El gobierno federal no lleva un registro de cuántos niños han ingresado a este sistema como consecuencia de operativos de control migratorio, lo que dificulta saber con qué frecuencia ocurre.

En Oregon, hasta febrero, dos niños habían sido ubicados en hogares temporales luego de ser separados de sus padres en casos de detención migratoria, según Jake Sunderland, vocero del Departamento de Servicios Humanos del estado.

“Antes del otoño de 2025, esto nunca había ocurrido”, aseguró.

Hasta mediados de febrero, casi por el Servicio de Inmigración y Control de Aduanas (ICE, por sus siglas en inglés).

El récord de 73.000 personas detenidas en enero representó un comparado con el año anterior. Según una , hasta agosto de 2025, padres de 11.000 niños con ciudadanía estadounidense habían sido detenidos desde el inicio del mandato de Trump.

El medio NOTUS que por lo menos 32 niños de padres detenidos o deportados habían sido colocados en hogares temporales en siete estados.

Sandy Santana, director ejecutivo de Children’s Rights, una organización de defensa legal, dijo que sospechan que el número real es mucho mayor.

“Ese número nos parece realmente muy bajo”, dijo.

La separación de sus padres es profundamente traumática para los niños y suele provocar , incluido el trastorno de estrés postraumático. El estrés prolongado e intenso también puede causar infecciones más frecuentes en los niños y problemas en el desarrollo. Ese “estrés tóxico” también se asocia con daños en áreas del cerebro responsables del aprendizaje y la memoria, , una organización sin fines de lucro dedicada a la información en salud que incluye a 麻豆女优 Health News.

Durante el primer mandato de Trump, . y modificaron algunas leyes para permitir que tutores recibieran derechos parentales temporales en casos relacionados con migración. Ahora, tras el regreso de Trump al poder el año pasado, el aumento en los controles migratorios está impulsando una nueva ola de respuestas estatales.

En Nueva Jersey, legisladores están considerando un proyecto para modificar estatal que permite que los padres designen tutores temporales para casos de muerte o incapacidad. La nueva versión agregaría como otra razón válida la separación por control migratorio federal.

El año pasado, Nevada y California aprobaron leyes para proteger a las familias separadas por acciones de control migratorio. La ley de California, llamada Ley del Plan de Preparación Familiar (), permite que los padres designen tutores y compartan derechos de custodia, en lugar de que sus derechos se suspendan mientras están detenidos. Si son liberados y pueden reunirse con sus hijos, recuperan sus derechos parentales completos.

Existen importantes obstáculos legales para la reunificación familiar una vez que un niño entra bajo custodia estatal, explicó Juan Guzman, director del tribunal de menores y tutela en Alliance for Children’s Rights, una organización de defensa legal en Los Ángeles.

Si el niño es colocado en cuidado temporal y ni el padre ni la madre pueden participar en los procesos judiciales requeridos porque están detenidos o han sido deportados, es menos probable que puedan volver a reunirse con su hijo, afirmó Guzman.

Se estima que que son ciudadanos estadounidenses viven con un padre u otro familiar que no tiene estatus migratorio legal, según investigaciones de Brookings Institution, un centro de estudios en Washington, D.C. Dentro de ese grupo, 2,6 millones de niños tienen a ambos padres sin estatus legal.

Santana dijo que es probable que el número de casos de separación familiar aumente a medida que el gobierno de Trump avance con su campaña migratoria. Por lo tanto, más niños corren el riesgo de terminar en el sistema de cuidado temporal.

Las exigen que la agencia se esfuerce en facilitar la participación de los padres detenidos en los procedimientos de los tribunales de familia, de bienestar infantil o de tutela, pero Santana indicó que no está claro que el ICE esté cumpliendo con estas normas.

Los funcionarios de ICE no respondieron a las solicitudes de comentarios para este artículo.

Antes de que cambiara la ley de California, la única razón por la que un padre podía compartir derechos de custodia con otro tutor era si tenía una enfermedad terminal, contó Guzman.

Ahora, si los padres preparan un plan con anticipación y designan a alguien de confianza que pueda hacerse cargo de sus hijos si llegara a ser necesario, la agencia estatal de bienestar infantil puede iniciar el proceso para entregar a los niños a esa persona sin tener que abrir un caso formal de cuidado temporal, agregó.

Si bien el año pasado los legisladores de Nevada ampliaron una ley de tutela existente para incluir la aplicación de las leyes de inmigración, la medida exige a los padres dar el paso adicional de presentar documentación notariada ante la oficina del Secretario de Estado, señaló Cristian González-Pérez, abogado de Make the Road Nevada, una organización sin fines de lucro que brinda recursos a las comunidades inmigrantes.

González-Pérez señaló que algunos inmigrantes dudan en completar formularios gubernamentales por temor a que el ICE pueda acceder a esa información y los persiga. Él les asegura a los miembros de la comunidad que los formularios estatales son confidenciales y solo pueden ser consultados por hospitales y tribunales.

El gobierno de Trump ha tomado para acceder a información sensible a través de los Centros de Servicios de Medicare y Medicaid, el Servicio de Impuestos Internos (IRS), el Programa de Asistencia Nutricional Suplementaria (SNAP), el Departamento de Vivienda y Desarrollo Urbano y otras entidades.

González-Pérez y Guzmán consideran que muchos padres inmigrantes no conocen sus derechos. Designar un tutor temporal y crear un plan familiar es una forma de no sentirse impotentes, afirmó González-Pérez.

“La gente no quiere hablar de esa cuestión”, reflexionó Guzman. “Que un padre tenga que hablar con un niño sobre la posibilidad de separarse da miedo. No es algo que nadie quiera hacer”, concluyó.

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“La primera vez, el teléfono suena sin parar. La siguiente, te manda al buzón de voz y se corta la llamada”, dijo la mujer de 48 años, que vive en Delaware. “A veces te contesta alguien que dice que no es la persona indicada. Te transfieren y se corta. A veces contestan y no hay nadie en la línea”.

Pasó meses tratando de averiguar si su cobertura de Medicaid había sido renovada. Hasta finales de marzo, todavía no le había llegado la renovación anual para el programa estatal y federal que ofrece seguro de salud a personas con bajos ingresos y con discapacidades.

Crouch, quien sufrió un aneurisma cerebral debilitante hace una década, también tiene Medicare, que cubre a personas de 65 años o más, o a aquellas con discapacidades. Medicaid pagaba sus deducibles mensuales de Medicare de $200, pero en los últimos tres meses ha tenido que cubrirlos ella misma, lo que ha afectado el ingreso fijo de su familia, contó.

Los problemas de Crouch con el centro de llamadas de Medicaid en Delaware no son un caso aislado. Las agencias estatales de Medicaid pueden tener dificultades para mantener suficiente personal que ayude a las personas a inscribirse en los beneficios y atender llamadas de afiliados con preguntas.

La falta de estos trabajadores puede impedir que las personas usen plenamente sus beneficios, dijeron investigadores de políticas de salud.

Ahora, la ley One Big Beautiful Bill Act de los republicanos aprobada por el Congreso, que el presidente Donald Trump firmó el verano pasado, pronto exigirá más al personal de las agencias estatales en los lugares donde los legisladores ampliaron Medicaid a más adultos con bajos ingresos, que son casi todos los estados y el Distrito de Columbia.

Según la ley, que se espera reduzca el gasto de Medicaid en casi $1.000 millones en los próximos ocho años, estos trabajadores deberán no solo determinar si millones de afiliados cumplen con los nuevos requisitos laborales del programa, sino también verificar con mayor frecuencia que califican: cada seis meses en lugar de una vez al año.

麻豆女优 Health News contactó a agencias que deberán implementar estas reglas de trabajo, y muchas dijeron que necesitarán más personal.

Estas exigencias pondrán más presión sobre una fuerza laboral ya sobrecargada, lo que podría dificultar que afiliados como Crouch reciban servicios básicos de atención al cliente. Y muchos podrían perder acceso a beneficios a los que tienen derecho por ley, según afirmaron defensores del consumidor e investigadores de políticas de salud, algunos con experiencia directa trabajando en agencias estatales.

Los estados ya están “teniendo grandes dificultades”, dijo Jennifer Wagner, directora de elegibilidad e inscripción de Medicaid en el Center on Budget and Policy Priorities y ex subdirectora del Departamento de Servicios Humanos de Illinois. “Habrá desafíos adicionales importantes por culpa de estos cambios”.

Largos tiempos de espera para recibir ayuda

Los republicanos sostienen que los cambios en Medicaid, que entrarán en vigencia el 1 de enero de 2027 en la mayoría de los estados, incentivarán a los afiliados a conseguir empleo. Investigaciones sobre otros programas con requisitos laborales en Medicaid han encontrado poca evidencia de que aumenten el empleo.

La Oficina de Presupuesto del Congreso (CBO, por sus siglas en inglés) provocarán que más personas pierdan la cobertura de salud para 2034: indicó que más de 5 millones de personas podrían verse afectadas.

Muchos estados no tienen suficiente personal para procesar solicitudes o renovaciones de Medicaid con rapidez, dijeron defensores.

Los Centros de Servicios de Medicare y Medicaid (CMS, por siglas en inglés) supervisan si los estados pueden procesar el tipo más común de solicitud de beneficios dentro de un plazo de 45 días.

En diciembre, alrededor del 30% de todas las solicitudes de Medicaid y del Programa de Seguro de Salud Infantil (CHIP, por sus siglas en inglés) en Washington, D.C., y Georgia en procesarse. Más de una cuarta parte tardó ese tiempo en Wyoming. En Maine, una de cada 5 solicitudes no cumplió ese plazo.

Los CMS comenzaron a compartir públicamente datos de los centros de llamadas de Medicaid en 2023, lo que mostró un sistema bajo presión, según investigadores y defensores.

En Hawaii, las personas esperaron más de tres horas al teléfono en diciembre. En Oklahoma, casi una hora, y en Nevada, más de una hora.

En 2023, las agencias estatales de Medicaid comenzaron a verificar que todavía calificaban a los afiliados que habían sido protegidos para que no perdieran su cobertura durante la pandemia de covid. Ese proceso no funcionó bien en muchos estados, y más de .

Investigadores y defensores dicen que implementar las nuevas reglas será un reto mayor. Las reglas laborales requerirán cambios amplios en los sistemas informáticos y capacitación para los trabajadores que verifican la elegibilidad en un plazo ajustado.

“Es un nivel mucho mayor de complejidad administrativa”, señaló Sophia Tripoli, directora de políticas en Families USA, una organización de defensa de salud del consumidor.

Después de meses intentando hablar con alguien, Crouch dijo que finalmente obtuvo respuestas sobre sus beneficios de Medicaid luego de escribir a la oficina de la representante federal Sarah McBride (demócrata de Delaware). La oficina contactó a la agencia estatal de Medicaid, que finalmente la llamó con una actualización, dijo.

Crouch en realidad no calificaba para Medicaid. Dijo que eso nunca había surgido en dos años de interacciones con el estado.

“No tiene ningún sentido que el estado no se haya dado cuenta antes”, dijo.

La agencia de Medicaid de Delaware no respondió a solicitudes de comentarios sobre su caso.

Estados con poco personal para Medicaid

A fines de marzo, algunos estados dijeron a 麻豆女优 Health News, que necesitarán más personal para implementar las reglas laborales de manera efectiva.

Idaho informó que tiene 40 vacantes para trabajadores de elegibilidad. Nueva York estimó que necesitará 80 nuevos empleados para manejar el trabajo administrativo adicional, con un costo de $6,2 millones. Pennsylvania tiene casi 400 puestos vacantes en oficinas de servicios humanos de los condados. La agencia de Medicaid de Indiana tiene 94 vacantes. Maine quiere contratar 90 trabajadores adicionales, y Massachusetts busca sumar 70 más. Montana llenó 39 de los 59 puestos que dice que necesitará.

La agencia de servicios sociales de Missouri ha reducido personal y tiene 1.000 trabajadores de primera línea menos que hace aproximadamente una década, esto con más del doble de afiliados en Medicaid y en el Programa de Asistencia Nutricional Suplementaria (SNAP, por sus siglas en inglés), según comentarios de su directora, Jessica Bax,

“El departamento pensó que habría una mejora en la eficiencia gracias a las actualizaciones del sistema de elegibilidad”, dijo Bax. “Muchas de esas mejoras no se concretaron”.

Los estados podrían tener dificultades para encontrar personas interesadas en estos trabajos, que requieren meses de capacitación, pueden ser emocionalmente exigentes y generalmente ofrecen salarios bajos, afirmó Tricia Brooks, investigadora del Centro para Niños y Familias de la Universidad de Georgetown.

“Reciben muchos reclamos y gritos”, dijo Brooks, quien antes dirigió el programa de atención al cliente de Medicaid y CHIP en New Hampshire. “Las personas están frustradas. Lloran. Están preocupadas. Están perdiendo acceso a la atención médica, y no es un trabajo fácil cuando es difícil ayudar”.

Los estados están pagando millones de dólares a contratistas del gobierno para ayudar a cumplir con la nueva ley federal.

Maximus, un contratista de servicios gubernamentales, brinda apoyo en elegibilidad, como la gestión de centros de llamadas, en 17 estados que ampliaron Medicaid y atiende a casi 3 de cada 5 personas inscritas en el programa a nivel nacional, según la empresa.

Durante una llamada de resultados en febrero, la empresa dijo que puede cobrar según el número de gestiones que realiza para los afiliados, independientemente de cuántas personas estén inscritas en el programa en un estado.

Maximus no tiene “un enfoque único” para los servicios que ofrece ni para cómo cobra por ellos, dijo su vocera Marci Goldstein a 麻豆女优 Health News.

La empresa, que reportó ingresos de $1.760 millones en 2025 en el área que incluye trabajo relacionado con Medicaid, espera que esos ingresos sigan creciendo, incluso si menos personas permanecen en el programa, “debido a las gestiones adicionales que serán necesarias”, señaló David Mutryn, director financiero y tesorero de Maximus.

Perder la cobertura de Medicaid no es solo una molestia, ya que muchas personas inscritas probablemente no ganan lo suficiente para pagar atención médica por su cuenta y pueden no calificar para ayuda financiera bajo la Ley de Cuidado de Salud a Bajo Precio (ACA), dijo Elizabeth Edwards, abogada del National Health Law Program.

Las personas podrían no poder pagar medicamentos o recibir atención esencial, lo que podría tener impactos “devastadores” en la salud, dijo.

“Lo que está en juego son las vidas de las personas”, concluyó.

Los corresponsales de 麻豆女优 Health News Katheryn Houghton y Samantha Liss contribuyeron con este artículo.

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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The federal government doesn’t track how many children have entered foster care because of immigration enforcement actions, leaving it unclear how often it happens. In Oregon, as of February two children had been placed in foster care after being separated from their parents in immigration detention cases, according to Jake Sunderland, a spokesperson for the Oregon Department of Human Services.

“Before fall 2025, this simply had never happened before,” Sunderland said.

As of mid-February, nearly by Immigration and Customs Enforcement. The record 73,000 people in detention in January represented an compared with one year before. According to , parents of 11,000 children who are U.S. citizens were detained from the beginning of Trump’s term through August.

The news outlet NOTUS that at least 32 children of detained or deported parents had been placed in foster care in seven states.

Sandy Santana, executive director of Children’s Rights, a legal advocacy organization, said he thinks the actual number is much higher.

“That, to us, seems really, really low,” he said.

Separation from a parent is deeply traumatic for children and can lead to , including post-traumatic stress disorder. Prolonged, intense stress can lead to more-frequent infections in children and developmental issues. That “toxic stress” is also associated with responsible for learning and memory, according to 麻豆女优.

, and amended existing laws during Trump’s first term to allow guardians to be granted temporary parental rights for immigration enforcement reasons. Now the enforcement surge that began after Trump returned to office last year has prompted a new wave of state responses.

In New Jersey, lawmakers are considering to amend a state law that allows parents to nominate standby, or temporary, guardians in the cases of death, incapacity, or debilitation. The bill would add separation due to federal immigration enforcement as another allowable reason.

Nevada and California passed laws last year to protect families separated by immigration enforcement actions. California’s law, called the , allows parents to nominate guardians and share custodial rights, instead of having them suspended, while they’re detained. They regain their full parental rights if they are released and are able to reunite with their children.

There are significant legal barriers to reunification once a child is placed in state custody, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles.

If a parent’s child is placed in foster care and the parent cannot participate in required court proceedings because they are in detention or have been deported, it’s less likely they will be able to reunite with their child, Guzman said.

are U.S. citizens who live with a parent or family member who does not have legal immigration status, according to research from the Brookings Institution, a Washington, D.C.-based think tank. Within that group, 2.6 million children have two parents lacking legal status.

Santana said he expects the number of family separation cases to grow as the Trump administration continues its immigration enforcement campaign, putting more children at risk of being placed in foster care.

the agency to make efforts to facilitate detained parents’ participation in family court, child welfare, or guardianship proceedings, but Santana said it’s uncertain whether ICE is complying with those rules.

ICE officials did not respond to requests for comment for this report.

Before the change in California’s law, the only way a parent could share custodial rights with another guardian was if the parent was terminally ill, Guzman said.

If parents create a preparedness plan and identify an individual to assume guardianship of their children, the state child welfare agency can begin the process of placing the children with that individual without opening a formal foster care case, he added.

While Nevada lawmakers expanded an existing guardianship law last year to include immigration enforcement, the measure requires the parents to take the additional step of filing notarized paperwork with the secretary of state’s office, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities.

Gonzalez-Perez said some immigrants are still hesitant to fill out government forms, out of fear that ICE might access their information and target them. He reassures community members that the state forms are secure and can be accessed only by hospitals and courts.

The Trump administration has taken through the Centers for Medicare & Medicaid Services, the IRS, the Supplemental Nutrition Assistance Program, the Department of Housing and Urban Development, and other entities.

Gonzalez-Perez and Guzman said that not enough immigrant parents know their rights. Nominating a temporary guardian and creating a plan for their families is one way they can prevent feelings of helplessness, Gonzalez-Perez said.

“Folks don’t want to talk about it, right?” Guzman said. “The parent having to speak to a child about the possibility of separation, it’s scary. It’s not something anybody wants to do.”

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“The first time, it’ll ring interminably. Next time, it’ll go to a voicemail that just hangs up on you,” said the 48-year-old, who lives in Delaware. “Sometimes you’ll get a person who says they’re not the right one. They transfer you, and it hangs up. Sometimes, it picks up and there’s just nobody on the line.”

She spent months trying to figure out whether her Medicaid coverage had been renewed. As of late March, she hadn’t been reapproved for the year for the state-federal program, which provides health insurance for people with low incomes and disabilities.

Crouch, who suffered a debilitating brain aneurysm a decade ago, also has Medicare, which covers people who are 65 or older or have disabilities. Medicaid had been paying her monthly Medicare deductibles of $200, but she’d been on the hook for them for the past three months, straining her family’s fixed income, she said.

Crouch’s challenges with Delaware’s Medicaid call center aren’t unique. State Medicaid agencies can struggle to keep enough staff to help people sign up for benefits and field calls from enrollees with questions. A shortage of such workers can keep people from fully using their benefits, health policy researchers said.

Now, congressional Republicans’ One Big Beautiful Bill Act, which President Donald Trump signed into law last summer, will soon demand more from staff at state agencies in places where lawmakers expanded Medicaid to more low-income adults 鈥� nearly all states and the District of Columbia.

Under the law, which is expected to reduce Medicaid spending by almost $1 trillion over the next eight years, these staffers will have to not only determine whether millions of enrollees meet the program’s new work requirements but also verify more frequently that they qualify for the program 鈥� every six months instead of yearly.

麻豆女优 Health News reached out to agencies that will need to stand up the work rules, and many said they’ll need additional staff.

The mandates will put extra strain on an already-stressed workforce, potentially making it harder for enrollees like Crouch to get basic customer service. And many could lose access to benefits they’re legally entitled to, said consumer advocates and health policy researchers, some of them with direct experience working at state agencies.

States are already “struggling significantly,” said Jennifer Wagner, the director of Medicaid eligibility and enrollment at the Center on Budget and Policy Priorities and a former associate director of the Illinois Department of Human Services. “There will be significant additional challenges caused by these changes.”

Long Wait Times for Help

Republicans argue the Medicaid changes, which will take effect Jan. 1, 2027, in most states, will encourage enrollees to find jobs. Research on other Medicaid work requirement programs has found little evidence they increase employment.

The Congressional Budget Office would cause more people to lose health coverage by 2034 than any other part of the GOP budget law. It said last year more than 5 million people could be affected.

Many states don’t have the staff to process Medicaid applications or renewals quickly, said consumer advocates and researchers.

The Centers for Medicare & Medicaid Services tracks whether states can handle the most common type of benefit application within a 45-day window.

In December, about 30% of all Medicaid and Children’s Health Insurance Program, or CHIP, applications in Washington, D.C., and Georgia to process. More than a quarter took that long in Wyoming. In Maine, 1 in 5 applications missed that deadline.

CMS began publicly sharing state Medicaid call center data in 2023, revealing a taxed system, researchers and consumer advocates said.

In Hawaii, people waited on the phone for more than three hours in December. They waited for nearly an hour in Oklahoma, and more than an hour in Nevada.

In 2023, state Medicaid agencies began making sure enrollees who were protected from being dropped from the program during the covid pandemic still qualified for coverage. That Medicaid unwinding process didn’t go well in many states, and lost their benefits.

Health policy researchers and consumer advocates say rolling out the new Medicaid rules will be a bigger challenge. The Medicaid work rules will require extensive IT system changes and training for workers verifying eligibility on a tight timeline.

“It is a much larger scale of administrative complexity,” said Sophia Tripoli, senior director of policy at Families USA, a health care consumer advocacy organization.

After months of trying to get someone on the phone, Crouch said, she finally got answers to questions about her Medicaid benefits after writing to the office of U.S. Rep. Sarah McBride (D-Del.). McBride’s office contacted the state’s Medicaid agency, which eventually called with an update, Crouch said.

Crouch didn’t qualify for Medicaid after all. She said that had never come up in two years of interactions with the state.

“It makes absolutely no sense” that the state never realized she shouldn’t have been on the program, Crouch said.

Delaware’s Medicaid agency didn’t respond to requests for comment on Crouch’s situation.

States Short-Staffed for Medicaid

Some states told 麻豆女优 Health News in late March that they’ll need more staff to roll out the work rules effectively.

Idaho said it has 40 eligibility worker vacancies. New York estimated it will need 80 new employees to handle the additional administrative work, at a cost of $6.2 million. Pennsylvania said it has nearly 400 open positions in county human services offices in the state. Indiana’s Medicaid agency has 94 open positions. Maine wants to hire 90 additional staffers, and Massachusetts wants to hire 70 more.

As of early March, Montana had filled 39 of 59 positions state officials projected it would need. The state still plans to roll out the rules early, starting July 1, despite its long struggle with system backlogs that applicants said have delayed benefits.

Missouri’s social services agency has been cutting staff and has 1,000 fewer front-line workers than it did roughly a decade ago 鈥� with more than double the number of enrollees in Medicaid and the Supplemental Nutrition Assistance Program, or SNAP, according to comments Jessica Bax, the agency director, made in November.

“The department thought that there would be a gain in efficiency due to eligibility system upgrades,” Bax said. “Many of those did not come to fruition.”

States could have a hard time finding people interested in taking those jobs, which require months-long training, can be emotionally challenging, and generally offer low pay, said Tricia Brooks, a researcher at the Georgetown University Center for Children and Families.

“They get yelled at a lot,” said Brooks, who formerly ran New Hampshire’s Medicaid and CHIP customer service program. “People are frustrated. They’re crying. They’re concerned. They’re losing access to health care, and so sometimes it’s not an easy job to take if it’s hard to help someone.”

States are paying government contractors millions of dollars to help them comply with the new federal law.

Maximus, a government services contractor, provides eligibility support, such as running call centers, in 17 states that expanded Medicaid and interacts with nearly 3 in 5 people enrolled in the program nationally, according to the company.

During a February earnings call, company leadership said Maximus can charge based on the number of transactions it completes for enrollees, independent of how many people are enrolled in a state’s Medicaid program.

Maximus has “no one-size-fits-all approach” to the services it offers or the way it charges for those services, spokesperson Marci Goldstein told 麻豆女优 Health News.

The company, which reported bringing in $1.76 billion in 2025 from the part of its business that includes Medicaid work, expects that revenue to continue to grow, even as people fall off the Medicaid rolls, “because of the additional transactions that will need to take place,” David Mutryn, Maximus’ chief financial officer and treasurer, said during the earnings call.

Losing Medicaid health coverage isn’t just an inconvenience, since many people enrolled in the program probably don’t make enough money to pay for health care on their own and may not qualify for financial help for Affordable Care Act coverage, said Elizabeth Edwards, a senior attorney with the National Health Law Program.

People could be unable to afford medications or get essential care, which could lead to “devastating” health impacts, she said.

“The human stakes of this are people’s lives,” she said.

麻豆女优 Health News correspondents Katheryn Houghton and Samantha Liss contributed to this report.

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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Six months after a West Virginia man died following a protracted battle with his health insurer over doctor-recommended cancer care, the state’s Republican governor signed a bill intended to curb the harm of insurance denials.

West Virginia’s Public Employees Insurance Agency enrolls nearly 215,000 people 鈥� state workers, as well as their spouses and dependents. The new law, which will take effect June 10, will allow plan members who have been approved for a course of treatment to pursue an alternative, medically appropriate treatment of equal or lesser value without the need for another approval from the state-based health plan.

“This legislation is rooted in a simple principle: if a treatment has already been approved, patients should be able to pursue a medically appropriate alternative without being forced to start the process over again 鈥� especially when it does not cost more,” Gov. Patrick Morrisey said in a statement after signing the bill into law on March 31.

“This is about common sense, compassion, and trusting patients and their doctors to make the best decisions for their care,” he said.

Delegate Laura Kimble, the Republican from Harrison County who introduced the legislation, told 麻豆女优 Health News the measure offers “a rational solution” for patients facing “the most irrational and chaotic time of their lives.”

From Arizona to Rhode Island, at least half of all state legislatures have taken up bills this year related to prior authorization, a process that requires patients or their medical team to seek approval from an insurer before proceeding with care. These state efforts come as patients across the country await relief from prior authorization hurdles, as promised by dozens of major health insurers in a pledge announced by the Trump administration last year.

The West Virginia law was inspired by Eric Tennant, a coal-mining safety instructor from Bridgeport who died on Sept. 17 at age 58. In early 2025, the Public Employees Insurance Agency of a $50,000 noninvasive cancer treatment, called histotripsy, that would have used ultrasound waves to target, and potentially shrink, the largest tumor in his liver. His family didn’t expect the procedure to eradicate the cancer, but they hoped it would buy him more time and improve his quality of life. The insurer said the procedure wasn’t medically necessary and that it was considered “experimental and investigational.”

Becky Tennant, Eric’s widow, told members of a West Virginia House committee in late February that she submitted medical records, expert opinions, and data as part of several attempts to appeal the denial. She also reached out to “almost every one of our state representatives,” asking for help.

Nothing worked, she told lawmakers, until 麻豆女优 Health News and NBC News got involved and posed questions to the Public Employees Insurance Agency about Eric’s case. Only then did the insurer reverse its decision and approve histotripsy, Tennant said.

“But by then, the delay had already done its damage,” she said.

Within one week of the reversal in late May, Eric Tennant was hospitalized. His health continued to decline, and by midsummer he was no longer considered a suitable candidate for the procedure. “The insurance company’s decision did not simply delay care. It closed doors,” his wife said.

Had the new law been in effect, Kimble said, Tennant could have undergone histotripsy without preapproval, because it was a less expensive alternative to chemotherapy, which his insurer had already authorized. The bill was passed unanimously by the state legislature in March.

U.S. health insurers argue that most prior authorization requests are quickly, if not instantly, approved. AHIP, the health insurance industry trade group, says prior authorization acts as an important guardrail in preventing potential harm to patients and reducing unnecessary health care costs. But denials and delays tend to affect patients who need expensive, time-sensitive care, .

The practice has come under intense scrutiny in recent years, particularly after the in New York City in late 2024. Americans rank prior authorization as their biggest burden when it comes to getting health care, according to a by 麻豆女优, a health information nonprofit that includes 麻豆女优 Health News.

Samantha Knapp, a spokesperson for the West Virginia Department of Administration, would not answer questions about the law’s financial impact on the state. “We prefer to avoid any speculation at this time regarding potential impact or actions,” Knapp said.

In a fiscal note attached to the bill, Jason Haught, the Public Employees Insurance Agency’s chief financial officer, said the law would cost the agency an estimated $13 million annually and “cause member disruption.”

West Virginia isn’t an outlier in targeting prior authorization. By late 2025, 48 other states, in addition to the District of Columbia and Puerto Rico, already had some form of a prior authorization law 鈥� or laws 鈥� on the books, according to a by the National Association of Insurance Commissioners.

Many states have set up “gold carding” programs, which allow physicians with a track record of approvals to bypass prior authorization requirements. Some states establish a maximum number of days insurance companies are allowed to respond to requests, while others prohibit insurance companies from issuing retrospective denials after a service has already been preauthorized. There are also a crop of new state laws seeking to regulate the use of artificial intelligence in prior authorization decision-making.

Meanwhile, prior authorization bills introduced this year across the country, including in Kentucky, Missouri, and New Jersey, have been supported by politicians from both parties.

“Republicans in conservative states see health care as a vulnerability for the midterm elections, and so, unsurprisingly, you’ll see some action on this,” said Robert Hartwig, a clinical associate professor of risk management, insurance, and finance at the University of South Carolina. “They realize that they’re not really going to get much action at the federal level given the degree of gridlock we’ve already seen.”

Last summer, the Trump administration announced a pledge signed by dozens of health insurers vowing to reform prior authorization. The insurers promised to reduce the scope of claims that require preapproval, decrease wait times, and communicate with patients in clear language when denying a request.

Consumers, patient advocates, and medical providers that companies will follow through on their promises.

Becky Tennant is skeptical, too. That’s why she advocated for the West Virginia bill.

“Families should not have to beg, appeal, or go public just to access time-sensitive care,” she told lawmakers. Tennant, who sees the bill’s passage as bittersweet, said she thought her husband would have been proud.

During Eric’s final hospital stay, Tennant recalled, right before he was discharged to home hospice care, she asked him whether he wanted her to keep fighting to change the state agency’s prior authorization process.

“鈥榃ell, you need to at least try to change it,’” she recalled her husband saying. “鈥楤ecause it’s not fair.’”

“I told him I would keep trying,” she said, “at least for a while. And so I am keeping that promise to him.”

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

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The , the public health insurance program that pairs state and federal money. Federal officials have announced unprecedented actions in Minnesota this year, declaring they could withhold over $2 billion in payments slated for the state and claw back nearly $260 million from last year.

The actions in Minnesota came as part of the administration’s declared crackdown on fraud, but critics have likened them to using a bludgeon instead of a scalpel, probably harming patients who rely on Medicaid for care but are not responsible for fraud in the program.

“It’s going to hurt a lot of people if they end up going through with this,” said Sumukha Terakanambi, a 27-year-old who has Duchenne muscular dystrophy and works as a public policy consultant with the Minnesota Council on Disability.

“Of course we support going after fraud,” Terakanambi said, but “this overly aggressive action is missing the point. It’s not punishing fraudsters. It’s punishing the people.”

Longtime Medicaid observers also doubt the federal actions will achieve their purported objective. , a senior managing director with the consulting firm Manatt, that actions of this magnitude by the federal government are unprecedented, partly because punitive measures against states have “really never been an effective way to address fraud.”

Meanwhile, fraud prosecutions as the U.S. attorney’s office there grapples with the exodus of nearly half its attorneys and a surge in cases from the Trump administration’s immigration crackdown.

Despite these concerns, Centers for Medicare & Medicaid Services head Mehmet Oz said the techniques the federal government is using in Minnesota could be applied to other states, and he has launched social media campaigns alleging high-dollar public benefit fraud聽in , , , and . And a February release of by the Trump administration’s Department of Government Efficiency appears to be part of a campaign to paint the program as riddled by fraud, Guyer said.

, a research professor at Georgetown University’s Center for Children and Families, said that campaign by the administration seems particularly focused on services designed to keep people with disabilities out of institutions, and he described withholding $2 billion from Minnesota’s Medicaid program as “.”

A 鈥楶olitical Football’

Scrutiny of Minnesota’s public benefit programs began early in the Biden administration, years before the most recent investigations. The spotlight on the state’s Medicaid system grew after FBI raids in December 2024.

The following May, an into Medicaid housing stabilization services in Minnesota prompted further scrutiny from federal prosecutors, and from Gov. Tim Walz.

Under the Democratic governor, the state launched investigations into 85 autism providers, ordered a third-party audit of 14 types of Medicaid services deemed to be “high-risk” for fraud, and delayed payments for those services for up to 90 days. Many of the services are ones people with disabilities receive at home, making them more difficult to monitor. 聽

Terakanambi worried the state’s “heavy-handed approach” would destabilize the entire home care system. While his own care was not disrupted 鈥� his parents provide the 10 hours of daily personal care he qualifies for through Medicaid 鈥� other Minnesotans with disabilities have said they experienced interruptions and .

In December, one man was after losing his in-home care services amid the crackdown.

“We’re losing sight of the people that have done nothing wrong, that rely on these supports and services to live in the community,” said Sue Schettle, chief executive of , a Minnesota nonprofit that represents organizations supporting people with disabilities. “It becomes a political football.”

Schettle said she took her concerns about the crackdown to state officials, who have since met routinely with her and other advocates. The subsequent federal actions, however, have left her “shell-shocked,” she said.

The 鈥楴uclear Option’

In December, a , with help from state Republicans, supercharged the issue in Minnesota, alleging widespread fraud in child care centers owned by members of the Somali community. A follow-up state investigation of the child care centers that were featured in the video determined that all were “.”

On Jan. 6, CMS’ Oz sent Walz a letter alleging Minnesota’s Medicaid program was out of compliance with federal rules on fraud, waste, and abuse, setting the stage for the Trump administration’s move to withhold over $2 billion in federal Medicaid funds to Minnesota this year, about 18% of what the state received the year before.

Minnesota is appealing.

The Republican-aligned Paragon Health Institute, a think tank that recently published a calling for similar enforcement actions across the country, applauded the federal moves.

“That will spur states to take necessary action, thus ensuring that Medicaid funds go to those who are truly eligible,” said , a legal research analyst who co-authored the brief.

Georgetown’s Schneider questioned the necessity and effectiveness of withholding the money.

“I don’t see any relationship between that and actually reducing fraud against the Minnesota Medicaid program, given the state has already taken a lot of action,” he said.

In late February, Oz went further, announcing that on top of withholding $2 billion in future payments to Minnesota, the administration was in federal Medicaid payments to the state.

“We have notified the state that we will give them the money, but we are going to hold it and only release it after they propose and act on a comprehensive corrective action plan to solve the problem,” Oz said at with Vice President JD Vance.

Minnesota the deferment in court.

“We’re waiting for feedback from CMS on our corrective action plan, which is why we were surprised and confused when Dr. Oz said in a news conference with the vice president last week that we needed to provide one,” Minnesota Medicaid director John Connolly said at a March 3 news briefing.

鈥楢nother Minnesota’

Oz and Vance both said during the February news conference that they are not specifically targeting Democratic-led states. Oz noted Florida has a “big fraud problem” and in mid-March sent a letter to state officials with a list of questions about their Medicaid program. Until then, the letters and most of Oz’s social media videos had been limited to California, Maine, and New York, all led by Democrats.

“We might have another Minnesota on our hands,” Oz said in posted the same day as sent to Maine Gov. Janet Mills, a Democrat, requesting information on how the state was addressing Medicaid fraud.

“And if we’re not satisfied with their progress, we reserve the right to cut off payments entirely,” Oz said in the video.

The video and letter were prompted by a in Maine that found the state had made at least $45.6 million in improper Medicaid payments. Similar audits in , , and had comparable findings.

In , Mills called Oz’s letter a “pretense to send ICE and other weaponized federal agents into states led by Democrats.”

CMS spokesperson Chris Krepich said the agency does not take funding actions lightly. “The focus is on strengthening oversight, improving accountability, and ensuring that vulnerable patients receive the services they are entitled to,” Krepich said.

But Terakanambi said it’s not difficult to see how federal actions like those in Minnesota could put services in jeopardy. The amount of money Minnesota could lose from the CMS actions announced this year is already equivalent to about two-thirds of the state’s rainy-day fund.

Many states are looking to reduce or even eliminate funding for home care services over much smaller budget shortfalls. And further cuts are anticipated, with congressional Republicans’ One Big Beautiful Bill Act, signed into law last year, expected to reduce federal Medicaid spending by more than $900 billion over the next decade.

“People will die,” Terakanambi said. “People will lose critical supports and will no longer be able to participate in their community the way they want to.”

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Oz, who heads the U.S. Centers for Medicare & Medicaid Services, there was approximately $3.5 billion of fraud in the hospice and home health care industry in Los Angeles County alone. “This administration under President [Donald] Trump is not going to tolerate taxpayer dollars being stolen because people aren’t paying attention anymore. We’re focused on this,” . He claimed the fraud was largely orchestrated by the “Russian, Armenian mafia” and said that most of the money spent on home and community-based services across California “might be fraudulent.”

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“I call it the unaffordable care act,” he said. He reprised the line in his address, blaming “the crushing cost of health care” on Obamacare.

Trump’s words also play off an ongoing congressional debate that began late last year with the expiration of the enhanced tax subsidies that had lowered the cost of ACA insurance for millions of Americans 鈥� and thrust the issue of ACA-related costs back to center stage.

Without those enhanced subsidies, the amount people pay toward monthly Obamacare premiums doubled, on average. The number of people enrolled in ACA coverage for this year has dropped by more than a million, and experts say more people could abandon coverage once premiums come due. Democrats are using this development to crank up the heat on Republicans ahead of the November elections and steer the conversation on the affordability issue.

Republicans fault the law itself for driving up these costs. For instance, Rep. Mike Lawler (R-N.Y.) that premiums “skyrocketed across the country since it took effect.”

Critics routinely point to several provisions within the ACA as the culprits 鈥� among them, essential health benefits, or EHBs. Under the law, Obamacare plans must cover certain essential services, including emergency care, hospitalization, maternity, and prescription drugs, without annual or lifetime dollar limits. But connecting EHBs to the premium increases felt by consumers is not straightforward.

Here’s a primer on key issues involved.

Checking the Numbers

It’s clear that Obamacare premiums have increased.

An analysis by the right-leaning Paragon Health Institute shows that the average premium for a 50-year-old with Obamacare since 2014. The average premium for employer-based plans grew 68% during that same time.

Paragon’s president, , told 麻豆女优 Health News that this shows the ACA has made health care on the individual market more expensive.

Still, the comparison overlooks a couple of points. Pre-ACA, employer plans generally offered more generous coverage than individual market plans, so work-based coverage cost more. And individual plans were cheaper in part because they could bar applicants with health problems. Beginning in 2014, the ACA forced individual policies to look more like employer plans, covering a broader range of benefits and accepting both healthy and unhealthy applicants. As a result, premiums rose that first year. In the years that followed, ACA plans often experienced faster growth in premiums than job-based plans. Some policy analysts say this isn’t surprising because ACA plans started at a lower dollar base and had more room to rise.

States that saw less dramatic post-ACA premium increases, such as Massachusetts and New York, already mandated that individual-market plans provide EHB-like coverage, noted , a senior research fellow at the Heritage Foundation, a conservative think tank. These states also had higher premiums due to that and other provisions, such as not allowing plans to exclude people with preexisting conditions.

“It was a combination of things,” he said.

Blase acknowledges that the two types of insurance started at different price points. But he said the percentage change over time shows that the ACA faces “underlying inflationary pressures” 鈥� including the now-expired, more generous, covid pandemic-era subsidies 鈥� that affect its policyholders more so than employer plans.

Aside from that point, however, were on the rise even before the ACA took effect.

An analysis by Jonathan Gruber at the Massachusetts Institute of Technology found that between 2008 and 2010, premiums grew by at least 10% a year and were highly variable across states and insurers.

Consumers’ Other Costs

Over time, ACA deductibles 鈥� the amounts policyholders must satisfy in a given year before insurance kicks in 鈥� have seen large increases, with “bronze” plans now averaging $7,476 annually, up from $5,113 in 2014, according to 麻豆女优, a health information nonprofit that includes 麻豆女优 Health News. Bronze plans tend to have lower premiums than the other metal-level categories 鈥� “silver,” “gold,” and “platinum” 鈥� in part because of their higher deductibles.

The Trump administration is doubling down on high-deductible plans as part of its emphasis on affordability, making it easier this year for people age 30 and up to qualify for what are called “catastrophic plans.” These come with even larger deductibles than bronze plans.

The administration pitched a broad regulatory plan for 2027 to cement those changes, saying it was designed to lower premiums and expand choices. It would raise next year’s deductibles for catastrophic plans to $15,600 a year for an individual or around $30,000 for a family. It isn’t clear how popular such plans would be. Detailed enrollment figures for this year are not yet available, but estimates indicate only about 54,000 people chose catastrophic plans in 2025, and consumers can’t use federal subsidies to purchase them.

Before this Trump proposal, though, recent data showed that the rising rate of ACA plan deductibles had not outpaced deductibles for employer plans.

The weighted average 鈥� a calculation that gives more weight to ACA plans with the most people enrolled 鈥� shows in annual deductible amounts since 2014, from $1,881 to $2,912. During that same period, deductibles in plans offered by 59%, from $1,186 to $1,886, according to 麻豆女优’s annual employer survey.

Essential What?

To be clear, the ACA’s catastrophic and bronze plans must cover essential health benefits, as do all Obamacare plans. These EHBs fall into 10 categories of medical services and were included in the ACA to ensure individual policies meet a minimum standard of coverage and are comparable to employer-based health insurance.

Preventive services, such as annual checkups, vaccines, and certain cancer screenings, must be covered at no additional cost to patients. All plans must completely cover the cost of specific vaccines, including the annual flu shot. And insurers cannot refuse to pay for emergency care provided at an out-of-network hospital. Other EHBs are subject to out-of-pocket costs, such as copays at the doctor’s office or pharmacy counter.

In some ways, EHBs save money because they’ve increased access to preventive care, said , a professor of health policy and management at Johns Hopkins University’s Bloomberg School of Public Health.

Services such as cancer screenings and lab tests can lead to earlier detection of serious conditions, when treatment is less costly, and positive outcomes are more likely.

“If you look down the list of essential health benefits, I think most people would reach the judgment that those are health care services that people should have access to,” said Larry Levitt, 麻豆女优’s executive vice president for health policy.

Joseph Antos, a senior fellow emeritus at the conservative American Enterprise Institute, said ACA requirements 鈥� such as requiring insurers to accept anyone, regardless of their health status, and limiting insurers’ ability to charge older people more for coverage 鈥� also have played roles in boosting premiums.

“Really, it’s practically impossible to tease any one thing out,” Antos said.

States do have latitude to add benefits that fall under the EHB umbrella. For example, bariatric surgery is covered as an EHB in , but not in . Pennsylvania’s EHBs also don’t include hearing aids, but do.

But the Trump administration’s 2027 regulatory proposal : When “states enact benefit mandates, plan premiums must generally increase to account for the additional coverage,” it reads. It also signals that added benefits can raise consumer costs and proposes that states be required to use their own funds to offset some of those costs.

Paragon’s Blase echoed this take in his bottom line. Mandating that plans cover EHBs without annual or lifetime caps, as required under the ACA law, encourages clinicians to overbill and overprescribe, he said. That drives up premiums and means a bigger check for insurers and medical providers at the expense of taxpayers. “You just turn patients into money factories,” he said.

, a senior research fellow at Georgetown University’s Center on Health Insurance Reforms, disagrees, saying that whatever EHBs’ role, they aren’t to blame for the year-over-year premium hikes.

People aren’t consuming medical care at exponential rates just because certain services are now covered: “Me not paying anything for that colonoscopy doesn’t make me want to get more of them,” she 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 鈥攓ue van desde diarrea hasta la muerte鈥� 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: 鈥楽i 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 麻豆女优 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 鈥攁 veces durante una década o más鈥� 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) 鈥攎ás que en toda la década anterior鈥� 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聽聽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 鈥�10 veces más que el número de personas que viven en el planeta鈥� 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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But there’s a catch: If people want to move to original Medicare and buy a supplemental Medigap insurance plan to cover some out-of-pocket costs, they may not be able to. Medigap insurers can generally refuse coverage to applicants whose medical history or current health problems might make them expensive to cover, a process called medical underwriting.

“We really want people to factor that in,” said , managing policy attorney at the Center for Medicare Advocacy. “If someone is in a Medicare Advantage plan for several years and then wants to switch to original Medicare, they may find they can’t switch and also get a Medigap plan.”

There are many reasons people might want to trade their MA plan for traditional Medicare. Although MA managed-care plans are typically cheaper and offer benefits not available in original Medicare, such as coverage for vision and hearing services, they have smaller provider networks than the original program and, sometimes, extensive prior authorization requirements.

In addition, as Medicare Advantage plan in recent years, a growing number of plans are pulling out of areas they used to serve, leaving members with fewer options. This year, an estimated 1 in 10 MA plan members will be forced out of their plans for this reason, according to a in February.

“We saw some Medicare Advantage plans that just left the market completely and stopped issuing plans,” said Emily Whicheloe, education director at the Medicare Rights Center.

For those considering a switch to original Medicare, getting a Medigap plan can be tricky. Federal law provides a one-time, for people 65 or older and newly covered by Medicare Part B to sign up for any Medigap plan without underwriting. After that initial sign-up period ends, however, there are fewer coverage guarantees.

But some do exist. Here are a few key circumstances and time frames when people are guaranteed a Medigap plan without having to undergo underwriting:

• People who live in Connecticut, Massachusetts, or New York can sign up for a Medigap policy without underwriting. In Maine, there is a one-month window each year when Medigap insurers must offer Plan A to all comers without underwriting. (Plan A provides less comprehensive coverage than some of the other standardized plan types.)
• People who sign up for a Medicare Advantage plan when they are first eligible for Medicare Part A at age 65 can switch to original Medicare within the first year and buy a Medigap plan too. This is sometimes called the “.”
• If a Medicare Advantage plan leaves Medicare or in an area, affected enrollees can switch to original Medicare and buy a Medigap plan either 60 days before or up to 63 days after their MA coverage ends. During this special enrollment period, they can’t be turned down or charged more based on their health.
• If an individual and no longer has access to their Medicare Advantage plan providers, they can switch to original Medicare and apply for a Medigap policy either 60 days before or up to 63 days after their MA coverage ends. That typically happens when someone notifies the plan of their permanent move or the plan discovers it, said , a training, policy, and technical assistance consultant at California Health Advocates who specializes in Medicare and Medigap coverage.

There are other circumstances when someone might qualify for a special enrollment period under federal rules, and states may have additional qualifying events that are more generous than federal standards.

Patient advocates emphasize that it’s often useful to work with a counselor at the , or SHIP, for free, unbiased help figuring out Medigap coverage options. SHIP counselors can help applicants identify potential avenues to qualify for Medigap coverage without underwriting at both the federal and state levels.

People who don’t qualify for a guaranteed right to a Medigap plan without underwriting may still be approved for coverage. Premiums may be higher, however, and plans may impose a waiting period of up to six months for coverage of preexisting medical conditions in certain circumstances.

Beware: More Underwriting

In recent years, some Medigap insurers have spent a growing percentage of premiums on medical claims, putting pressure on profits, Burns said. “Medigap insurers’ underwriting has tightened up considerably recently,” she said.

The list of health conditions that Medigap insurers might deny coverage for is long, including Alzheimer’s disease, asthma, cancer, congestive heart disease, diabetes with complications, end-stage renal disease, high blood pressure, and stroke, among others, according to a of leading insurers’ applications.

When people apply for a Medigap plan that will be medically underwritten, they will typically be asked to fill out a health questionnaire, said , a principal and consulting actuary at Milliman who is a Society of Actuaries fellow. Increasingly, insurers are requesting that people agree to a prescription drug background check, Ortner said.

“Oftentimes, that prescription drug history may be the primary driver of a decision as it relates to underwriting,” he said, rather than a physical exam or medical records review.

Insurers don’t all have the same underwriting rules, however. Here again, a SHIP counselor may be useful for pointing people to specific companies that accept applicants with a particular medical diagnosis, or have different waiting periods or coverage exclusions.

“They have access to a Medigap comparison tool in addition to what is existing on that can give you a very good estimate of what you may pay for those Medigap plans,” said , associate director of health coverage and benefits at the National Council on Aging.

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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This story can be republished for free (details).