a special enrollment period for their members. “It has happened many times in the past, though we have seen an uptick in recent years.”

Still, CMS would not identify plans whose members were allowed to disenroll after losing health providers. The agency also would not say whether the plans violated federal provider network rules intended to ensure that Medicare Advantage members have sufficient providers within certain distances and travel times.

The secrecy around when and how Advantage members can escape plans after their doctors and hospitals drop out worries Sen. Ron Wyden of Oregon, the senior Democrat on the Senate Finance Committee, which oversees CMS.

“Seniors enrolled in Medicare Advantage plans deserve to know they can change their plan when their local doctor or hospital exits the plan due to profit-driven business practices,” Wyden said.

The increase in insurer-provider breakups isn’t surprising, given the growing popularity of Medicare Advantage. The plans attracted about 54% of the 61.2 million people who had both Medicare Parts A and B and were eligible to sign up for Medicare Advantage in 2024, according to KFF, a health information nonprofit that includes KFF Health News.

The plans can offer supplemental benefits unavailable from traditional Medicare because the federal government pays insurers about 20% more per member than traditional Medicare per-member costs, according to the Medicare Payment Advisory Commission, which advises Congress. The extra spending, which some lawmakers call wasteful, will total about $84 billion in 2025, MedPAC estimates. While traditional Medicare does not offer the additional benefits Advantage plans advertise, it does not limit beneficiaries’ choice of providers. They can go to any doctor or hospital that accepts Medicare, as nearly all do.

Sanford Health, the largest rural health system in the U.S., serving parts of seven states from South Dakota to Michigan, decided to leave a Humana Medicare Advantage plan last year that covered 15,000 of its patients. “It’s not so much about the finances or administrative burden, although those are real concerns,” said Nick Olson, Sanford Health’s chief financial officer. “The most important thing for us is the fact that coverage denials and prior authorization delays impact the care a patient receives, and that’s unacceptable.”

The National Association of Insurance Commissioners, representing insurance regulators from every state, Puerto Rico, and the District of Columbia, has appealed to CMS to help Advantage members.

“State regulators in several states are seeing hospitals and crucial provider groups making decisions to no longer contract with any MA plans, which can leave enrollees without ready access to care,” the group wrote in September. “Lack of CMS guidance could result in unnecessary financial or medical injury to America’s seniors.”

The commissioners appealed again last month to Health and Human Services Secretary Robert F. Kennedy Jr. “Significant network changes trigger important rights for beneficiaries, and they should receive clear notice of their rights and have access to counseling to help them make appropriate choices,” they wrote.

The insurance commissioners asked CMS to consider offering a special enrollment period for all Advantage members who lose the same major provider, instead of placing the burden on individuals to find help on their own. No matter what time of year, members would be able to change plans or enroll in government-run Medicare.

Advantage members granted this special enrollment period who choose traditional Medicare get a bonus: If they want to purchase a Medigap policy — supplemental insurance that helps cover Medicare’s considerable out-of-pocket costs — insurers can’t turn them away or charge them more because of preexisting health conditions.

Those potential extra costs have long been a deterrent for people who want to leave Medicare Advantage for traditional Medicare.

“People are being trapped in Medicare Advantage because they can’t get a Medigap plan,” said Bonnie Burns, a training and policy specialist at California Health Advocates, a nonprofit watchdog that helps seniors navigate Medicare.

Guaranteed access to Medigap coverage is especially important when providers drop out of all Advantage plans. Only four states — Connecticut, Massachusetts, Maine, and New York — offer that guarantee to anyone who wants to reenroll in Medicare.

But some hospital systems, including Great Plains Health in North Platte, Nebraska, are so frustrated by Advantage plans that they won’t participate in any of them.

It had the same problems with delays and denials of coverage as other providers, but one incident stands out for CEO Ivan Mitchell: A patient too sick to go home had to stay in the hospital an extra six weeks because her plan wouldn’t cover care in a rehabilitation facility.

With traditional Medicare the only option this year for Great Plains Health patients, Nebraska insurance commissioner Eric Dunning asked for a special enrollment period with guaranteed Medigap access for some 1,200 beneficiaries. After six months, CMS agreed.

Once Delaware’s insurance commissioner contacted CMS about the Bayhealth medical system dropping out of a Cigna Advantage plan, members received a special enrollment period starting in January.

Maine’s congressional delegation pushed for an enrollment period for nearly 4,000 patients of Northern Light Health after the 10-hospital system dropped out of a Humana Advantage plan last year.

“Our constituents have told us that they are anticipating serious challenges, ranging from worries about substantial changes to cost-sharing rates to concerns about maintaining care with current providers,” the delegation told CMS.

CMS granted the request to ensure “that MA enrollees have access to medically necessary care,” then-CMS Administrator Chiquita Brooks-LaSure wrote to Sen. Angus King (I-Maine).

Minnesota insurance officials appealed to CMS on behalf of some 75,000 members of Aetna, Humana, and UnitedHealthcare Advantage plans after six health systems announced last year they would leave the plans in 2025. So many provider changes caused “tremendous problems,” said Kelli Jo Greiner, director of the Minnesota State Health Insurance Assistance Program, known as a SHIP, at the Minnesota Board on Aging. SHIP counselors across the country provide Medicare beneficiaries free help choosing and using Medicare drug and Advantage plans.

Providers serving about 15,000 of Minnesota’s Advantage members ultimately agreed to stay in the insurers’ networks. CMS decided 14,000 Humana members qualified for a network-change special enrollment period.

The remaining 46,000 people — Aetna and UnitedHealthcare Advantage members — who lost access to four health systems were not eligible for the special enrollment period. CMS decided their plans still had enough other providers to care for them.

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A KFF Health News analysis underscores that the terminations are sparing no part of the country, politically or geographically. About 40% of organizations whose grants the NIH cut in its first month of slashing, which started Feb. 28, are in states Trump won in November.

The Trump administration has singled out Ivy League universities including Columbia and Harvard for broad federal funding cuts. But the spending reductions at the NIH, the nation’s foremost source of funding for biomedical research, go much further: Of about 220 organizations that had grants terminated, at least 94 were public universities, including flagship state schools in places such as Florida, Georgia, Ohio, Nebraska, and Texas.

The Trump administration has canceled hundreds of grants supporting research on topics such as vaccination; diversity, equity, and inclusion; and the health of LGBTQ+ populations. Some of the terminations are a result of Trump’s executive orders to abandon federal work on diversity and equity issues. Others followed the Senate confirmation of anti-vaccine activist Robert F. Kennedy Jr. to lead the Department of Health and Human Services, which oversees the NIH. Many mirror the ambitions laid out in Project 2025’s “Mandate for Leadership,” the conservative playbook for Trump’s second term.

Affected researchers say Trump administration officials are taking a cudgel to efforts to improve the lives of people who often experience worse health outcomes — ignoring a scientific reality that diseases and other conditions do not affect all Americans equally.

KFF Health News found that the NIH terminated about 780 grants or parts of grants between Feb. 28 and March 28, based on documents published by the Department of Health and Human Services and a list maintained by academic researchers. Some grants were canceled in full, while in other cases, only supplements — extra funding related to the main grant, usually for a shorter-term, related project — were terminated.

Among U.S. recipients, 96 of the institutions that lost grants in the first month are in politically conservative states including Florida, Ohio, and Indiana, where Republicans control the state government or voters reliably support the GOP in presidential campaigns, or in purple states such as North Carolina, Michigan, and Pennsylvania that were presidential battleground states. An additional 124 institutions are in blue states.

Sybil Hosek, a research professor at the University of Illinois-Chicago, helps run a network that focuses on improving care for people 13 to 24 years old who are living with or at risk for HIV. The NIH awarded Florida State University $73 million to lead the HIV project.

“We never thought they would destroy an entire network dedicated to young Americans,” said Hosek, one of the principal investigators of the Adolescent Medicine Trials Network for HIV/AIDS Interventions. The termination “doesn’t make sense to us.”

NIH official Michelle Bulls is director of the Office of Policy for Extramural Research Administration, which oversees grants policy and compliance across NIH institutes. In terminating the grant March 21, Bulls wrote that research “based primarily on artificial and nonscientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment, and ultimately do not enhance health, lengthen life, or reduce illness.”

Adolescents and young adults ages 13 to 24 accounted for 1 in 5 new HIV infections in the U.S. in 2022, according to the Centers for Disease Control and Prevention.

“It’s science in its highest form,” said Lisa Hightow-Weidman, a professor at Florida State University who co-leads the network. “I don’t think we can make America healthy again if we leave youth behind.”

HHS spokesperson Emily Hilliard said in an emailed statement that “NIH is taking action to terminate research funding that is not aligned with NIH and HHS priorities.” The NIH and the White House didn’t respond to requests for comment.

“As we begin to Make America Healthy Again, it's important to prioritize research that directly affects the health of Americans. We will leave no stone unturned in identifying the root causes of the chronic disease epidemic as part of our mission to Make America Healthy Again,” Hilliard said.

Harm to HIV, Vaccine Studies

The NIH, with its nearly $48 billion annual budget, is the largest public funder of biomedical research in the world, awarding nearly 59,000 grants in the 2023 fiscal year. The Trump administration has upended funding for projects that were already underway, stymied money for new applications, and sought to reduce how much recipients can spend on overhead expenses.

Those changes — plus the firing of 1,200 agency employees as part of mass layoffs across the government — are alarming scientists and NIH workers, who warn that they will undermine progress in combating diseases and other threats to the nation’s public health. On April 2, the American Public Health Association, Ibis Reproductive Health, and affected researchers, among others, filed a lawsuit in federal court against the NIH and HHS to halt the grant cancellations.

Two National Cancer Institute employees, who were granted anonymity because they were not authorized to speak to the press and feared retaliation, said its staff receives batches of grants to terminate almost daily. On Feb. 27, the cancer institute had more than 10,800 active projects, the highest share of the NIH’s roughly two dozen institutes and centers, according to the NIH’s website. At least 47 grants that NCI awarded were terminated in the first month.

Kennedy has said the NIH should take a years-long pause from funding infectious disease research. In November 2023, he told an anti-vaccine group, “I’m gonna say to NIH scientists, ‘God bless you all. Thank you for public service. We’re going to give infectious disease a break for about eight years,’” according to NBC News.

For years, Kennedy has peddled falsehoods about vaccines — including that “no vaccine” is “safe and effective,” and that “there are other studies out there” showing a connection between vaccines and autism, a link that has repeatedly been debunked — and claimed falsely that HIV is not the only cause of AIDS.

KFF Health News found that grants in blue states were disproportionately affected, making up roughly two-thirds of terminated grants, many of them at Columbia University. The university had more grants terminated than all organizations in politically red states combined. On April 4, Democratic attorneys general in 16 states sued HHS and the NIH to block the agency from canceling funds.

Researchers whose funding was stripped said they stopped clinical trials and other work on improving care for people with HIV, reducing vaping and smoking rates among LGBTQ+ teens and young adults, and increasing vaccination rates for young children. NIH grants routinely span several years.

For example, Hosek said that when the youth HIV/AIDS network’s funding was terminated, she and her colleagues were preparing to launch a clinical trial examining whether a particular antibiotic that is effective for men to prevent sexually transmitted infections would also work for women.

“This is a critically important health initiative focused on young women in the United States,” she said. “Without that study, women don’t have access to something that men have.”

Other scientists said they were testing how to improve health outcomes among newborns in rural areas with genetic abnormalities, or researching how to improve flu vaccination rates among Black children, who are more likely to be hospitalized and die from the virus than non-Hispanic white children.

“It's important for people to know that — if, you know, they are wondering if this is just a waste of time and money. No, no. It was a beautiful and rare thing that we did,” said Joshua Williams, a pediatric primary care doctor at Denver Health in Colorado who was researching whether sharing stories about harm experienced due to vaccine-preventable diseases — from missed birthdays to hospitalizations and job loss — might inspire caregivers to get their children vaccinated against the flu.

He and his colleagues had recruited 200 families, assembled a community advisory board to understand which vaccinations were top priorities, created short videos with people who had experienced vaccine-preventable illness, and texted those videos to half of the caregivers participating in the study.

They were just about to crack open the medical records and see if it had worked: Were the group who received the videos more likely to follow through on vaccinations for their children? That’s when he got the notice from the NIH.

“It is the policy of NIH not to prioritize research activities that focuses gaining scientific knowledge on why individuals are hesitant to be vaccinated and/or explore ways to improve vaccine interest and commitment,” the notice read.

Williams said the work was already having an impact as other institutions were using the idea to start projects related to cancer and dialysis.

A Hit to Rural Health

Congress previously tried to ensure that NIH grants also went to states that historically have had less success obtaining biomedical research funding from the government. Now those places aren’t immune to the NIH’s terminations.

Sophia Newcomer, an associate professor of public health at the University of Montana, said she had 18 months of work left on a study examining undervaccination among infants, which means they were late in receiving recommended childhood vaccines or didn’t receive the vaccines at all. Newcomer had been analyzing 10 years of CDC data about children’s vaccinations and had already found that most U.S. infants from 0 to 19 months old were not adequately vaccinated.

Her grant was terminated March 10, with the NIH letter stating the project “no longer effectuates agency priorities,” a phrase replicated in other termination letters KFF Health News has reviewed.

“States like Montana don’t get a lot of funding for health research, and health researchers in rural areas of the country are working on solutions to improve rural health care,” Newcomer said. “And so cuts like this really have an impact on the work we’re able to do.”

Montana is one of 23 states, along with Puerto Rico, that are eligible for the NIH’s Institutional Development Award program, meant to bolster NIH funding in states that historically have received less investment. Congress established the program in 1993.

The NIH’s grant terminations hit institutions in 15 of those states, more than half that qualify, plus Puerto Rico.

Researchers Can’t ‘Just Do It Again Later’

The NIH’s research funds are deeply entrenched in the U.S. health care system and academia. Rarely does an awarded grant stay within the four walls of a university that received it. One grant’s money is divvied up among other universities, hospitals, community nonprofits, and other government agencies, researchers said.

Erin Kahle, an infectious disease epidemiologist at the University of Michigan, said she was working with Emory University in Georgia and the CDC as part of her study. She was researching the impact of intimate partner violence on HIV treatment among men living with the virus. “They are relying on our funds, too,” she said.

Kahle said her top priority was to ethically and safely wind down her nationwide study, which included 418 people, half of whom were still participating when her grant was terminated in late March. Kahle said that includes providing resources to participants for whom sharing experiences of intimate partner violence may cause trauma or mental health distress.

Rachel Hess, the co-director of the Clinical & Translational Science Institute at the University of Utah, said the University of Nevada-Reno and Intermountain Health, one of the largest hospital systems in the West, had received funds from a $38 million grant that was awarded to the University of Utah and was terminated March 12.

The institute, which aims to make scientific research more efficient to speed up the availability of treatments for patients, supported over 5,000 projects last year, including 550 clinical trials with 7,000 participants. Hess said that, for example, the institute was helping design a multisite study involving people who have had heart attacks to figure out the ideal mix of medications “to keep them alive” before they get to the hospital, a challenge that’s more acute in rural communities.

After pushback from the university — the institute’s projects included work to reduce health care disparities between rural and urban areas — the NIH restored its grant March 29.

Among the people the Utah center thanked in its announcement about the reversal were the state’s congressional delegation, which consists entirely of Republican lawmakers. “We are grateful to University of Utah leadership, the University of Utah Board of Trustees, our legislative delegation, and the Utah community for their support,” it said.

Hilliard, of HHS, said that “some grants have been reinstated following the appeals process, and the agency will continue to carry out the remaining appeals as planned to determine their alignment.” She declined to say how many had been reinstated, or why the University of Utah grant was among them.

Other researchers haven’t had the same luck. Kahle, in Michigan, said projects like hers can take a dozen years from start to finish — applying for and receiving NIH funds, conducting the research, and completing follow-up work.

“Even if there are changes in the next administration, we’re looking at at least a decade of setting back the research,” Kahle said. “It’s not as easy as like, ‘OK, we’ll just do it again later.’ It doesn’t really work that way.”

Methodology

KFF Health News analyzed National Institutes of Health grant data to determine the states and organizations most affected by the Trump administration’s cuts.

We tallied the number of terminated NIH grants using two sources: a Department of Health and Human Services list of terminated grants published April 4; and a crowdsourced list maintained by Noam Ross of rOpenSci and Scott Delaney of the Harvard T.H. Chan School of Public Health, as of April 8. We focused on the first month of terminations: from Feb. 28 to March 28. We found that 780 awards were terminated in total, with 770 of them going to recipients based in U.S. states and two to recipients in Puerto Rico.

The analysis does not account for potential grant reinstatements, which we know happened in at least one instance.

Additional information on the recipients, such as location and business type, came from the USAspending.gov Award Data Archive.

There were 222 U.S. recipients in total. At least 94 of them were public higher education institutions. Forty-one percent of organizations that had NIH grants cut in the first month were in states that President Donald Trump won in the 2024 election.

Some recipients, including the University of Texas MD Anderson Cancer Center and Vanderbilt University Medical Center, are medical facilities associated with higher education institutions. We classified these as hospitals/medical centers.

We also wanted to see whether the grant cuts affected states across the political spectrum. We generally classified states as blue if Democrats control the state government or Democratic candidates won them in the last three presidential elections, and red if they followed this pattern but for Republicans. Purple states are generally presidential battleground states or those where voters regularly split their support between the two parties: Arizona, Michigan, Nevada, New Hampshire, North Carolina, Pennsylvania, Virginia, and Wisconsin. The result was 25 red states, 17 blue states, and eight purple states. The District of Columbia was also blue.

We found that, of affected U.S. institutions, 96 were in red or purple states and 124 were in blue states.

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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Josephine tiene 16 años y ha sido diagnosticada con mosaicismo de tetrasomía 8p, autismo severo, trastorno obsesivo-compulsivo grave y trastorno por déficit de atención con hiperactividad, entre otras afecciones. Todo esto significa que necesitará asistencia y acompañamiento constantes toda su vida.

Ortiz, de 25 años, es la cuidadora de Josephine. Esta inmigrante venezolana la ayuda a comer, bañarse y hacer tareas diarias que la adolescente no puede hacer sola en su casa en West Orange, Nueva Jersey.

Ortiz cuenta que, en los últimos dos años y medio, ha desarrollado un instinto que le permite detectar posibles factores desencadenantes de las crisis antes de que se agudicen. Por ejemplo, cierra las puertas y les quita las etiquetas de códigos de barras a las manzanas para reducir la ansiedad de Josephine.

Sin embargo, la posibilidad de trabajar en Estados Unidos puede estar en peligro para Ortiz. La administración Trump ordenó poner fin al programa de Estatus de Protección Temporal (TPS) para algunos venezolanos a partir del 7 de abril. El 31 de marzo, un juez federal suspendió la orden, dando a la administración una semana para apelar.

Si el programa se suspende, Ortiz tendrá que abandonar el país o arriesgarse a ser detenida y deportada.

“Nuestra familia quedaría devastada más allá de lo imaginable”, afirma Krysta Senek, la madre de Josephine, quien ha estado buscando un indulto para Ortiz.

Los estadounidenses dependen de muchos trabajadores nacidos en el extranjero para cuidar a sus familiares mayores, lesionados o discapacitados que no pueden valerse por sí mismos.

Según un análisis de la Oficina de Presupuesto del Congreso, casi 6 millones de personas reciben atención personal en un hogar privado o en una residencia grupal, y alrededor de 2 millones utilizan estos servicios en residencias para personas mayores u otras instituciones de cuidado a largo plazo.

Cada vez con más frecuencia, estos cuidadores son inmigrantes como Ortiz. En los centros de cuidados para adultos mayores, la proporción de trabajadores nacidos en el extranjero aumentó tres puntos porcentuales entre 2007 y 2021, hasta alcanzar aproximadamente el 18%, según un análisis de datos del Censo del Instituto Baker de Política Pública de la Universidad Rice, en Houston.

Además, los trabajadores nacidos en el extranjero representan una gran parte de otros proveedores de cuidados directos.

En 2022, más del 40% de los asistentes de salud a domicilio, el 28% de los trabajadores de cuidado personal y el 21% de los asistentes de enfermería habían nacido en el extranjero, un número superior al 18% de extranjeros en el total de la economía ese año, según datos de la Oficina de Estadísticas Laborales.

Esa fuerza laboral está en riesgo como consecuencia de la ofensiva contra los inmigrantes que Donald Trump lanzó en el primer día de su segunda administración.

El presidente firmó órdenes ejecutivas que ampliaron los casos en los que se pueden decidir las deportaciones sin audiencia judicial, suspendieron los programas de reasentamiento de los refugiados y, más recientemente, pusieron fin a los programas de permiso humanitario para ciudadanos de Cuba, Haití, Nicaragua y Venezuela.

Recurriendo a la Ley de Enemigos Extranjeros para deportar a venezolanos e intentando revocar la residencia permanente de otros, la administración Trump ha generado temor incluso entre aquellos que han seguido las reglas de inmigración del país.

"Hay una ansiedad general sobre lo que esto podría significar, incluso si alguien está aquí legalmente", dijo Katie Smith Sloan, presidenta de LeadingAge, una organización sin fines de lucro que representa a más de 5.000 residencias, hogares de cuidados asistidos y otros servicios para adultos mayores.

“Existe preocupación por la persecución injusta, por acciones que pueden ser traumáticas incluso si finalmente esas personas no terminan siendo deportadas. Pero toda esa situación, ya de por sí, altera el entorno de atención de salud”.

Según explicó Smith Sloan, cerrar las vías legales para que los inmigrantes trabajen en Estados Unidos también implica que muchos optarán por irse a países donde sí son bienvenidos y necesarios.

“Estamos compitiendo por el mismo grupo de trabajadores”, afirmó.

Más demanda, menos trabajadores

Se prevé que la demanda de trabajadores que realizan tareas de cuidado aumente considerablemente en el país, a medida que los baby boomers más jóvenes lleguen a la edad de su jubilación.

Según las proyecciones de la Oficina de Estadísticas Laborales, la necesidad de asistentes de salud y de cuidado personal a domicilio crecerá hasta cerca del 21% en el transcurso de la próxima década.

Esos 820.000 puestos adicionales representan el mayor aumento entre todas las actividades laborales. También se proyecta un crecimiento en la demanda de auxiliares de enfermería y camilleros, con un incremento de alrededor de 65.000 puestos.

El trabajo de cuidado suele ser mal remunerado y físicamente exigente, por lo que en general no atrae a suficientes estadounidenses nativos. El salario medio oscila, según la misma Oficina, entre $34.000 y $38.000 anuales.

Los hogares para adultos mayores, las residencias geriátricas con asistencia y las agencias de atención domiciliaria han lidiado durante mucho tiempo con altas tasas de rotación de personal y escasez de empleados, señaló Smith Sloan.

Ahora, además, temen que las políticas migratorias de Trump corten una fuente clave de trabajadores, dejando a muchas personas de edad avanzada, o con discapacidades, sin alguien que las ayude a comer, a vestirse y a realizar sus actividades cotidianas.

Con el gobierno de Trump reorganizando la Administración para la Vida Comunitaria —encargada de los programas que apoyan a adultos mayores y personas con discapacidades— y el Congreso considerando recortes radicales a Medicaid (el mayor financiador de cuidados a largo plazo en el país), las políticas antiinmigración del presidente están generando “la tormenta perfecta” para un sector que aún no se ha recuperado de la pandemia de covid-19, opinó Leslie Frane, vicepresidenta ejecutiva del Sindicato Internacional de Empleados de Servicios, que representa a estos trabajadores.

Frane señaló que la relación que los cuidadores construyen con sus pacientes puede tardar años en desarrollarse, y que hoy ya es muy complicado encontrar personas que los reemplacen.

En septiembre, la organización LeadingAge hizo un llamado al gobierno federal para que ayudara a la industria a cubrir sus necesidades de personal. Le propuso, entre otras recomendaciones, que aumentara los cupos de visas de inmigración relacionadas con estos trabajos, ampliara el estatus de refugiado a más personas y permitiera que los inmigrantes rindieran los exámenes de certificación profesional en su idioma nativo.

Pero, agregó Smith Sloan, “en este momento no hay mucho interés en nuestro mensaje”.

La Casa Blanca no respondió a las preguntas sobre cómo la administración abordaría la necesidad de aumentar el número de trabajadores en el sector de cuidados a largo plazo.

El vocero Kush Desai declaró que el presidente recibió “un mandato contundente del pueblo estadounidense para hacer cumplir nuestras leyes migratorias y poner a los estadounidenses en primer lugar”, al tiempo que -dijo- continúa con “los avances logrados durante la primera presidencia de Trump para fortalecer al personal del sector salud y hacer que la atención médica sea más accesible”.

En Wisconsin, refugiados trabajan con adultos mayores

Hasta que Trump suspendió el programa de reasentamiento de refugiados, en Wisconsin algunas residencias de adultos mayores se habían asociado con iglesias locales y programas de inserción laboral para contratar trabajadores nacidos en el extranjero, explicó Robin Wolzenburg, vicepresidente senior de LeadingAge Wisconsin.

Muchas de estas personas trabajan en el servicio de comidas y en la limpieza, funciones que liberan a las enfermeras y auxiliares de enfermería para que puedan atender directamente a los pacientes.

Sin embargo, Wolzenburg agregó que muchos inmigrantes están interesados en asumir funciones de atención directa, pero que se emplean en funciones auxiliares porque no hablan inglés con fluidez o no tienen una certificación válida estadounidense.

Wolzenburg contó que, a través de una asociación con el departamento de salud de Wisconsin y las escuelas locales, los hogares de adultos mayores han comenzado a ofrecer formación en inglés, español y hmong para que los trabajadores inmigrantes puedan convertirse en profesionales de atención directa.

Dijo también que el grupo planeaba impartir pronto una capacitación en swahili para las mujeres congoleñas que viven en el estado.

En los últimos dos años y medio, esta colaboración ayudó a los centros de cuidados para personas mayores de Wisconsin a cubrir más de una veintena de puestos de trabajo, dijo.

Sin embargo, Wolzenburg explicó que, por la suspensión de las admisiones de refugiados, las agencias de reasentamiento no están incorporando nuevos candidatos y han puesto una pausa a la incorporación de estos trabajadores.

Muchos inmigrantes mayores o que tienen alguna discapacidad, y a la vez son residentes permanentes, dependen de cuidadores nacidos en el extranjero que hablen su idioma y conozcan sus costumbres.

Frane, del sindicato SEIU, señaló que muchos miembros de la numerosa comunidad chino-estadounidense de San Francisco quieren que sus padres mayores reciban atención en casa, preferiblemente de alguien que hable su mismo idioma.

“Solo en California, tenemos miembros del sindicato que hablan 12 lenguas diferentes, dijo Frane. Esa habilidad se traduce en una calidad de atención y una conexión con los usuarios que será muy difícil de replicar si disminuye la cantidad de cuidadores inmigrantes”.

El ecosistema que depende del trabajo de un cuidador

Las tareas de cuidado son el tipo de trabajo que permite que otros trabajos sean posibles, sostuvo Frane. Sin cuidadores externos, la vida de los pacientes y de sus seres queridos se vuelve más difícil desde el punto de vista logístico y económico.

“Es como sacar el pilar que sostiene todo lo demás: el sistema entero tambalea”, agregó.

Gracias a la atención personalizada de Ortiz, Josephine ha aprendido a comunicar cuando tiene hambre o necesita ayuda. Ahora recoge su ropa y está comenzando a peinarse sola. Como su ansiedad está más controlada, las crisis violentas que antes solían repetirse semana tras semana se han vuelto mucho menos frecuentes, dijo Ortiz.

"Vivimos en el mundo de Josephine", explica Ortiz en español. "Intento ayudarla a encontrar su voz y a expresar sus sentimientos".

Ortiz llegó a Nueva Jersey desde Venezuela en 2022 a través de un programa de Au Pair para conectar trabajadores nacidos en el extranjero con personas mayores o niños con discapacidades que necesitan cuidados en su hogar.

Temerosa de la inestabilidad política y la inseguridad en su país, cuando su visa expiró obtuvo el TPS el año pasado. Quería seguir trabajando en Estados Unidos, y quedarse con Josephine.

Perder a Ortiz sería un golpe devastador para el progreso de Josephine, aseguró Senek. La adolescente no solo se quedaría sin su cuidadora, sino también sin una hermana y su mejor amiga. El impacto emocional sería enorme.

"Nosotros no tenemos ninguna manera de explicarle a Josephine que Alanys está siendo expulsada del país y que no puede volver'", dijo Senek.

No se trata solo de Josephine: Senek y su esposo también dependen de Ortiz para poder trabajar a tiempo completo y cuidar de sí mismos y de su matrimonio. “Ella no es solo una Au Pair”, dijo Senek.

La familia ha contactado a sus representantes en el Congreso en busca de ayuda. Incluso un familiar que votó por Trump le envió una carta al presidente pidiéndole que reconsiderara su decisión.

En el fallo judicial del 31 de marzo, el juez federal Edward Chen escribió que cancelar esta protección podría “ocasionar un daño irreparable a cientos de miles de personas cuyas vidas, familias y medios de subsistencia se verán gravemente afectados”.

“Solo estamos haciendo el trabajo que su propia gente no quiere hacer”

Las noticias sobre redadas migratorias que detienen incluso a inmigrantes con estatus legal y las deportaciones masivas están generando mucho estrés, incluso entre quienes han seguido todas las reglas, comentó Nelly Prieto, de 62 años, quien cuida a un hombre de 88 con Alzheimer y a otro de unos 30 con síndrome de Down en el condado de Yakima, Washington.

Nacida en México, Prieto emigró a Estados Unidos a los 12 años y se convirtió en ciudadana estadounidense en virtud de una ley impulsada por el presidente Ronald Reagan que ofrecía amnistía a cualquier inmigrante que hubiera entrado en el país antes de 1982. Así que ella no está preocupada por sí misma. Pero, dijo, algunos de sus compañeros de trabajo con visados H-2B tienen mucho miedo.

“Me parte el alma verlos cuando me hablan de estas cosas, el miedo en sus rostros”, dijo. “Incluso tienen preparadas cartas firmadas ante un notario diciendo con quién deben quedarse sus hijos, por si algo llega a pasar”.

Los trabajadores de salud a domicilio que nacieron en el extranjero sienten que están contribuyendo con un servicio valioso a la sociedad estadounidense al cuidar de sus miembros más vulnerables, dijo Prieto. Pero sus esfuerzos se ven ensombrecidos por los discursos y las políticas que hacen que los inmigrantes se sientan como si fueran ajenos al país.

“Si no pueden apreciar nuestro trabajo, si no pueden apreciar que cuidemos de sus propios padres, de sus propios abuelos, de sus propios hijos, entonces, ¿qué más quieren?”, dijo. “Solo estamos haciendo el trabajo que su propia gente no quiere hacer”.

En Nueva Jersey, Ortiz contó que su vida no ha sido la misma desde que recibió la noticia de que su permiso bajo el TPS está por terminar. Cada vez que sale a la calle, teme que agentes de inmigración la detengan solo por ser venezolana.

Se ha vuelto mucho más precavida: siempre lleva consigo documentos que prueban que tiene autorización para vivir y trabajar en Estados Unidos.

Ortiz teme terminar en un centro de detención. Aunque Estados Unidos ahora no es un lugar acogedor, consideró que regresar a Venezuela no es una opción segura.

“Puede que yo no signifique nada para alguien que apoya las deportaciones”, dijo Ortiz. “Pero sé que soy importante para tres personas que me necesitan”.

Esta historia fue producida por Kaiser 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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Josephine, 16, has been diagnosed with tetrasomy 8p mosaicism, severe autism, severe obsessive-compulsive disorder, and attention-deficit/hyperactivity disorder, among other conditions, which will require constant assistance and supervision for the rest of her life.

Ortiz, 25, is Josephine’s caregiver. A Venezuelan immigrant, Ortiz helps Josephine eat, bathe, and perform other daily tasks that the teen cannot do alone at her home in West Orange, New Jersey. Over the past 2½ years, Ortiz said, she has developed an instinct for spotting potential triggers before they escalate. She closes doors and peels barcode stickers off apples to ease Josephine’s anxiety.

But Ortiz’s ability to work in the U.S. has been thrown into doubt by the Trump administration, which ordered an end to the temporary protected status program for some Venezuelans on April 7. On March 31, a federal judge paused the order, giving the administration a week to appeal. If the termination goes through, Ortiz would have to leave the country or risk detention and deportation.

“Our family would be gutted beyond belief,” said Krysta Senek, Josephine’s mother, who has been trying to win a reprieve for Ortiz.

Americans depend on many such foreign-born workers to help care for family members who are older, injured, or disabled and cannot care for themselves. Nearly 6 million people receive personal care in a private home or a group home, and about 2 million people use these services in a nursing home or other long-term care institution, according to a Congressional Budget Office analysis.

Increasingly, the workers who provide that care are immigrants such as Ortiz. The foreign-born share of nursing home workers rose three percentage points from 2007 to 2021, to about 18%, according to an analysis of census data by the Baker Institute for Public Policy at Rice University in Houston.

And foreign-born workers make up a high share of other direct care providers. More than 40% of home health aides, 28% of personal care workers, and 21% of nursing assistants were foreign-born in 2022, compared with 18% of workers overall that year, according to Bureau of Labor Statistics data.

That workforce is in jeopardy amid an immigration crackdown President Donald Trump launched on his first day back in office. He signed executive orders that expanded the use of deportations without a court hearing, suspended refugee resettlements, and more recently ended humanitarian parole programs for nationals of Cuba, Haiti, Nicaragua, and Venezuela.

In invoking the Alien Enemies Act to deport Venezuelans and attempting to revoke legal permanent residency for others, the Trump administration has sparked fear that even those who have followed the nation’s immigration rules could be targeted.

“There's just a general anxiety about what this could all mean, even if somebody is here legally,” said Katie Smith Sloan, president of LeadingAge, a nonprofit representing more than 5,000 nursing homes, assisted living facilities, and other services for aging patients. “There's concern about unfair targeting, unfair activity that could just create trauma, even if they don't ultimately end up being deported, and that's disruptive to a health care environment.”

Shutting down pathways for immigrants to work in the United States, Smith Sloan said, also means many other foreign workers may go instead to countries where they are welcomed and needed.

“We are in competition for the same pool of workers,” she said.

Growing Demand as Labor Pool Likely To Shrink

Demand for caregivers is predicted to surge in the U.S. as the youngest baby boomers reach retirement age, with the need for home health and personal care aides projected to grow about 21% over a decade, according to the Bureau of Labor Statistics. Those 820,000 additional positions represent the most of any occupation. The need for nursing assistants and orderlies also is projected to grow, by about 65,000 positions.

Caregiving is often low-paying and physically demanding work that doesn’t attract enough native-born Americans. The median pay ranges from about $34,000 to $38,000 a year, according to the Bureau of Labor Statistics.

Nursing homes, assisted living facilities, and home health agencies have long struggled with high turnover rates and staffing shortages, Smith Sloan said, and they now fear that Trump’s immigration policies will choke off a key source of workers, leaving many older and disabled Americans without someone to help them eat, dress, and perform daily activities.

With the Trump administration reorganizing the Administration for Community Living, which runs programs supporting older adults and people with disabilities, and Congress considering deep cuts to Medicaid, the largest payer for long-term care in the nation, the president’s anti-immigration policies are creating “a perfect storm” for a sector that has not recovered from the covid-19 pandemic, said Leslie Frane, an executive vice president of the Service Employees International Union, which represents nursing facility workers and home health aides.

The relationships caregivers build with their clients can take years to develop, Frane said, and replacements are already hard to find.

In September, LeadingAge called for the federal government to help the industry meet staffing needs by raising caps on work-related immigration visas, expanding refugee status to more people, and allowing immigrants to test for professional licenses in their native language, among other recommendations.

But, Smith Sloan said, “There's not a lot of appetite for our message right now.”

The White House did not respond to questions about how the administration would address the need for workers in long-term care. Spokesperson Kush Desai said the president was given “a resounding mandate from the American people to enforce our immigration laws and put Americans first” while building on the “progress made during the first Trump presidency to bolster our healthcare workforce and increase healthcare affordability.”

Refugees Fill Nursing Home Jobs in Wisconsin

Until Trump suspended the refugee resettlement program, some nursing homes in Wisconsin had partnered with local churches and job placement programs to hire foreign-born workers, said Robin Wolzenburg, a senior vice president for LeadingAge Wisconsin.

Many work in food service and housekeeping, roles that free up nurses and nursing assistants to work directly with patients. Wolzenburg said many immigrants are interested in direct care roles but take on ancillary roles because they cannot speak English fluently or lack U.S. certification.

Through a partnership with the Wisconsin health department and local schools, Wolzenburg said, nursing homes have begun to offer training in English, Spanish, and Hmong for immigrant workers to become direct care professionals. Wolzenburg said the group planned to roll out training in Swahili soon for Congolese women in the state.

Over the past 2½ years, she said, the partnership helped Wisconsin nursing homes fill more than two dozen jobs. Because refugee admissions are suspended, Wolzenburg said, resettlement agencies aren’t taking on new candidates and have paused job placements to nursing homes.

Many older and disabled immigrants who are permanent residents rely on foreign-born caregivers who speak their native language and know their customs. Frane with the SEIU noted that many members of San Francisco’s large Chinese American community want their aging parents to be cared for at home, preferably by someone who can speak the language.

“In California alone, we have members who speak 12 different languages,” Frane said. “That skill translates into a kind of care and connection with consumers that will be very difficult to replicate if the supply of immigrant caregivers is diminished.”

The Ecosystem a Caregiver Supports

Caregiving is the kind of work that makes other work possible, Frane said. Without outside caregivers, the lives of the patient and their loved ones become more difficult logistically and economically.

“Think of it like pulling out a Jenga stick from a Jenga pile, and the thing starts to topple,” she said.

Thanks to the one-on-one care from Ortiz, Josephine has learned to communicate when she’s hungry or needs help. She now picks up her clothes and is learning to do her own hair. With her anxiety more under control, the violent meltdowns that once marked her weeks have become far less frequent, Ortiz said.

“We live in Josephine’s world,” Ortiz said in Spanish. “I try to help her find her voice and communicate her feelings.”

Ortiz moved to New Jersey from Venezuela in 2022 as part of an au pair program that connects foreign-born workers with people who are older or children with disabilities who need a caregiver at home. Fearing political unrest and crime in her home country, she got temporary protected status when her visa expired last year to keep her authorization to work in the United States and stay with Josephine.

Losing Ortiz would upend Josephine’s progress, Senek said. The teen would lose not only a caregiver, but also a sister and her best friend. The emotional impact would be devastating.

“You have no way to explain to her, ‘Oh, Alanys is being kicked out of the country, and she can't come back,’” she said.

It’s not just Josephine: Senek and her husband depend on Ortiz so they can work full-time jobs and take care of themselves and their marriage. “She's not just an au pair,” Senek said.

The family has called its congressional representatives for help. Even a relative who voted for Trump sent a letter to the president asking him to reconsider his decision.

In the March 31 court decision, U.S. District Judge Edward Chen wrote that canceling the protection could “inflict irreparable harm on hundreds of thousands of persons whose lives, families, and livelihoods will be severely disrupted.”

‘Doing the Work That Their Own People Don’t Want To Do’

News of immigration dragnets that sweep up lawfully present immigrants and mass deportations are causing a lot of stress, even for those who have followed the rules, said Nelly Prieto, 62, who cares for an 88-year-old man with Alzheimer’s disease and a man in his 30s with Down syndrome in Yakima County, Washington.

Born in Mexico, she immigrated to the United States at age 12 and became a U.S. citizen under a law authorized by President Ronald Reagan that made any immigrant who entered the country before 1982 eligible for amnesty. So, she’s not worried for herself. But, she said, some of her co-workers working under H-2B visas are very afraid.

“It kills me to see them when they talk to me about things like that, the fear in their faces,” she said. “They even have letters, notarized letters, ready in case something like that happens, saying where their kids can go.”

Foreign-born home health workers feel they are contributing a valuable service to American society by caring for its most vulnerable, Prieto said. But their efforts are overshadowed by rhetoric and policies that make immigrants feel as if they don’t belong.

“If they cannot appreciate our work, if they cannot appreciate us taking care of their own parents, their own grandparents, their own children, then what else do they want?” she said. “We’re only doing the work that their own people don’t want to do.”

In New Jersey, Ortiz said life has not been the same since she received the news that her TPS authorization was slated to end soon. When she walks outside, she fears that immigration agents will detain her just because she’s from Venezuela.

She’s become extra cautious, always carrying proof that she’s authorized to work and live in the U.S.

Ortiz worries that she’ll end up in a detention center. But even if the U.S. now feels less welcoming, she said, going back to Venezuela is not a safe option.

“I might not mean anything to someone who supports deportations,” Ortiz said. “I know I'm important to three people who need me."

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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This story can be republished for free (details).

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

As had been rumored for weeks, Health and Human Services Secretary Robert F. Kennedy Jr. unveiled a plan to reorganize the department. It involves the downsizing of its workforce, which formerly was roughly 80,000 people, by a quarter and consolidating dozens of agencies that were created and authorized by Congress.

Meanwhile, in just the past week, HHS abruptly cut off billions in funding to state and local public health departments, and canceled all research studies into covid-19, as well as diseases that could develop into the next pandemic.

This week’s panelists are Julie Rovner of KFF Health News, Maya Goldman of Axios News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Alice Miranda Ollstein of Politico.

Panelists

Maya Goldman
Axios

@mayagoldman_

Read Maya's stories

Joanne Kenen
Johns Hopkins University and Politico

@JoanneKenen

Read Joanne's stories.

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Among the takeaways from this week’s episode:

• As federal health officials reveal the targets of a significant workforce purge and reorganization, the GOP-controlled Congress has been notably quiet about the Trump administration’s intrusions on its constitutional powers. Many of the administration’s attempts to revoke and reorganize federally funded work are underway despite Congress’ previous approval of that funding. And while changes might be warranted, reviewing how the federal government works (or doesn’t) — in the public forums of congressional hearings and floor debate — is part of Congress’ responsibilities.
• The news of a major reorganization at HHS also comes before the Senate finishes confirming its leadership team. New leaders of the National Institutes of Health and the FDA were confirmed just this week; Mehmet Oz, the nominated director of the Centers for Medicare & Medicaid Services, had not yet been confirmed when HHS made its announcement; and President Donald Trump only recently named a replacement nominee to lead the Centers for Disease Control and Prevention, after withdrawing his first pick.
• While changes early in Trump’s second term have targeted the federal government and workforce, the impacts continue to be felt far outside the nation’s capital. Indeed, cuts to jobs and funding touch every congressional district in the nation. They’re also being felt in research areas that the Trump administration claims as priorities, such as chronic disease: The administration said this week it will shutter the office devoted to studying long covid, a chronic disease that continues to undermine millions of Americans’ health.
• Meanwhile, in the states, doctors in Texas report a rise in cases of children with liver damage due to ingesting too much vitamin A — a supplement pushed by Kennedy in response to the measles outbreak. The governor of West Virginia signed a sweeping ban on food dyes and additives. And a woman in Georgia who experienced a miscarriage was arrested in connection with the improper disposal of fetal remains.

Also this week, Rovner interviews KFF senior vice president Larry Levitt about the 15th anniversary of the signing of the Affordable Care Act and the threats the health law continues to face.

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

Julie Rovner: CNN’s “State Lawmakers Are Looking To Ban Non-Existent ‘Chemtrails.’ It Could Have Real-Life Side Effects,” by Ramishah Maruf and Brandon Miller. 

Alice Miranda Ollstein: The New York Times Wirecutter’s “23andMe Just Filed for Bankruptcy. You Should Delete Your Data Now,” by Max Eddy. 

Maya Goldman: KFF Health News’ “‘I Am Going Through Hell’: Job Loss, Mental Health, and the Fate of Federal Workers,” by Rachana Pradhan and Aneri Pattani. 

Joanne Kenen: The Atlantic’s “America Is Done Pretending About Meat,” by Yasmin Tayag. 

Also mentioned in this week’s podcast:

• The New York Times’ “West Virginia Bans 7 Artificial Food Dyes, Citing Health Concerns,” by Alice Callahan.
• The Washington Post’s “Why I Left My Job Leading Public Health Messaging for the CDC,” by Kevin Griffis.
• Politico’s “The Limits of RFK Jr.’s Power,” by Joanne Kenen.

Click to open the transcript

Transcript: The Ax Falls at HHS

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

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 27, at 10 a.m. As always, news happens fast — really fast this week — and things might well have changed by the time you hear this. So, here we go. 

Today we are joined via videoconference by Alice Miranda Ollstein of Politico. 

Alice Miranda Ollstein: Hello. 

Rovner: Maya Goldman of Axios News. 

Maya Goldman: Great to be here. 

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

Joanne Kenen: Hi everybody. 

Rovner: Later in this episode we’ll have my interview with KFF Senior Vice President Larry Levitt, who will riff on the 15th anniversary of the signing of the Affordable Care Act and what its immediate future might hold. But first, this week’s news. 

So for this second week in a row, we have news breaking literally as we sit down to tape, this time in the form of an announcement from the Department of Health and Human Services with the headline “HHS Announces Transformation to Make America Healthy Again.” The plan calls for 10,000 full-time employees to lose their jobs at HHS, and when combined with early retirement and other reductions, it will reduce the department’s workforce by roughly 25%, from about 82,000 to about 62,000. It calls for creation of a new “Administration for a Healthy America” that will combine a number of existing HHS agencies, including the Health Resources and Services Administration, the Agency for Toxic Substances and Disease Registry, and the National Institute for Occupational Safety and Health under one umbrella. 

Reading through the announcement, a lot of it actually seems to make some sense, as many HHS programs do overlap. But the big overriding question is: Can they really do this? Isn’t this kind of reorganization Congress’ job? 

Ollstein: Congress has not stood up for itself in its power-of-the-purse role so far in the Trump administration. They have stood by, largely, the Republican majorities in the House and Senate, or they’ve offered sort of mild concerns. But they have not said, Hey guys, this is our job, all of these cuts that are happening. There’s talk of a legislative package that would codify the DOGE [Department of Government Efficiency] cuts that are already happening, rubber-stamping it after the fact. But Congress has not made moves to claw back its authority in terms of saying, Hey, we approved this funding, and you can’t just go back and take it. There’s lawsuits to that effect, but not from the members — from outside groups, from labor unions, from impacted folks, but not our dear legislative branch. 

Rovner: You know, Joanne, you were there for a lot of this. We covered the creation of a lot of these agencies. Agency for Healthcare Research and Quality, I covered the creation of its predecessor agency, which there were huge compromises that went into this, lots of policymaking. It just seems that RFK [Robert F. Kennedy] Jr. going to say: We don’t actually care all these things you did. We’re just going to redo the whole thing. 

Kenen: As many of the listeners know, many laws that Congress passes have to be reauthorized every five years or every 10 years. Five is the most typical, and they often don’t get around to it and they extend and blah, blah, blah, blah, blah. But basically the idea is that things do change and things do need to be reevaluated. So, normally when you do reauthorization — we all just got this press release announcing all these mergers of departments and so forth at HHS. None of us are experts in procurement and IT. Maybe those two departments do need to be merged. I mean, I don’t know. That’s the kind of thing that, reauthorization, Congress looks at and Congress thinks about. Well, and agencies and legislation do get updated. Maybe the NIH [National Institutes of Health] doesn’t need 28 institutes and they should have 15 or whatever. But it’s just sort of this, somebody coming in and waving a magic DOGE wand, and Congress is not involved. And there’s not as much public input and expert input as you’d have because Congress holds hearings and listens to people who do have expertise. 

So it’s not just Congress not exercising power to make decisions. It’s also Congress not deliberating and learning. I mean all of us learned health policy partly by listening to experts at congressional panels. We listen to people at Finance, and Energy and Commerce, and so forth. So it’s not just Congress’ voice being silenced. It’s this whole review and fact-based — and experts don’t always agree and Congress makes the final call. But that’s just been short-circuited. And I mean we all know there’s duplication in government, but this isn’t the process we have historically used to address it. 

Rovner: You know, one other thing, I think they’re merging agencies that are in different locations, which on the one hand might make sense. But if you have one central IT or one central procurement agency in Washington or around Washington, you’ve got a lot of these organizations that are outside of Washington. And they’re outside of Washington because members of Congress put them there. A lot of them are in particular places because they were parochial decisions made by Congress. That may or may not make sense, but that’s where they are. It might or might not make sense. Maya, sorry I interrupted you. 

Goldman: No, I was just going to add to Joanne’s point. Julie, I think before we started recording you mentioned that the administration is saying: We’ve thought this all out. These are well-researched decisions. But they’ve been in office for two months. How much research can you really do in that time and how intentional can those decisions really be in that time frame? 

Ollstein: Especially because all of the leaders aren’t even in place yet. Some people were just confirmed, which we’re going to talk about. Some people are on their way to confirmation but not there yet. They haven’t had the chance to talk to career staff, figure out what the redundancies are, figure out what work is currently happening that would be disrupted by various closures and mergers and stuff. So Maya’s exactly right on that. 

Goldman: You know there’s — the administration chose a lead for HRSA and other offices. And so what happens to those positions now? Do they just get demoted effectively because they’re no longer heads of offices? I would be pretty— 

Rovner: But we have a secretary of education whose job is to close the department down, so—. 

Goldman: Good point. 

Rovner: That’s apparently not unprecedented in this administration. Well, as Alice was saying, into this maelstrom of change comes those that President [Donald] Trump has selected to lead these key federal health agencies. The Senate Tuesday night confirmed policy researcher Jay Bhattacharya to head the NIH and Johns Hopkins surgeon and policy analyst Marty Makary to head the Food and Drug Administration. Bhattacharya was approved on a straight party-line vote, while Makary, who I think it’s fair to say was probably the least controversial of the top HHS nominees, won the votes of three Democrats: Minority Whip Dick Durbin of Illinois and New Hampshire’s Democrats, [Sens.] Maggie Hassan and Jeanne Shaheen, along with all of the Republicans. What are any of you watching as these two people take up their new positions? 

Kenen: Well, I mean, the NIH, Bhattacharya — who I hope I’ve learned to pronounce correctly and I apologize if I have not yet mastered it — he’s really always talked about major reorganization, reprioritization. And as I said, maybe it’s time to look at some overlap, and science has changed so much in the last decade or so. I mean are the 28 — I think the number’s 28 — are the 28 current institutes the right— 

Rovner: I think it’s 27. 

Kenen: Twenty-seven. I mean, are there some things that need to be merged or need to be reorganized? Probably. You could make a case for that. But that’s just one thing. The amount of cuts that the administration announced before he got there, and there is a question in some things he’s hinted at, is he going to go for that? His background is in academia, and he does have some understanding of what this money is used for. We’ve talked before, when you talk to a layperson, when you hear the word “overhead,” “indirect costs,” what that conjures up to people as waste, when in fact it’s like paying for the electricity, paying for the staff to comply with the government regulations about ethical research on human beings. It’s not parties. It’s security. It’s cleaning the animal cages. It’s all this stuff. So is he going to cut as deeply as universities have been told to expect? We don’t know yet. And that’s something that every research institution in America is looking at. 

The FDA, he’s a contrarian on certain things but not across the board. I mean, as you just said, Julie, he’s a little less controversial than the others. He is a pancreatic surgeon. He does have a record as a physician. He has never been a regulator, and we don’t know exactly where his contrarian views will be unconventional and where — there’s a lot of agreement with certain things Secretary Kennedy wants to do, not everything. But there is some broad agreement on, some of his food issues do make sense. And the FDA will have a role in that. 

Rovner: I will say that under this reorganization plan the FDA is going to lose 3,500 people, which is a big chunk of its workforce. 

Kenen: Well things like moving SAMHSA [the Substance Abuse and Mental Health Services Administration], which is the agency that works on drug abuse within and drug addiction within HHS, that’s being folded into something else. And that’s been a national priority. The money was voted to help with addiction on a bipartisan basis several times in recent years. The grants to states, that’s all being cut back. The subagency with HHS is being folded into something else. And we don’t know. We know 20,000 jobs are being cut. The 10 announced today and the 10 we already knew about. We don’t know where they’re all coming from and what happens to the expertise and experience addressing something like the addiction crisis and the drug abuse crisis in America, which is not partisan. 

Rovner: All right. Well we’ll get to the cuts in a second. Also on Tuesday, the Senate Finance Committee voted, also along party lines, to advance to the Senate floor the nomination of Dr. Mehmet Oz to head the Centers for Medicare & Medicaid Services. And while he would seem likely to get confirmed by the full Senate, I did not have on my bingo card Dr. Oz’s nomination being more in doubt due to Republicans than Democrats. Did anybody else? 

Ollstein: Based on our reporting, it’s not really in doubt. [Sen.] Josh Hawley has raised concerns about Dr. Oz being too squishy on abortion and trans health care, but it does not seem that other Republicans are really jumping on board with that crusade. It sort of reminds me of concerns that were raised about RFK Jr.’s background on abortion that pretty much just fizzled and Republicans overwhelmingly fell in line. And that seems to be what’s going to happen now. Although you never know. 

Rovner: At least it hasn’t been, as you point out, it hasn’t failed anybody else. Well, the one nominee who did not make it through HHS was former Congressman Dave Weldon to head the CDC [Centers for Disease Control and Prevention]. So now we have a new nominee. It’s actually the acting director, Susan Monarez, who by the way has a long history in federal health programs but no history at the CDC. Who can tell us anything about her? 

Goldman: She seems like a very interesting and in some ways unconventional pick, especially for this administration. She was a career civil servant, and she worked under the Obama administration. And it’s interesting to see them be OK with that, I think. And she also has a lot of health care background but not in CDC. She’s done a lot of work on AI in health care and disaster preparedness, I think. And clearly she’s been leading the CDC for the last couple months. So she knows to that extent. But it will be very interesting when she gets around to confirmation hearings to hear what her priorities are, because we really have no idea. 

Rovner: Yeah, she’s not one of those good-on-Fox News people that we’ve seen so many of in this administration. So while Monarez’s nomination seems fairly noncontroversial, at least so far, the nominee to be the new HHS inspector general is definitely not. Remember that President Trump fired HHS IG Christi Grimm just days after he took office, along with the IGs of several other departments. Grimm is still suing to get her job back, since that firing violated the terms of the 1978 Inspector General Act. But now the administration wants to replace her with Thomas Bell, who’s had a number of partisan Republican jobs for what’s traditionally been a very nonpartisan position and who was fired by the state of Virginia in 1997 for apparently mishandling state taxpayer funds. That feels like it might raise some eyebrows as somebody who’s supposed to be in charge of waste, fraud, and abuse. Or am I being naive? 

Goldman: My eyebrows were definitely raised when I saw that news. I, to be honest, don’t know very much about him but will be very interested to see how things go, especially given that fraud, waste, and abuse and rooting out fraud, waste, and abuse are high priorities for this administration, but also things that are very up to interpretation in a certain way. 

Ollstein: Yes, although it’s clearly been very mixed on that front because the administration is also dismantling entire agencies that go after fraud and abuse— 

Goldman: Exactly. 

Ollstein: —like the Consumer Financial Protection Bureau. So there is some mixed messaging on that front for sure. 

Rovner: Well, as Joanne mentioned, the DOGE cuts continue at the NIH. In just the last week, billions of dollars in grants have been terminated that were being used to study AIDS and HIV, covid and other potential pandemic viruses, and climate change, among other things. The NIH also closed its office studying long covid. Thank you, Alice, for writing that story. This is, I repeat, not normal. NIH only generally cancels grants that have been peer reviewed and approved for reasons of fraud or scientific misconduct, yet one termination letter obtained by Science Magazine simply stated, quote, “The end of the pandemic provides cause to terminate COVID-related grant funds.” Why aren’t we hearing more about this, particularly for members of Congress whose universities are the ones that are being cut? 

Kenen: I mean, the one Republican we heard at the very beginning was [Sen.] Katie Britt because the University of Alabama is a big, excellent, and well-respected national medical and science center, and they were targeted for a lot of cuts. She’s the only Republican, really, and she got quiet. I mean, she raised her voice very loud and clear. We may go into a situation — and everybody sort of knows this is how Washington sometimes works — where individual universities will end up negotiating with NIH over their funds and that— 

Rovner: Columbia. Cough, cough. 

Kenen: Right. And Alabama may come out great and Columbia might not, or many other leading research institutions. But these job cuts affect people in every congressional district across the country. And the funding cuts affect every congressional district across the country. So it’s not just their constitutional responsibilities. It’s also, like, their constituents are affected, and we’re not hearing it. 

Rovner: And as I point out for the millionth time, it’s not a coincidence that these things are located in every congressional district. Members of Congress, if not the ones who are currently in office then their predecessors, lobbied and worked to get these funds to their states and to their district. And yet the silence is deafening. 

Ollstein: To state the obvious, one, covid is not over. People are still contracting it. People are still dying from it. But not only that, a lot of this research was about preparing for the inevitable next pandemic that we know is coming at some point and to not be caught as unawares as we were this past time, to be more prepared, to have better tools so that there don’t have to be widespread lockdowns, things can remain open because we have more effective prevention and treatment efforts. And that’s what’s being defunded here. 

Kenen: The other thing is that long covid is in fact a chronic disease and even though it’s caused by an infectious disease, a virus. But people have long covid but it is a chronic disease, and HHS says that’s their priority, chronic disease, but they’re not including long covid. And there’s also more and more. When we think of long covid, we think of brain fog and being short of breath and tired and unable to function. There’s increasing evidence or conversation in the medical world about other problems people have long-term that probably stem from covid infections or multiple covid infections. So this is affecting millions of Americans as a chronic disease that is not well understood, and we’ve just basically said, That one doesn’t count, or: We’re not going to pay attention to that one. We’re going to, you know, we’re looking at diabetes. Yeah, we need to look at diabetes. That’s one of the things that Kennedy has bipartisan support. This country does not eat well. I wrote about this about a week ago. But what he can and can’t do, because he can’t wave a magic wand and have us all eating well. But it’s very selective in how we’re defining both the causes of diseases and what diseases we’re prioritizing. We basically just shrunk addiction. 

Goldman: In the press release announcing the reorganization this morning, there was a line talking about how the HHS is going to create this new Administration for a Healthy America to investigate chronic disease and to make sure that we have, I think it was, wholesome food, clean water, and no environmental toxins, in order to prevent chronic disease. And those are the only three things that it mentions that lead to chronic disease. 

Rovner: And none of which are under HHS’ purview. 

Goldman: Right, right. Yeah. 

Rovner: With the exception of— 

Goldman: There are things that HHS does in that space. But yeah, we’re being very selective about what constitutes a chronic disease and what causes a chronic disease. If you’re trying to actually solve a problem, maybe you should be more expansive. 

Kenen: So HHS has some authority over food, not significant authority of it, but it is shared with the USDA [U.S. Department of Agriculture]. Like school lunches are USDA, the nutritional guidelines are shared between USDA and HHS, things like that. So yeah, it has some control about, over food but not entirely control over food. 

And then EPA [Environmental Protection Agency], which has also been completely reoriented to be a pro-fossil-fuel agency, is in charge of clean water and the environmental contaminants. That’s not an HHS bailiwick. And Kennedy is not aligned with other elements of the administration on environmental issues. And also genetics, right? Genetics is also, you know, who knows? That’s NIH? But who knows what’s going to happen to the National Cancer Institute and other genetic research at NIH? We don’t know. 

Rovner: Yes. Clearly much to be determined. Well, speaking of members of Congress whose states and districts are losing federal funds, federal aid is also being cut by the CDC. In a story first reported by NBC News, CDC is reportedly clawing back more than $11 billion in covid-related grants. Among other things, that’s impacting funding that was being used in Texas to fight the ongoing measles outbreak. How exactly does clawing back this money from state and local public health agencies make America healthy again? 

Goldman: That’s a great question, and I’m curious to see how it plays out. I don’t have the answer. 

Rovner: And it’s not just domestic spending. The fate of PEPFAR [the President’s Emergency Plan for AIDS Relief], the international AIDS/HIV program that’s credited with saving more than 20 million lives, remains in question. And The New York Times has gotten hold of a spreadsheet including more global health cuts, including those for projects to fight malaria and to pull the U.S. out of Gavi. That’s the global vaccine alliance that’s helped vaccinate more than 1.1 billion children in 78 countries. Wasn’t there a court order stopping all of these cuts? 

Ollstein: So there was for some USAID [U.S. Agency for International Development] work, but not all of these things fall under that umbrella. And that is still an ongoing saga that has flipped back and forth depending on various rulings. But I think it’s worth pointing out, as always, that infectious diseases don’t respect international borders, and any pullback on efforts to fight various things abroad inevitably will impact Americans as well. 

Rovner: Yeah. I mean, we’ve seen these measles cases obviously in Texas, but now we’re getting measles cases in other parts of the country, and many of them are people coming from other countries. We had somebody come through Washington, D.C.’s Union Station with measles, and we’ve had all of these alerts. I mean, this is what happens when you don’t try and work with infectious diseases where they are, then they spread. That’s kind of the nature of infectious disease. 

Well, at the same time, HHS Secretary RFK Jr. is putting his Make America Healthy Again agenda into practice in smaller ways as well. First up, remember that study that Kennedy promised again to look into any links between childhood vaccines and autism? It will reportedly be led by a vaccine skeptic who was disciplined by the Maryland Board of Physicians for practicing medicine without a license and who has pushed the repeatedly debunked assertion that autism can be caused by the preservative thimerosal, which used to be used in childhood vaccines but has long since been discontinued. One autism group referred to the person who’s going to be running this study as, quote, “a known conspiracy theorist and quack.” Sen. [Bill] Cassidy seemed to promise us that this wasn’t going to happen. 

Kenen: Well, we think that Sen. Cassidy was promised it wouldn’t happen, and it’s all happening. And in fact, when a recent hearing, he was very outspoken that there’s no need to research the autism link, because it’s been researched over and over and over and over and over again and there’s a lot of reputable scientific evidence establishing that vaccination does not cause autism. We don’t know what causes autism, so— 

Rovner: But we know it’s not thimerosal. 

Kenen: Right, which has been removed from many vaccines, in fact, and autism rates went up. So Cassidy has not come out and said, Yeah, I’m the guy who pulled the plug on Weldon. But it’s sort of obvious that he had, at least was, a role in. It is widely understood in Washington that he and a few other Republicans, [Sens. Lisa] Murkowski and [Susan] Collins, I believe — I think Murkowski said it in public — said that the CDC could not go down that route. 

Rovner: Well, I would like to be inadvertently invited to the Signal chat between Secretary Kennedy and Sen. Cassidy. I would very much wish to see that conversation. 

Meanwhile, in Texas, where HHS just confiscated public health funding, as we said, a hospital in Lubbock says it’s now treating children with liver damage from too much vitamin A, which Secretary Kennedy recommended as a way to prevent and or treat measles. Which it doesn’t, by the way. But that points to, that some of these — I hesitate of how to describe these people who are “making America healthy again.” But some of the things that they point to can be actively dangerous, not just not helpful. 

Goldman: Yeah. And I think it also shows how much messaging from the top matters, right? People are listening to what Secretary Kennedy says, which makes sense because he’s the secretary of health and human services. But if he’s pedaling misinformation or disinformation, that can have real harmful effects on people. 

Kenen: And his messages are being amplified even if some people are not, their parents, who aren’t maybe directly tuned in to what Kennedy personally is saying, but they follow various influencers on health who are then echoing what Kennedy’s saying about vitamin A. Yeah, we all need vitamin A in our diet. It’s something, part of healthy nutrition. But this supplement’s unnecessary, or excess supplements, vitamin A or cod liver oil or other things that can make them sick, including liver damage. And that’s what we’re seeing now. Vitamin A does have a place in measles under very specific circumstances, under medical supervision in individual cases. But no, people should not be going to the drugstore and pouring huge numbers of tablets of vitamin C down their children’s throat. It’s dangerous. 

Rovner: And actually the head of communications at the CDC not only quit his job this week but wrote a rather impassioned op-ed in The Washington Post, which I will post in our show notes, talking about he feels like he cannot work for an agency that is not giving advice that is based in science and that that’s what he feels right now. Again, that’s before we get a new head of the CDC. Well, MAHA is apparently spreading to the states as well. West Virginia Republican Gov. Patrick Morrisey this week signed a bill to ban most artificial food coloring and two preservatives in all foods sold in the state starting in 2028. Nearly half the rest of the states are considering similar types of bans. But unless most of those other states follow, companies aren’t going to remake their products just for West Virginia, right? 

Kenen: West Virginia is not big enough, but they sometimes do remake their products for California, which is big. The whole food additive issue is, traditionally the food manufacturers have had a lot of control over deciding what’s safe. It’s the industry that has decided. Kennedy has some support across the board and saying that’s too loose and we should look at some of these additives that have not been examined. There are others, including some preservatives, that have been studied and that are safe. Some preservatives have not been studied and should be studied. There are others that have been studied and are safe and they keep food from going rotten or they can prevent foodborne disease outbreaks. Something that does make our food healthy, we probably want to keep them in there. So, and are there some that— 

Rovner: I think people get mixed up between the dyes and the preservatives. Dyes are just to make things look more attractive. The preservatives were put there for a reason. 

Kenen: Right. And there’s some healthy ways of making dyes, too, if you need your food to be red. There’s berry abstracts instead of chemical extracts. So things get overly simplified in a way that does not end up necessarily promoting health across the board. 

Rovner: Well, not all of the news is coming from the Trump administration. The Supreme Court next week will hear a case out of South Carolina about whether Medicaid recipients can sue to enforce their right to get care from any qualified health care providers. But this is really another case about Planned Parenthood, right, Alice? 

Ollstein: Yep. If South Carolina gets the green light to kick Planned Parenthood out of its Medicaid program, which is really what is at the heart of this case, even though it’s sort of about whether beneficiaries can sue if their rights are denied. A right isn’t a right if you can’t enforce it, so it’s expected that a ruling in that direction would cause a stampede of other conservative states to do the same, to exclude Planned Parenthood from their Medicaid programs. Many have tried already, and that’s gone around and around in the courts for a while, and so this is really the big showdown at the high court to really decide this. 

And as I’ve been writing about, this is just one of many prongs of the right’s bigger strategy to defund Planned Parenthood. So there are efforts at the federal level. There are efforts at the state level. There are efforts in the courts. They are pushing executive actions on that front. We can talk. There was some news on Title X this week. 

Rovner: That was my next question. Go ahead. 

Ollstein: Some potential news. 

Rovner: What’s happening with Title X? 

Ollstein: Yeah. So HHS told us when we inquired that nothing’s final yet, but they’re reviewing tens of millions of Title X federal family planning grants that currently go to some Planned Parenthood affiliates to provide subsidized contraception, STI [sexually transmitted infection] screenings, various non-abortion services. And so they are reviewing those grants now. They are supposed to be going out next week, so we’ll have to see what happens there. There was some sort of back-and-forth in the reporting about whether they’re going to be cut or not. 

Rovner: What surprises me about the Title X grant, and there has been, there have been efforts, as you point out, going back to the 1980s to kick Planned Parenthood out of the Title X program. That’s separate from kicking Planned Parenthood out of Medicaid, which is where Planned Parenthood gets a lot more money. 

But the first Trump administration did kick Planned Parenthood out of Title X, and they went through the regulatory process to do it. And then the Biden administration went through the regulatory process to rescind the Trump administration regulations that kicked them out. Now it looks like the Trump administration thinks that it can just stop it without going through the regulatory process, right? 

Ollstein: That’s right. So not only are they going around Congress, which approves Title X funding every year, they are also going around their own rulemaking and just going for it. Although, again, it has not been finally announced whether or not there will be cuts. They’re just reviewing these grants. 

Rovner: But I repeat for those in the back, this is not normal. It’s not how these things are supposed to work it. 

Kenen: It’s normal now, Julie. 

Rovner: Yeah, clearly it’s becoming normal. Well, finally this week, another case of a woman arrested for a poor pregnancy outcome. This happened in Georgia where the woman suffered a natural miscarriage, not an abortion, which was confirmed by the medical examiner, but has been arrested on charges of improperly disposing of the fetal remains. Alice, this is turning into a trend, right? 

Ollstein: Yes. And it’s important for people to remember that this was happening before Dobbs. This was happening when Roe v. Wade was still in place. This has happened since then in states where abortion is legal. Some prosecutors are finding other ways to charge people. Whether it’s related to, yeah, the disposal of the fetus, whether it’s related to substance abuse, substance use during pregnancy, even sometimes the use of substances that are actually legal, but people have been charged, arrested for using them during pregnancy. So yes, it’s important to remember that even if there’s not a quote-unquote “abortion ban” on the books, there are still efforts underway in many places to criminalize pregnancy loss however it happens, naturally or via some abortifacient method. 

Rovner: Well, something else we’ll be keeping an eye on. All right, that’s as much news as we have time for this week. Now, we will play my interview with KFF’s Larry Levitt. Then we’ll come back and do our extra credits. 

So, last Sunday was the 15th anniversary of President Barack Obama’s signing of the original Affordable Care Act. And before you ask, yes, I was there in the White House East Room that day. Anyway, to discuss what the law has meant to the U.S. health system over the last decade and a half and what its future might be, I am so pleased to welcome back to the podcast my KFF colleague Larry Levitt, executive vice president for health policy. 

Larry, thanks for joining us again. 

Larry Levitt: Oh, thanks for having me. 

Rovner: So, [then-House Speaker] Nancy Pelosi was mercilessly derided when she said that once the American people learned exactly what was in the ACA, they would come to like it. But that’s exactly what’s happened, right? 

Levitt: It is. Yes. I think people took her comments so out of context, but the ACA was incredibly controversial and divisive when it was being debated. Frankly, after a pass, the ACA became pretty unpopular. If you go back to 2014, just before the main provisions of the ACA were being implemented, there was all this controversy over the individual mandate, over people’s plans being canceled because they didn’t comply with the ACA’s rules. And then, of course, healthcare.gov, the website, didn’t work. So the ACA was very underwater in public opinion. And even after it first went into effect and people started getting coverage, that didn’t necessarily turn around immediately, there was still a lot of divisiveness over the law. 

What changed is, No. 1, over time, more and more people got covered, people with preexisting conditions, people who couldn’t afford health insurance, people who turned 26 or could stay on their parents’ plans until 26 and then could enroll in the ACA or Medicaid after turning 26. All these people got coverage and started to see the benefits of the law. The other thing that happened was in 2017, Republicans tried unsuccessfully to repeal and replace the ACA, and people really realized what they could be missing if the law went away. 

Rovner: So what’s turned out to be the biggest change to the health care system as a result of the ACA? And is it what you originally thought it would be? 

Levitt: Well, yeah, in this case it was not a surprise, I think. The biggest change was the number of people getting covered and a big decrease in the number of people uninsured. We have been at the lowest rate of uninsurance ever recently due to the ACA and some of the enhancements, which we’ll probably talk about. And that was what the law was intended to do, was to get more people covered. And I think you’d have to call that a success, in retrospect. 

Rovner: I will say I was surprised by how much Medicaid dominated the increased coverage. I know now it’s sort of balanced out because of reductions in premiums for private coverage, I think in large part. But I think during the 2017 fight to undo the ACA, that was the first time since I’ve been covering Medicaid that I think people really realized how big and how important Medicaid is to the health care system. 

Levitt: No, that’s right. I mean the ACA marketplace, healthcare.gov, the individual mandate, preexisting condition protections, I mean, those are the things that got a lot of the public attention. But in fact, yeah, in the early years of the ACA, I mean really up until just the last couple years, the Medicaid expansion in the ACA was really the engine of coverage. And that’s not what a lot of people expected. In fact, Congressional Budget Office in their original projections kind of got that wrong, too. 

Rovner: So what was the biggest disappointment about something the ACA was supposed to do but didn’t do or didn’t do very well? 

Levitt: Yeah, I mean, I would have to point to health care costs as the biggest disappointment. The ACA really wasn’t intended to address health care costs head-on. And that was both a policy judgment but also a political decision. If you go back to the debate over the Clinton health plan in the early ’90s, which failed spectacularly — you and I were both there — it addressed health care costs aggressively, took on every segment of the health care industry, and died under that political weight. The political judgment of Obama and Democrats in Congress with the ACA was to not take on those vested health care interests and not really address health care costs head-on. That’s what enabled it to get passed. But it sort of lacked teeth in that regard. There were some things in the ACA like expansion of ACOs, accountable care organizations, which maybe had some promise but frankly have not done a whole lot. 

Rovner: And of course, Congress undoing what teeth there were in the ensuing years probably didn’t help very much, either. 

Levitt: No. I mean there was this provision in the ACA called the Cadillac plan tax, right? The idea was to tax so-called Cadillac health plans, very generous health plans. That probably would’ve had an effect. I’m not sure it would’ve done what people intended for it to do. I mean, I think it would’ve actually shifted costs to workers and caused deductibles to rise even higher. But no one but economists liked that Cadillac plan tax, and it was repealed. 

Rovner: So, as you mentioned, you and I are both also veterans of the 1993, 1994 failed effort by President Bill Clinton to overhaul the nation’s health care system, which, like the fight over the ACA, featured large-scale, deliberate mis- and disinformation by opponents about what a major piece of health legislation could do. In fact, and I have done lots of stories on this, scare tactics about the possible impact of providing universal health insurance coverage date back to the early 1900s and have been a feature of every single major health care debate since then. What did we learn from the ACA debate about combating this kind of deliberate misinformation? 

Levitt: Yeah, you’re so right about the disinformation, and I was actually looking yesterday — we have a timeline of health policy over the decades in our KFF headquarters in San Francisco, and we have an ad up there from the debate over the Truman health plan. You and I were not there for that debate. 

Rovner: Thank you. 

Levitt: And the AMA [American Medical Association] opposed that as socialized medicine and ran these ads featuring robots who were going to be your doctor if the Truman plan passed. So this is certainly nothing new. And we saw it in the ACA with death panels, right? I mean, which just spread like wildfire through the media and over social media. I would kind of hope we learned some lessons from the ACA. I’m not sure we have. And I kind of worry that with declining trust in institutions, particularly government institutions, I just wonder whether we’ll get back to a place where, yeah, we’ll disagree about policy. There will be spin, there will be scare tactics, but at least there’s some trusted source of facts and data that we can rely on, and I’m not so hopeful there. 

Rovner: Somebody asked former [HHS] Secretary Kathleen Sebelius at a 15th-anniversary event what she regretted most about not having in the ACA, and she said, With all the talk of our actually taking over the health care system, we should have just taken over the health care system, since that’s what everybody was accusing it of. It might’ve worked better. 

Levitt: Yeah, there is — we could have a whole other session on “Medicare for All” and single payer and the pros and cons of that. But one thing I think we did learn from the ACA, that complexity is just a huge problem. Even what’s supposed to be the simplest part of our health care system now, Medicare, has become incredibly complex with Part A and Part B and Part C and Part D. Seniors kind of scratch their heads trying to figure out what to do, and the ACA even more so. 

And I think back to your original question, part of what made the ACA so hard for people to grasp is there was not one single, Oh, I’m going to sign up for the ACA. There were so many pieces of it. And over time, I’m not even sure people identify those pieces with the ACA anymore. 

Rovner: Yeah. Oh, no, I am surprised at how many younger people have no idea of what the insurance market was like before the ACA and how many people were simply redlined out of getting coverage. 

Levitt: Right. No. I mean, once you fix those problems, then people don’t see them anymore. 

Rovner: So let’s look forward quickly. It seemed at least for a while after the Republicans failed in 2017 to repeal and replace the law that efforts to undo it were finally over. But while this administration isn’t saying directly that they want to end it, they do have some big targets for undoing big pieces of it. What are some of those and what are the likelihood of them happening? 

Levitt: Yeah, in some ways we have an ACA repeal-and-replace debate going on right now, just not in name. And there are really kind of two big pieces on the table. One, of course, is potential cuts to Medicaid. The House has passed a budget resolution calling for $880 billion in cuts, by the Energy and Commerce Committee, which has jurisdiction over Medicaid. The vast majority of those cuts would have to be in Medicaid. The math is simply inescapable. And a big target on the table is that expansion of Medicaid that was in the ACA. 

And interestingly, you’re even hearing Republicans on the Hill talking about repealing the enhanced federal matching payments for the ACA Medicaid expansion and saying: Well, that’s not Medicaid cuts. That’s Obamacare. That’s not Medicaid. But 20 million people are covered under that Medicaid expansion. So it would lead to the biggest increase in the number of people uninsured we’ve ever had, if that gets repealed. 

The other issue really has not gotten a lot of attention yet this year, which is the extra premium assistance that was passed under [President Joe] Biden and by Democrats in Congress. And that’s led to a dramatic increase in ACA marketplace enrollment. ACA enrollment has more than doubled to 24 million since 2020. Those subsidies expire at the end of this year. So if Congress does nothing, people would be faced with very big out-of-pocket premium increases. And I suspect it’s going to get more attention as we get closer to the end of the year, but so far there hasn’t been a big debate over it yet. 

Rovner: Well, we’ll continue to talk about it. Larry Levitt, thank you so much. 

Levitt: Oh, thanks. Great conversation. 

Rovner: OK, we’re back. Now it’s time for our extra-credit segment. That’s where we each recognize the story we read this week we think you should read, too. Don’t worry if you miss it. We will put the links in our show notes on your phone or other mobile device. Joanne, why don’t you go first this week? 

Kenen: There’s a piece in The Atlantic this week called “America Is Done Pretending About Meat,” by Yasmin Tayag, and it’s basically saying that half of the people who said they were vegan or vegetarian were lying and that meat is very much back in fashion. That the new pejorative term — some of us may remember from 20 years or so ago, the “quiche eaters” —now it’s the “soy boy.” And that one of the new “in” foods, and I think this is the first for the podcast to use the phrase, raw beef testicles. So when we’re talking about political red meat, it’s not just political red meat. America is, we’re eating a lot more meat than we said we did, and we’re no longer saying that we’re not eating it. 

Rovner: Real red meat for the masses. 

Ollstein: For what it’s worth, “soy boy” has been a slur since the Obama administration. 

Kenen: Well, it’s just new to me. Thank you. I welcome the— 

Ollstein: I unfortunately have been in the online fever swamps where people say things like that. 

Kenen: Thank you, Alice. Now I know. 

Rovner: Maya, why don’t you go next? 

Goldman: My extra credit is a KFF Health News article by Rachana Pradhan and Aneri Pattani called “‘I Am Going Through Hell’: Job Loss, Mental Health, and the Fate of Federal Workers.” And I think it’s just worth remembering that there are real consequences, real mental health consequences to mass upheaval at the scale of what’s going on in the federal government right now with so many people losing their jobs and just not sure if their jobs are stable, especially in light of this morning’s news about HHS reorganizations. But also I think this article does a really good job of highlighting how this chaos and instability is only going to exacerbate already ongoing mental health crises that some of these workers that have been laid off were trying to help solve. And so it’s just this cycle that keeps running through. It’s worth remembering. 

Rovner: The chaos is the point. Alice. 

Ollstein: So, I have a piece from the New York Times Wirecutter section called “23andMe Just Filed for Bankruptcy. You Should Delete Your Data Now.” And it’s what it says. The company that millions and millions of people have sent samples of their DNA to over the years to find out what percent European they are and all this stuff and their propensity for various inherited diseases, that company is going bankrupt, and there is the expectation that it will be sold off for parts, including people’s very sensitive DNA. And the article points out that because they are not a health care provider, they are not subject to HIPAA [Health Insurance Portability and Accountability Act]. And so many elected officials and privacy advocates are recommending that people, very quickly, if they have given their DNA to this company, go and delete their information now before it gets sold off to who knows who. 

Rovner: And for who knows what reason. My extra credit this week is something I really did think at first was from The Onion. It’s actually from CNN, and it’s called “State Lawmakers Are Looking to Ban Non-Existent ‘Chemtrails.’ It Could Have Real-Life Side Effects,” by Ramishah Maruf and Brandon Miller, who’s a CNN meteorologist. It seems that several states are moving to ban those white lines the jets leave behind them, on the theory that they are full of toxic chemicals and/or intended to manipulate the weather. In fact, they’re mostly just water vapor. They’re called contrails because the con is for condensation. But these laws could outlaw some new types of technologies that are aimed at addressing things like climate change. Clearly we need to teach more science along with more civics. 

OK, that is this week’s 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 producer, Francis Ying, and our editor, Emmarie Huetteman. As always, you could email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner, and at Bluesky, @julierovner. Where are you folks hanging these days? Maya? 

Goldman: I am on X and Bluesky. If you search Maya Goldman, you’ll find me. And also increasingly on LinkedIn. Find me there. 

Rovner: Hearing that a lot. Alice. 

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

Rovner: Joanne. 

Kenen: I’m mostly at Bluesky, and I’m also using LinkedIn a lot. @joannekenen at Bluesky. LinkedIn is reverberating more. 

Rovner: All right, we’ll be back in your feed next week with still more breaking news. Until then, be healthy. 

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Y ven a la vicepresidenta y candidata demócrata como la mejor esperanza para preservar el acceso de los estadounidenses a seguros de salud. La cobertura integral que limita los costos directos de los pacientes es la mejor defensa contra el endeudamiento, dicen los expertos.

La administración Biden ha ampliado las protecciones financieras para los pacientes, incluyendo una propuesta histórica de la Oficina de Protección Financiera del Consumidor (CFPB) para eliminar la deuda médica de los informes de crédito de los consumidores.

En 2022, el presidente Joe Biden también firmó la Ley de Reducción de la Inflación, que limita cuánto deben pagar los afiliados de Medicare por medicamentos recetados, incluyendo un tope de $35 al mes para la insulina. Y en legislaturas de todo el país, demócratas y republicanos han trabajado juntos de manera discreta para promulgar leyes que frenen a los cobradores de deudas.

Sin embargo, defensores dicen que el gobierno federal podría hacer más para abordar un problema que afecta a 100 millones de estadounidenses, obligando a muchos a trabajar más, perder sus hogares y reducir el gasto en alimentos y otros artículos esenciales.

“Biden y Harris han hecho más para abordar la crisis de deuda médica en este país que cualquier otra administración”, dijo Mona Shah, directora senior de política y estrategia en Community Catalyst, una organización sin fines de lucro que ha liderado los esfuerzos nacionales para fortalecer las protecciones contra la deuda médica. “Pero hay más por hacer y debe ser una prioridad para el próximo Congreso y administración”.

Al mismo tiempo, los defensores de los pacientes temen que si el ex presidente Donald Trump gana un segundo mandato, debilitará las protecciones de los seguros permitiendo que los estados recorten sus programas de Medicaid o reduciendo la ayuda federal para que los estadounidenses compren cobertura médica. Eso pondría a millones de personas en mayor riesgo de endeudarse si enferman.

En su primer mandato, Trump y los republicanos del Congreso intentaron en 2017 derogar la Ley de Cuidado de Salud a Bajo Precio (ACA), un movimiento que, según analistas independientes, habría despojado de cobertura médica a millones de estadounidenses y habría aumentado los costos para las personas con afecciones preexistentes, como diabetes y cáncer.

Trump y sus aliados del Partido Republicano continúan atacando a ACA, y el ex presidente ha dicho que quiere revertir la Ley de Reducción de la Inflación, que también incluye ayuda para que los estadounidenses de bajos y medianos ingresos compren seguros de salud.

“Las personas enfrentarán una ola de deuda médica por pagar primas y precios de medicamentos recetados”, dijo Anthony Wright, director ejecutivo de Families USA, un grupo de consumidores que ha apoyado las protecciones federales de salud. “Los pacientes y el público deberían estar preocupados”.

La campaña de Trump no respondió a consultas sobre su agenda de salud. Y el ex presidente no suele hablar de atención médica o deuda médica en la campaña, aunque dijo en el debate del mes pasado que tenía “conceptos de un plan” para mejorar la ACA. Trump no ha ofrecido detalles.

Harris ha prometido repetidamente proteger ACA y renovar los subsidios ampliados para las primas mensuales del seguro creados por la Ley de Reducción de la Inflación. Esa ayuda está programada para expirar el próximo año.

La vicepresidenta también ha expresado su apoyo a un mayor gasto gubernamental para comprar y cancelar deudas médicas antiguas de los pacientes. En los últimos años, varios estados y ciudades han comprado deuda médica en nombre de sus residentes.

Estos esfuerzos han aliviado la deuda de cientos de miles de personas, aunque muchos defensores dicen que cancelar deudas antiguas es, en el mejor de los casos, una solución a corto plazo, ya que los pacientes seguirán acumulando facturas que no pueden pagar sin una acción más sustantiva.

“Es un bote con un agujero”, dijo Katie Berge, una cabildera de la Sociedad de Leucemia y Linfoma. Este grupo de pacientes fue una de más de 50 organizaciones que el año pasado enviaron cartas a la administración Biden instando a las agencias federales a tomar medidas más agresivas para proteger a los estadounidenses de la deuda médica.

“La deuda médica ya no es un problema de nicho”, dijo Kirsten Sloan, quien trabaja en política federal para la Red de Acción contra el Cáncer de la Sociedad Americana de Cáncer. “Es clave para el bienestar económico de millones de estadounidenses”.

La Oficina de Protección Financiera del Consumidor está desarrollando regulaciones que prohibirían que las facturas médicas aparezcan en los informes de crédito de los consumidores, lo que mejoraría los puntajes crediticios y facilitaría que millones de estadounidenses alquilen una vivienda, consigan un trabajo o consigan un préstamo para un automóvil.

Harris, quien ha calificado la deuda médica como “crítica para la salud financiera y el bienestar de millones de estadounidenses”, apoyó con entusiasmo la propuesta de regulación. “No se debería privar a nadie del acceso a oportunidades económicas simplemente porque experimentó una emergencia médica”, dijo en junio.

El compañero de fórmula de Harris, el gobernador de Minnesota, Tim Walz, quien ha dicho que su propia familia luchó con la deuda médica cuando era joven, firmó en junio una ley estatal que reprime el cobro de deudas.

Los funcionarios de la CFPB dijeron que las regulaciones se finalizarán a principios del próximo año. Trump no ha indicado si seguiría adelante con las protecciones contra la deuda médica. En su primer mandato, la CFPB hizo poco para abordarla, y los republicanos en el Congreso han criticado durante mucho tiempo a la agencia reguladora.

Si Harris gana, muchos grupos de consumidores quieren que la CFPB refuerce aún más las medidas, incluyendo una mayor supervisión de las tarjetas de crédito médicas y otros productos financieros que los hospitales y otros proveedores médicos han comenzado a ofrecer a los pacientes. Por estos préstamos, las personas están obligadas a pagar intereses adicionales sobre su deuda médica.

“Estamos viendo una variedad de nuevos productos financieros médicos”, dijo April Kuehnhoff, abogada senior del Centro Nacional de Derecho del Consumidor. “Estos pueden generar nuevas preocupaciones sobre las protecciones al consumidor, y es fundamental que la CFPB y otros reguladores supervisen a estas empresas”.

Algunos defensores quieren que otras agencias federales también se involucren.

Esto incluye al enorme Departamento de Salud y Servicios Humanos (HHS), que controla cientos de miles de millones de dólares a través de los programas de Medicare y Medicaid. Ese dinero otorga al gobierno federal una enorme influencia sobre los hospitales y otros proveedores médicos.

Hasta ahora, la administración Biden no ha utilizado esa influencia para abordar la deuda médica.

Pero en un posible anticipo de futuras acciones, los líderes estatales en Carolina del Norte recientemente obtuvieron la aprobación federal para una iniciativa de deuda médica que obligará a los hospitales a tomar medidas para aliviar las deudas de los pacientes a cambio de ayuda gubernamental. Harris elogió la iniciativa.

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They showed that in 2023, for example, there were four active tuberculosis cases in Clark County, which includes Springfield, up from three in 2022. HIV cases had risen, but sexually transmitted illnesses overall were decreasing.

“I wouldn’t call it skyrocketing,” said Cook, noting that there were 190 active cases in 2023 in all of Ohio. “You hear the rhetoric. But as a whole, reportable infectious diseases to the health department are decreasing.”

Tensions are running high in this industrial town of about 58,000 people. Bomb threats closed schools and public buildings after GOP presidential nominee Donald Trump falsely claimed that Haitian immigrants — who he alleged were there illegally — were stealing and eating household pets. City and county officials disputed the claims the former president levied during his Sept. 10 debate with Vice President Kamala Harris, his Democratic opponent.

Trump was amplifying comments made by Vance that — along with his claims about the immigration status of this population — were broadly panned as false. When asked during a CNN interview about the debunked pet-eating rumor, Vance, a U.S. senator from Ohio, acknowledged that the image he created was based not on facts but on “firsthand accounts from my constituents.” He said he was willing “to create” stories to focus attention on how immigration can overrun communities.

But Ohio Gov. Mike DeWine, also a Republican, has said immigrants have been an economic boon to Springfield. Many began arriving because businesses in the town, which had seen its population decrease, needed labor.

Largely lost in the political rancor is the way Springfield and the surrounding area responded to the influx of Haitian immigrants. Local health institutions tried to address the needs of this new population, which had lacked basic public health care such as immunization and often didn’t understand the U.S. health system.

The town is a microcosm of how immigration is reshaping communities throughout the United States. In the Springfield area, Catholic charities, other philanthropies, volunteers, and county agencies have banded together over the past three to four years to tackle the challenge and connect immigrants who have critical health needs with providers and care.

For instance, a community health center added Haitian Creole interpreters. The county health department opened a refugee health testing clinic to provide immunizations and basic health screenings, operating on such a shoestring budget that it’s open only two days a week.

And a coalition of groups to aid the Haitian community was created about two years ago to identify and respond to immigrant community needs. The group meets once a month with about 55 or 60 participants. On Sept. 18, about a week after Trump ramped up the furor at the debate, a record 138 participants joined in.

“We have all learned the necessity of collaboration,” said Casey Rollins, director of Springfield’s St. Vincent de Paul, a nonprofit Catholic social services organization that has become a lifeline for many of the town’s Haitian immigrants. “There’s a lot of medical need. Many of the people have high blood pressure, or they frequently have diabetes.”

Several factors have led Haitians to leave their Caribbean country for the United States, including a devastating earthquake in 2010, political unrest after the 2021 assassination of Haiti’s president, and ongoing gang violence. Even when health facilities in the country are open, it can be too treacherous for Haitians to travel for treatment.

“The gangs typically leave us alone, but it’s not a guarantee,” said Paul Glover, who helps oversee the St. Vincent’s Center for children with disabilities in Haiti. “We had a 3,000-square-foot clinic. It was destroyed. So was the X-ray machine. People have been putting off health care.”

An estimated 12,000 to 15,000 Haitian immigrants live in Clark County, officials said. About 700,000 Haitian immigrants lived in the United States in 2022, according to U.S. Census data.

Those who have settled in the Springfield area are generally in the country legally under a federal program that lets noncitizens temporarily enter and stay in the United States under certain circumstances, such as for urgent humanitarian reasons, according to city officials.

The influx of immigrants created a learning curve for hospitals and primary care providers in Springfield, as well as for the newcomers themselves. In Haiti, people often go directly to a hospital to receive care for all sorts of maladies, and county officials and advocacy groups said many of the immigrants were unfamiliar with the U.S. system of seeing primary care doctors first or making appointments for treatment.

Many sought care at Rocking Horse Community Health Center, a nonprofit, federally qualified health center that provides mental health, primary, and preventive care to people regardless of their insurance status or ability to pay. Federally qualified health centers serve medically underserved areas and populations.

The center treated 410 patients from Haiti in 2022, up more than 250% from 115 in 2021, according to Nettie Carter-Smith, the center’s director of community relations. Because the patients required interpreters, visits often stretched twice as long.

Rocking Horse hired patient navigators fluent in Haitian Creole, one of the two official languages of Haiti. Its roving purple bus provides on-site health screenings, vaccinations, and management of chronic conditions. And this school year, it’s operating a $2 million health clinic at Springfield High.

Many Haitians in Springfield have reported threats since Trump and Vance made their town a focus of the campaign. Community organizations were unable to identify any immigrants willing to be interviewed for this story.

Hospitals have also felt the impact. Mercy Health’s Springfield Regional Medical Center also saw a rapid influx of patients, spokesperson Jennifer Robinson said, with high utilization of emergency, primary care, and women’s health services.

This year, hospitals also have seen several readmissions for newborns struggling to thrive as some new mothers have trouble breastfeeding or getting supplemental formula, county officials said. One reason: New Haitian immigrants must wait six to eight weeks to get into a program that provides supplemental food for low-income pregnant, breastfeeding, or non-breastfeeding postpartum women, as well as for children and infants.

At Kettering Health Springfield, Haitian immigrants come to the emergency department for nonemergency care. Nurses are working on two related projects, one focusing on cultural awareness for staff and another exploring ways to improve communication with Haitian immigrants during discharge and in scheduling follow-up appointments.

Many of the immigrants are able to get health insurance. Haitian entrants generally qualify for Medicaid, the state-federal program for the low-income and disabled. For hospitals, that means lower reimbursement rates than with traditional insurance.

During 2023, 60,494 people in Clark County were enrolled in Medicaid, about 25% of whom were Black, according to state data. That’s up from 50,112 in 2017, when 17% of the enrollees were Black. That increase coincides with the rise of the Haitian population.

In September, DeWine pledged $2.5 million to help health centers and the county health department meet the Haitian and broader community’s needs. The Republican governor has pushed back on the recent national focus on the town, saying the spread of false rumors has been hurtful for the community.

Ken Gordon, a spokesperson for the Ohio Department of Health, acknowledged the difficulties Springfield’s health systems have faced and said the department is monitoring to avert potential outbreaks of measles, whooping cough, and even polio.

People diagnosed with HIV in the county increased from 142 residents in 2018 to 178 to 2022, according to state health department data. Cook, the Clark County health commissioner, said the data lags by about 1.5 years.

But Cook said, “as a whole, all reportable infections to the health department are not increasing.” Last year, he said, no one died of tuberculosis. “But 42 people died of covid.”

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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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Most employers have little idea what the pharmacy benefit managers they hire do with the money they exchange for the medications used by their employees, according to a KFF survey released Wednesday morning.

In KFF’s latest employer health benefits survey, company officials were asked how much of the rebates collected from drugmakers by pharmacy benefit managers, or PBMs, is returned to them. In recent years, the pharmaceutical industry has tried to deflect criticism of high drug prices by saying much of that income is siphoned off by the PBMs, companies that manage patients’ drug benefits on behalf of employers and health plans.

PBM leaders say they save companies and patients billions of dollars annually by obtaining rebates from drugmakers that they pass along to employers. Drugmakers, meanwhile, say they raise their list prices so high in order to afford the rebates that PBMs demand in exchange for placing the drugs on formularies that make them available to patients.

Leaders of the three largest PBMs — CVS Caremark, Optum RX and Express Scripts — all testified in Congress in July that 95% to 98% of the rebates they collect from drugmakers flow to employers.

For KFF’s survey of 2,142 randomly selected companies, officials from those with 500 or more employees were asked how much of the rebates negotiated by PBMs returned to the company as savings. About 19% said they received most of the rebates, 27% said some, and 16% said little. Thirty-seven percent of the respondents didn’t know.

While a larger percentage of officials from the largest companies said they got most or some of the rebates, the answers — and their contrast with the testimony of PBM leaders — reflect the confusion or ignorance of employers about what their drug benefit managers do, said survey leader Gary Claxton, a senior vice president at KFF, a health information nonprofit that includes KFF Health News.

“I don’t think they can ever know all the ways the money moves around because there are so many layers, between the wholesalers and the pharmacies and the manufacturers,” he said.

Critics say big PBMs — which are parts of conglomerates that include pharmacies, providers, and insurers — may conceal the size of their rebates by conducting negotiations through corporate-controlled rebate aggregators, or group purchasers, mostly based overseas in tax havens, that siphon off a percentage of the cash before it goes on the PBMs’ books.

PBMs also make money by encouraging or requiring patients to use affiliated specialty pharmacies, by skimping on payments to other pharmacies, and by collecting extra cash from drug companies through the federal 340B drug pricing program, which is aimed at lowering drug costs for low-income patients, said Antonio Ciaccia, CEO of 46brooklyn Research.

The KFF survey indicates how little employers understand the PBMs and their pricing policies. “Employers are generally frustrated by the lack of transparency into all the prices out there,” Claxton said. “They can’t actually know what’s true.”

Billionaire Mark Cuban started a company to undercut the PBMs by selling pharmaceuticals with transparent pricing policies. He tells Fortune 500 executives he meets, “You’re getting ripped off, you’re losing money because it’s not your core competency to understand how your PBM and health insurance contracts work,” Cuban told KFF Health News in an interview Tuesday.

Ciaccia, who has conducted PBM investigations for several states, said employers are not equipped to understand the behavior of the PBMs and often are surprised at how unregulated the PBM business is.

“You’d assume that employers want to pay less, that they would want to pay more attention,” he said. “But what I’ve learned is they are often underequipped, underresourced, and oftentimes not understanding the severity of the lack of oversight and accountability.”

Employers may assume the PBMs are acting in their best interest, but they don’t have a legal obligation to do so.

Prices can be all over the map, even those charged by the same PBM, Ciaccia said. In a Medicaid study he recently conducted, a PBM was billing employers anywhere from $2,000 to $8,000 for a month’s worth of imatinib, a cancer drug that can be bought as a generic for as little as $30.

PBM contracts often guarantee discounts of certain percentage points for generics and brand-name drugs. But the contracts then contain five pages of exclusions, and “no employer will know what they mean,” Ciaccia said. “That person doesn’t have enough information to have an informed opinion.”

The KFF survey found that companies’ annual premiums for coverage of individual employees had increased from an average of $7,739 in 2021 to $8,951 this year, and $22,221 to $25,572 for families. Among employers’ greatest concerns was how to cover increasingly popular weight loss drugs that list at $2,000 a month or more.

Only 18% of respondents said their companies covered drugs such as Wegovy for weight loss. The largest group of employers offering such coverage — 28% — was those with 5,000 or more employees.

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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Californians in November will weigh in on a ballot initiative to increase scrutiny over the use of health-care dollars — particularly money from a federal drug discount program — meant to support patient care largely for low-income or indigent people. The revenue is sometimes used to address housing instability and homelessness among vulnerable patient populations.

Voters are being asked whether California should increase accountability in the 340B drug discount program, which provides money for community clinics, safety net hospitals and other nonprofit health-care providers.

The program requires pharmaceutical companies to give drug discounts to these clinics and nonprofit entities, which can bank revenue by charging higher reimbursement rates.

Advocates pushing the measure, Proposition 34, say some entities are using the drug discount program as a slush fund, plowing money into housing and homelessness initiatives that don’t meet basic patient safety standards. Researchers and advocates have called for greater oversight.

“There are 340B entities that are misusing these public dollars,” said Nathan Click, a spokesperson for the pro-Proposition 34 campaign. “The whole point of this program is to use this money to get more low-income people health-care services.”

The initiative wouldn’t bar 340B providers from using health-care funds for housing or homelessness programs. Instead, it targets providers that spend more than $100 million on purposes other than direct patient care over 10 years. It would mandate that 98 percentof 340B revenues go to direct patient care. It also targets 340B providers with health insurer contracts and pharmacy licenses and those serving low-income Medicaid or Medicare patients that have been dinged with at least 500 high-severity housing violations for substandard or unsafe conditions.

That has placed a bull’s eye on the Los Angeles-based AIDS Healthcare Foundation, a nonprofit that provides direct patient care via clinics and pharmacies in California and other states, including Illinois, Texas and New York. It also owns housing for low-income and homeless people.

A Los Angeles Times investigation found that many residents of AIDS Healthcare Foundation properties are living in deplorable, unhealthy conditions.

Michael Weinstein, the foundation’s president, disputes those claims and argues that Proposition 34 proponents, including real estate interests, are going after him for another ballot initiative that seeks to implement rent control in more communities across California.

“It’s a revenge initiative,” Weinstein said, arguing that the deep-pocketed California Apartment Association is targeting his foundation — and its health and housing operations — because it has backed ballot measures pushing rent control across California. “This is a two-pronged attack against us to defeat rent control.”

Weinstein is locked in a feud with the apartment association, the chief sponsor of the initiative, which has contributed handsomely to pass Proposition 34. Opponents argue that the initiative is “a wolf in sheep’s clothing.”

Weinstein acknowledged to KFF Health News that his nonprofit uses money from 340B drug discounts to support its housing initiatives but argued they are helping treat and house some of the most vulnerable people, who would otherwise be homeless.

The apartment association declined several requests for comment. But Proposition 34 backers say they aren’t going after rent control — or Weinstein and his nonprofit.

Supporters argue that “rising health care costs are squeezing millions of Californians” and say that the initiative would “give California patients and taxpayers much needed relief, and lowers state drug costs, while saving California taxpayers billions.”

If the initiative passes and 340B providers do not spend 98 percent of the revenue on direct patient care, they could lose their license to practice health care and their nonprofit status.

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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).