The CDC withheld the data for months as a team hit hard by mass layoffs and resignations sorted through the information. But now that scientists at the agency have posted their first batch of whole measles genomes — the genetic blueprint of the viruses — the rest should “start flowing more smoothly at a more rapid cadence,” said Kristian Andersen, an evolutionary virologist at the Scripps Research Institute who isn’t involved with the CDC’s effort but is following it.

The CDC did not answer queries from Â鶹ŮÓÅ Health News on its timeline for publishing measles data or analyses. However, once all the data is public, researchers can run that will signal whether outbreaks across the U.S. last year resulted from the continuous spread of the disease between states, rather than separate introductions from abroad. If there was continuous transmission for a year, that means the U.S. has lost its status as a country that has eliminated measles. That status, which the U.S. has held since 2000, reflects a country’s vaccination rates: Two doses of the measles-mumps-rubella vaccine prevent most infections and so stop outbreaks from growing.

More careful analyses take weeks.

“We should see a report in April,” Andersen said, “assuming no political interference.”

This is the first time that the U.S. has applied sophisticated genomic techniques to measles, which largely disappeared from the country a quarter-century ago because of broad vaccine uptake.

Declining , misinformation, and the Trump administration’s lagging response to outbreaks have fueled a resurgence of the disease. With at least 2,285 cases in 44 states, 2025 was the worst year for measles in more than three decades. This year is on track to surpass that, with 1,575 cases as of late March.

While welcoming the science, researchers say the government’s top priority should be to stop the virus from spreading.

“I think it’s incredibly important to do whole genome sequencing for outbreaks,” Andersen said, “but we shouldn’t need to do this for measles in the first place, because we have an extremely effective and safe vaccine.”

“That we’re even talking about this is nuts,” he added.

Health and Human Services Secretary Robert F. Kennedy Jr. and other government officials should sound an alarm about measles’ comeback and launch nationwide vaccine campaigns, said Rekha Lakshmanan, executive director of , a nonprofit in Houston that advocates for vaccine access.

“I applaud the science,” she said, “but the more urgent need is to get measles under control as quickly as possible.”

Top officials have instead downplayed the seriousness of the disease, and false notions about vaccines have been granted new life in Kennedy’s CDC. This includes abrupt changes to vaccine information on CDC websites that medical say aren’t based on evidence and endanger lives. 

Kennedy continues to promote unproven remedies that could mislead parents into believing that they can avoid vaccines without consequence. On the podcast in late February, Kennedy spoke at length about measures to improve America’s health but didn’t mention vaccines. He said preventive measures could entail “holistic medicine, or take vitamins, or take vitamin D, which is, as you know, it’s kind of miraculous.”

“The risk of measles remains low for most of the United States,” HHS spokesperson Emily Hilliard wrote. “CDC has made $8.5 million available to address measles response activities in 7 jurisdictions experiencing outbreaks,” she wrote. “The CDC, HHS principles, and the Secretary have been vocal that the MMR vaccine is the best way to protect yourself against measles.”

1,000 Genomes

In December, the CDC enlisted the help of one of the country’s leading centers for virus sequencing, the Broad Institute in Cambridge, Massachusetts. Major outbreaks in Texas, Utah, and South Carolina had been fueled by the same type of measles virus, labeled D8-9171. But since that type also circulates in Canada and Mexico, researchers need more data to discern whether it spread among states or entered the U.S. multiple times.

Whole genome sequencing provides that information because viruses evolve over time. The measles virus acquires a mutation every two to four transmissions between people, said Bronwyn MacInnis, director of pathogen surveillance at the Broad.

“There is enough signal in this data to tease apart questions at hand,” MacInnis said, “the main one being sustained transmission within this country.”

MacInnis’ team worked overtime to sequence the entire genomes of inactivated measles viruses that had been collected from states in 2025 and 2026.

“We’ve done about 1,000 samples and delivered the genome data back to the CDC,” sending it on a rolling basis since December, MacInnis said. “This is the CDC’s data to publish.”

The CDC didn’t post a single one of those genomes until late March, when eight appeared on a public database hosted by the National Center for Biotechnology Information. By April 1, an additional 154 had gone online.

“It should be on NCBI within a couple of weeks of being produced,” Andersen said, “and certainly not take longer than a month when you have an active outbreak.”

Genomic data holds clues about how outbreaks start and spread. It allows researchers to develop tests, treatments, and vaccines — and detect variants that might evade them.

Such data was critical in the covid pandemic. Chinese and Australian scientists online on Jan. 10, 2020, of sequencing it. “It definitely shouldn’t take the CDC months,” said Eddie Holmes, the Australian virologist who helped publish the first coronavirus sequence.

One reason for the delay is that the CDC’s measles lab has been sorely understaffed amid mass layoffs and other turmoil at the agency over the past year, a CDC scientist told Â鶹ŮÓÅ Health News. Another reason, the researcher added, is a learning curve: The CDC and health departments haven’t needed to sequence hundreds of whole measles genomes before now. (Â鶹ŮÓÅ Health News agreed not to identify the scientist, who feared retaliation.)

In contrast with the CDC, the Utah Public Health Lab has shared measles genomes rapidly. Most of some 970 measles genomes posted online since Jan. 1, 2025, were sequenced by the state, hailing from Utah, Arizona, South Carolina, and other states willing to share them.

“We’ve only got a handful of samples from Texas that were collected kind of in the middle of their outbreak,” said Kelly Oakeson, a genomics researcher at the Utah Department of Health and Human Services. The genomes of the Texas and Utah measles viruses are similar but distinct, Oakeson said, meaning that intermediate versions of the virus are missing.

If the genetic code of viruses collected late in the Texas outbreak are a closer match to those from Utah’s, that will suggest that spread was continuous and the country has lost its measles-free status. The hundreds of genome sequences still sitting at the CDC probably hold the answer.

Waiting on the CDC

The CDC expected to finish its analysis before April, said Daniel Salas, executive manager of the immunization program at the Pan American Health Organization, which works with the World Health Organization. That’s when PAHO was slated to evaluate the United States’ measles status.

He said PAHO delayed its evaluation until the organization’s annual meeting in November, partly because the CDC needed more time to do the genomic analysis and partly because the measles status of Mexico, Bolivia, and other countries is also under review, and holding staggered meetings for each country is inefficient.

The U.S. is the only country using whole genome sequencing to answer the elimination question, Salas said. Typically, countries classify measles viruses according to a tiny snippet of genes, then assume that large outbreaks caused by the same type are linked. Whole genomes provide a more accurate view.

“If the U.S. can fill in the blanks with genomic data, that’s a sort of breakthrough,” Salas said. “That doesn’t mean other countries are going to be able to pull off this kind of analysis,” he added. “It takes a lot of specialized knowledge and resources.”

Equipment to sequence and analyze genomes costs upward of $100,000, and the cost to process each sample, including paying the researchers involved, typically ranges from $100 to $500 per sequence.

“I’m pro-science, but we shouldn’t have to do this,” said Theresa McCarthy Flynn, president of the North Carolina Pediatrics Society. “We don’t have to have a measles epidemic.”

Flynn said she regularly fields questions from parents concerned by misinformation spread by Kennedy and anti-vaccine groups, including the one he founded before joining the Trump administration. Parents have also pointed to changes in the CDC’s recommendations and to its websites that are at odds with the scientific consensus.

Before Kennedy took the helm, a said “Vaccines do not cause autism” in prominent type, and listed in premier scientific journals that refuted a link between vaccines and developmental disorders.

Last year, shifted to saying, “Studies supporting a link have been ignored by health authorities.” The high-quality studies were replaced with a report from a single investigator who has ties to anti-vaccine groups. In an email to Â鶹ŮÓÅ Health News, HHS spokesperson Hilliard echoed the altered website’s claims about vaccines, disregarding extensive studies on the topic.

Flynn, of the pediatrics association, said, “The CDC itself is spreading misinformation about vaccines. I cannot overstate the seriousness of this.”

Although the acting director of the CDC, Jay Bhattacharya, says vaccines are the best way to prevent measles, he too has undermined vaccine policy. He said the controversial to reduce the number of vaccines recommended to children was based on “gold standard science.” In fact, the new schedule makes the among peer nations. Hilliard wrote that the updated schedule was “aligning U.S. guidance with international norms.”

A federal court temporarily invalidated the change last month in a lawsuit brought by the American Academy of Pediatrics and other groups.

Bhattacharya hasn’t held briefings with the public or the press on the surge of measles this year or activated the CDC’s emergency capabilities.

“Normally, we’d have a big push to get vaccination rates up in areas where it’s low. We’d do a big social media push, put out ads on getting vaccinated,” said another CDC scientist whom Â鶹ŮÓÅ Health News agreed not to identify, because of fears of retaliation. “People at the CDC want to do this, but political leadership at the agency has not allowed the CDC to do it.”

Further, the Trump administration’s cuts and delays to public health funds have made it hard for local health officials to protect communities. Philip Huang, director at Dallas County Health and Human Services in Texas, said the department lost over $4 million when the administration clawed back about $11 billion from health departments early last year as a measles outbreak surged in the state.

“We lost 27 staff and had to cancel over 20 of our community vaccination efforts, including to schools identified as having low vaccination rates,” he said. “There are simultaneous attacks on immunizations that are making our jobs harder.”

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It’s one of the many parts of the 25-bed rural hospital that need updating, former CEO Ron Wiens said.

He said the hospital, an essential service in its namesake town of nearly 800 residents in the state’s sprawling north-central high plains, needs at least $1 million for deferred maintenance, including a failing HVAC system. But the facility has struggled to make payroll each month and can’t afford to make all the fixes, Wiens said.

Built by farmers and ranchers in 1965, Big Sandy Medical Center began with nine beds. Today, a similar community effort — donations and grants to plug financial holes each year — keeps it afloat.

Wiens, who recently left his position at the hospital, said he wishes Big Sandy could get funding from Montana’s share of the $50 billion federal Rural Health Transformation Program to renovate the hospital and direct payments to help secure its future. The state received more than $233 million in its first-year award.

But the hospital may not get the kind of help he sought.

That’s because the five-year program focuses on new, creative ways to improve access to rural health care, not on directly funding services and renovations. And Montana is one of at least 10 states whose leaders say projects launched under the federal program could lead rural hospitals to cut services so they can continue to afford to offer emergency and other essential care.

Congressional Republicans created the fund as a last-minute sweetener to their One Big Beautiful Bill Act, signed into law last summer. The funding was intended to offset disproportionate fallout anticipated in rural communities from the law, which is expected to slash Medicaid spending .

includes programs to make it easier for rural residents to get medical care and live a healthy lifestyle. For example, it says funding can be used to start community gardens, train paramedics to make home visits, open school-based clinics, or bring mobile clinics to rural areas.

rural Montana hospitals can receive payments for implementing recommendations, “including right-sizing select inpatient services” to match demand. In some cases, it says, right-sizing might mean “downsizing.” The state says hospitals will have input and recommendations will be specific to each facility.

“That’s what has all the hospitals on pins and needles, words like restructuring, reducing inpatient beds. Everybody is going, ‘What is this going to look like?’” Wiens said.

The Montana Department of Public Health and Human Services declined to answer questions about how it will carry out its right-sizing efforts.

A Lifeline of Care

Big Sandy cattle rancher Shane Chauvet doesn’t want any services cut.

He credits Big Sandy Medical Center with saving his life after a flying piece of metal nearly cut off his arm during a windstorm a few years back.

“I looked over, saw it coming, and whack!” Chauvet recalled.

His wife drove him to the hospital, where they frantically pounded on the ER door while Chauvet’s blood pooled on the ground.

Because of the storm, staffers worked on Chauvet with no power and no ability to summon a helicopter. He was then taken by ambulance 80 miles through intense rain and hail to a larger hospital.

Chauvet understands the state’s plan doesn’t call for eliminating emergency care, but he worries that reducing other services would set off a downward spiral for the hospital and his town.

In Oklahoma, realigning clinical services could mean “shutting down service lines,” to the federal program. And in Wyoming, any facility that receives funding must agree to “reduce unprofitable, duplicative or nonessential service lines,” .

Monique McBride, business operations administrator at the Wyoming Department of Health, said the department interprets right-sizing as helping rural hospitals provide essential services — such as emergency departments, ambulance services, and labor and delivery units — while maintaining long-term, financial stability.

“This might involve limiting some elective procedures that could be done at lower cost in higher-volume facilities. The main distinction here is time-sensitive emergencies vs. ‘shoppable’ services,” she said.

A New Lease on Life?

Seven of the 10 states — Nebraska, North Dakota, Tennessee, Kansas, Nevada, South Carolina, and Washington — where rural hospital service cuts are on the table say they’ll help pay for hospitals to convert to Rural Emergency Hospitals. The recently created federal designation requires hospitals to halt inpatient services and offers enhanced payments to help them maintain emergency and outpatient care.

At least 15 additional states wrote that they’ll use the federal funding to right-size, evaluate, or adjust services — which could mean adding or taking away services, or transitioning them to a telehealth or outpatient setting.

Brock Slabach, chief operations officer of the National Rural Health Association, said, “There’s a proper concern from rural hospital administrators that this funding is not going to where it was intended.”

He said cutting services that lose money could backfire in the long run. For example, he said, halting labor and delivery care might drive more people out of small towns, further reducing hospitals’ patient numbers and revenue.

The type of hospital services that states will assess matters, said Tony Shih, a senior adviser at the Commonwealth Fund, a nonprofit focused on making health care more equitable.

“If the end result is that high-margin services are taken away from local hospitals with nothing given back in return, it can be financially harmful,” he said.

Shih noted that states’ plans to add more outpatient care could prove beneficial for patients. It’ll take time to know which states help stabilize rural hospitals, he said.

Rural hospital leaders say they know which changes would keep their facilities open and that states shouldn’t suggest or mandate service cuts and other changes on their behalf.

Josh Hannes, who oversees rural health policy at the Colorado Hospital Association, said “top-down” directives won’t work.

He said the association’s members believe they can find efficiencies and are eager to collaborate. But “a state agency shouldn’t be making those determinations,” he said.

Hannes said members are worried Colorado’s plan to classify rural health facilities as a “hub, spoke, or telehealth node” will compel service reductions. The classification will help determine “which services are sustainable locally and which are best provided regionally or through telehealth,” .

Spokespeople for the Colorado and Oklahoma health departments said no facility will be forced to end services. But Oklahoma spokesperson Rachel Klein said some facilities might choose to do so as part of a broader effort to make sure they’re meeting community needs while remaining financially stable.

“A hospital might shift certain services to a nearby regional provider with higher patient volume and specialized staff while expanding other local services,” such as primary, outpatient, or community-based care, she said.

Wiens and Darrell Messersmith, CEO of Dahl Memorial Hospital in the southeastern Montana town of Ekalaka, said they worry the only way hospitals will get their share of funding is to cut services or become Rural Emergency Hospitals that don’t offer inpatient services.

“I would hate to see things shift toward a pack-and-ship facility,” Messersmith said. “Right now, we function quite well as an inpatient facility.”

Not all Montana health leaders are worried.

Ed Buttrey, president and CEO of the Montana Hospital Association, said he thinks his state’s plan could help rural hospitals become financially sustainable and survive Medicaid cuts. Buttrey is also a Republican state lawmaker.

Chauvet, the Big Sandy rancher, said his perspective on whether remote towns like his should have a hospital is forever changed because of his accident.

“I always would say, ‘Oh, they’re nice to have,’ but now I look at the hospital and say, ‘That’s essential to our community,’” he said.

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Quizás, pensaron, se trataba de unos zapatos que no le quedaban bien.

Los familiares describían a la niña amante de los unicornios como inteligente, cariñosa y a veces un poco traviesa. Antes de aprender el alfabeto, ya había descubierto cómo encontrar su programa favorito, Blippi, en un teléfono. También era conocida por sacar mantequilla del refrigerador a escondidas para disfrutarla lamiéndose los dedos.

Pero luego sus extremidades empezaron a sacudirse. Una punción lumbar reveló sarampión en su líquido cefalorraquídeo. El virus que probablemente tuvo cuando era bebé había llegado en secreto a su cerebro. Ahora, con 8 años, Deepanwita está paralizada y no puede hablar.

El sarampión causa complicaciones —que van desde diarrea hasta la muerte— en infectadas, según la Sociedad de Enfermedades Infecciosas de América (IDSA, por sus siglas en inglés). Algunas aparecen de inmediato, mientras que otras tardan semanas o meses en manifestarse. La que está experimentando Deepanwita es la encefalitis esclerosante subaguda (PEES); por lo general, tarda años en aparecer.

“Muchas personas piensan: ‘Si nos da sarampión, estaremos bien, porque conozco a un vecino que lo tuvo y está bien’”, dijo , quien dirige la Sociedad de Neurología Infantil (Child Neurology Society) a nivel nacional, pero habló con Â鶹ŮÓÅ Health News en su papel como doctora en Nueva York con experiencia en enfermedades neurológicas.

Porque el sarampión puede ser peligroso. Un tendrá que volver a aprender a caminar después de sufrir una de las complicaciones más inmediatas: inflamación del cerebro.

Y, a veces, el virus deja una bomba de tiempo en el sistema nervioso.

Una persona puede recuperarse del sarampión y continuar con su vida normal, ya no contagiar y no presentar síntomas identificables —a veces durante una década o más— antes de que aparezcan problemas. Aunque algunos pacientes quedan gravemente discapacitados por un tiempo, Khakoo dijo que la enfermedad casi siempre es mortal.

Antes de la aparición de vacunas eficaces y de uso masivo, esta complicación ocurría con suficiente frecuencia en Estados Unidos como para que, en la década de 1960, un doctor creara un de pacientes con PEES.

Los que aproximadamente 1 de cada 10.000 personas que contraen sarampión desarrollará PEES, pero el riesgo es mucho mayor para quienes se infectan antes de los 5 años. En países muy poblados donde el virus es endémico, como India, los casos se ven con regularidad.

Ahora, doctores e investigadores temen que, a medida que bajan las tasas de vacunación y el sarampión se propaga en Estados Unidos, los casos de esta complicación debilitante también aumenten.

Desde el inicio de 2025, los Centros para el Control y la Prevención de Enfermedades (CDC) —más que en toda la década anterior— en su mayoría en personas no vacunadas. Muchos eran niños.

El año pasado, doctores en Connecticut y, en California, otro en edad escolar que había tenido sarampión cuando era bebé .

“Es probable que veamos más casos de PEES en el futuro, especialmente si no controlamos esto”, dijo , miembro del Comité de Enfermedades Infecciosas de la Academia Americana de Pediatría y autor del libro .

La preocupación por la PEES fue lo suficientemente grande como para que en enero la Child Neurology Society para educar a los médicos estadounidenses sobre la enfermedad. Los doctores que han visto estos casos también están advirtiendo a sus colegas.

“No tenemos una forma de saber quién la va a desarrollar, ni una manera muy efectiva de tratarla”, señaló , profesor de neurología en la Escuela de Medicina de la New York University Grossman. “Lo mejor que podemos hacer, idealmente, es evitar que los niños tengan que pasar por esto en primer lugar”.

La vacuna contra el sarampión recomendada en dos dosis reduce el riesgo de que una persona expuesta contraiga el virus contagioso del  y, por lo tanto, disminuye la posibilidad de desarrollar PEES.

Las vacunas tienen pequeños riesgos de y un , pero el sarampión tiene un riesgo mayor de causar ambos.

Casos en Estados Unidos

Un sobre niños en California que desarrollaron PEES después de un brote de sarampión ocurrido años antes determinó que se diagnostica 1 caso por cada aproximadamente 1.400 casos conocidos de sarampión en niños menores de 5 años, y 1 por cada 600 bebés infectados.

Los investigadores también encontraron que, con los años, los doctores habían pasado por alto algunos casos en pacientes que murieron con enfermedades neurológicas no diagnosticadas.

La posibilidad de que casos futuros pasen desapercibidos llevó a y a sus colegas a publicar un comunicado en septiembre cuando un niño del condado de Los Ángeles .

“Hemos tenido muy pocos casos de sarampión en los últimos 25 años en este país”, dijo Yeganeh, directora médica del Vaccine Preventable Disease Control Program del departamento de salud pública del condado de Los Ángeles, quien ha tenido dos pacientes con PEES. “Desafortunadamente, eso está cambiando y queríamos asegurarnos de que todos supieran de esta complicación a largo plazo”.

El niño de California que murió había contraído sarampión cuando era bebé, dijo Yeganeh, antes de que pudiera recibir la vacuna.

El sarampión es altamente contagioso, por lo que al menos el 95 % de la población debe ser inmune para proteger a las personas vulnerables de la infección, incluidos bebés demasiado pequeños para vacunarse y personas con sistemas inmunológicos debilitados.

“Este es un ejemplo de alguien que hizo todo bien, que quería proteger a su hijo contra esta infección y, lamentablemente, terminó perdiendo a su hijo porque no teníamos inmunidad colectiva”, agregó Yeganeh.

Poco después de que el grupo de Yeganeh publicara el comunicado en California, Nelson también estaba tratando de difundir la información.

Recientemente había visto a un niño de 5 años cuya familia había viajado a Estados Unidos para recibir atención médica después de que el pequeño empezara a tropezar, a tener sacudidas, a alucinar con insectos y animales y a sufrir convulsiones. El niño había contraído sarampión cuando era bebé, cuando todavía era demasiado pequeño para vacunarse. Nelson le diagnosticó PEES.

“Imagínese: tener un hijo sano y feliz que empieza a hablar cada vez menos y finalmente ya no puede caminar”, dijo Nelson. “Es algo muy triste”.

Pensó que solo encontraría esta enfermedad en los libros de texto de la escuela de medicina, como una reliquia del pasado. Sin embargo, en octubre terminó presentando el caso en la conferencia nacional de la Child Neurology Society y participó en el video de la organización sobre la enfermedad.

“Ahora he visto algo que nunca debería haber visto en toda mi carrera”, dijo.

Señales de advertencia desde India

A nivel mundial, el número de brotes de sarampión en los últimos años, y médicos en lugares como el e han visto recientemente grupos de casos de PEES.

El alto costo humano de la propagación del sarampión es especialmente evidente en India. Aunque el número total de casos no se registra, alrededor de 200 familias que cuidan a personas con PEES, incluida la familia de Deepanwita, participan en un mismo grupo de chat en el área de Bangalore.

En Nueva Delhi, Sheffali Gulati estudia y atiende a unos 10 nuevos pacientes al año con esta enfermedad, lo que ella llama el “eco tardío” de los brotes de sarampión. El paciente más joven que ha visto tenía 3 años.

“Las edades y la muerte o un estado vegetativo pueden desarrollarse entre seis meses y cinco años después del inicio”, dijo Gulati, quien dirige el programa de neurología pediátrica del y hasta hace poco dirigía la .

Gulati no ha encontrado tratamientos que reviertan el curso de la SSPE, solo algunos que pueden ralentizar su progreso. A menudo termina aconsejando a los padres: es una situación catastrófica, no es culpa de ellos y no pueden hacer nada más que aceptarlo.

Los familiares de Deepanwita tratan de encontrar momentos de alegría donde pueden. Creen que la niña sonrió cuando su primo favorito la llamó recientemente. Anindita Dasgupta, su madre, dijo que Deepanwita mueve las manos y los pies por sí sola y a veces gira la cabeza, especialmente cuando su padre entra a la habitación.

La niña se comunica con sus padres con los ojos y algunos sonidos.

Pero está muy lejos de cómo estaba en 2022. En el cumpleaños de un primo, unos meses antes de que empezaran los síntomas evidentes, Deepanwita fue quien cantó la canción de cumpleaños más fuerte.

En su propia fiesta de cumpleaños número ocho el año pasado, Deepanwita, con un vestido rosa y un tubo nasal, solo podía parpadear y mover los ojos mientras estaba sentada frente a dos pasteles que no podía comer. Ya no puede tragar, así que su mamá le puso un poco de glaseado en la lengua.

Investigación que no debería ser necesaria

, biólogo molecular de la Clínica Mayo en Rochester, Minnesota, ha estudiado la PEES durante años. Recientemente utilizó tejido cerebral obtenido después de la muerte para mapear cómo el virus del sarampión puede propagarse desde la corteza frontal hasta colonizar todo el cerebro.

Aun así, dijo que sigue siendo una “caja negra” entender exactamente qué hace el virus durante los años en que permanece inactivo entre la infección inicial y la aparición de síntomas de daño neurológico.

Es posible que el virus se replique en el cerebro durante todo ese tiempo sin ser detectado y vaya destruyendo neuronas. Pero con tantas neuronas en el cerebro humano —10 veces más que el número de personas que viven en el planeta— el cerebro puede encontrar formas de adaptarse, dijo Cattaneo, hasta que finalmente ya no puede.

Ahora ha solicitado financiamiento para continuar investigando la enfermedad y posibles tratamientos, aunque en realidad desearía no tener que hacerlo. Las herramientas para eliminar esta enfermedad ya existen.

“El problema podría resolverse con la vacunación”, dijo Cattaneo. “Estados Unidos no debería tener ningún caso de PEES. Es simplemente doloroso”.

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Relatives described the unicorn-loving child as smart, affectionate, and occasionally rascally. Before she learned the alphabet, she had figured out how to find her favorite show, Blippi, on a phone. She was known to sneak butter from the fridge to enjoy a few finger licks.

But then her limbs started jerking. A spinal tap revealed measles in her cerebrospinal fluid. The virus she probably had as an infant had secretly made its way to her brain. Now 8 years old, Deepanwita is paralyzed, unable to talk.

Measles causes complications — ranging from diarrhea to death — in , according to the Infectious Diseases Society of America. Some are immediate, while others take weeks or months to appear. The one Deepanwita is experiencing, subacute sclerosing panencephalitis, or SSPE, typically takes years to rear its head.

“People think, ‘Oh, you know, if we get measles, then we’ll be fine, because I know my neighbor had it and they’re fine,’” said , who leads the national Child Neurology Society but spoke to Â鶹ŮÓÅ Health News in her capacity as a New York City doctor with expertise in neurologic conditions.

Measles, though, can be dangerous: A will have to relearn how to walk after enduring one of the more immediate complications, brain swelling. And every so often, the virus plants a ticking time bomb in the nervous system. A person can recover from measles and continue life as usual, no longer contagious and without any identifiable symptoms — sometimes for a decade or more — before problems appear. While some patients end up severely disabled for a while, Khakoo said, the condition is almost always fatal.

Before the advent of widespread and effective vaccines, the complication occurred enough in the U.S. that in the 1960s a doctor created of SSPE patients. Researchers about 1 in 10,000 people who get measles will develop SSPE, but the risk is significantly higher for those who contract measles before age 5. Populous nations where the virus is endemic, including India, see cases routinely.

Now, doctors and researchers fear that as vaccination rates drop and measles spreads in the U.S., cases of this debilitating complication will also rise here. Since the start of 2025, the over 3,500 measles cases — more than in the entire preceding decade — mostly people who were unvaccinated. Many were children. Last year, Connecticut doctors with SSPE, and in California, a school-age child who’d had measles as an infant .

“We are likely to see SSPE cases going forward, especially if we don’t get this under control,” said , a member of the American Academy of Pediatrics’ Committee on Infectious Diseases and author of the book .

Concern about SSPE was great enough that in January, the Child Neurology Society to educate U.S. clinicians about the condition, and doctors who have seen such cases are warning their peers.

“We don’t have a way of knowing who’s going to get it, and we don’t have a way of very effectively treating it,” said , a professor of neurology with the New York University Grossman School of Medicine. “The one best thing that we can do, ideally, is to prevent children from having to go through it in the first place.”

The recommended two-dose measles vaccine slashes an exposed person’s risk of getting the contagious virus from — and thus reduces the chance of SSPE. The vaccines carry small risks of and a , but measles itself has a higher risk of causing both.

Cases in the U.S.

A of California children who developed SSPE after a measles outbreak there years ago determined that 1 case is diagnosed for about every 1,400 known cases of measles in children under age 5, and 1 for every 600 infected babies.

The researchers also found that, over the years, doctors had missed some cases among patients who had died with undiagnosed neurologic illness.

The possibility that future cases could go undiagnosed spurred and her colleagues to publish a news release in September when a Los Angeles County child .

“We’ve had very few cases of measles in the last 25 years in this country,” said Yeganeh, who is the medical director with the Vaccine Preventable Disease Control Program at the Los Angeles County public health department and has had two patients with SSPE. “Unfortunately, that’s changing, and so we wanted to make sure that everyone was aware of this long-term complication.”

The California child who died had gotten measles as an infant, Yeganeh said, before the child could receive the vaccine. Measles is highly contagious, so at least 95% of the population must be immune to it to protect vulnerable people — including babies too young to vaccinate and people who are immunocompromised — from infection.

“This is an example of someone who did everything right, wanted to protect their child against this infection, and unfortunately ended up losing their child because we didn’t have herd immunity for them,” Yeganeh said.

Shortly after Yeganeh’s group published the news release in California, Nelson was working to get the word out, too.

He had recently seen a 5-year-old whose family had traveled to the U.S. for medical care after the child started stumbling, jerking, hallucinating about bugs and animals, and having seizures. The child had contracted measles as an infant and had been too young to be vaccinated. Nelson diagnosed the child with SSPE.

“Imagine that: Having a child who is healthy and happy, moving to talking less and less, eventually not able to walk,” Nelson said. “It’s a very sad thing.”

He thought he would encounter the condition only in medical school textbooks, as a relic of the past. Instead, in October he found himself presenting the case at the Child Neurology Society’s national conference and participating in the society’s video about the condition. “I’ve now seen something I shouldn’t have ideally seen ever in my career,” he said.

Warning Signs From India

Globally, the number of measles outbreaks in recent years, and physicians in places including and have recently seen clusters of SSPE.

The high human cost of measles’ spread is especially evident in India. While total cases aren’t tracked, about 200 families caring for people with SSPE, including Deepanwita’s, are in a single chat group in the Bangalore area.

In New Delhi, Sheffali Gulati and sees about 10 new patients a year with the condition, what she calls the “delayed echo” of measles outbreaks. The youngest she has seen was 3 years old.

“The ages are , and a death or a vegetative state can develop as soon as in six months to five years of onset,” said Gulati, who leads the pediatric neurology program at the and until recently led India’s .

Gulati hasn’t found any treatments that reverse SSPE’s course, only some that slow its progress. She’s found herself counseling parents: It’s catastrophic, it’s not their fault, and they can do nothing but accept it.

Deepanwita’s relatives try to find joy where they can. They think they noticed the girl smiling when her favorite cousin called recently. Anindita Dasgupta, her mother, said Deepanwita moves her hands and feet on her own and sometimes turns her head, especially when her father enters the room. The girl communicates with her parents through her eyes and a few sounds.

But it’s far from where she was in 2022: At a cousin’s birthday, a few months before noticeable symptoms started, Deepanwita started the birthday song and sang the loudest.

At her own 8th-birthday gathering last year, Deepanwita, wearing a pink eyelet dress and a nasal tube, could only blink and move her eyes as she sat propped up before two cakes that she would not be able to eat. She can no longer swallow, so her mom dabbed a bit of icing on her tongue.

Research That Shouldn’t Be Needed

, a molecular biologist at the Mayo Clinic in Rochester, Minnesota, has been for years. He recently used postmortem brain tissue to map how the measles virus can spread from the frontal cortex to colonize the entire brain. Still, he said it’s a “black box” what exactly measles is doing in those dormant years between the initial infection and when the symptoms of neurologic damage crop up.

It’s possible the virus replicates in the brain that whole time, undetected, killing off neurons. But with so many neurons in the human brain — 10 times as many as people living on the planet — the brain may find a way to adjust, Cattaneo said, until finally it can’t anymore.

He’s applying for funding to continue research on the disease and possible treatments, though ultimately, he wishes he didn’t have to. The tools to obliterate the condition already exist.

“The problem could be solved with vaccination,” Cattaneo said. The U.S. should have no cases of SSPE, he said. “It’s just painful.”

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That’s not stopping Florida lawmakers from trying to adopt Medicaid work requirements anyway. It’s the only legislative body in a nonexpansion state to even consider it so far.

“You need to go to work if you want your friends and neighbors to pay for your health care,” said , the Republican sponsor of a Medicaid work requirement proposal making its way through the legislature.

The move baffles health care advocates and Medicaid experts. Some doubt it’s even legal under President Donald Trump’s signature domestic policy law.

“You cannot change the terms of the work requirement,” said , an attorney and a professor at Georgetown University’s McCourt School of Public Policy, issued by the Centers for Medicare & Medicaid Services. For Cuello, the answer is clear: “It’s a pretty easy no.”

would primarily be parents of children 14 and older, and some 19- and 20-year-olds, he said. A in the Florida House would apply Medicaid work requirements to parents of children ages 6 and older.

To qualify for Medicaid in Florida, a working-age adult without a disability must generally be caring for a child or an older or disabled family member and cannot earn more than 26% of the federal poverty level, or about $592 a month for a family of three.

Most adults who are not disabled and receive Medicaid already work, and many people in low-paying jobs do not receive health insurance through an employer, , a health information nonprofit that includes Â鶹ŮÓÅ Health News. Among single adults ages 19 to 64 in Florida who made under $15,000 a year in 2024, through work.

Critics say Florida’s proposal would likely force some people to become uninsured, even if they meet the work requirement. That’s because the state’s Medicaid income limit is so low that working the mandated 80 hours a month would likely cause those individuals to exceed the income eligibility limit but also leave them earning too little to qualify for subsidized coverage on the Affordable Care Act marketplace.

Michelle Mastrototaro said she lost her Medicaid coverage in November after taking a part-time job as a teaching assistant at a Tampa elementary school last year. Mastrototaro, 47, cares for a disabled teenage son and likely would not need to meet Florida’s proposed work requirement.

But she said her biweekly wages from working about 17 hours a week pushed her past the Medicaid income limit. She has struggled to afford her prescription medications since.

“What I’m making is nothing,” Mastrototaro said. “I am scavenging just to make ends meet.”

The Gaetz-led proposal ignores “the hard realities of what it takes to be qualifying for Medicaid in Florida,” said , executive director of Florida Voices for Health, a nonprofit that advocates for Medicaid expansion. “On its face,” he said, “it doesn’t make sense.”

Medicaid experts say the holds that nonexpansion states cannot adopt work requirements.

A state that hasn’t added more low-income adults to its Medicaid program can’t impose work requirements on those who are already covered, Cuello said. States must cover specific categories of low-income people — such as children, pregnant women, some parents, older adults, and people with disabilities — to receive federal funding for their programs.

States that have expanded Medicaid eligibility to a limited group of low-income adults, namely Georgia and Wisconsin, will be required to impose work requirements on those enrollees.

, launched in July 2023, already includes a requirement that newly eligible adults report at least 80 hours of work or community engagement. Federal approval for the program expires at the end of December, and the state . will have to implement a work requirement by Jan. 1.

South Carolina applied in June for federal approval to to nondisabled parents and caregivers ages 19 to 64 who earn 67-100% of the federal poverty level. That’s about $18,300 to $27,300 a year for a family of three. The state’s application is pending with CMS, and if approved would implement work requirements for those newly eligible adults.

Gaetz said if the Florida legislation were approved, the state would develop a “business plan” for implementing work requirements and seek CMS approval.

It is unclear how much it would cost, but experience in states with Medicaid work requirements suggests that implementation would be expensive. States must upgrade their eligibility and enrollment systems, hire additional staff, and inform the public of the new mandate.

For its program, Georgia spent about $54.2 million on administrative changes out of $80.3 million in total spending for the program from October 2020 to March 2025, according to from the U.S. Government Accountability Office. Most of the administrative spending — about $47.4 million, or 88% — came from the federal government.

Georgia’s experience echoes others’, according to a 2019 of states that received approval to implement Medicaid work requirements during the first Trump administration. That report focused on five states — Arkansas, Indiana, Kentucky, New Hampshire, and Wisconsin — and estimated costs would total $408 million. They ranged from $6 million in New Hampshire to more than $270 million in Kentucky, though those figures did not reflect all the state costs.

Florida’s computer infrastructure for collecting and verifying information and determining eligibility is more than 30 years old and is being replaced. That is anticipated to be completed in 2028 and cost more than $180 million.

A legislative analysis of Gaetz’s bill estimated that if 1 in 4 people affected by the proposed work requirement were to lose Medicaid coverage, the state could save about $80 million a year.

Darius, with Florida Voices for Health, said those potential savings hardly seem worth the effort.

“It requires the state to build this giant regulatory-like framework and to rebuild systems, and to employ a whole set of people to chase down the very small number of folks who would ultimately be touched by this,” he said.

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The boys sat in one waiting room and then another. Two hours and 20 minutes passed before the two were isolated, according to obtained by Â鶹ŮÓÅ Health News. Then two more hours ticked by.

As the sun rose, an emergency room doctor called the state epidemiologist and described the symptoms. The public health official told him to keep the kids in the hospital and quarantine them. Shortly after that call, the patients were diagnosed.

It was measles.

Hospital staff gave the father instructions on how to quarantine the family and sent them home.

The virus exposed at least 26 other people in the hospital that January day, federal investigators determined. Health inspectors for CMS investigated the measles infections and other failures in care and concluded that the twins’ symptoms should have triggered an isolation procedure for which Mission Hospital staffers had trained seven months earlier. CMS designated Mission in “” for the exposures and other unrelated issues, one of the most severe sanctions a hospital can face, threatening to pull federal funding unless it remedied the problems.

A spokesperson for Mission said its staff was trained to manage airborne sickness and is following federal rules.

As U.S. hospitals face an increasing risk of encountering measles, and pressure to immediately spot it, health care workers face an unusual barrier: Many don’t know what it looks like.

“There’s a word, ‘morbilliform’ — it means measles-like, and there are lots of viruses that can cause a rash that looks like a measles rash in children,” said Theresa Flynn, a pediatrician in Raleigh and the president of the North Carolina Pediatric Society. In 30 years in health care, she’s never seen a measles case, she said.

North Carolina has reported more than 20 cases since mid-December, and more than 3,000 people nationwide have been infected since the beginning of 2025.

Children in areas with low immunization rates to outbreaks, triggering public health campaigns to promote the measles vaccine. CMS Administrator Mehmet Oz encouraged vaccination in a .

, mumps, and rubella vaccine, a person has a 3% chance of getting the virus after exposure. If exposed, an unvaccinated person has a 90% chance of being infected, according to the CDC. It can take a week or two before someone infected with measles shows symptoms.

But for the past year, the Trump administration has . Health and Human Services Secretary Robert F. Kennedy Jr. was a longtime anti-vaccine activist before taking office, and under his leadership the Centers for Disease Control and Prevention has reduced the number of shots recommended to children.

After measles erupted in West Texas last year, Kennedy publicly for the virus, including steroids, antibiotics, and cod liver oil.

Infectious disease experts and doctors said federal policies have left health care workers to lean on their own experience or guidance from their state public health systems to fight a disease that many are preparing to see for the first time and that initially may behave like the common cold.

“As measles becomes more common, all of us are leveling up in our ability to recognize and immediately respond to suspected measles,” Flynn said.

Three C’s

Officially, the U.S. has maintained “measles elimination status” since 2000, meaning the U.S. has avoided significant spread of the virus. After outbreaks in Texas, Arizona, Utah, and now South Carolina, the nation is on track to lose that designation before the year is out. tie elimination status to a lack of a continuous viral spread persisting for 12 months.

One county in South Carolina, an hour’s drive from Asheville, has had in the current outbreak — more than Texas reported in all of 2025.

Symptoms of measles, a virus that , can include fever, cough, a blotchy rash, and red, watery eyes. Researchers consider measles among the most contagious diseases, and the virus may remain active for up to two hours after an infected person leaves a room.

It can be lethal, with .

In 2025, two children in Texas and one adult in New Mexico died of measles.

Along with tracking data, the CDC on its website for diagnosing measles. State public health agencies and some counties have developed dashboards tracing the disease as it surfaces in such places as hospitals, schools, grocery stores, and airports. Large hospital systems developed staff training protocols last year and shared them with area clinics.

Look for the three C’s, : cough, coryza (cold symptoms), and conjunctivitis (pink eye). According to CMS inspection records, HCA Healthcare, which owns Mission Hospital, trained Mission staff on the three C’s early last year. On top of failing to isolate the twin patients right away, Mission staff didn’t have a designated area for patients with respiratory symptoms, federal inspectors found.

The CDC advises health workers to immediately place patients with measles or suspicious symptoms in a special isolation room, where airflow is controlled inward. The Mission patients were separated from other patients only by plastic partitions, according to the CMS records.

Mission spokesperson Nancy Lindell said the hospital was equipped and staffed to manage airborne illnesses like measles.

“Our hospital has been working with state and federal health officials on proactive preparedness, and we are following guidance provided by the CDC,” Lindell said.

(Dogwood Health Trust, a private foundation established as part of HCA’s purchase of Mission Health, helps fund Â鶹ŮÓÅ Health News coverage.)

Most U.S. clinics and hospitals have never experienced measles cases, said Patsy Stinchfield, a former president of the National Foundation for Infectious Diseases and a nurse practitioner. She called CMS’ Immediate Jeopardy penalty for Mission “extreme,” given the virus can be so difficult to identify.

“In the middle of winter right now, measles looks like every other viral respiratory infection that kids come in with,” Stinchfield said.

The CDC has been less communicative in the past year with clinics about their response to outbreaks, said health workers and infectious disease experts. This disconnect began soon after Trump took office, according to a Â鶹ŮÓÅ Health News investigation finding that health officials in West Texas were unable to talk with CDC scientists as measles surged last February and March.

“We certainly do not feel the support or guidance from the CDC right now,” said Brigette Fogleman, a pediatrician at Asheville Children’s Medical Center, where staff members have come up with their own method of staving off the virus: screening patients over the phone and in their cars before a visit.

In response to questions about how the CDC is supporting health care organizations during the measles resurgence, spokesperson Andrew Nixon said that “state and local health departments have the lead in investigating measles cases and outbreaks” and that the CDC provides support “as requested.” He pointed to numerous guides and simulation tools the agency has developed as the virus has spread.

Jennifer Nuzzo, an epidemiologist and director of the Pandemic Center at Brown University, acknowledged that diagnosing measles is a major challenge, emphasizing that coordination among public health agencies is critical in overcoming that challenge.

Stinchfield attributed the spread of measles to CDC leaders’ lack of communication to clinics and to the public — no ads on buses, no social media campaigns, no sense of urgency. “When you are at the highest level of measles cases in 30 years, we should be seeing lots more from our federal government,” Stinchfield said. “And I think it’s harming kids and causing an inordinate amount of work and expense that really doesn’t belong in health care right now.”

State Prepares for More Measles Cases

In North Carolina’s Buncombe County, home to Asheville and Mission Hospital, health officials had counted seven measles cases by mid-February and anticipated many more, according to state epidemiologist Zack Moore. It’s unclear how many of those are connected to the Mission exposure.

hosted by the county, urging families to get their children vaccinated, debunking vaccine misinformation, and updating parents on local case numbers.

Days before, a local private school had quarantined about 100 students after an exposure. were immunized, according to state data.

At Fogleman’s clinic, parents are asked to wait in their vehicles with their children, and staffers come out to screen them there. Some parents resist vaccination and note recently weakened federal recommendations around measles vaccines , she said.

Kennedy handpicked the committee members who made those recommendations, with several members having spread medical misinformation in the past.

One parent recently told a nurse, “It’s only measles. It doesn’t kill anybody,” Fogleman said.

That’s not true, her team must explain.

As the clinic holds families in the parking lot, trying to figure out whether symptoms point to the dangerous virus, it’s difficult to get the message across, Fogleman said, especially when the nation’s top disease agency hasn’t conducted a widespread information campaign about the risks from measles — or the vaccine’s ability to almost entirely prevent it.

“We can’t change the past,” Fogleman said. “All we can do is try to educate and move forward.”

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La mujer de 59 años, que vive en Harrisburg, Carolina del Norte, cerró el año pasado su escuela de artes circenses sin fines de lucro porque ya no veía lo suficientemente bien como para estar al día con todo el papeleo administrativo. Luego trabajó un tiempo haciendo masas en una pizzería. Ahora clasifica materiales reciclables, como latas y botellas, en un lugar de conciertos local. Es su principal fuente de ingresos, pero el trabajo no es durante todo el año.

“Este lugar me conoce, y este lugar me quiere”, dijo Kelley sobre su empleador. “Aquí no tengo que explicar por qué no puedo leer”.

Kelley vive en una casa rodante y sobrevive con menos de $10.000 al año. Dice que eso es posible, en parte, gracias a su cobertura de salud de Medicaid, que le cubre medicamentos para la artritis y la ansiedad, y le permite ir al doctor para controlar su hipertensión.

Pero le preocupa perder esa cobertura el año que viene, cuando entren en vigencia nuevas reglas que exigirán a millones de personas como ella trabajar, hacer voluntariado, ir a la escuela o realizar otras actividades que califiquen durante al menos 80 horas al mes.

“Ahora mismo tengo miedo”, dijo.

Antes de que se promulgaran los cambios para acceder a esta cobertura, legisladores republicanos sugirieron que hombres jóvenes y desempleados estaban abusando del programa gubernamental de salud que ofrece cobertura médica a millones de personas con bajos ingresos o con alguna discapacidad.

Medicaid no está pensado para “hombres de 29 años sentados en el sofá jugando videojuegos”, dijo Mike Johnson, presidente de la Cámara de Representantes, .

Pero en realidad, los adultos de entre 50 y 64 años, especialmente las mujeres, son quienes probablemente por las nuevas reglas, según explicó Jennifer Tolbert, subdirectora del Programa sobre Medicaid y Personas sin Seguro de Â鶹ŮÓÅ, una organización sin fines de lucro de información sobre salud de la cual Â鶹ŮÓÅ Health News forma parte.

Para Kelley y otras personas, los requisitos laborales crearán obstáculos para mantener su cobertura, explicó Tolbert. Muchos podrían perder Medicaid, poniendo en riesgo su salud física y financiera.

A partir de enero de 2027, unos 20 millones de estadounidenses de bajos ingresos en 42 estados y el Distrito de Columbia tendrán que cumplir con los requisitos de actividad para obtener o conservar esta cobertura.

Alabama, Florida, Kansas, Mississippi, Carolina del Sur, Tennessee, Texas y Wyoming no ampliaron sus programas de Medicaid para cubrir a más adultos de bajos ingresos bajo la Ley de Cuidado de Salud a Bajo Precio (ACA), por lo que no tendrán que implementar las reglas de trabajo.

La no partidista Oficina de Presupuesto del Congreso, prevé que las reglas de trabajo resulten en al menos 5 millones de personas menos bajo Medicaid en la próxima década.

, estas reglas son el principal factor de pérdida de cobertura dentro de la ley presupuestaria republicana, la cual recorta cerca de $1.000 millones para compensar reducciones de impuestos que benefician principalmente a personas con mayores ingresos y para aumentar la seguridad fronteriza.

“Estamos hablando de ahorrar dinero a costa de vidas humanas”, dijo Jane Tavares, investigadora en gerontología de la Universidad de Massachusetts en Boston. “El requisito de trabajo es solo una herramienta para lograr eso”.

Andrew Nixon, vocero del Departamento de Salud y Servicios Humanos, dijo que exigir a los “adultos sin discapacidades” que trabajen garantiza la “sostenibilidad a largo plazo” de Medicaid, mientras protege a las personas más vulnerables.

Las personas con discapacidades, quienes cuidan a familiares, personas embarazadas o en posparto, veteranos con discapacidades totales y otras personas que enfrentan dificultades médicas o personales están exentas de la regla de trabajo, indicó Nixon a Â鶹ŮÓÅ Health News.

La expansión de Medicaid ha sido un salvavidas para adultos de mediana edad que, de otro modo, no tendrían seguro médico, . Medicaid cubre a 1 de cada 5 estadounidenses de entre 50 y 64 años, dándoles acceso a atención médica hasta que califican para Medicare a los 65 años.

Entre las mujeres beneficiarias de Medicaid, las que tienen entre 50 y 64 años enfrentan más desafíos para conservar su cobertura que las más jóvenes, y suelen tener una mayor necesidad de servicios de salud, explicó Tolbert.

Estas mujeres de mediana edad tienen menos probabilidades de trabajar el número requerido de horas porque muchas son cuidadoras familiares o tienen problemas de salud que limitan su capacidad para trabajar, agregó.

Tavares y otros investigadores hallaron que de la población total de Medicaid que se considera “apta para trabajar” no trabaja. Este grupo está compuesto en su mayoría por mujeres muy pobres que han salido de la fuerza laboral para convertirse en cuidadoras. Entre ellas, 1 de cada 4 tiene 50 años o más.

“No son adultos jóvenes saludables simplemente perdiendo el tiempo”, escribieron los investigadores.

Además, dificultar el acceso a la cobertura de Medicaid “podría en realidad dificultar que estas personas trabajen”, ya que sus problemas de salud no recibirían tratamiento, advirtió Tolbert. De todas formas, si este grupo pierde la cobertura, sus condiciones crónicas igual necesitarán atención, señaló.

Muchos adultos empiezan a tener problemas de salud antes de ser elegibles para Medicare.

Si las personas mayores no tienen recursos para tratar sus problemas de salud antes de los 65 años, llegarán más enfermas a Medicare, lo que podría generar mayores costos para ese programa, apuntaron expertos en políticas de salud.

Muchas personas de entre 50 y principios de los 60 años ya no trabajan porque son cuidadoras de tiempo completo de hijos o familiares mayores, explicaron defensores, quienes se refieren a este grupo como “la generación sándwich”.

La ley presupuestaria republicana permite que algunos cuidadores queden exentos de las reglas de trabajo de Medicaid, pero las excepciones son “muy limitadas”, dijo Nicole Jorwic, directora de programas del grupo Caring Across Generations.

Le preocupa que personas que deberían calificar para una exención queden fuera por errores o complicaciones.

“Vamos a ver a más cuidadores familiares enfermándose, dejando de atender su propia salud y a más familias enfrentando crisis”, dijo Jorwic.

Paula Wallace, de 63 años, residente de Chidester, Arkansas, dijo que trabajó la mayor parte de su vida adulta y ahora dedica sus días a cuidar a su esposo, quien tiene cirrosis avanzada.

Después de años sin seguro, recientemente obtuvo cobertura gracias a la expansión de Medicaid en su estado, lo que significa que tendrá que cumplir con los nuevos requisitos laborales para conservarla. Pero le cuesta imaginar cómo podrá hacerlo.

“Como soy su única cuidadora, no puedo salir a trabajar fuera de casa”, dijo.

Su esposo recibe beneficios del Seguro por Incapacidad del Seguro Social, explicó, y la ley dice que ella debería quedar exenta de los requisitos de trabajo como cuidadora de tiempo completo de una persona con discapacidad.

Pero las autoridades federales aún no han emitido instrucciones específicas sobre cómo definir esa exención. Y la experiencia de Arkansas y Georgia —los únicos estados que han implementado programas de trabajo en Medicaid— muestra que muchas personas beneficiarias tienen dificultades para navegar sistemas de beneficios complejos.

“Estoy muy preocupada”, dijo Wallace.

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The 59-year-old, who lives in Harrisburg, North Carolina, closed her nonprofit circus arts school last year because she could no longer see well enough to complete paperwork. She then worked making dough at a pizza shop for a bit. Currently, she sorts recyclable materials, including cans and bottles, at a local concert venue. It is her main source of income ― but the work isn’t year-round.

“This place knows me, and this place loves me,” Kelley said of her employer. “I don’t have to explain to this place why I can’t read.”

Kelley, who lives in a camper, survives on less than $10,000 a year. She says that’s possible, in part, because of her Medicaid health coverage, which pays for arthritis and anxiety medications and has enabled doctor visits to manage high blood pressure.

But she worries about losing that coverage next year, when rules take effect requiring millions of people like Kelley to work, volunteer, attend school, or perform other qualifying activities for at least 80 hours a month.

“I’m scared right now,” she said.

Before the coverage changes were signed into law, Republican lawmakers suggested that young, unemployed men were taking advantage of the government health insurance program that provides coverage to millions of low-income or disabled people. Medicaid is not intended for “29-year-old males sitting on their couches playing video games,” House .

But, in reality, adults ages 50 to 64, particularly women, are likely to be , said Jennifer Tolbert, deputy director of the Program on Medicaid and the Uninsured at Â鶹ŮÓÅ, a health information nonprofit that includes Â鶹ŮÓÅ Health News. For Kelley and others, the work requirements will create barriers to keeping their coverage, Tolbert said. Many could lose Medicaid as a result, putting their physical and financial health at risk.

Starting next January, some 20 million low-income Americans in 42 states and Washington, D.C., will need to meet the activity requirements to gain or keep Medicaid health coverage.

Alabama, Florida, Kansas, Mississippi, South Carolina, Tennessee, Texas, and Wyoming didn’t expand their Medicaid programs to cover additional low-income adults under the Affordable Care Act, so they won’t have to implement the work rules.

The nonpartisan Congressional Budget Office predicts the work rules will result in at least 5 million fewer people with Medicaid coverage over the next decade. Work rules are the largest driver of coverage losses in the GOP budget law, which slashes nearly $1 trillion to offset the costs of tax breaks that mainly benefit the rich and increase border security, .

“We’re talking about saving money at the expense of people’s lives,” said Jane Tavares, a gerontology researcher at the University of Massachusetts Boston. “The work requirement is just a tool to do that.”

Department of Health and Human Services spokesperson Andrew Nixon said requiring “able-bodied adults” to work ensures Medicaid’s “long-term sustainability” while safeguarding it for the vulnerable. Exempt are people with disabilities, caregivers, pregnant and postpartum individuals, veterans with total disabilities, and others facing medical or personal hardship, Nixon told Â鶹ŮÓÅ Health News.

Medicaid expansion has provided a lifeline for middle-aged adults who otherwise would lack insurance, according to . Medicaid covers 1 in 5 Americans ages 50 to 64, giving them access to health coverage before they qualify for Medicare at age 65.

Among women on Medicaid, those ages 50 through 64 are more likely to face challenges keeping their coverage than their younger female peers and are likely to have a greater need for health care services, Tolbert said.

These middle-aged women are less likely to be working the required number of hours because many serve as family caregivers or have illnesses that limit their ability to work, Tolbert said.

Tavares and other researchers found that of the total Medicaid population is considered “able-bodied” and not working. This group consists largely of women who are very poor and have left the workforce to become caretakers. Among this group, 1 in 4 are 50 or older.

“They are not healthy young adults just hanging out,” the researchers stated.

Plus, making it harder for people to maintain Medicaid coverage “may actually undermine their ability to work” because their health problems go untreated, Tolbert said. Regardless, if this group loses coverage, their chronic health conditions will still need to be managed, she said.

Adults often start wrestling with health issues before they’re eligible for Medicare.

If older adults don’t have the means to pay to address health issues before age 65, they’ll ultimately be sicker when they qualify for Medicare, costing the program more money, health policy researchers said.

Many adults in their 50s or early 60s are no longer working because they’re full-time caregivers for children or older family members, said caregiver advocates, who refer to people in the group as “the sandwich generation.”

The GOP budget law does allow some caregivers to be exempted from the Medicaid work rules, but the carve-outs are “very narrow,” said Nicole Jorwic, chief program officer for the group Caring Across Generations.

She worries that people who should qualify for an exemption will fall through the cracks.

“You’re going to see family caregivers getting sicker, continuing to forgo their own care, and then you're going to see more and more families in crisis situations,” Jorwic said.

Paula Wallace, 63, of Chidester, Arkansas, said she worked most of her adult life and now spends her days helping her husband manage his advanced cirrhosis.

After years of being uninsured, she recently gained coverage through her state’s Medicaid expansion, which means she’ll have to comply with the new work requirements to keep it. But she’s having a hard time seeing how that will be possible.

“With me being his only caregiver, I can’t go out and work away from home,” she said.

Wallace’s husband receives Social Security Disability Insurance, she said, and the law says she should be exempt from the work rules as a full-time caregiver for someone with a disability.

But federal officials have yet to issue specific guidance on how to define that exemption. And experience from Arkansas and Georgia ― the only states to have run Medicaid work programs ― shows that many enrollees struggle to navigate complicated benefits systems.

“I’m very concerned,” Wallace said.

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Loretta Forbes realized she would have to drop her plan after her monthly ACA marketplace premiums jumped tenfold in 2026. So the 56-year-old, who lives outside Nashville, Tennessee, started rationing her rheumatoid arthritis medications. Her husband, Jim, gave up on his fledgling handyman business and started looking for a job with insurance coverage.

And when Nicole Wipp learned the monthly premium for her family’s ACA plan would be more than their mortgage payment, she and her husband decided to drop their family plan and buy coverage only for their 15-year-old son.

After crunching the numbers, Wipp, 54, a self-employed lawyer in Aiken, South Carolina, said she and her family made the tough call.

“We decided that, ultimately, it would be better for us to gamble.”

Despite a contentious back-and-forth and the longest government shutdown in history last fall, the GOP-led Congress allowed enhanced ACA subsidies, which had helped millions of Americans cover all or part of their marketplace premiums since 2021, to expire on Dec. 31. With the loss of the subsidies and health care costs already surging, more middle-income people face tough decisions about their health coverage this year.

Hulsman, Forbes, and Wipp don’t qualify for Medicaid, the public insurance program for those with low incomes or disabilities. But like many others, they are being squeezed by the increasing costs of groceries, housing, and other necessities. Rising monthly health insurance premiums, along with copayments, high deductibles, and other out-of-pocket medical costs, can often push families like these to the brink.

More than 80% of Americans said their cost of living has increased in the past year, according to from that includes Â鶹ŮÓÅ Health News. Health care costs ranked at the top of their concerns, with about two-thirds saying that they are somewhat or very worried about affording health care — more than said the same about other necessities, such as food and housing, the poll found., director of private coverage at the health consumer group Families USA. “This is an especially critical time for Congress to do something.”

Most Republican lawmakers have refused to renew the enhanced subsidies. Most of the public says that inaction by Congress was the “wrong thing,” according to the Â鶹ŮÓÅ poll. Instead, GOP lawmakers have advocated for an expansion of health savings accounts and for more plans with lower premiums and steeper deductibles and copays that don’t reduce overall costs.

President Donald Trump released in January with few details about how to lower out-of-pocket costs for millions of Americans. The One Big Beautiful Bill Act, which he signed in July, is expected to leave millions uninsured over the next decade as it reduces federal health spending by nearly $1 trillion, mostly from Medicaid.

Already about 1.2 million fewer people have signed up for plans for this year under the ACA, also known as Obamacare, according to . Health policy analysts expect more people to stop making payments and drop coverage in the coming months. ACA marketplace insurers have said that they are charging 4 percentage points more in 2026 because they expect healthier people to drop plans as enhanced tax credits expire, leaving more sick and high-cost patients.

Rising costs and lack of congressional action are forcing many to make “untenable choices,” said , executive director and co-founder of the Center for Children and Families at Georgetown University.

“People are faced with absorbing this huge financial and health risk,” she said.

Forbes, the woman with rheumatoid arthritis near Nashville, had been on an ACA marketplace plan since 2018. But this year she and her husband, Jim, dropped their coverage after learning the monthly premium would jump from $250 to $2,500 because the enhanced subsidies expired. Jim, 59, gave up his handyman business and began searching for a job with health insurance.

“We were like: ‘OK, we can’t breathe. We’re gonna tap out,’” said Forbes, who was diagnosed with cervical cancer in 2021. Last year she lost her job at a retirement facility because she couldn’t work after she had a hysterectomy.

A day before their ACA coverage lapsed, her husband got a job offer at a property management company that provides health coverage. In January, they learned that Forbes was approved for Medicare because of her disability. The $155 monthly premium is automatically deducted from her disability check, she said.

Forbes’ Medicare plan starts in February, just in time for her next cancer screening.

“You cannot imagine what a relief it is to know I will have care,” Forbes said.

Even those who are insured face drastically higher out-of-pocket costs. This year, health insurers’ premiums for ACA marketplace plans , the result of higher hospital costs, the popularity of pricey GLP-1 drugs for obesity and diabetes, and the threat of tariffs, according to Â鶹ŮÓÅ. Nearly 4 in 10 adults said they were skipping or postponing necessary care because of costs, showed.

Hulsman, the Louisville shop owner, said he takes home about $33,000 a year from his business. Last year he paid about $105 a month for a gold plan on the marketplace, with a $750 deductible. This year, with the loss of the enhanced subsidy, Hulsman is paying the same monthly premium for a “bronze” plan, but with a deductible of $8,450, which he must pay out-of-pocket before his insurer starts paying for care. On average, deductibles for bronze plans are more than four times those of gold plans, according to .

Hulsman didn’t consider dropping health insurance, because Kentucky has limited . But he said he’ll try to get an estimate if he needs to go to a doctor. And he’s worried that a major accident could wipe out his skate shop. He won’t be able to buy inventory or pay shop bills if he has to meet his full deductible, he said.

“I’m just riding the line right now,” the skateboarder said. “One slip and it’s gonna be uncomfortable.”

In South Carolina, Wipp dragged her family to get routine vaccinations on New Year’s Eve — the last day that she and her husband had health coverage.

This year’s monthly premium for a bare-bones bronze family plan would have cost them $1,400, up from $900 last year. They would still have faced high copays for doctor visits and need to meet a deductible of more than $10,000. Instead, they’re paying around $200 to cover just her son.

Wipp, who has a rare condition that causes cysts and other growths to form in the lungs, said she and her husband plan to pay out-of-pocket this year for any initial preventive care. Their second source of money, for larger medical expenses, is an old health savings account. But she said that account doesn’t have enough to cover a major accident or illness. And Wipp can’t add to the account while she is uninsured.

“The third source would be, I don’t know,” Wipp said. “The fourth is bankruptcy.”

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Loretta Forbes se dio cuenta de que tendría que dejar su plan después de que sus primas mensuales del mercado de seguros de ACA se multiplicaran por diez en 2026. Así que esta mujer de 56 años, que vive en las afueras de Nashville, Tennessee, empezó a racionar sus medicamentos para la artritis reumatoide. Su esposo, Jim, abandonó su negocio de reparaciones domésticas que recién comenzaba para buscar un trabajo que ofreciera cobertura médica.

Y cuando Nicole Wipp se enteró de que la prima mensual de su plan familiar de ACA sería más alta que el pago de su hipoteca, ella y su esposo decidieron cancelarlo y comprar cobertura únicamente para su hijo de 15 años.

Después de hacer cuentas, Wipp, abogada independiente de 54 años en Aiken, Carolina del Sur, dijo que su familia tomó una decisión difícil.

“Decidimos que, al final, nuestra única salida era arriesgarnos”.

A pesar de las intensas discusiones y del cierre del gobierno más largo en la historia ocurrido el otoño pasado, el Congreso liderado por el Partido Republicano permitió que los subsidios mejorados de ACA expiraran el pasado 31 de diciembre.

Desde 2021, estos subsidios habían ayudado a millones de personas a cubrir total o parcialmente sus primas en el mercado de seguros. Con su pérdida y el aumento ya existente en los costos de la atención médica, cada vez más personas de ingresos medios enfrentan decisiones imposibles sobre su cobertura este año.

Hulsman, Forbes y Wipp no califican para Medicaid, el programa público de salud para personas con ingresos bajos o que viven con discapacidades. Pero como muchos otros, se han visto afectados por el aumento de los precios de alimentos, vivienda y otras necesidades básicas. Las primas mensuales cada vez más altas, junto con copagos, deducibles elevados y otros gastos médicos de su bolsillo, suelen llevar a familias como estas al borde de la desesperación.

Más del 80% de los estadounidenses dijeron que su costo de vida aumentó el último año, según realizada por , una dedicada a la información sobre salud que incluye a Â鶹ŮÓÅ Health News.

Los costos de atención médica encabezaron la lista de preocupaciones: alrededor de dos tercios dijeron que les preocupa algo o mucho poder pagarla: más que lo que dijeron sobre otros bienes básicos como alimentos o vivienda.

“Las primas están volviéndose realmente inasequibles para muchas personas. El costo tanto de la atención médica como de otras necesidades básicas está subiendo”, dijo , directora de cobertura privada en el grupo de consumidores de salud Families USA. “Este es un momento especialmente crítico para que el Congreso actúe”.

La mayoría de los legisladores republicanos se ha negado a renovar los subsidios mejorados. Según la encuesta de Â鶹ŮÓÅ, la mayoría de la población considera que la inacción del Congreso fue “una decisión equivocada”. En cambio, los legisladores republicanos han promovido la expansión de las cuentas de ahorro de salud y planes con primas más bajas, pero con deducibles y copagos más altos, que no bajan los costos generales.

El presidente Donald Trump publicó en enero con pocos detalles sobre cómo reducir los gastos de bolsillo de millones de personas. La ley conocida como One Big Beautiful Bill Act, que el presidente firmó en julio, se espera que deje sin seguro a millones durante la próxima década, al reducir el gasto federal en salud en casi $1.000 millones, principalmente a través de recortes a Medicaid.

Según , este año cerca de 1,2 millones de personas menos se inscribieron en planes de ACA, también conocida como Obamacare. Analistas de políticas de salud esperan que más personas dejen de pagar sus primas y cancelen su cobertura en los próximos meses.

Las aseguradoras del mercado de ACA han informado que están cobrando 4 puntos porcentuales más en 2026 porque anticipan que las personas más saludables abandonarán sus planes luego del fin de los subsidios mejorados, dejando en el sistema a pacientes más enfermos y costosos.

El aumento de los costos y la falta de acción del Congreso obligan a muchos a tomar “decisiones insostenibles”, dijo , directora ejecutiva y cofundadora del Centro para Niños y Familias de la Universidad Georgetown.

“Las personas enfrentan un enorme riesgo financiero y de salud”, agregó.

Forbes, la mujer con artritis reumatoide cerca de Nashville, tenía un plan del mercado de ACA desde 2018. Pero este año ella y su esposo, Jim, cancelaron su cobertura después de enterarse de que la prima mensual subiría de $250 a $2.500, debido a la expiración de los subsidios. Jim, de 59 años, dejó su negocio de reparaciones domésticas y empezó a buscar un empleo que ofrezca seguro médico.

“Fue como decir: ‘OK, no podemos respirar. Tenemos que rendirnos’”, contó Forbes, quien fue diagnosticada con cáncer de cuello uterino en 2021. El año pasado perdió su empleo en un centro para personas jubiladas porque no pudo seguir trabajando tras una histerectomía.

Un día antes de que venciera su cobertura de ACA, su esposo recibió una oferta de trabajo en una empresa de administración de propiedades que ofrece seguro médico. En enero, se enteraron de que Forbes fue aprobada para recibir Medicare debido a su discapacidad. Dijo que los $155 mensuales de prima se descuentan automáticamente de su cheque de discapacidad.

El plan de Medicare de Forbes comienza en febrero, justo a tiempo para su próximo examen de detección de cáncer.

“No se imaginan el alivio que siento al saber que tendré atención médica”, dijo Forbes.

Incluso quienes tienen seguro médico enfrentan gastos de bolsillo mucho más altos.

Este año, las primas de los planes del mercado de ACA debido al alza en los costos hospitalarios, la popularidad de medicamentos costosos como los GLP-1 para la obesidad y la diabetes, y la amenaza de aranceles, según Â鶹ŮÓÅ. Casi 4 de cada 10 adultos dijeron que iban a renunciar o a retrasar la atención médica necesaria por los costos, según .

Hulsman, el dueño de la tienda en Louisville, dijo que gana unos $33.000 al año con su negocio. El año pasado pagaba unos $105 al mes por un plan “Oro” del mercado, con un deducible de $750. Este año, sin el subsidio mejorado, Hulsman paga lo mismo por un plan “Bronce”, pero con un deducible de $8.450, que debe cubrir completamente antes de que la aseguradora empiece a pagar.

En promedio, los deducibles de los planes “Bronce” son más de cuatro veces más altos que los de los planes “Oro”, según un .

Hulsman ni siquiera consideró dejar de tener seguro médico, ya que Kentucky ofrece . Pero dijo que intentará conocer el precio antes de ir al médico. Y le preocupa que un accidente grave pueda llevar a la quiebra a su tienda de patinetas. Si tiene que cubrir todo el deducible, no podrá comprar inventario ni pagar las cuentas del negocio.

“En este momento estoy aguantando como puedo”, dijo el skater. “Un tropiezo y la cosa se pone fea”.

En Carolina del Sur, Wipp llevó a su familia a vacunarse el 31 de diciembre, el último día en que ella y su esposo tenían cobertura médica.

La prima mensual este año para un plan familiar básico “Bronce” les habría costado $1.400, frente a $900 el año pasado. Aun así, habrían tenido copagos altos para visitas médicas y un deducible de más de $10.000. En cambio, están pagando unos $200 por la cobertura de su hijo.

Wipp, quien tiene una enfermedad poco común que causa quistes y otros crecimientos en los pulmones, dijo que ella y su esposo planean pagar de su bolsillo este año cualquier atención preventiva inicial. Su segunda fuente de dinero para gastos médicos mayores es una antigua cuenta de ahorro de salud. Pero dijo que esa cuenta no tiene suficiente dinero para cubrir un accidente o enfermedad grave.

Y no puede seguir contribuyendo a esa cuenta mientras no tenga seguro.

“La tercera fuente de dinero sería… no sé”, dijo Wipp. “La cuarta es la bancarrota”.

¿Tienes dificultades para pagar tu seguro médico? ¿Has decidido renunciar a la cobertura? Haz clic aquí para contactar a Â鶹ŮÓÅ Health News y compartir tu historia.

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