On Fridays, Stephanie Johnson has a busy schedule, driving her navy-blue Jeep from one patient’s home to the next, seeing eight in all. Pregnant with her second child, she schleps a backpack instead of a traditional black bag to carry a laptop and essential medical supplies — stethoscope, blood pressure cuff, and pulse oximeter.

Forget a lunch break; she often eats a sandwich or some nuts as she heads to her next patient visit.

On a gloomy Friday in January, Johnson, a nurse practitioner who treats older adults, had a hospice consult with Ellen, a patient in her 90s in declining health. To protect Ellen’s identity, KFF Health News is not using her last name.

“Hello. How are you feeling?” Johnson asked as she entered Ellen’s bedroom and inquired about her pain. The blinds were drawn. Ellen was in a wheelchair, wearing a white sweater, gray sweatpants, and fuzzy socks. A headband was tied around her white hair. As usual, the TV was playing loudly in the background.

“It’s fine, except this cough I’ve had since junior high,” Ellen said.

Ellen had been diagnosed with vascular dementia, peripheral vascular disease, and Type 2 diabetes. Last fall, doctors made the difficult decision to operate on her foot. Before the surgery, Ellen was always colorful, wearing purple, yellow, blue, pink, and chunky necklaces. She enjoyed talking with the half dozen other residents at her adult family home in Washington state. She had a hearty appetite that brought her to the breakfast table early. But lately, her enthusiasm for meals and socializing had waned.

Johnson got down to eye level with Ellen to examine her, assessing her joints and range of motion, checking her blood pressure, and listening to her heart and lungs.

Carefully, Johnson removed the bandage to examine Ellen’s toes. Her lower legs were red but cold to the touch, which indicated her condition wasn’t improving. Ellen’s two younger sisters had power of attorney for her and made it clear that, above all, they wanted her to be comfortable. Now, Johnson thought it was time to have that difficult conversation with them about Ellen’s prognosis, recommending her for hospice.

“Our patient isn’t just the older adult,” Johnson said. “It’s also often the family member or the person helping to manage them.”

Nurse practitioners are having those conversations more and more as their patient base trends older. They are increasingly filling a gap that is expected to widen as the senior population explodes and the number of geriatricians declines. The Health Resources and Services Administration projects a 50% increase in demand for geriatricians from 2018 to 2030, when the entire baby boom generation will be older than 65. By then, hundreds of geriatricians are expected to retire or leave the specialty, reducing their number to fewer than 7,600, with relatively few young doctors joining the field.

That means many older adults will be relying on other primary care physicians, who already can’t keep up with demand, and nurse practitioners, whose ranks are booming. The number of nurse practitioners specializing in geriatrics has more than tripled since 2010, increasing the availability of care to the current population of seniors, a recent study in JAMA Network Open found.

According to a 2024 survey, of the roughly 431,000 licensed nurse practitioners, 15% are, like Johnson, certified to treat older adults.

Johnson and her husband, Dustin, operate an NP-led private practice in greater Seattle, Washington, a state where she can practice independently. She and her team, which includes five additional nurse practitioners, each try to see about 10 patients a day, visiting each one every five to six weeks. Visits typically last 30 minutes to an hour, depending on the case.

“There are so many housebound older adults, and we’re barely reaching them,” Johnson said. “For those still in their private homes, there’s such a huge need.”

Laura Wagner, a professor of nursing and community health systems at the University of California-San Francisco, stressed that nurse practitioners are not trying to replace doctors; they’re trying to meet patients’ needs, wherever they may be.

“One of the things I’m most proud of is the role of nurse practitioners,” she said. “We step into places where other providers may not, and geriatrics is a prime example of that.”

Practice Limits

Nurse practitioners are registered nurses with advanced training that enables them to diagnose diseases, analyze diagnostic tests, and prescribe medicine. Their growth has bolstered primary care, and, like doctors, they can specialize in particular branches of medicine. Johnson, for example, has advanced training in gerontology.

“If we have a geriatrician shortage, then hiring more nurse practitioners trained in geriatrics is an ideal solution,” Wagner said, “but there are a lot of barriers in place.”

In 27 states and Washington, D.C., nurse practitioners can practice independently. But in the rest of the country, they need to have a collaborative agreement with or be under the supervision of another health care provider to provide care to older adults. Medicare generally reimburses for nurse practitioner services at 85% of the amount it pays physicians.

Last year, in more than 40 states, the American Medical Association and its partners lobbied against what they see as “scope creep” in the expanded roles of nurse practitioners and other health workers. The AMA points out that doctors must have more schooling and significantly more clinical experience than nurse practitioners. While the AMA says physician-led teams keep costs lower, a study published in 2020 in Health Services Research found similar patient outcomes and lower costs for nurse practitioner patients. Other studies, including one published in 2023 in the journal Medical Care Research and Review, have found health care models including nurse practitioners had better outcomes for patients with multiple chronic conditions than teams without an NP.

Five states have granted NPs full practice authority since 2021, with Utah the most recent state to remove physician supervision requirements, in 2023. In March, however, Mississippi House Bill 849, which would have increased NP independence, failed. Meanwhile, 30 Texas physicians rallied to tamp down full-scope efforts in Austin.

“I would fully disagree that we’re invading their scope of practice and shouldn’t have full scope of our own,” Johnson said.

She has worked under the supervision of physicians in Pennsylvania and Washington state but started seeing patients at her own practice in 2021. Like many nurse practitioners, she sees her patients in their homes. The first thing she does when she gets a new patient is manage their prescriptions, getting rid of unnecessary medications, especially those with harsh side effects.

She works with the patient and a family member who often has power of attorney. She keeps them informed of subtle changes, such as whether a person was verbal and eating and whether their medical conditions have changed.

While there is some overlap in expertise between geriatricians and nurse practitioners, there are areas where nurses typically excel, said Elizabeth White, an assistant professor of health services, policy, and practice at Brown University.

“We tend to be a little stronger in care coordination, family and patient education, and integrating care and social and medical needs. That’s very much in the nursing domain,” she said.

That care coordination will become even more critical as the U.S. ages. Today, about 18% of the U.S. population is 65 or over. In the next 30 years, the share of seniors is expected to reach 23%, as medical and technological advances enable people to live longer.

Patient and Family

In an office next to Ellen’s bedroom, Johnson called Ellen’s younger sister Margaret Watt to recommend that Ellen enter hospice care. Johnson told her that Ellen had developed pneumonia and her body wasn’t coping.

Watt appreciated that Johnson had kept the family apprised of Ellen’s condition for several years, saying she was a good communicator.

“She was accurate,” Watt said. “What she said would happen, happened.”

A month after the consult, Ellen died peacefully in her sleep.

“I do feel sadness,” Johnson said, “but there’s also a sense of relief that I’ve been with her through her suffering to try to alleviate it, and I’ve helped her meet her and her family’s priorities in that time.”

Jariel Arvin is a reporter with the Investigative Reporting Program at the University of California-Berkeley Graduate School of Journalism. He reported this article through a grant from The SCAN 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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Decenas de expertos en VIH de los Centros para el Control y Prevención de Enfermedades (CDC) recibieron correos electrónicos el miércoles 11 de junio revocando las notificaciones de despido recibidas diez semanas atrás.

Sin embargo, el daño a sus proyectos podría ser permanente, y las restricciones continuas a sus investigaciones perjudicarán vidas, dijeron científicos de los CDC que trabajan en el área de VIH a KFF Health News. Lo hicieron de manera anónima por temor a represalias.

Estos investigadores fueron despedidos a principios de abril, justo antes de finalizar las encuestas nacionales exhaustivas sobre el VIH. Oficiales de salud de todo el país entrevistaron a decenas de miles de personas en riesgo de contraer el VIH o que viven con el virus, y recopilaron información de montañas de historiales médicos.

Los estados y ciudades estaban preparados para enviar la información recopilada a los CDC en abril para que los expertos en estadísticas de la agencia pudieran preparar la enorma cantidad de datos para su análisis.

Oficiales de salud y legisladores utilizan estos datos para diseñar programas contra el VIH que frenen la propagación de infecciones y salven vidas de manera más eficiente.

Por ejemplo, una encuesta de 2023 reveló que aproximadamente la mitad de los adultos menores de 30 años que vivían con VIH no recibían tratamiento de forma regular para poder mantenerse sanos y evitar transmitir el virus a otras personas. Las tasas de tratamiento eran mucho más altas para los mayores de 50 años. Como resultado, las autoridades sanitarias redoblaron sus esfuerzos para llegar a las generaciones más jóvenes.

Sin embargo, en abril, luego de los despidos, se cortaron los vínculos entre las autoridades sanitarias estatales y locales y sus homólogos de los CDC. Correos electrónicos del Departamento de Salud y Servicios Humanos (HHS) indicaron al personal que sus funciones eran “innecesarias o prácticamente idénticas a las que se desempeñaban en otras partes de la agencia”.

Marti Merritt, coordinadora de proyectos del Departamento de Salud de Illinois, se quedó atónita al ver que ella y otros empleados estatales habían invertido más de un año en las encuestas, solo para que estas se esfumaran en la fase final. “Es como si los datos se hubieran ido a un agujero negro”, dijo. “¿Cómo se establecen prioridades si no se tienen datos?”.

A Merritt le preocupa que, si no se reanudan las encuestas, se malgasten los presupuestos limitados y aumenten los casos. Los datos permiten a los departamentos de salud adaptar sus esfuerzos a las poblaciones con mayor riesgo de infección o progresión de la enfermedad.

La evidencia demuestra que prevenir el VIH es mucho más económico que tratar a las personas una vez infectadas.

Prevenir una sola infección por VIH supone un ahorro de $466.000 a lo largo de una vida. Merritt también se mostró consternado por haber desperdiciado el tiempo de miles de personas que se sinceraron sobre detalles íntimos de sus vidas con la esperanza de luchar contra la epidemia de VIH.

Un médico y experto en VIH reincorporado a los CDC la semana del 9 de junio afirmó que finalizar las encuestas más tarde supondría un desperdicio de millones de dólares de los contribuyentes que ya se han gastado en la recopilación de datos. Dos grandes iniciativas de larga data, el Medical Monitoring Project, y el National HIV Behavioral Surveillance System, costaron alrededor de $72 millones, afirmó.

“Dos años de datos de 30.000 participantes serán inutilizables y, por lo tanto, se desperdiciarán” si los proyectos no se pueden finalizar, agregó.

Para reanudar las encuestas, él y otros investigadores de los CDC necesitarían luz verde de las máximas autoridades, ya que las subvenciones que cubrían estas encuestas finalizaron mientras estaban de baja administrativa en mayo.

Las autoridades sanitarias estatales afirmaron no haber recibido las notificaciones de los CDC que suelen renovar las encuestas cada junio. Merritt dijo que ha realizado entrevistas para el Medical Monitoring Project por unos 20 años, pero el Departamento de Salud de Illinois lo ha asignado a otras tareas. Otros departamentos de salud también han despedido o reasignado a empleados dedicados a la vigilancia del VIH.

Si el HHS permite que los investigadores reincorporados reanuden los proyectos, podrían intentar compensar el lapso de diez semanas en sus análisis. Sin embargo, esto llevaría tiempo, lo que retrasaría aún más la siguiente ronda de encuestas, si es que llegan a comenzar.

“Estas encuestas no son luces que se encienden y se apagan”, dijo John Brooks, investigador que se jubiló de la División de Prevención del VIH de los CDC el año pasado. Si las encuestas se reanudan, “podemos obtener algún valor de todo el dinero gastado”, expresó.

Sin embargo, las encuestas se verían aún más perjudicadas por las acciones relacionadas con las órdenes ejecutivas de Trump que se centran en palabras como “género”, que los investigadores utilizan para saber quién tiene VIH, quién está en riesgo y por qué.

Expertos de los CDC afirmaron que ya han tenido que revisar encuestas anteriores y recalcular los resultados para que no hagan referencia al género. Esto ha implicado alterar datos de dos poblaciones desproporcionadamente afectadas por el VIH: las personas transgénero y los hombres que tienen sexo con hombres.

“Borrar personas de nuestros datos les perjudica”, declaró el investigador y médico, ahora reincorporado a los CDC. “Me preocupan los pacientes transgénero que atiendo, y es muy doloroso ver que el gobierno los trate así”.

El médico afirmó que ha tratado a pacientes con VIH desde el comienzo de la epidemia en la década de 1980, y el dolor que siente ahora es peor que durante la presidencia de Ronald Reagan, quien nunca mencionó públicamente el VIH durante su primer mandato.

“Había falta de financiación, pero no censuraron la ciencia ni intentaron controlarla como lo hacen ahora”, dijo.

Desde los despidos de abril, muchos investigadores del VIH han aceptado trabajos fuera del gobierno o se han mudado. Algunos que volverán a la agencia definieron a las reincorporaciones como desconcertantes, ya que los avisos no especifican qué harán a su regreso ni por cuánto tiempo.

Un breve correo electrónico dirigido a los empleados de los CDC de Tom Nagy, director de capital humano del HHS, que KFF Health News revisó, simplemente se refiere al anuncio sobre la reducción de personal y dice: “Por la presente, se revoca dicho aviso”.

En respuesta a consultas por correo electrónico, Andrew Nixon, director de comunicaciones del HHS, escribió: “El HHS está optimizando sus operaciones sin comprometer su labor esencial. Mejorar la salud y el bienestar de todos los estadounidenses sigue siendo nuestra principal prioridad”.

“Hemos estado cobrando todo este tiempo a pesar de no tener permiso para trabajar, y eso no es agradable para un funcionario dedicado”, dijo un empleado reincorporado.

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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BRIDGEPORT, W.Va. — By the time Eric Tennant was diagnosed in 2023 with a rare cancer of the bile ducts, the disease had spread to his bones. He weighed 97 pounds and wasn’t expected to survive a year with stage 4 cancer.

Two years later, grueling rounds of chemotherapy have slowed the cancer’s progress, even as it has continued to spread. But chemotherapy has also ravaged Tennant’s body and his quality of life.

Recently, however, the 58-year-old had reason to hope things would improve. Last fall, his wife, Rebecca, learned of a relatively new, noninvasive procedure called histotripsy, which uses targeted ultrasound waves to destroy tumors in the liver. The treatment could extend his life and buy him more downtime between rounds of chemotherapy.

Early this year, Tennant’s oncologist agreed he was a good candidate since the largest tumor in his body is in his liver. But that’s when his family began fighting another adversary: their health insurer, which decided the treatment was “not medically necessary,” according to insurance paperwork.

Health insurers issue millions of denials every year. And like the Tennants, many patients find themselves stuck in a convoluted appeals process marked by long wait times, frustrating customer service encounters, and decisions by medical professionals they’ve never met who may lack relevant training.

Recent federal and state efforts, as well as changes undertaken by insurance companies themselves, have attempted to improve a 50-year-old system that disproportionately burdens some of the sickest patients at the worst times. And yet many doctors complain that insurance denials are worse than ever as the use of prior authorization has ramped up in recent years, reporting by KFF Health News and NBC News found.

When the Tennant family was told histotripsy would cost $50,000 and insurance wouldn’t cover it, they appealed the denial four times.

“It’s a big mess,” said Rebecca Tennant, who described feeling like a pingpong ball, bouncing between the insurer and various health care companies involved in the appeals process.

“There’s literally nothing we can do to get them to change,” she said in an April interview with KFF Health News. “They’re, like, not accountable to anyone.”

While the killing of UnitedHealthcare chief executive Brian Thompson in December incited a fresh wave of public fury about denials, there is almost no hope of meaningful change on the horizon, said Jay Pickern, an assistant professor of health services administration at Auburn University.

“You would think the murder of a major health insurance CEO on the streets of New York in broad daylight would be a major watershed moment,” Pickern said. Yet, once the news cycle died down, “everything went back to the status quo.”

An Unintended Consequence of Health Reform?

Prior authorization varies by plan but often requires patients or their providers to get permission (also called precertification, preauthorization, or preapproval) before filling prescriptions, scheduling imaging, surgery, or an inpatient hospital stay, among other expenses.

The practice isn’t new. Insurers have used prior authorization for decades to limit fraud, prevent patient harm, and control costs. In some cases, it is used to intentionally generate profits for health insurers, according to a 2024 U.S. Senate report. By denying costly care, companies pay less for health care expenses while still collecting premiums.

“At the end of the day, they’re a business and they exist to make money,” said Pickern, who wrote about the negative impacts of prior authorization on patient care for The American Journal of Managed Care.

For most patients, though, the process works seamlessly. Prior authorization mostly happens behind the scenes, almost always electronically, and nearly all requests are quickly, or even instantly, approved.

But the use of prior authorization has also increased in recent years. That’s partly due to the growth of enrollment in Medicare Advantage plans, which rely heavily on prior authorization compared with original Medicare. Some health policy experts also point to the passage of the Affordable Care Act in 2010, which prohibited health insurers from denying coverage to patients with preexisting conditions, prompting companies to find other ways to control costs.

“But we can’t really prove this,” said Kaye Pestaina, director of the Program on Patient and Consumer Protection at KFF, a health information nonprofit that includes KFF Health News. Health insurers haven’t been historically transparent about which services require prior authorization, she said, making it difficult to draw comparisons before and after the passage of the Affordable Care Act.

Meanwhile, many states are looking to overhaul the prior authorization process.

In March, Virginia passed a law that will require health insurers to publicly post a list of health care services and codes for which prior authorization is required. A North Carolina bill would require doctors who review patient appeals to have practiced medicine in the same specialty as the patient’s provider. The West Virginia Legislature passed bills in both 2019 and 2023 requiring insurers to respond to nonurgent authorization requests within five days and more urgent requests within two days, among other mandates.

And in 2014, the South Carolina Department of Health and Human Services temporarily lifted all prior authorization requirements for Medicaid beneficiaries seeking rehabilitative behavioral health services.

Federal rules to modify prior authorization that were introduced by the first Trump administration and finalized by the Biden administration are set to take effect next year, with the aim of streamlining the process, reducing wait times, and improving transparency.

These changes were supported by AHIP, a trade group that represents health insurers.

‘Sick With Little Recourse’

But the new federal rules won’t prevent insurance companies from denying payment for doctor-recommended treatment, and they apply only to some categories of health insurance, including Medicare Advantage and Medicaid. Nearly half the U.S. population is covered by employer-sponsored plans, which remain untouched by the new rules.

For some patients, the stakes couldn’t be higher.

On May 12, Alexander Schrift, 35, died at home in San Antonio, Florida, less than two months after his insurance company refused to cover the cancer drug ribociclib. It’s used to treat breast cancer but has shown promise in treating the same type of brain tumor Schrift was diagnosed with in 2022, according to researchers at the Dana-Farber Cancer Institute in Boston and the Institute of Cancer Research in London.

But Schrift’s insurance company refused to pay. The Right to Try Act, signed by President Donald Trump in 2018, entitles patients with terminal illnesses to try experimental drugs, but it does not obligate insurance companies to pay for them.

In May, Sheldon Ekirch, 30, of Henrico, Virginia, said her parents withdrew money from their retirement savings to pay for treatment denied by her health insurance company.

Ekirch, who was diagnosed with small fiber neuropathy in 2023, was recommended by her doctor to try an expensive blood plasma treatment called intravenous immunoglobulin to ease her near-constant pain. In April, a state agency charged with reviewing insurance denials upheld her insurer’s decision. Out-of-pocket, the treatment may cost her parents tens of thousands of dollars.

“Never in a million years did I think I’d end up here,” Ekirch said, “sick with little recourse.”

Earlier this year, New Jersey congressman Jefferson Van Drew, a Republican, introduced a bill that would eliminate prior authorization altogether. But history suggests that would create new problems.

When South Carolina Medicaid lifted prior authorization for rehabilitative behavioral health services in 2014, the department’s costs for those services skyrocketed from $300,000 to $2 million per week, creating a $54 million budget shortfall after new providers flooded the market. Some providers were eventually referred to the South Carolina Attorney General’s Office for Medicaid fraud investigation. The state Medicaid agency eventually reinstated prior authorization for specific services, spokesperson Jeff Leieritz said.

What happened in South Carolina illustrates a common argument made by insurers: Prior authorization prevents fraud, reduces overspending, and guards against potential harm to patients.

On the other hand, many doctors and patients claim that cost-containment strategies, including prior authorization, do more harm than good.

On Feb. 3, 2024, Jeff Hall of Estero, Florida, became paralyzed from the neck down and spent weeks in a coma after he suddenly developed Guillain-Barré Syndrome. The cause of his illness remains unknown.

Hall, now 51, argued that the Florida Blue health insurance plan he purchased on the federal marketplace hindered his recovery by capping the number of days he was allowed to remain in an acute rehabilitation hospital last year.

Hall said that after he was forced to “step down” to a lower-level nursing facility, his health deteriorated so rapidly within six days that he was sent to the emergency room, placed on a ventilator, and required a second tracheostomy. Hall believes the insurance company’s coverage limits set his recovery back by months — and, ironically, cost the insurer more. His wife, Julie, estimated Jeff’s medical bills have exceeded $5 million, and most of his care has been covered by his insurer.

“Getting better is not always the goal of an insurance company. It’s a business,” Jeff Hall said. “They don’t care.”

In a prepared statement, Florida Blue spokesperson Jose Cano said the company understands “it can be a challenge when a member reaches the limit of their coverage for a specific service or treatment.” He encouraged members affected by coverage limits to contact their health care providers to “explore service and treatment options.”

A ‘Rare and Exceptional’ Reversal

Back in West Virginia, Eric and Rebecca Tennant say they are realistic about Eric’s prognosis.

They never expected histotripsy to cure his cancer. At best, the procedure could buy him more time and might allow him to take an extended break from chemotherapy. That makes it worth trying, they said.

As a safety instructor with the West Virginia Office of Miners’ Health Safety and Training, Eric Tennant is a state employee and is insured by West Virginia’s Public Employees Insurance Agency.

As the Tennants pleaded with the state insurance agency to cover histotripsy, they faced a list of other companies involved in the decision, including UMR, a UnitedHealthcare subsidiary that contracts with West Virginia to manage the public employee plans, and MES Peer Review Services, a Massachusetts company that upheld the insurer’s decision in March, citing that histotripsy is “unproven in this case and is not medically necessary.”

None of their appeals worked. After KFF Health News and NBC News reached out to West Virginia’s Public Employees Insurance Agency with questions for this article, the agency changed its mind, explaining the insurer had consulted with medical experts to further evaluate the case.

“This decision reflects a rare and exceptional situation” and does not represent a change in the Public Employees Insurance Agency’s overall coverage policies,” Director Brent Wolfingbarger said in a prepared statement to KFF Health News.

In a separate prepared statement, UnitedHealthcare spokesperson Eric Hausman said the company sympathizes with “anyone navigating through life-threatening care decisions.”

“Currently, there is no evidence that histotripsy is as effective as alternative treatment options available,” he said in late May, after the earlier insurance denials were reversed, “and its impact on survival or cancer recurrence is unknown.”

MES Peer Review Services did not respond to a request for an interview.

Meanwhile, Rebecca Tennant worries it might be too late. She said her husband was first evaluated for histotripsy in February. But his health has recently taken a turn for the worse. In late May and early June, she said, he spent five days in the hospital after developing heart and lung complications.

Eric Tennant is no longer considered a viable candidate for histotripsy, his wife said, although the Tennants are hopeful that will change if his health improves. Scans scheduled for July will determine whether his cancer has continued to progress. Rebecca Tennant blames her husband’s insurance plan for wasting months of their time.

“Time is precious,” she said. “They know he has stage 4 cancer, and it’s almost like they don’t care if he lives or dies.”

NBC News health and medical unit producer Jason Kane and correspondent Erin McLaughlin contributed to this report.

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

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Hundreds of workers at the National Institutes of Health — the largest public funder of biomedical research in the world — are openly protesting the Trump administration’s policies regarding the agency, saying the upheaval and harm being done to the institution is so great that they felt they had no choice. 

A letter sent June 9 to agency director Jay Bhattacharya, signed by more than 300 current or former workers — including more than a quarter who signed their names publicly — is an extraordinary rebuke of the Trump administration’s actions against the NIH this year. And that is no small list. They include terminating hundreds of grants funding scientific and biomedical research across the country, firing more than 1,000 employees, tanking funding for young scientists, and moving to end billions in funds to partner research institutions overseas, a move current and former NIH workers say will harm work to combat rare cancers and infectious diseases, among other research. 

“It’s been soul-crushing,” said one NIH worker who signed the letter, whom KFF Health News agreed not to name because they are not authorized to speak to the press and fear retaliation. “This matters for everyone who has ever been sick or knows anyone who has.” 

Bhattacharya received the letter — which he said “has some fundamental misconceptions about the policy directions the NIH has taken in recent months” — a day before testifying in front of a Senate subcommittee about the Trump White House’s budget proposal for the NIH. That proposal seeks to slash the agency’s funding by 40% and collapse its 27 institutes and centers into eight. And it made for some fireworks with lawmakers, particularly Democrats, who lodged numerous complaints. 

“What the Trump administration is doing to NIH right now is, frankly, catastrophic,” Sen. Patty Murray (D-Wash.) said at the Senate Appropriations subcommittee hearing June 10. 

Bhattacharya said that the budget “is a collaboration” with Congress, making it clear that the White House’s proposal is far from set in stone. But he also took responsibility for specific actions the administration has taken without congressional involvement. Asked by Sen. Tammy Baldwin (D-Wis.) who is making decisions to withhold grant funding, Bhattacharya said, “I’ve made those decisions” to “move away from politicized science.” 

In a town hall meeting with NIH employees in May, a recording of which KFF Health News obtained, Bhattacharya contended that certain NIH-supported research focused on racial and ethnic minorities is “ideological in nature, and that doesn’t advance the health and well-being of anybody” — a characterization that NIH workers dispute. 

“They’re actually doing the very thing that they say they’re not doing,” one worker said, “and cutting whole areas of science that are critical to understanding how to improve patient care and patient outcomes.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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Dozens of HIV experts at the Centers for Disease Control and Prevention received emails on Wednesday revoking notices they received 10 weeks ago that laid them off. Damage to their projects may be permanent, however, and ongoing restrictions on their research will harm lives, multiple HIV scientists at the CDC told KFF Health News on condition of anonymity because of fears of retaliation.

The researchers were laid off in early April, just before they put the finishing touches on in-depth, national surveys about HIV. Health officials across the country had interviewed tens of thousands of people at risk of acquiring HIV, or who are living with the virus, and compiled information from mountains of medical records.

States and cities were prepared to submit the information they collected to the CDC in April so the agency’s statisticians could prepare the volumes of data for analysis.

Health officials and policymakers use the data to design HIV programs that more efficiently curb the spread of infections and save lives. For example, a 2023 survey revealed that about half of adults under age 30 who were living with HIV weren’t on treatment steadily enough to keep them healthy and prevent them from spreading the virus to others. Treatment rates were far higher for those over 50. As a result, health officials doubled down on outreach to younger generations.

However, in April, state and local health officials found themselves cut off from their CDC counterparts after the layoffs. Emails from the Department of Health and Human Services told staff their roles were “either unnecessary or virtually identical to duties being performed elsewhere in the agency.”

Marti Merritt, a project coordinator at the Illinois state health department, was flabbergasted that she and other state employees had invested more than a year into the surveys only to have them go dark in the final phase. “It’s like the data has gone into a black hole,” she said. “How do you set priorities if you don’t have data?”

Merritt worries that if the surveys don’t resume, limited budgets will be misspent — and that cases will rise. Data allows health departments to tailor their efforts to the populations at greatest risk of infection or disease progression.

Evidence shows that preventing HIV is far cheaper than treating people once they’re infected. Preventing one HIV infection results in $466,000 in lifetime savings. Merritt was also dismayed to have wasted the time of thousands of people who opened up about intimate details of their lives in hopes of fighting the HIV epidemic.

A doctor and HIV expert reinstated at the CDC this week said the late termination of the surveys would waste millions of taxpayer dollars that have already been spent on data collection. Two large, long-standing efforts, the Medical Monitoring Project and the National HIV Behavioral Surveillance system, cost around $72 million, he said.

“Two years’ worth of data from 30,000 participants will be unusable, and therefore wasted,” if the projects can’t be finished, he said.

To resume the surveys, he and other CDC researchers would need a green light from higher up because the grants covering these surveys ended while they were on administrative leave in May.

State health officials said they haven’t received the CDC notices that typically renew the surveys every June. Merritt has conducted interviews for the Medical Monitoring Project for about 20 years, she said, but the Illinois health department has now assigned her to other tasks. Other health departments have laid off or reassigned employees dedicated to HIV surveillance, too.

If HHS allows the reinstated researchers to resume the projects, they could try to account for the 10-week gap in their analysis. But it would take time, further delaying the next round of surveys — if those begin at all.

“These surveys aren’t lights that you turn on and off,” said John Brooks, a researcher who retired from the CDC’s Division of HIV Prevention last year. If the surveys resume, he said, “we can get some value out of all of the money spent.”

However, the surveys would be further impaired by actions related to Trump’s executive orders targeting words such as “gender” that researchers use to learn who has HIV, who is at risk, and why.

Experts at the CDC said they’ve already had to revise earlier surveys and recalculate results to not reference gender. This has meant altering data on two populations disproportionately affected by HIV: transgender people and men who have sex with men.

“To erase people from our data harms them,” said the researcher and doctor now reinstated at the CDC. “I care about the transgender patients I see, and it’s so hurtful to see them treated this way by the government.”

The doctor said he has treated HIV patients since the beginning of the epidemic in the 1980s, and the sting he feels now is worse than under President Ronald Reagan, who never publicly mentioned HIV in his first term.

“There was a lack of funding,” he said, “but they didn’t censor science or try to control science like they’re doing now.”

Many HIV researchers have taken jobs outside the government or moved since the April layoffs. Some researchers returning to the agency called the reinstatements perplexing because the notices don’t say what they’ll be doing when they return and for how long.

A terse email to CDC employees from Tom Nagy, chief human capital officer at the Department of Health and Human Services, reviewed by KFF Health News, simply refers to the notice regarding the reduction in force and says, “That notice is hereby revoked.”

In an email response to queries, Andrew Nixon, HHS director of communications, wrote, “HHS is streamlining operations without compromising mission-critical work. Enhancing the health and well-being of all Americans remains our top priority.”

“We’ve been getting paid this whole time even though we’ve not been allowed to work, and that doesn’t feel good when you’re a dedicated civil servant,” said one reinstated employee.

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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

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The Host Julie Rovner KFF Health News @jrovner @julierovner.bsky.social 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.

After explicitly promising senators during his confirmation hearing that he would not interfere in scientific policy over which Americans should receive which vaccines, Health and Human Services Secretary Robert F. Kennedy Jr. this week fired every member of the Advisory Committee on Immunization Practices, the group of experts who help the Centers for Disease Control and Prevention make those evidence-based judgments. Kennedy then appointed new members, including vaccine skeptics, prompting alarm from the broader medical community.

Meanwhile, over at the National Institutes of Health, some 300 employees — many using their full names — sent a letter of dissent to the agency’s director, Jay Bhattacharya, saying the administration’s policies “undermine the NIH mission, waste our public resources, and harm the health of Americans and people across the globe.”

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Sarah Karlin-Smith of the Pink Sheet, and Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine.

Panelists Anna Edney Bloomberg News @annaedney @annaedney.bsky.social Read Anna's stories. Sarah Karlin-Smith Pink Sheet @SarahKarlin @sarahkarlin-smith.bsky.social Read Sarah's stories. Joanne Kenen Johns Hopkins University and Politico @JoanneKenen @joannekenen.bsky.social Read Joanne's bio.

Among the takeaways from this week’s episode:

• After removing all 17 members of the vaccine advisory committee, Kennedy on Wednesday announced eight picks to replace them — several of whom lack the expertise to vet vaccine research and at least a couple who have spoken out against vaccines. Meanwhile, Sen. Bill Cassidy of Louisiana, the Republican head of the chamber’s health committee, has said little, despite the fact that Kennedy’s actions violate a promise he made to Cassidy during his confirmation hearing not to touch the vaccine panel.
• In other vaccine news, the Department of Health and Human Services has canceled private-sector contracts exploring the use of mRNA technology in developing vaccines for bird flu and HIV. The move raises concerns about the nation’s readiness against developing and potentially devastating health threats.
• Hundreds of NIH employees took the striking step of signing a letter known as the “Bethesda Declaration,” protesting Trump administration policies that they say undermine the agency’s resources and mission. It is rare for federal workers to use their own names to voice public objections to an administration, let alone President Donald Trump’s, signaling the seriousness of their concerns.
• Lawmakers have been considering adding Medicare changes to the tax-and-spend budget reconciliation legislation now before the Senate — specifically, targeting the use of what’s known as “upcoding.” Curtailing the practice, through which medical providers effectively inflate diagnoses and procedures to charge more, has bipartisan support and could increase the savings by reducing the amount the government pays for care.

Also this week, Rovner interviews Douglas Holtz-Eakin, president of the American Action Forum and former director of the Congressional Budget Office, to discuss how the CBO works and why it’s so controversial.

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

Julie Rovner: Stat’s “Lawmakers Lobby Doctors To Keep Quiet — or Speak Up — on Medicaid Cuts in Trump’s Tax Bill,” by Daniel Payne.  

Anna Edney: KFF Health News’ “Two Patients Faced Chemo. The One Who Survived Demanded a Test To See if It Was Safe,” by Arthur Allen.  

Sarah Karlin-Smith: Wired’s “The Bleach Community Is Ready for RFK Jr. To Make Their Dreams Come True,” by David Gilbert.  

Joanne Kenen: ProPublica’s “DOGE Developed Error-Prone AI Tool To ‘Munch’ Veterans Affairs Contracts,” by Brandon Roberts, Vernal Coleman, and Eric Umansky.  

Also mentioned in this week’s podcast:

• The Hill’s “Cassidy in a Bind as RFK Jr. Blows Up Vaccine Policy,” by Nathaniel Weixel.
• JAMA Pediatrics’ “Firearm Laws and Pediatric Mortality in the US,” by Jeremy Samuel Faust, Ji Chen, and Shriya Bhat.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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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Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

A podcast producer and director emeritus of WOUB Public Media zeroed in on our article about restless doctors, sharing his thoughts on X:

This must be Trump and Kennedy's idiotic plan to make American Healthy Again…https://t.co/jABfhALnXI

— Tom Hodson (@thodson) May 29, 2025

— Tom Hodson, Athens, Ohio

Oh, Canada Welcomes American Doctors!

The article “American Doctors Are Moving to Canada To Escape the Trump Administration” (May 30) presents us Canadians with welcome news. In every part of Canada, in every province, there are not enough doctors. In our city of Victoria, for instance, many people do not have a family doctor because so many doctors have retired; those who are left are unable to take new patients because their lists are full. Walk-in clinics are overbooked, the emergency rooms at the hospitals all have overfull waiting rooms and doctors and nurses are doing 12-hour or longer shifts. We need doctors and will welcome American doctors here with wide-open arms.

There are many aspects of Canada’s health system that could help lure American doctors to join us. The mortality rate for infants and mothers in the USA is worse than in Cuba. Ours is much better. We do not have a director of national health preaching against the use of vaccination. Our national record for health care during the covid pandemic emergency was second to none. Our women’s clinics are not plagued by political ideology. Our society has always been more open than that of the USA to immigrants and others of all races.

Doctors who agree to work for the armed forces receive special benefits. The experience is known to be valuable and rewarding.

I would also recommend Quebec as a great place to live and work. This would present a valuable opportunity for doctors and their families to learn French. France has a wonderful health service and would be a great place for family members to study and work. Germany is also a great place for medicine and health care. An added plus, besides learning the German language, is that the medical schools and universities, once they accept students, including foreigners, do not charge tuition. No post-graduation debt in Germany. That has proved to be a great policy for Germany. It attracts brainy students from all over the world and ensures the continuing high level of the German health system.

American doctors, Canada is an excellent option for escaping from the threat of autocracy. It can be a very positive step to leave the USA after realizing that the world is open to you and your family. Canada fits Americans comfortably. As our Prime Minister Mark Carney told President Donald Trump in his Oval Office, “Canada will never, never, never be your 51st state.” So, American doctors, pack your luggage, come on over and join us. We will welcome you very warmly and help you in every way we can!

— Philip Maxwell, Victoria, British Columbia

A Seattle reader delivered a diagnosis on X:

So I guess this article and the Dr. Interviewed are far left progressive. The US is better off without them.https://t.co/N7e3UZrb6A

— Daniel Arroyo (@danielarrmaga) May 29, 2025

— Daniel Arroyo, Seattle

Tellin’ It Like It Is, Baby

The article “The New Old Age: Honey, Sweetie, Dearie: The Perils of Elderspeak” (May 9), hit home for me.

Several years ago, my health plan referred me to an ophthalmologist’s practice. After one appointment, the woman who was supposed to schedule me for my next one called me “Sweetie.” I don’t remember what I said, but I took umbrage and walked out.

There were other problems (the doctor who examined me didn’t introduce himself, for one thing). I went home and wrote a complaint letter to my health plan. They gave me another referral and reported the practice to Medicare.

I only wish I had read this article a month ago. I had a biopsy in a hospital last month, and one of the nurses spoke to me as if I were a 2-year-old. I would have been prepared to deal with this then.

— Sue Kamm, Los Angeles

The director of the Pitt Band at the University of Pittsburgh threw down the gauntlet on X:

Any who addresses me with "Elderspeak" will be dealt with harshly. You've been warned.https://t.co/iaHAfVlCqN

— Harry Bloomberg (@pittbandphoto) May 3, 2025

— Harry Bloomberg, Pittsburgh

Don’t Gamble With Children’s Lives

Concerning Health and Human Services Secretary Robert F. Kennedy Jr.’s recommendation that healthy children needn’t receive the covid vaccine (“Trump’s Team Cited Safety in Limiting Covid Shots. Patients, Health Advocates See More Risk,” May 23), have pre-vaccine complications such as multisystem inflammatory syndrome in children been forgotten? A western Michigan child lost both hands and both feet to MIS-C and will go through life with prostheses. Please remind people of these serious complications which, though infrequent, cannot be reversed. Not vaccinating is playing Russian roulette with your child!

— Gloria Kohut, Grand Rapids, Michigan

An upbraiding on X came from a reader Down Under:

This decision – apparently made without any expert consultation – will have international ramifications, especially among the vaccine sceptical. https://t.co/hOaOuWBX3T

— Lesley Russell Wolpe (@LRussellWolpe) May 27, 2025

— Lesley Russell Wolpe, Sydney, Australia

Core to California’s Prosperity: The Fruits of Immigrant Labor

I found your article to be incomplete when it comes to offering the perspective of undocumented immigrants (“After Promising Universal Health Care, California Governor Must Reconsider Immigrant Coverage,” May 13). According to the Institute on Taxation and Economic Policy, undocumented immigrants contribute $8.5 billion to the California economy. It is disingenuous to present the cost of medical expansion to undocumented immigrants as a type of handout, when it is widely known that undocumented immigrants work without any prospect of receiving the benefits of their work in social programs. The fact that Gov. Gavin Newsom made the effort to expand benefits to undocumented workers was the right thing to do, and we should work toward rearranging funding to continue the expansion and not retrench during a time when unidentified people are apprehending undocumented workers on their way to work and more than ever face the possibility of suffering human rights abuses. If you, as a news organization, don’t do them justice by inserting their contributions into the discussion, then you are being complacent to their dehumanization.

I grew up in Oxnard, California, and my entire life was surrounded by the fruits of farmworkers’ labor, many of whom were undocumented. If you drive up and down Rice Road at 5 a.m. every day, you will see hard-working people who, during the wintertime, have to stay during the night to warm up the crops. That type of love and dedication to their work — not for their benefit, but for their families and the state of California — should be recognized. I invite your readers to look for “Fresh Fruit, Broken Bodies” by Seth Holmes to start understanding the physical toll that working in the fields takes on young immigrants, even when they arrive as healthy bodies. Still, after years of working in the fields, they face a multitude of health problems and overall physical deterioration. They give their bodies in exchange for an American dream that may or may not materialize.

Undocumented farmworkers fill just one essential sector of the American labor economy that does not stop even during fires or pandemics, so please do better in highlighting the humanity of folks who are more than just the work they produce. It is essential to state that if it weren’t for their cheap labor, the Golden State would not be so golden. Look at Florida, where the criminalization of undocumented workers is leading to labor shortages now intended to be filled by children.

Health care is a minimum that can be provided for undocumented workers, not because of any other reason than health care is a human right, and undocumented workers pay their fair share in unclaimed social benefits. Health care for all!

— Jennifer Diana Figueroa, Oxnard, California

A sociologist who directs social policy at the Niskanen Center, a nonpartisan think tank, weighed in on X:

No matter what advocates told themselves and policymakers, it was never politically sustainable:“It’s making people look at the health care that they can’t afford and ask, ‘Why the hell are we giving it for free to people who are here illegally?’” https://t.co/uOUIqhJJKJ

— Josh McCabe (@JoshuaTMcCabe) May 14, 2025

— Josh McCabe, Lowell, Massachusetts

Improving a Prisoner’s Life Sentence

I was very impressed with “Prisons Routinely Ignore Guidelines on Dying Inmates’ End-of-Life Choices” (May 15), authored by Renuka Rayasam. I have visited prison twice: once to San Quentin as a member of the Berkeley YMCA wrestling team in 1963.

Then, in 1999, I was privileged to be appointed to a new American Hospital Association committee, the Circle of Life Awards Committee, which was created to recognize the most outstanding and innovative hospice and palliative care programs in the country. Among the many applicants in the first year was the Louisiana State Penitentiary Hospice, and it was selected as one of five finalists for a site visit in 2000. I indicated my interest in being a member of the site visit team. This prison, commonly known as Angola, is the nation’s largest maximum-security facility, and we were told prisoners sentenced to life will die there because there was no parole in Louisiana for such a sentence. We were also informed that there was a long waiting list of inmates wanting to be hospice volunteers because the program was so highly valued.

My most distinct memory of our visit was a conversation with a volunteer who said he had just come from bathing and feeding a terminally ill inmate who said, “I love you.” The volunteer was visibly emotional when noting he had never heard these words before, not from his father whom he never met nor even his mother. These comments clearly demonstrated the beneficiaries of the program were not just the patients; they were also the volunteers.

— Paul B. Hofmann, Moraga, California

On X, another reader from Australia dove into a discussion about fluoridation of drinking water in response to our coverage:

https://t.co/Um9QawAqKDRFK making tooth decay great again

— Dan Jago (@dj1au) March 28, 2025

— Dan Jago, Melbourne, Australia

How Fluoride May Hijack Thyroid Health

Stories about fluoride seem not to mention the chemical’s impact on thyroid health (“With Few Dentists and Fluoride Under Siege, Rural America Risks New Surge of Tooth Decay,” March 27). This seems an oversight because it’s estimated that 10%-20% of the population will have thyroid issues in their lifetimes.

When I was an unmedicated hypothyroid person — not taking any supplemental thyroid hormone — I frequently had cavities. After filling the cavity, my dentist would do me the favor of treating my teeth with fluoride. And then followed a period of lassitude so severe I felt my job was at stake, definitely placing me in the “fat and lazy” category, as described by Ozark Mountain Regional Public Water Authority Chairman Andy Anderson in your article. It took me several treatments to make the connection.

I don’t get cavities now and haven’t for about 20 years. I think my now-appropriate dosage of supplemental thyroid plays a role in that.

Studies about thyroid and fluoride vary in their conclusions. Thyroid deficiencies can have widely varied effects on our widely varied population. There may never be widely accepted guidelines. But people should be careful about what they put in their bodies.

— Joy Mullett, Houston

A self-described information technology health care entrepreneur stated his opinion simply while sharing the article on X:

FLOURIDE is poison!https://t.co/Oaw0p1JG4N Daily Health Policy Report&utm_medium=email&_hsenc=p2ANqtz–TOtkdDDnhvAyd8nDZIAFejJobpsKBnLP5smKnlslyZjSC6tT9BHFfvtjE8tnngMhNn7huZCl4MKi1CdAi0QtZkvWmew&_hsmi=353879828&utm_content=353879828&utm_source=hs_email

— Earl Winter (@EarlWinter8) March 27, 2025

— Earl Winter, Nashville, Tennessee

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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Major changes could be in store for the more than 24 million people with health coverage under the Affordable Care Act, including how and when they can enroll, the paperwork required, and, crucially, the premiums they pay.

A driver behind these changes is the “One Big Beautiful Bill,” the name given to spending and tax legislation designed to advance the policy agenda of President Donald Trump. It passed the House on May 22 and is pending in the Senate.

The changes also would come from regulations the Trump administration proposed in March and the potential expiration of larger premium subsidies put in place during the covid-19 pandemic.

Millions of people might drop or lose coverage by 2034 as a result, according to the nonpartisan Congressional Budget Office.

Combined, the moves by Trump and his allies could “devastate access” to ACA plans, said Katie Keith, director of the Center for Health Policy and the Law at the O’Neill Institute, a health policy research group at Georgetown University.

States that run their own Obamacare marketplaces and the National Association of Insurance Commissioners have also raised concerns about added costs and reduced access. But House Republicans and some conservative think tanks say the ACA needs revamping to rein in fraud, part of which they pin on certain Biden administration changes the measures would undo.

Senate Republicans must now weigh whether to include the House’s proposals in their own bill, with the aim of getting it through the chamber by July 4.

Here are four key ways Trump’s policies could undermine Obamacare enrollment and coverage.

More Enrollment Hoops

The House-passed One Big Beautiful Bill Act, which runs more than 1,000 pages, would create paperwork requirements that could delay access to tax credits for some enrollees, potentially raising the cost of their insurance.

More than 90% of ACA enrollees receive tax credits to defray monthly premiums for their coverage. There are two key provisions for them to watch.

One would end automatic reenrollment for most ACA policyholders each year. More than 10 million people were automatically reenrolled in their coverage for the 2025 plan year, with their eligibility for tax credits confirmed via a system that allows ACA marketplaces to check government or other data sources.

The House bill would instead require every new or returning policyholder each year to provide information on income, household size, immigration status, and other factors, starting in 2028. If they don’t, they won’t get a premium tax credit, which could put the price of coverage out of reach.

“Everyone who wants to either purchase or renew a marketplace plan will have to come with a shoebox filled with documents, scan in and upload them or mail them in, and sit and wait while someone reviews and confirms them,” said Sabrina Corlette, a research professor and co-director of the Center on Health Insurance Reforms at Georgetown University.

She and other policy experts fear that many consumers will become uninsured because they don’t understand the requirements or find them burdensome. If too many young and healthy people, for example, decide it’s not worth the hassle, that could leave more older and sicker people for ACA insurers to cover — potentially raising premiums for everyone.

But supporters of the House bill say the current approach needs changing because it is vulnerable to waste, fraud, and abuse.

“This would ensure that enrollees need to return to the exchange to update their information and obtain an updated eligibility determination for a subsidy — best protecting the public against excess subsidies paid to insurers that can never be recovered,” the conservative Paragon Institute wrote in an April letter to top Department of Health and Human Services officials.

Having a Baby? Getting Married? Expect Coverage Delays

Today, people who experience life changes — losing a job, getting married or divorced, or having a baby, for instance — are considered provisionally eligible for tax credits to reduce their premiums if they sign up or change their ACA plans. That means they would be eligible to receive these subsidies for at least 90 days while their applications are checked against government data or other sources, or marketplaces follow up with requests for additional information.

The House bill would end that, requiring documentation before receiving tax credits. That could create particular hardship for new parents, who can’t confirm that babies are eligible for premium subsidies until they receive Social Security numbers weeks after they’re born.

Policy experts following the debate “did not expect the end to provisional eligibility,” Corlette said. “I don’t know what the reaction in the Senate will be, as I’m not sure everyone understands the full implications of these provisions because they are so new.”

It can take up to six weeks for the Social Security Administration to process a number for a newborn, and an additional two weeks for parents to get the card, according to a white paper that analyzed provisions of the House bill and was co-authored by Jason Levitis, a senior fellow at the Urban Institute, and Christen Linke Young, a visiting fellow with Brookings’ Center on Health Policy.

Without a Social Security number, any application to add a newborn to an ACA policy would automatically generate a hold on premium tax credits for that family, they wrote — increasing their out-of-pocket costs, at least temporarily.

“It puts consumers on the hook for any delays the marketplace is taking,” while the Centers for Medicare & Medicaid Services, which administers the ACA marketplaces, “is cutting staff and adding a lot more paperwork to burden the staff they have,” Levitis said.

Provisions in the House bill that would require ACA enrollees to provide information each year that they reenroll — or when seeking to add or change a policy due to a life circumstance — would increase the number of people without health insurance by 700,000 in 2034, according to the latest CBO estimate.

Less Time To Sign Up

The House bill would turn into law a Trump proposal to shorten the ACA open enrollment period. The start date would continue to be Nov. 1. But the window would be shortened by about a month, with an end date of Dec. 15. This affects people in states that use the federal marketplace as well as the 19 states and the District of Columbia that run their own, most of which offer open enrollment into at least mid-January.

Also, as soon as the end of this year, a special enrollment period the Biden administration created would be done away with. It allowed people with lower incomes — those who earn up to 1.5 times the 2024 federal poverty level, or about $38,730 for a family of three — to sign up anytime during the year.

Critics, including the Paragon Institute, argue that this enrollment opening led to fraud, partly blaming it for a steep increase last year in instances of insurance agents seeking commissions by enrolling or switching consumers into plans without their consent, or fudging their incomes to qualify them for tax credits so large they paid no monthly premiums at all.

But supporters — including some states that run their own ACA exchange — say there are other ways to address fraud.

“We anticipate that much of the improper activity can be prevented by security and integrity upgrades to the federal marketplace, which we understand the Centers for Medicare and Medicaid Services (CMS) is implementing,” the National Association of Insurance Commissioners wrote in a May 29 letter to congressional leaders.

Premiums and Out-of-Pocket Costs Will Likely Increase

The reason? Enhanced tax credits created during the pandemic expire at the end of the year. The House bill doesn’t extend them. Those more generous payments are credited with helping double ACA enrollment since 2020.

The CBO estimates that extending the subsidies would cost $335 billion over 10 years. The House bill instead funds an extension of Trump’s tax cuts, which largely benefit wealthier families.

If the enhanced credits are allowed to expire, not only would premium subsidies be smaller for many people, but there would also be an abrupt eligibility cutoff — an income cliff — for households above four times the federal poverty rate, or about $103,280 for a family of three for this plan year.

Taking into account the smaller subsidies and the cliff, KFF estimates a national average premium increase of 75% for enrollees if the enhanced subsidies expire. The CBO expects that about 4.2 million more people will be uninsured in 2034 as a result.

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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Rob Kennedy mingled with about a dozen other people in a community space in Clarks Summit, Pennsylvania.

The room, decorated with an under-the-sea theme, had a balloon arch decked out with streamers meant to look like jellyfish and a cloud of clear balloons mimicking ocean bubbles.

Kennedy comes to this memory cafe twice a month since being diagnosed with early onset Alzheimer’s disease in his late 50s.

Everyone here has a degree of memory loss or is a caregiver for someone with memory loss.

Attendees colored on worksheets with an underwater theme. They drank coffee and returned to the breakfast bar for seconds on pastries.

A quick round of trivia got everyone’s minds working.

“We start out with just little trivia — many of us cannot answer any of the questions,” Kennedy said with a laugh.

“We all have a good time going around,” he added. “You know, we all try to make it fun.”

The northeastern Pennsylvania memory cafe Kennedy attends is one of more than 600 around the country, according to Dementia Friendly America. The gatherings for people with cognitive impairment and their caregivers are relatively cheap and easy to run — often the only expense is a small rental fee for the space.

As state and local health departments nationwide try to make sense of what the potential loss of $11 billion of federal health funding will mean for the services they can offer their communities, memory cafe organizers believe their work may become even more important.

Losing Memory, and Other Things, Too

Kennedy’s diagnosis led him to retire, ending a decades-long career as a software engineer at the University of Scranton.

He recommends memory cafes to other people with dementia and their families.

“If they’re not coming to a place like this, they’re doing themselves a disservice. You got to get out there and see people that are laughing.”

The memory cafes he attends happen twice a month. They have given him purpose, Kennedy said, and help him cope with negative emotions around his diagnosis.

“I came in and I was miserable,” Kennedy said. “I come in now and it’s like, it’s family, it’s a big, extended family. I get to meet them. I get to meet their partners. I get to meet their children. So, it’s really nice.”

More than 6 million people in the U.S. have been diagnosed with some form of dementia. The diagnosis can be burdensome on relationships, particularly with family members who are the primary caregivers.

A new report from the Alzheimer’s Association found that 70% of caregivers reported that coordinating care is stressful. Socializing can also become more difficult after diagnosis.

“One thing I have heard again and again from people who come to our memory cafe is ‘all of our friends disappeared,’” said Beth Soltzberg, a social worker at Jewish Family and Children’s Service of Greater Boston, where she directs the Alzheimer’s and related dementia family support program.

The inclusion of caregivers is what distinguishes memory cafes from other programs that serve people with cognitive impairment, like adult day care. Memory cafes don’t offer formal therapies. At a memory cafe, having fun together and being social supports the well-being of participants. And that support is for the patient and their caregiver — because both can experience social isolation and distress after a diagnosis.

A 2021 study published in Frontiers in Public Health indicated that even online memory cafes during the pandemic provided social support for both patients and their family members.

“A memory cafe is a cafe which recognizes that some of the clients here may have cognitive impairment, some may not,” said Jason Karlawish, a geriatrics professor at the University of Pennsylvania’s Perelman School of Medicine and the co-director of the Penn Memory Center.

Karlawish regularly recommends memory cafes to his patients, in part because they benefit caregivers as well.

“The caregiver-patient dyad, I find often, has achieved some degree of connection and enjoyment in doing things together,” Karlawish said. “For many, that’s a very gratifying experience, because dementia does reshape relationships.”

“That socialization really does help ease the stress that they feel from being a caregiver,” said Kyra O’Brien, a neurologist who also teaches at Penn’s Perelman School of Medicine. “We know that patients have better quality of life when their caregivers are under less stress.”

An Affordable Way To Address a Growing Problem

As the population grows older, the number of available family caregivers is decreasing, according to the AARP Public Policy Institute. The report found that the number of potential caregivers for an individual 80 or older will decrease significantly by 2050.

In 2024, the Alzheimer’s Association issued a report projecting a jump in dementia cases in the U.S. from an estimated 6.9 million people age 65 or older currently living with Alzheimer’s disease to 13.8 million people by 2060. It attributed this increase primarily to the aging of the baby boom generation, or those born between 1946 and 1964.

As cases of memory loss are projected to rise, the Trump administration is attempting to cut billions in health spending. Since memory cafes don’t rely on federal dollars, they may become an even more important part of the continuum of care for people with memory loss and their loved ones.

“We’re fighting off some pretty significant Medicaid cuts at the congressional level,” said Georgia Goodman, director of Medicaid policy for LeadingAge, a national nonprofit network of services for people as they age. “Medicaid is a program that doesn’t necessarily pay for memory cafes, but thinking about ensuring that the long-term care continuum and the funding mechanisms that support it are robust and remain available for folks is going to be key.”

The nonprofit MemoryLane Care Services operates two memory cafes in Toledo, Ohio. They’re virtually free to operate, because they take place in venues that don’t require payment, according to Salli Bollin, the executive director.

“That really helps from a cost standpoint, from a funding standpoint,” Bollin said.

One of the memory cafes takes place once a month at a local coffee shop. The other meets at the Toledo Museum of Art. MemoryLane Care Services provides the museum employees with training in dementia sensitivity so they can lead tours for the memory cafe participants.

The memory cafe that Rob Kennedy attends in Pennsylvania costs about $150 a month to run, according to the host organization, The Gathering Place.

“This is a labor of love,” said board member Paula Baillie, referring to the volunteers who run the memory cafe. “The fact that they’re giving up time — they recognize that this is important.”

The monthly budget goes toward crafts, books, coffee, snacks, and some utilities for the two-hour meetings. Local foundations provide grants that help cover those costs.

Even though memory cafes are inexpensive and not dependent on federal funding, they could face indirect obstacles because of the Trump administration’s recent funding cuts.

Organizers worry the loss of federal funds could negatively affect the host institutions, such as libraries and other community spaces.

Memory Cafe Hot Spot: Wisconsin

At least 39 states have hosted memory cafes recently, according to Dementia Friendly America. Wisconsin has the most — more than 100.

The state has a strong infrastructure focused on memory care, which should keep its memory cafes running regardless of what is happening at the federal level, according to Susan McFadden, a professor emerita of psychology at the University of Wisconsin-Oshkosh. She co-founded the Fox Valley Memory Project, which oversees 14 memory cafes.

“They’ve operated on the grassroots, they’ve operated on pretty small budgets and a lot of goodwill,” she said.

Since 2013, Wisconsin has also had a unique network for dementia care, with state-funded dementia care specialists for each county and federally recognized tribe in Wisconsin. The specialists help connect individuals with cognitive impairment to community resources, bolstering memory cafe attendance.

McFadden first heard about memory cafes in 2011, before they were popular in the United States. She was conducting research on memory and teaching courses on aging.

McFadden reached out to memory cafes in the United Kingdom, where the model was already popular and well connected. Memory cafe organizers invited her to visit and observe them in person, so she planned a trip overseas with her husband.

Their tour skipped over the typical tourist hot spots, taking them to more humble settings.

“We saw church basements and senior center dining rooms and assisted living dining rooms,” she said. “That, to me, is really the core of memory cafes. It’s hospitality. It’s reaching out to people you don’t know and welcoming them, and that’s what they did for us.”

After her trip, McFadden started applying for grants and scouting locations that could host memory cafes in Wisconsin.

She opened her first one in Appleton, Wisconsin, in 2012, just over a year after her transformative trip to the U.K.

These days, she points interested people to a national directory of memory cafes hosted by Dementia Friendly America. The organization’s Memory Cafe Alliance also offers training modules — developed by McFadden and her colleague Anne Basting — to help people establish cafes in their own communities, wherever they are.

“They’re not so hard to set up; they’re not expensive,” McFadden said. “It doesn’t require an act of the legislature to do a memory cafe. It takes community engagement.”

This article is part of a partnership with NPR and WVIA.

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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SACRAMENTO, Calif. — After decades of unsuccessful efforts to improve California prison conditions ruled unconstitutional and blamed for record-high suicides, advocates and a federal judge are betting that bonuses and better work accommodations will finally be enough to attract and keep the mental health providers needed to treat prisoners.

The funds come from nearly $200 million in federal fines imposed because of California’s lack of progress in hiring sufficient mental health staff. They are being used for hiring and retention bonuses, including an extra $20,000 for psychologists and psychiatric social workers — roles with the highest vacancy rates — and $5,000 boosts for psychiatrists and recreational therapists.

“I think it’s important to point out that this is the money that the state saved by not hiring people for these positions,” said Michael Bien, an attorney representing the roughly one-third of California prisoners with serious mental illness in a class action lawsuit. “And we know that not hiring caused suffering, harm, and even death.”

The cash is aimed at countering a scarcity of mental health workers in California and across the country. State officials blame this dearth of workers for their chronic inability to meet hiring levels required by the long-running suit — a failure that led a federal judge to hold top officials in contempt of court last year. The funds are being distributed after an appeals court upheld the contempt order in March, saying staffing shortages affect whether prisoners have access to “essential, even lifesaving, care.” The spending plan was jointly developed by attorneys representing prisoners and state officials.

Janet Coffman, a professor at the University of California-San Francisco Institute for Health Policy Studies, said planned improvements in working conditions should help with hiring, but she was skeptical of the impact of bonuses.

“What I don’t see is the sustained increases, the increases in salaries over the long term, which is what I think is probably more effective for retention than one-time bonuses,” Coffman said.

The state did not take that view. Its expert witness, labor economist Erica Greulich, testifying during the 2023 trial that led to the fines, said that higher salaries were unlikely to meaningfully increase hiring.

Facing a $12 billion deficit, Gov. Gavin Newsom in May proposed $767 million in salary reductions across state government that would “make it extremely difficult to fill chronically vacant mental health positions,” said Abdul Johnson, chief negotiator for the bargaining unit representing health and social service professionals in prisons and other agencies. He said he believes California should add longevity pay to retain veteran workers and pay more in areas with higher costs of living.

On the face of it, the salaries for mental health positions at California prisons are competitive with the private sector’s. For example, the range for a prison psychologist is $133,932 to $162,372, while the annual mean for psychologists in California ranged from $117,630 to $137,540 last year. The most recent state contract with prison psychiatrists already includes 15% bonuses, on top of other sweeteners, with a state salary range topping $360,000, nearly $34,000 above the California mean salary.

But California prisons are competing for behavioral health workers amid a roughly 40% shortage of psychologists and psychiatrists in the state, and that shortfall is expected to get worse. For more than a year before the court’s contempt ruling, the vacancy rate for psychologists never fell below 35% — the state is currently recruiting for nearly 300 such positions — while vacancies among social workers ranged from 17% to 29%.  The court ruling said the state oversaw “adequate” staffing for psychiatrists and recreation therapists but only periodically succeeded in reducing the vacancy rate below the 10% maximum allowed. Officials are in the process of adding several new positions that are eligible for the bonuses.

Further complicating the hiring push is that other organizations recruiting these professionals can offer more competitive packages, which can include signing bonuses and other perks, according to testimony during the 2023 trial.

The state is also adopting a new hybrid work policy that allows mental health staff to spend part of their time working remotely. The policy will let the state better compete with the private sector, particularly in the remote areas where many prisons are located, Coffman said.

Money from the fines will also go to improving a working environment that the appellate decision said “often took the form of windowless converted cells in old and unheated prisons.” One-time payments ranging from $50,000 to $300,000 are going to various prison mental health programs for things like new furniture and improvements to treatment and office spaces.

“Working in a prison is difficult and dangerous work,” Johnson said. “Our members constantly face threats, physical assaults, and extremely high caseloads.”

Angela Reinhold, a supervising psychiatric social worker at the California Correctional Institution in Tehachapi, said during the 2023 hearings that her office was in a closet, featuring furniture from “1970s at best.”

She compared her situation with that of a co-worker who had recently left for a safer, higher-paying job in the private sector.

“She’s very excited that she gets a bathroom with two-ply toilet paper, not to mention the other office equipment that’s state-of-the-art, and treatment space, and an office that has a view,” Reinhold said. “She’s not risking her safety with her patients, and she gets to telework three times a week.”

Alexandra David, chief of mental health at the California Medical Facility in Vacaville, described working in buildings without adequate heating or cooling, with leaky ceilings and flooded clinical offices.

“You know, it’s an old prison. There are smells and sometimes rodents,” David said during the same hearings.

The California Department of Corrections and Rehabilitation did not respond to requests for comment on the spending plan.

In what Bien characterized as a bid to avoid ill will, all prison mental health workers will benefit from the new expenditures, with current employees and new hires each receiving one-time $10,000 bonuses. All corrections department employees, not just mental health workers, are also eligible for $5,000 bonuses for referrals leading to new hires in understaffed areas. The state estimates that the bonuses will cost about $44 million, although the projection does not include the referral bonuses or bonuses paid to new employees hired during the year.

Future bonuses and other incentives are likely to depend on recommendations from a court-appointed receiver who is developing a long-term plan to bring the prison mental health system up to constitutional standards.

“We do think they have to do better with money, but money alone is not the answer here,” Bien said. “And so that’s why we’re trying to do these working-conditions things, as well as bonuses.”

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

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

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The Trump administration’s cancellation of $766 million in contracts to develop mRNA vaccines against potential pandemic flu viruses is the latest blow to national defense, former health security officials said. They warned that the U.S. could be at the mercy of other countries in the next pandemic.

“The administration’s actions are gutting our deterrence from biological threats,” said Beth Cameron, a senior adviser to the Brown University Pandemic Center and a former director at the White House National Security Council. “Canceling this investment is a signal that we are changing our posture on pandemic preparedness,” she added, “and that is not good for the American people.”

Flu pandemics killed up to 103 million people worldwide last century, researchers estimate.

In anticipation of the next big one, the U.S. government began bolstering the nation’s pandemic flu defenses during the George W. Bush administration. These strategies were designed by the security council and the Biomedical Advanced Research and Development Authority at the Department of Health and Human Services, among other agencies. The plans rely on rolling out vaccines rapidly in a pandemic. Moving fast hinges on producing vaccines domestically, ensuring their safety, and getting them into arms across the nation through the public health system.

The Trump administration is undermining each of these steps as it guts health agencies, cuts research and health budgets, and issues perplexing policy changes, health security experts said.

Since President Donald Trump took office, at least half of the security council’s staff have been laid off or left, and the future of BARDA is murky. The nation’s top vaccine adviser, Peter Marks, resigned under pressure in March, citing “the unprecedented assault on scientific truth.”

Most recently, Trump’s clawback of funds for mRNA vaccine development put Americans on shakier ground in the next pandemic. “When the need hits and we aren’t ready, no other country will come to our rescue and we will suffer greatly,” said Rick Bright, an immunologist and a former BARDA director.

Countries that produced their own vaccines in the covid-19 pandemic had first dibs on the shots. While the United States, home to Moderna and Pfizer, rolled out second doses of mRNA vaccines in 2021, hundreds of thousands of people in countries that didn’t manufacture vaccines died waiting for them.

The most pertinent pandemic threat today is the bird flu virus H5N1. Researchers around the world were alarmed when it began spreading among cattle in the U.S. last year. Cows are closer to humans biologically than birds, indicating that the virus had evolved to thrive in cells like our own.

As hundreds of herds and dozens of people were infected in the U.S., the Biden administration funded Moderna to develop bird flu vaccines using mRNA technology. As part of the agreement, the U.S. government stipulated it could purchase doses in advance of a pandemic. That no longer stands.

Researchers can make bird flu vaccines in other ways, but mRNA vaccines are developed much more quickly because they don’t rely on finicky biological processes, such as growing elements of vaccines in chicken eggs or cells kept alive in laboratory tanks.

Time matters because flu viruses mutate constantly, and vaccines work better when they match whatever variant is circulating.

Developing vaccines within eggs or cells can take 10 months after the genetic sequence of a variant is known, Bright said. And relying on eggs presents an additional risk when it comes to bird flu because a pandemic could wipe out billions of chickens, crashing egg supplies.

Decades-old methods that rely on inactivated flu viruses are riskier for researchers and time-consuming. Still the Trump administration invested $500 million into this approach, which was largely abandoned by the 1980s after it caused seizures in children.

“This politicized regression is baffling,” Bright said.

A bird flu pandemic may begin quietly in the U.S. if the virus evolves to spread between people but no one is tested at first. Indeed, the Centers for Disease Control and Prevention’s dashboard suggests that only 10 farmworkers have been tested for the bird flu since March. Because of their close contact with cattle and poultry, farmworkers are at highest risk of infection.

As with many diseases, only a fraction of people with the bird flu become severely sick. So the first sign that the virus is widespread might be a surge in hospital cases.

“We’d need to immediately make vaccines,” said Angela Rasmussen, a virologist at the University of Saskatchewan in Canada.

The U.S. government could scale up production of existing bird flu vaccines developed in eggs or cells. However, these vaccines target an older strain of H5N1 and their efficacy against the virus circulating now is unknown.

In addition to the months it takes to develop an updated version within eggs or cells, Rasmussen questioned the ability of the government to rapidly test and license updated shots, with a quarter of HHS staff gone. If the Senate approves Trump’s proposed budget, the agency faces about $32 billion in cuts.

Further, the Trump administration’s cuts to biomedical research and its push to slash grant money for overhead costs could undermine academic hospitals, rendering them unable to conduct large clinical trials. And its cuts to the CDC and to public health funds to states mean that fewer health officials will be available in an emergency.

“You can’t just turn this all back on,” Rasmussen said. “The longer it takes to respond, the more people die.”

Researchers suggest other countries would produce bird flu vaccines first. “The U.S. may be on the receiving end like India was, where everyone — rich people, too — got vaccines late,” said Achal Prabhala, a public health researcher in India at medicines access group AccessIBSA.

He sits on the board of a World Health Organization initiative to improve access to mRNA vaccines in the next pandemic. A member of the initiative, the company Sinergium Biotech in Argentina, is testing an mRNA vaccine against the bird flu. If it works, Sinergium will share the intellectual property behind the vaccine with about a dozen other groups in the program from middle-income countries so they can produce it.

The Coalition for Epidemic Preparedness Innovations, an international partnership headquartered in Norway, is providing funds to research groups developing rapid-response vaccine technology, including mRNA, in South Korea, Singapore, and France. And CEPI committed up to $20 million to efforts to prepare for a bird flu pandemic. This year, the Indian government issued a call for grant applications to develop mRNA vaccines for the bird flu, warning it “poses a grave public health risk.”

Pharmaceutical companies are investing in mRNA vaccines for the bird flu as well. However, Prabhala says private capital isn’t sufficient to bring early-stage vaccines through clinical trials and large-scale manufacturing. That’s because there’s no market for bird flu vaccines until a pandemic hits.

Limited supplies means the United States would have to wait in line for mRNA vaccines made abroad. States and cities may compete against one another for deals with outside governments and companies, like they did for medical equipment at the peak of the covid pandemic.

“I fear we will once again see the kind of hunger games we saw in 2020,” Cameron said.

In an email response to queries, HHS communications director Andrew Nixon said, “We concluded that continued investment in Moderna’s H5N1 mRNA vaccine was not scientifically or ethically justifiable.” He added, “The decision reflects broader concerns about the use of mRNA platforms—particularly in light of mounting evidence of adverse events associated with COVID-19 mRNA vaccines.”

Nixon did not back up the claim by citing analyses published in scientific journals.

In dozens of published studies, researchers have found that mRNA vaccines against covid are safe. For example, a placebo-controlled trial of more than 30,000 people in the U.S. found that adverse effects of Moderna’s vaccine were rare and transient, whereas 30 participants in the placebo group suffered severe cases of covid and one died.

More recently, a study revealed that three of nearly 20,000 people who got Moderna’s vaccines and booster had significant adverse effects related to the vaccine, which resolved within a few months. Covid, on the other hand, killed four people during the course of the study.

As for concerns about the heart issue, myocarditis, a study of 2.5 million people who got at least one dose of Pfizer’s mRNA vaccine revealed about 2 cases per 100,000 people. Covid causes 10 to 105 myocarditis cases per 100,000.

Nonetheless, HHS Secretary Robert F. Kennedy Jr., who founded an anti-vaccine organization, has falsely called covid shots “the deadliest vaccine ever made.” And without providing evidence, he said the 1918 flu pandemic “came from vaccine research.”

Politicized mistrust in vaccines has grown. Far more Republicans said they trust Kennedy to provide reliable information on vaccines than their local health department or the CDC in a recent KFF poll: 73% versus about half.

Should the bird flu become a pandemic in the next few years, Rasmussen said, “we will be screwed on multiple levels.”

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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JoEllen Zembruski-Ruple, while in the care of New York City’s renowned Memorial Sloan Kettering Cancer Center, swallowed the first three chemotherapy pills to treat her squamous cell carcinoma on Jan. 29, her family members said. They didn’t realize the drug could kill her.

Six days later, Zembruski-Ruple went to Sloan Kettering’s urgent care department to treat sores in her mouth and swelling around her eyes. The hospital diagnosed oral yeast infection and sent her home, her sister and partner said. Two days later, they said, she returned in agony — with severe diarrhea and vomiting — and was admitted. “Enzyme deficiency,” Zembruski-Ruple texted a friend.

The 65-year-old, a patient advocate who had worked for the National Multiple Sclerosis Society and other groups, would never go home.

Covered in bruises and unable to swallow or talk, she eventually entered hospice care and died March 25 from the very drug that was supposed to extend her life, said her longtime partner, Richard Khavkine. Zembruski-Ruple was deficient in the enzyme that metabolizes capecitabine, the chemotherapy drug she took, said Khavkine and Susan Zembruski, one of her sisters. Zembruski-Ruple was among about 1,300 Americans each year who die from the toxic effects of that pill or its cousin, the IV drug fluorouracil known as 5-FU.

Doctors can test for the deficiency — and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk. The FDA approved an antidote in 2015, but it’s expensive and must be administered within four days of the first chemotherapy treatment.

Newer cancer drugs sometimes include a companion diagnostic to determine whether a drug works with an individual patient’s genetics. But 5-FU went on the market in 1962 and sells for about $17 a dose; producers of its generic aren’t seeking approval for toxicity tests, which typically cost hundreds of dollars. Doctors have only gradually understood which gene variants are dangerous in which patients, and how to deal with them, said Alan Venook, a colorectal and liver cancer specialist at the University of California-San Francisco.

By the time Zembruski-Ruple’s doctors told her she had the deficiency, she had been on the drug for eight days, said Khavkine, who watched over his partner with her sister throughout the seven-week ordeal.

Khavkine said he “would have asked for the test” if he had known about it, but added “nobody told us about the possibility of this deficiency.” Zembruski-Ruple’s sister also said she wasn’t warned about the fatal risks of the chemo, or told about the test.

“They never said why they didn’t test her,” Zembruski said. “If the test existed, they should have said there is a test. If they said, ‘Insurance won’t cover it,’ I would have said, ‘Here’s my credit card.’ We should have known about it.”

Guidance Moves at a Glacial Pace

Despite growing awareness of the deficiency, and an advocacy group made up of grieving friends and relatives who push for routine testing of all patients before they take the drug, the medical establishment has moved slowly.

A panel of the National Comprehensive Cancer Network, or NCCN — specialists from Sloan Kettering and other top research centers — until recently did not recommend testing, and the FDA does not require it.

In response to a query from KFF Health News about its policy, Sloan Kettering spokesperson Courtney Nowak said the hospital treats patients “in accordance with NCCN guidelines.” She said the hospital would not discuss a patient’s care.

On Jan. 24, the FDA issued a warning about the enzyme deficiency in which it urged health care providers to “inform patients prior to treatment” about the risks of taking 5-FU and capecitabine.

On March 31 — six days after Zembruski-Ruple’s death — the network’s expert panel for most gastrointestinal cancers took a first step toward recommending testing for the deficiency.

Worried that President Donald Trump’s FDA might do nothing, Venook said, the panel — whose guidance shapes the practices of oncologists and health insurers — recommended that doctors consider testing before dosing patients with 5-FU or capecitabine.

However, its guidance stated that “no specific test is recommended at this time,” citing a lack of data to “inform dose adjustments.”

Sloan Kettering “will consider this guidance in developing personalized treatment plans for each patient,” Nowak told KFF Health News.

The new NCCN guidance was “not the blanket recommendation we were working toward, but it is a major step toward our ultimate goal,” said Kerin Milesky, a public health official in Brewster, Massachusetts, who’s part of an advocacy group for testing. Her husband, Larry, died two years ago at age 73 after a single treatment of capecitabine.

European drug regulators began urging oncologists to test patients for deficiency in May 2020. Patients with potentially risky genetics are started on a half-dose of the cancer drug. If they suffer no major toxicity, the dose is increased.

A Lifesaving Ultimatum?

Emily Alimonti, a 42-year-old biotech salesperson in upstate New York, chose that path before starting capecitabine treatment in December. She said her doctors — including an oncologist at Sloan Kettering — told her they didn’t do deficiency testing, but Alimonti insisted. “Nope,” she said. “I’m not starting it until I get the test back.”

The test showed that Alimonti had a copy of a risky gene variant, so doctors gave her a lower dose of the drug. Even that has been hard to tolerate; she’s had to skip doses because of low white blood cell counts, Alimonti said. She still doesn’t know whether her insurer will cover the test.

Around 300,000 people are treated with 5-FU or capecitabine in the United States each year, but its toxicity could well have prevented FDA approval were it up for approval today. Short of withdrawing a drug, however, U.S. regulators have little power to manage its use. And 5-FU and capecitabine are still powerful tools against many cancers.

At a January workshop that included FDA officials and cancer specialists, Venook, the NCCN panel’s co-chair, asked whether it was reasonable to recommend that doctors obtain a genetic test “without saying what to do with the result.”

But Richard Pazdur, the FDA’s top cancer expert, said it was time to end the debate and commence testing, even if the results could be ambiguous. “If you don’t have the information, how do you have counseling?” he asked.

Two months later, Venook’s panel changed course. The price of tests has fallen below $300 and results can be returned as soon as three days, Venook said. Doubts about the FDA’s ability to further confront the issue spurred the panel’s change of heart, he said.

“I don’t know if FDA is going to exist tomorrow,” Venook told KFF Health News. “They’re taking a wrecking ball to common sense, and that’s one of the reasons we felt we had to go forward.”

On May 20, the FDA posted a Federal Register notice seeking public input on the issue, a move that suggested it was considering further action.

Venook said he often tests his own patients, but the results can be fuzzy. If the test finds two copies of certain dangerous gene variants in a patient, he avoids using the drug. But such cases are rare — and Zembruski-Ruple was one of them, according to her sister and Khavkine.

Many more patients have a single copy of a suspect gene, an ambiguous result that requires clinical judgment to assess, Venook said.

A full-gene scan would provide more information but adds expense and time, and even then the answer may be murky, Venook said. He worries that starting patients on lower doses could mean fewer cures, especially for newly diagnosed colon cancer patients.

Power Should Rest With Patients

Scott Kapoor, a Toronto-area emergency room physician whose brother Anil, a much-loved urologist and surgeon, died of 5-FU toxicity at age 58 in 2023, views Venook’s arguments as medical paternalism. Patients should decide whether to test and what to do with the results, he said.

“What’s better — don’t tell the patient about the test, don’t test them, potentially kill them in 20 days?” he said. “Or tell them about the testing while warning that potentially the cancer will kill them in a year?”

“People say oncologists don’t know what to do with the information,” said Karen Merritt, whose mother died after an infusion of 5-FU in 2014. “Well, I’m not a doctor, but I can understand the Mayo Clinic report on it.”

The Mayo Clinic recommends starting patients on half a dose if they have one suspect gene variant. And “the vast majority of patients will be able to start treatment without delays,” Daniel Hertz, a clinical pharmacologist from the University of Michigan, said at the January meeting.

Some hospitals began testing after patients died because of the deficiency, said Lindsay Murray, of Andover, Massachusetts, who has advocated for widespread testing since her mother was treated with capecitabine and died in 2021.

In some cases, Venook said, relatives of dead patients have sued hospitals, leading to settlements.

Kapoor said his brother — like many patients of non-European origin — had a gene variant that hasn’t been widely studied and isn’t included in most tests. But a full-gene scan would have detected it, Kapoor said, and such scans can also be done for a few hundred dollars.

The cancer network panel’s changed language is disappointing, he said, though “better than nothing.”

In video tributes to Zembruski-Ruple, her friends, colleagues, and clients remembered her as kind, helpful, and engaging. “JoEllen was beautiful both inside and out,” said Barbara McKeon, a former colleague at the MS Society. “She was funny, creative, had a great sense of style.”

“JoEllen had this balance of classy and playful misbehavior,” psychotherapist Anastatia Fabris said. “My beautiful, vibrant, funny, and loving friend JoEllen.”

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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Despite years of patient complaints and quality-of-care concerns, Ballad Health — the nation’s largest state-sanctioned hospital monopoly — will now be held to a lower standard by the Tennessee government, and state data that holds the monopoly accountable will be kept from the public for two years.

Ballad is the only option for hospital care for most of the approximately 1.1 million people in a 29-county swath of Appalachia. Such a monopoly would normally be prohibited by federal law. But under deals negotiated with Tennessee and Virginia years ago, the monopoly is permitted if both states affirm each year that it is an overall benefit to the public.

However, according to a newly renegotiated agreement between Ballad and Tennessee, the monopoly can now be considered a “clear and convincing” benefit to the public with performance that would earn a “D” on most A-to-F grading scales.

And the monopoly can be allowed to continue even with a score that most would consider an “F.”

“It’s an extreme disservice to the people of northeast Tennessee and southwest Virginia,” said Dani Cook, who has organized protests against Ballad’s monopoly for years. “We shouldn’t have lowered the bar. We should be raising the bar.”

The Ballad monopoly, which encompasses 20 hospitals and straddles the border of Tennessee and Virginia, was created in 2018 after lawmakers in both states, in an effort to prevent hospital closures, waived federal antitrust laws so two rival health systems could merge. Although Ballad has largely succeeded at keeping its hospitals open, staffing shortages and patient complaints have left some residents wary, afraid, or unwilling to seek care at Ballad hospitals, according to an investigation by KFF Health News published last year.

In Tennessee, the Ballad monopoly is regulated through a 10-year Certificate of Public Advantage agreement, or COPA — now in its seventh year — that establishes the state’s goals and a scoring rubric for hospital performance. Tennessee Department of Health documents show Ballad has fallen short of about three-fourths of the state’s quality-of-care goals over the past four fiscal years. But the monopoly has been allowed to continue, at least in part, because the scoring rubric doesn’t prioritize quality of care, according to the documents.

Angie Odom, a county commissioner in Tennessee’s Carter County, where leaders have clashed with Ballad, said she has driven her 12-year-old daughter more than 100 miles to Knoxville to avoid surgery at a Ballad hospital.

After years of disappointment in Tennessee’s oversight of the monopoly, Odom said she was “not surprised” by Ballad’s new grading scale.

“They’ve made a way that they can fail and still pass,” she said.

Virginia regulates Ballad with a different agreement and scoring method, and its reviews generally track about one or two years behind Tennessee’s. Both states have found Ballad to be an overall benefit in every year they’ve released a decision.

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More from ‘The Only Hospital in Town’

Neither Ballad Health nor the Tennessee Department of Health, which has the most direct oversight of the monopoly, answered questions submitted in writing about the renegotiated agreement. In an emailed statement, Molly Luton, a Ballad spokesperson, said the company’s quality of care has steadily improved in recent years, and she raised repeated complaints from the hospital system about KFF Health News’ reporting. The news organization has reviewed every complaint from Ballad and has never found a correction or clarification to be warranted in the coverage.

Tennessee Health Commissioner Ralph Alvarado, who has more than once described the regulation of Ballad Health as a matter of national importance, has declined or not responded to more than a dozen interview requests from KFF Health News to discuss the monopoly.

“Our effort and progress serve as a model for health care in Tennessee, the Appalachia Region, and the entire nation,” Alvarado said in a May news release about the monopoly, adding, “We do not take our role lightly as we remain committed to transparency in our COPA oversight.”

Tennessee’s revised agreement was negotiated behind closed doors for more than a year and announced to the public in early May. As part of that announcement, Tennessee said it wouldn’t score Ballad next year, to give the company time to adjust to the new scoring process.

Under that process, the minimum score Ballad needs to meet to show a “clear and convincing” public benefit has been lowered from 85 out of 100 to 70 out of 100. The new agreement also awards Ballad up to 20 points for providing Tennessee with data and records — for example, a report on patient satisfaction — regardless of the level of performance documented. The state can also raise or lower Ballad’s overall score by up to 5 points in light of “reputable information” that is not spelled out in the scoring rubric.

Therefore, Ballad can score as low as 65 out of 100, with nearly a third of that score awarded for merely giving information to the state, and still be found to be a “clear and convincing” benefit to the public, which is the highest finding Tennessee can bestow, according to the agreement. And Ballad could score as low as 55 out of 100 without the monopoly facing a risk of being broken up, according to the new agreement.

The agreement also increases how much of Ballad’s annual score is directly attributed to the quality of care provided in its hospitals, from 5% to 32%. But the agreement obscures how this will be measured.

Tennessee sets “baseline” goals for Ballad across dozens of quality-of-care issues — like infection rates and speed of emergency room care — and then tracks whether Ballad meets the goals. The new agreement resets these baselines to values that were not made public, leaving it unclear how much the goals for Ballad have changed. Health department spokesperson Dean Flener said the new baselines would not be disclosed until 2027.

Cook, the longtime leader of protests against Ballad, said she believes Tennessee is attempting to silence data-supported criticism until the final year of the 10-year COPA agreement, which ends in 2028.

By then, any outrage would be largely moot, she said.

“If you are going to wait until the last year to tell us the new measurements, why bother?” Cook said. “It is clear, without a shadow of a doubt, that the Tennessee Department of Health is putting the needs and concerns of a corporation above the health and well-being of people.”

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The Trump administration’s anti-regulatory approach and cost-cutting moves risk unraveling a critical system of checks and balances that helps ensure the safety of the U.S. food supply, industry experts told KFF Health News. 

An E. coli outbreak that occurred late last year — for which the investigation was concluded in February — signals how, with the FDA changes, more people could get sick with foodborne illnesses as companies and growers face less regulatory oversight and fewer consequences for selling tainted food products, according to interviews with consumer advocates, researchers, and former employees at the FDA and U.S. Department of Agriculture. 

In addition, the administration withdrew a proposed regulation to reduce the presence of salmonella in raw poultry, a plan that could have saved more than $13 million annually by preventing roughly 3,000 illnesses. It is also disbanding a Department of Justice unit that pursues civil and criminal actions against companies that sell contaminated food and is reassigning its attorneys, according to a former FDA official, a publicly posted memo from the head of the department’s criminal division, and a white paper by the law firm Gibson Dunn. 

“It’s all about destruction and not about efficiency,” said Siobhan DeLancey, who worked in the agency’s Office of Foods and Veterinary Medicine for more than 20 years before being laid off in April. “We’re going to see the effects for years. It will cost lives.” 

Officials from the Department of Health and Human Services did not comment on the record for this article but have maintained that food safety is a priority. 

Staffing cuts mean delays in publicizing deadly outbreaks, said Susan Mayne, an adjunct professor at the Yale School of Public Health who retired from the FDA in 2023. DeLancey said new requirements from the Trump administration for reviewing agency announcements became so arduous that it took weeks to get approval for alerts that should have been going out much sooner. 

The November 2024 outbreak caused by E. coli bacteria in lettuce sickened nearly 90 people and killed one person. But after the investigation was completed under the Trump administration, the FDA redacted any information identifying the grower or processor. The FDA said in its February internal summary that the grower wasn’t named because no product remained on the market. 

The information is still important because it can prevent further cases, pressure growers to improve sanitation, and identify repeat offenders, said Bill Marler, a Seattle lawyer who specializes in food-safety litigation. 

“The whole ‘Make America Healthy Again,’ the focus on taking food color dyes out of cereal?” said Chris George, of Avon, Indiana, whose son was hospitalized in the outbreak. “How about we take E. coli out of our lettuce, so it doesn’t kill our kids?”

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A principios de este año, cuando el presidente Donald Trump comenzaba a remodelar el gobierno, Michael, un médico de emergencias nacido, criado y formado en Estados Unidos, hizo las maletas y se marchó con su familia.

Michael trabaja ahora en un pequeño hospital de un pueblo de Canadá. KFF Health News y NPR le han concedido el anonimato por temor a que pueda sufrir represalias por parte de la administración Trump si regresa a Estados Unidos.

Afirma que se siente culpable por no haberse quedado para resistir la agenda de Trump, pero está convencido de su decisión de marcharse. Dice que una gran parte del país se ha acostumbrado a un ambiente de violencia y crueldad.

“Parte de ser médico tiene que ver con el afecto hacia las personas que se encuentran en una situación de mayor debilidad”, afirmó Michael. “Creo que en estos momentos nuestro país ha retrocedido y pisotea a las personas débiles y vulnerables”.

Michael forma parte de una nueva ola de médicos que ha decidido abandonar Estados Unidos para escapar de la administración Trump.

En los meses transcurridos desde que Trump fue reelegido y regresó a la Casa Blanca, los médicos estadounidenses han mostrado un interés creciente por obtener la licencia en Canadá, donde ya se ha autorizado a ejercer a un número mayor de lo habitual, según funcionarios canadienses encargados de la concesión de licencias y empresas de contratación.

El Consejo Médico de Canadá afirmó en un comunicado por correo electrónico que el número de médicos estadounidenses que han creado cuentas en physiciansapply.ca, que suele ser el “primer paso” para obtener la licencia en Canadá, ha aumentado más del 750% en los últimos siete meses en comparación con el mismo período del año pasado, pasando de 71 solicitantes a 615.

Por otra parte, las organizaciones de concesión de licencias médicas de las provincias más pobladas de Canadá informaron de un aumento de los estadounidenses que solicitan o reciben licencias canadienses, y algunos de esos médicos revelaron que se mudaban específicamente por Trump.

“Los médicos con los que hablamos se avergüenzan de decir que son estadounidenses”, dijo John Philpott, CEO de CanAm Physician Recruiting, que recluta médicos para Canadá. “Lo dicen nada más llegar: ‘Tengo que irme de este país. Ya no es lo que era’”.

Canadá, que tiene un sistema de salud universal financiado con fondos públicos, ha sido durante mucho tiempo una opción para los médicos formados en Estados Unidos que buscan una alternativa al sistema de salud estadounidense.

Aunque antes era más difícil para los médicos estadounidenses ejercer en Canadá debido a las diferencias en los estándares de formación médica, las provincias canadienses han relajado algunas normas para la concesión de licencias en los últimos años y algunas están agilizando el otorgamiento de licencias a los médicos formados en Estados Unidos.

En cuestión de meses, la administración Trump ha puesto en peligro la economía con su política de aranceles, ha ignorando órdenes judiciales y el debido proceso, y ha amenazado la soberanía de los aliados de Estados Unidos, incluido Canadá.

La administración también ha tomado medidas que pueden inquietar específicamente a los médicos, como nombrar a Robert F. Kennedy Jr. para dirigir las agencias federales de salud, desviar fondos destinados a la preparación para pandemias, desalentar la atención de la salud para los procedimientos de afirmación de género, demonizar el flúor y apoyar recortes profundos a Medicaid.

La administración Trump no ha querido hacer ningún comentario para este artículo. Cuando se le pidió que respondiera a la fuga de médicos de Estados Unidos a Canadá, el vocero de la Casa Blanca, Kush Desai, preguntó si KFF Health News conocía el número exacto de médicos y su “estatus de ciudadanía”, y luego no hizo ningún comentario más. KFF Health News no tenía ni proporcionó esa información.

Philpott, que fundó CanAm Physician Recruiting en la década de 1990, dijo que el movimiento transfronterizo de médicos estadounidenses y canadienses ha fluctuado durante décadas en respuesta a las circunstancias políticas y económicas, pero que el interés en Canadá nunca había sido tan fuerte como ahora.

Philpott afirmó que CanAm registró un aumento del 65% en el número de médicos estadounidenses que buscaban trabajo en Canadá entre enero y abril, y que la empresa estuvo recibiendo hasta 15 solicitudes de médicos estadounidenses al día.

Rohini Patel, reclutadora de CanAm y médica, dijo que algunos están dispuestos a aceptar salaries más bajos para poder mudarse rápidamente.

“Están listos para mudarse a Canadá mañana mismo”, afirmó. “No les preocupa cuál será su salario”.

El Colegio de Médicos y Cirujanos de Ontario, que se encarga de la concesión de licencias en la provincia más poblada de Canadá, dijo en un comunicado que registró a 116 médicos formados en Estados Unidos en el primer trimestre de 2025, lo que supone un aumento de al menos 50% con respecto a los dos trimestres anteriores.

British Columbia, otra provincia muy poblada, experimentó un aumento de las solicitudes de licencia de médicos formados en Estados Unidos después del día de las elecciones, según un comunicado enviado por correo electrónico del Colegio de Médicos y Cirujanos de British Columbia. El comunicado también indicaba que la organización había concedido la licencia a 28 médicos de este tipo en el año fiscal que finalizó en febrero, el triple que el año anterior.

El Colegio de Médicos de Quebec afirmó que las solicitudes de médicos formados en Estados Unidos han aumentado, al igual que el número de médicos canadienses que regresan de Estados Unidos para ejercer en la provincia, pero no proporcionó datos concretos. En un comunicado, la organización afirmó que algunos solicitantes estaban tratando de obtener permiso para ejercer en Canadá “específicamente debido a la actual administración presidencial”.

Michael, el médico que se mudó a Canadá este año, dijo que llevaba mucho tiempo temiendo lo que describió como una escalada de la retórica política de derecha y la violencia armada sin control en Estados Unidos, de esta última fue testigo directo durante una década trabajando en salas de emergencias.

Michael contó que empezó a plantearse la mudanza cuando Trump se presentó a la reelección en 2020. Su punto de inflexión llegó el 6 de enero de 2021, cuando una violenta turba de seguidores de Trump asaltó el Capitolio de Estados Unidos en un intento de impedir la certificación de la elección de Joe Biden como presidente.

“El discurso civil se estaba desmoronando”, afirmó. “Tuve una conversación con mi familia sobre cómo Biden iba a ser un presidente de un solo mandato y cómo seguíamos avanzando hacia una radicalización cada vez mayor hacia la derecha y la aceptación del vigilantismo (donde las personas se toman la justicia por su mano)”.

Luego, Michael tardó aproximadamente un año en obtener la licencia en Canadá, y aún más en concretar su trabajo y mudarse, contó. Aunque el proceso para obtener la licencia “no fue difícil”, según él, requirió obtener documentos certificados de su facultad de medicina y de su programa de residencia.

“El proceso no fue más difícil que obtener la primera licencia en Estados Unidos, que también es muy burocrático”, señaló Michael. “La diferencia es que creo que la mayoría de las personas que ejercen en Estados Unidos están tan cansadas de los trámites administrativos que no quieren volver a pasar por ese proceso”.

Michael dijo que ahora recibe casi a diario correos electrónicos o mensajes de texto de colegas que buscan asesoramiento para mudarse a Canadá.

Este deseo de marcharse también ha llamado la atención de Hippocratic Adventures, una pequeña empresa que ayuda a los médicos estadounidenses a ejercer la medicina en otros países.

La empresa fue cofundada por Ashwini Bapat, una doctora formada en Yale que se mudó a Portugal en 2020, en parte porque “le aterrorizaba que Trump volviera a ganar”. Durante años, Hippocratic Adventures atendió a médicos con espíritu viajero, guiándolos a través de la burocracia para obtener licencias en otros países o realizar telemedicina a distancia, explicó Bapat.

Pero después de la reelección de Trump, los clientes ya no buscaban grandes viajes por todo el mundo. Ahora buscan la salida de emergencia más cercana, según Bapat.

“Antes se trataba de la aventura”, explicó Bapat. “Pero el mayor aumento que vimos, sin duda alguna, fue cuando Trump ganó la reelección en noviembre. Y luego, el día de la toma de posesión. Y básicamente todos los días desde entonces”.

Al menos una provincia canadiense se está promocionando activamente entre los médicos estadounidenses.

Doctors Manitoba, que representa a los médicos de esta provincia rural que sufre una de las peores escaseces de médicos de Canadá, lanzó una campaña de reclutamiento tras las elecciones para capitalizar el rechazo a Trump y al auge de la política de extrema derecha en Estados Unidos.

La campaña se centra en Florida y Dakota del Norte y del Sur, y anuncia como “cero interferencias políticas en la relación médico-paciente”.

Alison Carleton, médica de familia que se mudó de Iowa a Manitoba en 2017, dijo que se marchó para escapar de la rutina diaria del sistema de salud estadounidense, orientado al lucro, y porque le horrorizó que Trump fuera elegido por primera vez.

Carleton dijo que ahora dirige una clínica en un pequeño pueblo con poco estrés, menos papeleo y sin miedo a que sus pacientes se vean ahogados por las deudas médicas.

El año pasado renunció a su ciudadanía estadounidense.

“La gente que conozco me dice: ‘Te fuiste justo a tiempo’”, afirmó Carleton. “Yo les respondo: ‘Lo sé. ¿Cuándo te vas a mudar tú?’”.

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Earlier this year, as President Donald Trump was beginning to reshape the American government, Michael, an emergency room doctor who was born, raised, and trained in the United States, packed up his family and got out.

Michael now works in a small-town hospital in Canada. KFF Health News and NPR granted him anonymity because of fears he might face reprisal from the Trump administration if he returns to the U.S. He said he feels some guilt that he did not stay to resist the Trump agenda but is assured in his decision to leave. Too much of America has simply grown too comfortable with violence and cruelty, he said.

“Part of being a physician is being kind to people who are in their weakest place,” Michael said. “And I feel like our country is devolving to really step on people who are weak and vulnerable.”

Michael is among a new wave of doctors who are leaving the United States to escape the Trump administration. In the months since Trump was reelected and returned to the White House, American doctors have shown skyrocketing interest in becoming licensed in Canada, where dozens more than normal have already been cleared to practice, according to Canadian licensing officials and recruiting businesses.

The Medical Council of Canada said in an email statement that the number of American doctors creating accounts on physiciansapply.ca, which is “typically the first step” to being licensed in Canada, has increased more than 750% over the past seven months compared with the same time period last year — from 71 applicants to 615. Separately, medical licensing organizations in Canada’s most populous provinces reported a rise in Americans either applying for or receiving Canadian licenses, with at least some doctors disclosing they were moving specifically because of Trump.

“The doctors that we are talking to are embarrassed to say they’re Americans,” said John Philpott, CEO of CanAm Physician Recruiting, which recruits doctors into Canada. “They state that right out of the gate: ‘I have to leave this country. It is not what it used to be.’”

Canada, which has universal publicly funded health care, has long been an option for U.S.-trained doctors seeking an alternative to the American health care system. While it was once more difficult for American doctors to practice in Canada due to discrepancies in medical education standards, Canadian provinces have relaxed some licensing regulations in recent years, and some are expediting licensing for U.S.-trained physicians.

In mere months, the Trump administration has jeopardized the economy with tariffs, ignored court orders and due process, and threatened the sovereignty of U.S. allies, including Canada. The administration has also taken steps that may unnerve doctors specifically, including appointing Robert F. Kennedy Jr. to lead federal health agencies, shifting money away from pandemic preparedness, discouraging gender-affirming care, demonizing fluoride, and supporting deep cuts to Medicaid.

The Trump administration did not provide any comment for this article. When asked to respond to doctors’ leaving the U.S. for Canada, White House spokesperson Kush Desai asked whether KFF Health News knew the precise number of doctors and their “citizenship status,” then provided no further comment. KFF Health News did not have or provide this information.

Philpott, who founded CanAm Physician Recruiting in the 1990s, said the cross-border movement of American and Canadian doctors has for decades ebbed and flowed in reaction to political and economic fluctuations, but that the pull toward Canada has never been as strong as now.

Philpott said CanAm had seen a 65% increase in American doctors looking for Canadian jobs from January to April, and that the company has been contacted by as many as 15 American doctors a day.

Rohini Patel, a CanAm recruiter and doctor, said some consider pay cuts to move quickly.

“They’re ready to move to Canada tomorrow,” she said. “They are not concerned about what their income is.”

The College of Physicians and Surgeons of Ontario, which handles licensing in Canada’s most populous province, said in a statement that it registered 116 U.S.-trained doctors in the first quarter of 2025 — an increase of at least 50% over the prior two quarters. Ontario also received license applications from about 260 U.S.-trained doctors in the first quarter of this year, the organization said.

British Columbia, another populous province, saw a surge of licensure applications from U.S.-trained doctors after Election Day, according to an email statement from the College of Physicians and Surgeons of British Columbia. The statement also said the organization licensed 28 such doctors in the fiscal year that ended in February — triple the total of the prior year.

Quebec’s College of Physicians said applications from U.S.-trained doctors have increased, along with the number of Canadian doctors returning from America to practice within the province, but it did not provide specifics. In a statement, the organization said some applicants were trying to get permitted to practice in Canada “specifically because of the actual presidential administration.”

Michael, the physician who moved to Canada this year, said he had long been wary of what he described as escalating right-ring political rhetoric and unchecked gun violence in the United States, the latter of which he witnessed firsthand during a decade working in American emergency rooms.

Michael said he began considering the move as Trump was running for reelection in 2020. His breaking point came on Jan. 6, 2021, when a violent mob of Trump supporters besieged the U.S. Capitol in an attempt to stop the certification of the election of Joe Biden as president.

“Civil discourse was falling apart,” he said. “I had a conversation with my family about how Biden was going to be a one-term president and we were still headed in a direction of being increasingly radicalized toward the right and an acceptance of vigilantism.”

It then took about a year for Michael to become licensed in Canada, then longer for him to finalize his job and move, he said. While the licensing process was “not difficult,” he said, it did require him to obtain certified documents from his medical school and residency program.

“The process wasn’t any harder than getting your first license in the United States, which is also very bureaucratic,” Michael said. “The difference is, I think most people practicing in the U.S. have got so much administrative fatigue that they don’t want to go through that process again.”

Michael said he now receives near-daily emails or texts from American doctors who are seeking advice about moving to Canada.

This desire to leave has also been striking to Hippocratic Adventures, a small business that helps American doctors practice medicine in other countries.

The company was co-founded by Ashwini Bapat, a Yale-educated doctor who moved to Portugal in 2020 in part because she was “terrified that Trump would win again.” For years, Hippocratic Adventures catered to physicians with wanderlust, guiding them through the bureaucracy of getting licensed in foreign nations or conducting telemedicine from afar, Bapat said.

But after Trump was reelected, customers were no longer seeking grand travels across the globe, Bapat said. Now they were searching for the nearest emergency exit, she said.

“Previously it had been about adventure,” Bapat said. “But the biggest spike that we saw, for sure, hands down, was when Trump won reelection in November. And then Inauguration Day. And basically every single day since then.”

At least one Canadian province is actively marketing itself to American doctors.

Doctors Manitoba, which represents physicians in the rural province that struggles with one of Canada’s worst doctor shortages, launched a recruiting campaign after the election to capitalize on Trump and the rise of far-right politics in the U.S.

The campaign focuses on Florida and North and South Dakota and advertises “zero political interference in physician patient relationship” as a selling point.

Alison Carleton, a family medicine doctor who moved from Iowa to Manitoba in 2017, said she left to escape the daily grind of America’s for-profit health care system and because she was appalled that Trump was elected the first time.

Carleton said she now runs a small-town clinic with low stress, less paperwork, and no fear of burying her patients in medical debt.

She dropped her American citizenship last year.

“People I know have said, ‘You left just in time,’” Carleton said. “I tell people, ‘I know. When are you going to move?’”

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SAN FRANCISCO, California — Organizaciones de salud sin fines de lucro e intérpretes médicos advierten que los recortes federales han eliminado docenas de puestos de trabajadores comunitarios en California, que ayudan a quienes no hablan inglés a obtener cobertura médica y a navegar el sistema de salud.

Al mismo tiempo, las personas con dominio limitado del inglés están pidiendo menos servicios lingüísticos, lo que los defensores de la atención de salud atribuyen en parte a la ofensiva migratoria del presidente Donald Trump y a su orden ejecutiva declarando al inglés como idioma nacional.

Estos cambios en las políticas y la financiación podrían dejar a algunas personas sin atención vital, especialmente a niños y adultos mayores.

“Las personas tendrán dificultades para acceder a beneficios a los que tienen derecho y que necesitan para vivir de forma independiente”, expresó Carol Wong, abogada senior de derechos humanos de Justice in Aging, un grupo nacional de defensa.

Cerca de 69 millones de personas en el país hablan un idioma que no es inglés, y 26 millones de ellas hablan inglés a un nivel por debajo de “muy bien”, según los datos más recientes disponibles de 2023 de la Oficina del Censo de Estados Unidos.

Una encuesta de KFF-Los Angeles Times de ese año reveló que los inmigrantes con un dominio limitado del inglés reportaron más obstáculos para acceder a la atención médica y peor salud que los que hablan mejor inglés.

Los defensores de salud temen que, sin el apoyo adecuado, millones de personas con un dominio limitado del inglés sean más propensas a sufrir errores médicos, diagnósticos equivocados, negligencia y otros resultados adversos.

Al inicio de la pandemia en 2020, ProPublica informó que una mujer con síntomas de coronavirus murió en Brooklyn luego de no recibir tratamiento oportuno porque el personal de emergencias no pudo comunicarse con ella en húngaro.

Y, en el punto álgido de la crisis, The Virginian-Pilot fue el primero en informar que una traducción al español en un sitio web estatal afirmaba erróneamente que la vacuna contra covid-19 no era necesaria.

En el año 2000, el presidente Bill Clinton firmó una orden ejecutiva destinada a mejorar el acceso a los servicios federales para las personas con inglés limitado. Investigaciones muestran que la asistencia lingüística se traduce en una mayor satisfacción del paciente, y también en una reducción de errores médicos, diagnósticos equivocados y consecuencias adversas para la salud.

Los servicios de interpretación de idiomas también ahorran dinero al sistema de salud al reducir las estadías en el hospital y los reingresos.

La orden de Trump derogó la directiva de Clinton y dejó en manos de cada agencia federal la decisión de mantener o adoptar una nueva política sobre lenguas. Algunas ya han reducido sus servicios: según se ha informado, el Departamento de Seguridad Nacional y la Administración del Seguro Social redujeron los servicios de idiomas, y el Departamento de Justicia afirma estar revisando las directrices. El enlace a su plan de lenguas no funciona.

No está claro qué pretende hacer el Departamento de Salud y Servicios Humanos (HHS). El HHS no respondió a las preguntas de KFF Health News.

Un plan del HHS implementado durante la presidencia de Joe Biden, que incluye directrices durante emergencias y desastres de salud pública, ha sido archivado, lo que significa que podría no reflejar las políticas actuales. Sin embargo, la Oficina de Derechos Civiles del HHS sigue informando a los pacientes sobre su derecho a recibir servicios de asistencia en sus idiomas nativos cuando recogen una receta médica, solicitan un seguro de salud o van al médico.

Además, en julio pasado, la oficina agregó protecciones que prohíben a los proveedores de salud utilizar personal no capacitado, familiares o niños para brindar interpretación durante las consultas médicas. También requiere que un traductor humano calificado revise traducciones de información confidencial  realizadas con herramientas de inteligencia artificial (IA), para garantizar su precisión.

La administración Trump podría anular estas salvaguardas, afirmó Mara Youdelman, directora general del National Health Law Program, una organización nacional de defensa de políticas legales y de salud. “Hay un proceso que debe seguirse”, agregó, refiriéndose a la implementación de cambios con la participación del público.

“Les insto encarecidamente a que consideren las graves consecuencias cuando las personas no tienen una comunicación efectiva”, enfatizó.

Youdelman dijo que, incluso si el gobierno federal finalmente no ofrece servicios de idiomas al público, los hospitales y proveedores de salud están obligados a proporcionar esta asistencia a los pacientes de manera gratuita. El Título VI de la Ley de Derechos Civiles de 1964 prohíbe la discriminación por raza u origen nacional, y sus protecciones se extienden al idioma. Además, la Ley de Cuidado de Salud a Bajo Precio (ACA) de 2010, que amplió la cobertura médica para millones de estadounidenses y adoptó numerosas protecciones al consumidor, exige que los proveedores de salud que reciben fondos federales ofrezcan servicios de idiomas, incluyendo traducción e interpretación.

“El inglés puede ser el idioma oficial y las personas aún tienen derecho a obtener servicios de idiomas cuando acceden a la atención médica”, dijo Youdelman. “Nada en la orden ejecutiva cambió la ley vigente”.

Las aseguradoras aún deben incluir eslóganes multilingües en la correspondencia a sus miembros, explicando cómo pueden acceder a los servicios de idiomas.

Los centros de salud deben colocar avisos visibles que informen a los pacientes sobre los servicios de asistencia lingüística, y garantizar intérpretes certificados y calificados.

Los gobiernos estatales y locales podrían ampliar sus propios requisitos de acceso a idiomas. Algunos estados han tomado medidas similares en los últimos años, y los legisladores estatales de California están considerando un proyecto de ley que establecería un director de acceso lingüístico, exigiría la revisión humana de las traducciones de IA y mejoraría las encuestas que evalúan las necesidades lingüísticas.

“Con la creciente incertidumbre a nivel federal, las leyes y políticas de acceso estatales y locales son aún más importantes”, afirmó Jake Hofstetter, analista de políticas del Migration Policy Institute.

En California, el Departamento de Salud Pública de Los Ángeles y la Oficina de Participación Cívica y Asuntos de Inmigrantes de San Francisco afirmaron que sus servicios de idiomas no se han visto afectados por la orden ejecutiva de Trump ni por los recortes de fondos federales.

Sin embargo, la demanda ha disminuido. Aurora Pedro, de Comunidades Indígenas en Liderazgo, una de las pocas intérpretes médicas en Los Ángeles que habla akatek y qʼanjobʼal, lenguas mayas de Guatemala, dijo que recibe menos llamadas solicitando sus servicios desde que asumió Trump.

Y otras áreas de California han reducido los servicios lingüísticos por los recortes de fondos federales.

Hernán Treviño, vocero del Departamento de Salud Pública del condado de Fresno, dijo que el condado redujo el número de trabajadores de salud comunitarios a más de la mitad, de 49 a 20 puestos. Esto ha limitado la disponibilidad de guías locales que hablan español, hmong o lenguas indígenas de Latinoamérica, y que ayudan a los inmigrantes a inscribirse en planes de salud y programar exámenes de rutina.

Treviño indicó que, en las oficinas del condado, el personal sigue disponible para atender a los residentes en español, hmong, lao y panyabí. También hay una línea telefónica gratuita disponible para ayudar a acceder a servicios en el idioma preferido.

Mary Anne Foo, directora ejecutiva de la Asian and Pacific Islander Community Alliance del condado de Orange, informó que la Administración de Servicios de Abuso de Sustancias y Salud Mental congeló los $394.000 restantes de un contrato de dos años para mejorar los servicios de salud mental. Como resultado, la alianza planea despedir a 27 de sus 62 terapeutas, psiquiatras y administradores de casos bilingües. La alianza atiende a más de 80.000 pacientes que hablan más de 20 idiomas.

“Solo podemos mantenerlos hasta el 30 de junio”, dijo Foo. “Todavía estamos tratando de ver si podremos cubrir a las personas”.

Orozco Rodríguez reportó desde Elko, Nevada.

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SAN FRANCISCO — Health nonprofits and medical interpreters warn that federal cuts have eliminated dozens of positions in California for community workers who help non-English speakers sign up for insurance coverage and navigate the health care system.

At the same time, people with limited English proficiency have scaled back their requests for language services, which health care advocates attribute in part to President Donald Trump’s immigration crackdown and his executive order declaring English as the national language.

Such policy and funding changes could leave some without lifesaving care, particularly children and seniors. “People are going to have a hard time accessing benefits they’re entitled to and need to live independently,” said Carol Wong, a senior rights attorney for Justice in Aging, a national advocacy group.

Nearly 69 million people in the U.S. speak a language other than English, and 26 million of them speak English less than “very well,” according to the most recent U.S. Census data available, from 2023. A KFF-Los Angeles Times survey from that year found that immigrants with limited English proficiency reported more barriers accessing health care and worse health than English-proficient immigrants.

Health advocates fear that, without adequate support, millions of people in the U.S. with limited English proficiency will be more likely to experience medical errors, misdiagnosis, neglect, and other adverse outcomes. During the start of the pandemic in 2020, ProPublica reported that a woman with coronavirus symptoms died in Brooklyn after missing out on timely treatment because emergency room staffers could not communicate with her in Hungarian. And, at the height of the crisis, The Virginian-Pilot first reported that a Spanish translation on a state website erroneously stated that the covid-19 vaccine was not necessary.

In 2000, President Bill Clinton signed an executive order aimed at improving access to federal services for people with limited English proficiency. Research shows language assistance results in higher patient satisfaction, as well as fewer medical errors, misdiagnoses, and adverse health outcomes. Language services also save the health care system money by reducing hospital stays and readmissions.

Trump’s order repealed Clinton’s directive and left it up to each federal agency to decide whether to maintain or adopt a new language policy. Some have already scaled back: The Department of Homeland Security and the Social Security Administration reportedly reduced language services, and the Justice Department says it is reviewing guidance materials. A link to its language plan is broken.

It’s unclear what the Department of Health and Human Services intends to do. HHS did not respond to questions from KFF Health News.

An HHS plan implemented under President Joe Biden, including guidance during public health emergencies and disasters, has been archived, meaning it may not reflect current policies. However, HHS’s Office for Civil Rights still informs patients of their right to language assistance services when they pick up a prescription, apply for a health insurance plan, or visit a doctor.

And the office added protections in July that prohibit health providers from using untrained staff, family members, or children to provide interpretation during medical visits. It also required that translation of sensitive information using artificial intelligence be reviewed by a qualified human translator for accuracy.

Those safeguards could be undone by the Trump administration, said Mara Youdelman, a managing director at the National Health Law Program, a national legal and health policy advocacy organization. “There’s a process that needs to be followed,” she said, about making changes with public input. “I would strongly urge them to consider the dire consequences when people don’t have effective communication.”

Even if the federal government ultimately doesn’t offer language services for the public, Youdelman said, hospitals and health providers are required to provide language assistance at no charge to patients.

Title VI of the Civil Rights Act of 1964 prohibits discrimination based on race or national origin, protections that extend to language. And the 2010 Affordable Care Act, which expanded health coverage for millions of Americans and adopted numerous consumer protections, requires health providers receiving federal funds to make language services, including translation and interpretation, available. 

“English can be the official language and people still have a right to get language services when they go to access health care,” Youdelman said. “Nothing in the executive order changed the actual law.”

Insurers still need to include multi-language taglines in their correspondence to enrollees explaining how they can access language services. And health facilities must post visible notices informing patients about language assistance services and guarantee certified and qualified interpreters.

State and local governments could broaden their own language access requirements. A few states have taken such actions in recent years, and California state lawmakers are considering a bill that would establish a language access director, mandate human review of AI translations, and improve surveys assessing language needs.

“With increasing uncertainty at the federal level, state and local access laws and policies are even more consequential,” said Jake Hofstetter, policy analyst at the Migration Policy Institute.

The Los Angeles Department of Public Health and San Francisco’s Office of Civic Engagement and Immigrants Affairs said their language services have not been affected by Trump’s executive order or federal funding cuts.

Demand, however, has dropped. Aurora Pedro of Comunidades Indígenas en Liderazgo, one of the few medical interpreters in Los Angeles who speaks Akatek and Qʼanjobʼal, Mayan languages from Guatemala, said she has received fewer calls for her services since Trump took office.  

And other pockets of California have reduced language services because of the federal funding cuts. 

Hernán Treviño, a spokesperson for the Fresno County Department of Public Health, said the county cut the number of community health workers by more than half, from 49 to 20 positions. That reduced the availability of on-the-ground navigators who speak Spanish, Hmong, or Indigenous languages from Latin America and help immigrants enroll in health plans and schedule routine screenings.

Treviño said staffers are still available to support residents in Spanish, Hmong, Lao, and Punjabi at county offices. A free phone line is also available to help residents access services in their preferred language.

Mary Anne Foo, executive director of the Orange County Asian and Pacific Islander Community Alliance, said the federal Substance Abuse and Mental Health Services Administration froze $394,000 left in a two-year contract to improve mental health services. As a result, the alliance is planning to let go 27 of its 62 bilingual therapists, psychiatrists, and case managers. The organization serves more than 80,000 patients who speak over 20 languages.

“We can only keep them through June 30,” Foo said. “We’re still trying to figure it out — if we can cover people.”

Orozco Rodriguez reported from Elko, Nevada.

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).