Amanda Miller tenía 30 años y estaba embarazada de su segundo hijo en Hershey, Pennsylvania, cuando desarrolló depresión. Después de dar a luz, su afección empeoró. Se sumó a una serie de problemas de salud inexplicables.

Miller, quien es neurocientífica, dijo que consultó a varios psiquiatras y recibió receta tras receta de distintos medicamentos. Durante dos años, probó cuatro antidepresivos y dos antipsicóticos. Nada de eso ayudó hasta que su doctor de atención primaria notó niveles altos de un marcador autoinmune en su sangre.

Un especialista luego le hizo “todas las pruebas posibles”, dijo Miller. Finalmente, la diagnosticaron con la enfermedad autoinmune lupus y le recetaron un esteroide para reducir la inflamación. Algunos de sus síntomas mejoraron en cuestión de horas. Su depresión disminuyó poco después.

“Estaba convencida de que era un efecto placebo”, dijo Miller, “pero luego siguió funcionando”.

¿Había contribuido la inflamación a sus problemas de salud mental todo el tiempo? Miller cree que sí, aunque no puede saberlo con certeza. Sus psiquiatras nunca mencionaron esa posibilidad, dijo.

En la mayoría de las especialidades médicas, los doctores pueden confirmar si deben seguir un tipo de tratamiento mediante pruebas, como análisis de sangre, estudios de imagen y biopsias. Sin embargo, los trastornos mentales históricamente se han diagnosticado y tratado en base a síntomas visibles. Eso podría cambiar.

En un documento de enero, la Asociación Americana de Psiquiatría incluyó ideas sobre cómo podría incorporar biomarcadores —indicadores biológicos de enfermedad mental que pueden aparecer en pruebas diagnósticas— en futuras versiones de su Manual Diagnóstico y Estadístico de los Trastornos Mentales (DSM, por sus siglas en inglés).

El DSM, a veces llamado “la Biblia de la psiquiatría” por su influencia en el campo, proporciona criterios de diagnóstico. Lo utilizan clínicos que evalúan a pacientes y aseguradoras para decidir si cubren la atención.

Se necesita investigación “coordinada”

Los biomarcadores psiquiátricos aún no están listos para un uso generalizado, enfatiza el documento. Los científicos han investigado el tema por décadas, con pocos resultados. Se necesita más investigación para demostrar que estas mediciones son lo suficientemente válidas y confiables para usarse en la atención de pacientes, señala el documento de la asociación, y otros investigadores han planteado dudas sobre cómo su uso podría afectar los costos de la atención médica, la cobertura y la privacidad de los pacientes.

Agregar biomarcadores al DSM sería “algo muy importante”, dijo Jonathan Alpert, autor del documento de enero y vicepresidente del Comité Estratégico del Futuro del DSM de la asociación profesional.

El acceso a resultados de pruebas, junto con los síntomas, podría agilizar las decisiones de cobertura de seguros y ayudar a los clínicos a hacer diagnósticos y recomendaciones de tratamiento más rápidos y precisos, dijo. Si la biología de los pacientes sugiere que responderán mejor a un tratamiento que a otro, el doctor podría comenzar de inmediato con esa opción.

Actualmente, recetar medicamentos psiquiátricos puede ser “algo incierto”, ya que los clínicos no pueden predecir si funcionarán en un paciente en particular, dijo Matthew Eisenberg, director del Centro de Políticas de Salud Mental y Adicciones de la Escuela de Salud Pública Bloomberg de la Universidad Johns Hopkins.

En un ensayo esencial de principios de la década de 2000 financiado por el Instituto Nacional de Salud Mental, alrededor del 30% de los participantes con depresión vieron desaparecer sus síntomas con su primer tratamiento antidepresivo. Ese estudio sigue siendo uno de los ensayos más sólidos realizados sobre antidepresivos, aunque investigadores han indicado recientemente que menos personas se curan con estos medicamentos de lo que sugieren sus resultados.

Este enfoque de prueba y error puede llevar a recetas ineficaces e innecesarias, un tema criticado por defensores del movimiento Make America Healthy Again, encabezado por el secretario del Departamento de Salud y Servicios Humanos (HHS), Robert F. Kennedy Jr.

Kennedy ha sido especialmente crítico de los antidepresivos, al vincularlos con la violencia después de un tiroteo masivo sin evidencia y culpar a los doctores por recetar en exceso medicamentos a niños.

El HHS está analizando tendencias en diagnósticos y recetas psiquiátricas y evaluando enfoques alternativos de tratamiento en salud mental, con especial atención en niños, dijo la vocera Emily Hilliard en un comunicado. Hilliard no respondió a una pregunta sobre comentarios previos de Kennedy.

Los biomarcadores ya se utilizan para guiar tratamientos en otras áreas médicas, como la oncología. Arizona, Georgia, Kentucky, Texas y más de una docena de otros estados exigen que las aseguradoras cubran este tipo de pruebas. También se utilizan análisis de sangre y estudios de imagen para ayudar a diagnosticar la enfermedad de Alzheimer.

La Asociación Americana de Psiquiatría incluyó en su artículo varias formas en que los biomarcadores psiquiátricos podrían usarse en el futuro, como pruebas de actividad cerebral, perfiles genéticos o marcadores inmunológicos asociados con ciertas condiciones psiquiátricas, incluidas la esquizofrenia y las adicciones.

En la depresión, por ejemplo, alrededor de una cuarta parte de los pacientes tiene niveles elevados de una proteína inflamatoria llamada proteína C reactiva, que puede detectarse mediante un análisis de sangre. Las investigaciones han mostrado que las personas con niveles altos de esta proteína parecen responder mejor cuando reciben medicamentos que modifican los niveles de dopamina en el cerebro, en lugar de usar solo inhibidores selectivos de la recaptación de serotonina (ISRS), un tipo común de antidepresivo.

La proteína C reactiva aún necesita ser “validada de manera sólida” como biomarcador, según el documento de la APA, pero es una de las opciones más prometedoras bajo estudio.

Se necesita un esfuerzo de investigación “coordinado y bien financiado” para lograr esa validación, escribió la asociación, lo cual es incierto ya que la administración Trump recortó el financiamiento para investigación.

Solo al Instituto Nacional de Salud Mental se le cancelaron en 2025 al menos 128 subvenciones, por un valor de casi $173 millones, según una carta de investigación en la revista JAMA. Aunque desde entonces algunas subvenciones han sido restauradas, los investigadores que dependen de fondos federales aún temen recortes.

“Hay una gran necesidad de financiamiento continuo y activo para la investigación relacionada con la salud mental”, dijo Alpert, pero los científicos tendrán que enfrentar “incertidumbres en el panorama de financiamiento”.

Efectos en cobertura y costos

Los costos de la atención médica tienden a ser más altos entre pacientes con enfermedades mentales mal controladas, debido a gastos como hospitalizaciones, consultas ambulatorias y medicamentos. Algunas investigaciones sugieren que las pruebas de biomarcadores podrían ahorrar dinero al encontrar tratamientos adecuados más rápido y evitar algunos de estos costos.

Un estudio de modelado estimó que las pruebas para identificar componentes genéticos que pueden influir en la efectividad de un medicamento podrían ahorrar al sistema de salud de Canadá $956 millones en 20 años si se aplican en adultos con depresión mayor en British Columbia. Otro estudio, de investigadores españoles, encontró que estas pruebas redujeron costos para la mayoría de los 188 participantes con enfermedad mental grave.

No se sabe si ocurriría lo mismo en el sistema de salud de Estados Unidos. A corto plazo, dijo Eisenberg, un enfoque que use biomarcadores podría aumentar el gasto en atención médica debido al costo de las pruebas.

Las aseguradoras podrían negarse a cubrir pruebas de biomarcadores costosas, agregó. “Toma tiempo demostrar que la nueva evidencia científica es segura y efectiva”, dijo Eisenberg. “Y una vez que lo es, las aseguradoras no la cubren de inmediato”.

Algunos investigadores han expresado preocupación de que aseguradoras o empleadores puedan discriminar a personas cuyos perfiles biológicos sugieren riesgo de desarrollar afecciones neuropsiquiátricas graves.

Es un “momento crítico” para considerar enfoques legislativos que protejan a los pacientes y capaciten a los clínicos sobre cómo usar estas herramientas de manera adecuada, dijo Gabriel Lázaro-Muñoz, miembro del Centro de Bioética de la Escuela de Medicina de Harvard.

“No creo que el campo de la psiquiatría esté listo en este momento para manejar esto”, dijo.

El sistema de salud mental no está listo para “avanzar por completo”, dijo Andrew Miller, profesor de psiquiatría y ciencias del comportamiento en la Facultad de Medicina de la Universidad Emory, quien estudia la depresión relacionada con la inflamación. Pero la adopción de biomarcadores por parte de la asociación de psiquiatría marca “el inicio de una revolución”, dijo.

“Esto es un reconocimiento… de que lo que hemos hecho hasta ahora no ha sido suficiente”, dijo Miller. “Y podemos hacerlo mejor”.

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La primera señal apareció cuando Deepanwita Dasgupta tenía 5 años y empezó a tropezar más a menudo mientras jugaba en su casa en Bangalore, en el sur de India. La niña siempre estaba haciendo algo; por eso sus padres pensaron que los golpes y moretones extra eran simplemente parte de una infancia activa.

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 3 de cada 10 personas 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 Yasmin Khakoo, quien dirige la Sociedad de Neurología Infantil (Child Neurology Society) a nivel nacional, pero habló con KFF Health News en su papel como doctora en Nueva York con experiencia en enfermedades neurológicas.

Porque el sarampión puede ser peligroso. Un niño de 7 años en Carolina del Sur 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 registro nacional de pacientes con PEES.

Los investigadores ahora estiman 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) han registrado más de 3.500 casos de sarampión —más que en toda la década anterior— en su mayoría en personas no vacunadas. Muchos eran niños.

El año pasado, doctores en Connecticut diagnosticaron PEES a un niño de 6 años y, en California, otro en edad escolar que había tenido sarampión cuando era bebé murió por esta enfermedad.

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

La preocupación por la PEES fue lo suficientemente grande como para que en enero la Child Neurology Society publicara un video 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 Aaron Nelson, 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 90 % al 3 % y, por lo tanto, disminuye la posibilidad de desarrollar PEES.

Las vacunas tienen pequeños riesgos de convulsiones por fiebre y un trastorno hemorrágico, pero el sarampión tiene un riesgo mayor de causar ambos.

Casos en Estados Unidos

Un estudio de 2017 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 Nava Yeganeh y a sus colegas a publicar un comunicado en septiembre cuando un niño del condado de Los Ángeles murió de PEES.

“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 ha aumentado en los últimos años, y médicos en lugares como el Reino Unido e Italia 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 PEES 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 están bajando 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 All India Institute of Medical Sciences y hasta hace poco dirigía la Association of Child Neurology de India.

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

Roberto Cattaneo, 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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When Raven Kinser walked into a Virginia Department of Motor Vehicles office two summers ago, she completed a driver’s license application that included the option to register as an organ donor. The form provides a checkbox to opt in, but not one to opt out. Kinser left the donor registration box unchecked, reflecting her decision to reverse an earlier donor registration. Six months later, after she was declared dead at Riverside Regional Medical Center in Newport News, Virginia, her parents say, they learned that her decision did not prevent organ procurement.

Raven’s case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out — or to ensure a later “no” overrides an earlier “yes” in a different state.

This gap, along with a range of other issues related to the organ procurement system, has become a point of bipartisan congressional concern. Late last year, the House Ways and Means subcommittee on oversight held a hearing examining what members described as shortcomings, including alleged consent failures.

The panel’s scrutiny of organ procurement organizations, or OPOs, and their consent practices is a first step toward a more meaningful accountability plan that could help maintain trust across the system, according to some committee staff members.

The trust in our organ procurement and transplant system “has been eroded,” said Rep. Terri Sewell of Alabama, the panel’s senior Democrat, calling for stronger transparency and oversight to rebuild public confidence.

“Respect for autonomy — our ability to make our own decisions (self-determination) — allows for both ‘yes’ and ‘no’ decisions and for changing one’s mind,” Margaret McLean, a bioethicist at Santa Clara University, said in an email.

“Medical decision-making is not well served in a context of ambiguity,” she said.

And if a donor revokes consent, she added, “revocation by that person should carry the same ethical and procedural weight as the initial authorization, perhaps more.”

Raven Kinser Changed Her Mind

Raven was 25 when she died. Her parents, Jeff and Jaime Kinser, were at home in Michigan when they received the phone call that shattered their world. They drove through the night to the Newport News hospital, where they learned Raven’s disposition had been referred to LifeNet Health, the region’s federally designated OPO. LifeNet is rated a failing OPO by the Centers for Medicare & Medicaid Services, meaning it doesn’t meet the government’s standards for how well it finds donors and recovers usable organs for transplant compared with other organizations.

Under federal law, hospitals are required to refer deaths and imminent deaths to OPOs, which take responsibility for donation-related decisions and discussions.

OPOs occupy a hybrid position in the health care system, as private nonprofit entities that hold exclusive, federally authorized contracts to recover organs within defined regions. They are regulated by CMS and overseen by the Health Resources and Services Administration, but that oversight occurs primarily through certification standards, performance metrics, and periodic audits rather than routine public disclosure requirements. With donor registries largely managed at the state level and no unified federal reporting requirement for removals, comprehensive national data on revocations is elusive.

OPOs are meant to separate bedside care from organ procurement decisions — to help prevent conflicts of interest and preserve the trust that decisions about life-sustaining treatment are made solely in the dying patient’s interest. But the policy can be fraught, leaving families unsure who is in control if and when conflicts arise.

The Kinsers, for instance, felt their daughter would not have wanted to go through the donation process, but, at the time, had no evidence. Jaime remembers telling her husband that Raven would have been mad at them for letting it happen. In an effort to stop it, Jaime inquired about whether she would be asked to sign a consent form. But a LifeNet staff member told her that wasn’t an option because donation was Raven’s “living will,” Jaime said. Meanwhile, Raven’s parents said, her personal effects, including her Virginia driver’s license, which bore no donor designation, had not yet been turned over to the family, leaving them no meaningful way to challenge LifeNet’s determination in real time.

Jaime struggled with this outcome, even mentioning in Raven’s obituary that she was an organ donor. “How would you try to make peace with something that you felt was so wrong but had no proof?” Jamie said.

Two months passed before the Kinsers gained possession of the license, which, as they had expected, showed that Raven had not opted to be an organ donor.

According to the Kinsers, LifeNet staff told them that Raven’s status as a registered donor was established by her designation on her older Michigan license.

An emailed statement attributed to Douglas Wilson, LifeNet executive vice president, said the OPO follows federal law on organ donation, the Uniform Anatomical Gift Act, and queries applicable state donor registries, relying on time stamps and governing law to determine the most recent, legally valid expression of intent. Under that framework, a prior donor authorization remains enforceable unless a valid revocation is recorded in the regional OPO’s donor registry.

Because of privacy laws, Wilson said, LifeNet could not comment on the specifics of any individual case.

Raven Kinser’s choice not to be a donor when she applied for a Virginia license in July 2024 was not reflected in the registry LifeNet consulted, according to her parents, who said that is what the organization told them. According to Lara Malbon, executive director of Donate Life Virginia, which manages the state’s organ donor registry, if someone changes their donor status while completing a Virginia driver’s license or ID transaction, “that information is sent to our registry, and the registry is updated daily to reflect those changes.” Malbon also said Virginia’s registry includes only people who have “affirmatively said ‘yes’ to becoming an organ, eye, and tissue donor, and it retains records solely for those who have made that decision.”

The Kinsers said they were never told why Raven’s Virginia DMV record was insufficient, or how an older yes from Michigan could outweigh a newer no in Virginia.

In December, the Kinsers filed a complaint with the Health Resources and Services Administration, urging federal regulators to investigate LifeNet’s actions and require OPOs to provide families with documented proof of the donor’s current status at the time of referral. They also called for OPOs, which operate as federally designated regional monopolies but are structured as private nonprofits, to be made subject to public records laws.

When Opting Out Doesn’t Stick

Such confusion is not unique to the Kinser family. It is a consequence of the organ donation consent process in the United States.

“I have also wondered that: why there’s not just one” registry for organ donation, Jaime said. “If you go to get a firearm, you have one federal place.”

Here’s how the system works: Americans typically register their organ donation intentions when they apply for driver’s licenses through state DMVs, and that decision remains governed largely by state law. That has led to 50 different sets of rules and very little federal regulation of what has become an over $5 billion industry in the U.S.

In some states, a donor checkbox is a binding legal document. In other states, the same choice may have different rules about when it takes effect, what it covers, and how it can be revoked.

Those differences can be big. State rules determine whether a person’s “gift” is limited to transplantation or also includes research and education. They determine whether the donation authorization includes tissue. And they can determine what counts as a valid revocation and when it is legally recognized.

Because of the system’s fragmentation, though, signals can cross when someone changes their mind, like Raven; it’s not always reflected from one state system to another.

Under state versions of the Uniform Anatomical Gift Act, a donor’s most recent legally valid expression of intent is meant to control.

“Personal autonomy is paramount to everything,” said Adam Schiavi, a neurointensivist who studies end-of-life decision-making. “If I say I want to be a donor, or if I say I don’t want to be a donor, that has to take precedence over everything else.”

But states differ in how revocation must be recorded and which registry is considered authoritative if someone has lived in more than one state. Those inconsistencies can create uncertainty when records conflict across jurisdictions.

“It has to be the most recent expression, not the most recent yes,” Schiavi said.

In Michigan, a change to someone’s donor status is reflected immediately in the secretary of state’s system, but only affirmative “yes” registrations appear in the registry. Removal information remains in internal motor vehicle records. In Virginia, the state registry includes only those who have affirmatively said “yes,” retaining records solely of donors, creating potential gaps if someone believes a DMV change alone is sufficient.

Elsewhere, processes and volumes differ sharply. New Mexico updates driver records in real time but does not transmit status changes to its donor registry. Instead, donor services receive restricted search access. The state logged nearly 15,000 removals in late 2021 and almost 30,000 in 2022. Florida, which maintains formal removal records through weekly DMV data files, reported 356,161 removals in 2020, more than 1.5 million in 2023, and over 1.2 million in 2025. Kentucky processed 847,371 donor registrations from 2020 to 2025, but only 16,043 icon removals, with registry withdrawal handled separately. In 2025, more than 570,000 Texans opted into the registry, while over 31,000 individuals requested removal.

According to a federal official who asked not to be identified for fear of professional repercussions, OPOs have been highly effective at lobbying states to broaden the definition of consent and authorization — shaping how those terms are applied, whether those statuses must be renewed, and how easy or difficult it is for someone to opt out.

In subsequent correspondence with federal officials, the Kinsers have urged reforms to prevent OPOs from relying on older registry entries when a more recent state DMV record exists, and they have called for criminal penalties in cases in which consent is knowingly misrepresented. Federal regulators have not indicated whether such proposals are under consideration.

Congress Takes a Closer Look

Ethicists have long cautioned that consent must be more than a checkbox and must remain grounded in respect for the donor-patient. In an October position paper on organ transplantation, the American College of Physicians emphasized that clinicians’ primary duty is to the patient in their care, and that maintaining trust requires transparency and safeguards to prevent conflicts of interest from blurring that “bright line.”

Advocates say those steps leave unresolved the core problem raised by the Kinser family: the lack of a clear, legally binding way for people to say “no” and for that decision to follow them across state lines.

The Association of Organ Procurement Organizations said it “supports strengthening donor registries and enhancing registry interoperability to ensure that an individual’s documented donation decision is honored.” But OPOs have also argued that current policies protect donation as a legally enforceable gift and prevent families from overriding a loved one’s “yes” in the midst of grief. They argue that stronger, more durable consent helps reduce missed donations and saves lives.

Congress and federal regulators are considering changes to the nation’s organ donation system, including how consent is recorded and what should happen when a donor changes their mind.

Sen. Ron Wyden (D-Ore.) proposed legislation last year to create new federal standards for patient safety, transparency, and oversight of organ transplants, including a formal authorization for hospital or OPO staff to pause harvesting if there is any “clinical sign of life.”

HHS press secretary Emily Hilliard said the agency is “committed to holding organ procurement organizations accountable” and to “restoring integrity and transparency” to organ donation policy, calling reforms essential to informed consent and protecting donor rights. CMS issued related new guidance March 11, but it does not address the problems highlighted by the Kinsers’ case.

Critics of the organ transplant system say it is difficult for families to obtain documentation or independently verify how consent determinations were made in disputed cases.

HRSA has launched a sweeping modernization of the Organ Procurement and Transplantation Network, the national system that oversees organ allocation and transplant policy. Federal officials have described the overhaul as the most significant restructuring of the transplant system in decades, aimed at breaking up a long-standing contractor monopoly, strengthening patient safety oversight, and replacing aging technology infrastructure.

Central to that effort is modernizing the OPTN’s data systems: improving interoperability, audit trails, and transparency in how decisions are documented and reviewed. A more modern federal data architecture could make it easier to trace which registry was queried, what time stamp controlled, and how a consent determination was reached in disputed donations that span multiple states. But the modernization effort would not change the underlying state-by-state legal framework for donor authorization and what counts as a valid “no.”

Meanwhile, Donate Life America, a national nonprofit that supports state donor registries, also runs the National Donate Life Registry, a central database that allows people to sign up as organ donors directly. Unlike many DMV systems, the national registry lets people log in at any time to view, update, or remove their registration and print proof of their decision. The group is also starting a project to let participating states send registrations directly into the national system, creating one place to track donor sign-ups and removals across state lines.

Each of the proposals comes with trade-offs, and both advocates and OPOs have raised concerns about how they would work in practice.

“Just doing a dump truck dump of information is not going to do much unless you really apply it through checking and auditing,” said Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine. “It could be like the IRS. They don’t have to audit everybody. Just do a spot audit once in a while.”

The Kinsers aren’t opposed to organ donation itself. They celebrated Raven’s donation in her obituary, and in their complaint to federal regulators, they wrote, “We are NOT anti-organ donation, and we will never take away the gift of life our oldest daughter gave to others. However, that was not LifeNet’s choice to make.”

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Most groups defended their support for medical intervention. But the Society for Plastic Surgeons broke with the consensus.

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LOS ANGELES — Mia Angulo, who is pregnant and due in May, is living in a tent with her boyfriend in the predominantly Latino neighborhood of Boyle Heights.

Lingering pain from a car crash two months ago, on top of an already hardscrabble life, has Angulo worried about her pregnancy. So, she was relieved when a mobile street medicine van from St. John’s Community Health pulled up near her encampment last month.

“Thank God that we have them,” she said.

St. John’s, which operates 28 clinics, mostly in L.A. County, is part of the nation’s network of nonprofit community clinics that care for the poorest Americans. Around 80% of its 144,000 patients, including Angulo, have Medi-Cal, California’s version of the Medicaid program for people with low incomes or disabilities.

But federal cuts to Medicaid spending under the Republican-passed One Big Beautiful Bill Act, compounded by fiscal belt-tightening in Sacramento, could cost St. John’s up to one-third of its $240 million annual revenue, requiring cuts to services that might include street medicine, said Jim Mangia, the president and CEO.

Smaller, more cash-strapped clinics in L.A. County could face harsher consequences, including closure, if the lost funding is not replaced.

That’s why Mangia, along with a coalition of community clinics, health care workers, and advocates, is pushing for a five-year, half-cent sales tax in the nation’s most populous county to help backfill the projected loss of federal and state dollars. St. John’s has contributed at least $2 million to the campaign so far.

Louise McCarthy, president and CEO of the Community Clinic Association of Los Angeles County, said there aren’t a lot of options to save the health care system from disaster.

“Our backs are up against the wall,” she said. “This has the potential to be a game changer. It will be an absolutely significant offset to the losses.”

The L.A. County Board of Supervisors approved the proposal last month for inclusion on the June 2 primary ballot, over the objection of some cities within the county. Their leaders argued the tax would put a strain on consumers and business owners. Most of an estimated $1 billion in annual revenue generated would be used to protect safety-net health care at community clinics, hospitals, and schools.

Scrambling To Stay Afloat

Nationally, the GOP budget law is expected to cut federal Medicaid spending by $911 billion over 10 years, and it could lead to an increase of over 14 million in the number of people left uninsured. The L.A. ballot proposal is among many local and state initiatives nationwide, as clinics, hospitals, health care workers, advocates, and legislators scramble for new money to help offset the spending cuts.

In Michigan, where the federal law is projected to cost the state $32 billion over 10 years, Democratic Gov. Gretchen Whitmer’s office has proposed new or increased taxes on tobacco, vape products, online gambling, sports betting, and digital advertising, which it projects would raise hundreds of millions of dollars annually.

In Rhode Island, a group of state legislators hopes to ease some of the pain caused by the federal cuts with a package of bills that includes a tax on digital ads and a 3% surcharge on taxable incomes above roughly $640,000.

“The goal is not to replace the revenue; it’s to mitigate the damage,” said Democratic state Rep. Brandon Potter, one of the legislators involved.

In Washington, Democratic state Rep. Shaun Scott recently introduced legislation to address the loss of federal dollars with a 5% payroll tax on large companies, applied to employee salaries exceeding $125,000 a year.

In California, the GOP law will slash the federal contribution to Medi-Cal by an estimated $30 billion a year, or 25%. Enrollment in Medi-Cal could drop by 3 million by 2028 as a result of the federal and state spending cuts, according to an analysis by the UCLA Center for Health Policy Research and the University of California-Berkeley Labor Center.

In July, California will slash Medi-Cal payments that community clinics receive for certain services provided to patients with “unsatisfactory” immigration status by about $1 billion a year. Those patients include permanent residents in the country for less than five years, refugees, asylees, and other lawfully present people.

Bracing for a ‘New Reality’?

Advocates and health care experts say finding new revenue is the only way to avoid a crisis in California’s health care system.

“Are we going to let the gaps created by federal policies and state budget cuts leave millions of people uninsured?” said Laurel Lucia, deputy executive director of programs at the UC Berkeley Labor Center. “I think a lot of that question comes down to revenues.”

Some medical professionals say that new revenue is needed in the short term but that the country needs to address its notoriously expensive health care system.

“This new reality is that we have to do our work with less money going into the future,” said Hector Flores, president-elect of the Los Angeles County Medical Association. “So, this is an opportunity for us to look at how we can do things better.”

In the meantime, efforts to raise taxes for health care abound.

Voters in Santa Clara County, home to Silicon Valley, last November approved a five-year 0.625% sales tax increase to offset federal Medicaid cuts. A similar measure will be on the June ballot in Contra Costa County.

The best-known initiative, and a hotly contested one, is a union-sponsored ballot proposal in California for a one-time 5% tax on the state’s more than 200 billionaires. Democratic Gov. Gavin Newsom strongly opposes it; Sen. Bernie Sanders (I-Vt.) stumped for it in California recently and has promised to introduce a national version in Congress.

Proponents of the temporary wealth tax say it would raise $100 billion, which would mostly be used to backfill lost federal and state dollars in Medi-Cal and other safety-net programs. Proponents are trying to collect nearly 875,000 signatures needed to get it on the November ballot.

“We are on the precipice of a collapse of our health care system. So the most fortunate among us pay a modest tax that will hold us over and allow us to figure out a long-term solution,” said Suzanne Jimenez, chief of staff for Service Employees International Union-United Healthcare Workers West, the measure’s chief sponsor. “They would still be incredibly wealthy after that.”

Billionaires Push Back

The plan has stirred considerable controversy, not just in the Golden State but nationwide, and has generated strong resistance from billionaires and others.

Critics argue the measure could prompt billionaires to leave California, putting a damper on innovation, jobs, and tax receipts. And, some warn, the measure could end up in a legal quagmire, as those deemed liable to pony up challenge it on multiple fronts.

“If this passed, you would expect it to be tied up in court for some time,” said Jared Walczak, a visiting fellow at the California Tax Foundation. “It is fairly plausible that no revenue could come in for a number of years, if there’s ever any revenue at all.”

The prospect of such complications has led some health care advocates to focus instead on local initiatives that could start generating revenue more quickly, such as the proposed sales tax in L.A. County.

That one has critics too, including leaders of multiple cities within the county who pleaded with supervisors to reject a proposal they argued would add to the affordability worries of consumers and put a strain on businesses.

Kathryn Barger, a Republican and the only L.A. County supervisor to oppose putting the measure on the June ballot, said in a statement that the proposed tax would make the county “less affordable for families and less appealing for consumers to shop and businesses to operate.”

But supporters say safety-net health care is already feeling the impact of diminished funding. Last month, for example, L.A. County’s Department of Public Health announced it was closing seven clinics due to $50 million in federal, state, and local funding cuts.

Medi-Cal enrollees are worried, too. “We get a lot of calls from panicked patients afraid they’re going to lose their Medi-Cal. Dozens of calls a day, hundreds of calls a week,” said St. John’s Mangia.

“We tell them that we’re working on a solution and hopefully we’ll have that solution come June.”

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

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A federal work group says Covid vaccine injuries deserve urgent attention, even as Health Secretary Robert F. Kennedy Jr. shifts away from talking about vaccine policy.

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She wrote about postpartum depression when it was an unmentionable like abortion or birth control, and her research on her own suffering helped countless women.

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KFF Health News southern correspondent Sam Whitehead discussed Medicaid work requirements on WUGA’s The Georgia Health Report on March 6.

KFF Health News Colorado correspondent Rae Ellen Bichell discussed wage garnishment legislation on KUNC’s In the NoCo on March 5.

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

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The number doctors use to demarcate hypertension keeps going down, a trend applauded by many experts, who point to studies linking high blood pressure and dementia.

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The first sign came when Deepanwita Dasgupta was 5 and started stumbling more while playing at her home in Bangalore in southern India. The girl was always up to something, so her parents figured extra bumps and bruises were just symptoms of an active childhood. Maybe, they thought, it was ill-fitting shoes.

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 3 in 10 infected people, 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 Yasmin Khakoo, who leads the national Child Neurology Society but spoke to KFF Health News in her capacity as a New York City doctor with expertise in neurologic conditions.

Measles, though, can be dangerous: A 7-year-old in South Carolina 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 a national registry of SSPE patients. Researchers now estimate 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 Centers for Disease Control and Prevention has recorded over 3,500 measles cases — more than in the entire preceding decade — mostly people who were unvaccinated. Many were children. Last year, Connecticut doctors diagnosed a 6-year-old with SSPE, and in California, a school-age child who’d had measles as an infant died of it.

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

Concern about SSPE was great enough that in January, the Child Neurology Society published a video 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 Aaron Nelson, 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 90% to 3% — and thus reduces the chance of SSPE. The vaccines carry small risks of febrile seizure and a bleeding condition, but measles itself has a higher risk of causing both.

Cases in the U.S.

A 2017 study 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 Nava Yeganeh and her colleagues to publish a news release in September when a Los Angeles County child died of SSPE.

“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 has increased in recent years, and physicians in places including the U.K. and Italy 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 studies SSPE 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 coming down, 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 All India Institute of Medical Sciences and until recently led India’s Association of Child Neurology.

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

Roberto Cattaneo, a molecular biologist at the Mayo Clinic in Rochester, Minnesota, has been studying SSPE 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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Will Mair, who studies aging, lost almost all his research funds when the White House cracked down on Harvard. He was wholly unprepared for the upheaval that followed.

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The Host

Julie Rovner KFF Health News @jrovner @julierovner.bsky.social Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

It’s been a tough week for Health and Human Services Secretary Robert F. Kennedy Jr. In addition to Kennedy having surgery to repair a torn rotator cuff, personnel issues continue to plague the department: The nominee to become surgeon general, an ally of Kennedy’s, may lack the votes for Senate confirmation. The controversial head of the Food and Drug Administration’s vaccine center was forced to resign. And a new survey finds Americans have less trust in HHS leaders now than they did during the pandemic.

Meanwhile, the Trump administration continues its crackdown over claims of rampant health care fraud. In addition to targeting the Medicaid programs in states led by Democratic governors, the Centers for Medicare & Medicaid Services is also taking aim at previously sacrosanct Medicare Advantage plans.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Shefali Luthra of The 19th.

Panelists

Anna Edney Bloomberg News @annaedney @annaedney.bsky.social Read Anna's stories. Joanne Kenen Johns Hopkins University and Politico @JoanneKenen @joannekenen.bsky.social Read Joanne's bio. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories.

Among the takeaways from this week’s episode:

  • Americans feel more confident in career scientists at federal health agencies than in the agencies’ leaders, according to a new survey from the Annenberg Public Policy Center at the University of Pennsylvania. Yet the survey also sheds more light on the erosion of trust in public health officials and scientific research.
  • The FDA’s vaccine chief, Vinay Prasad, is leaving — again. Prasad was a critic of the agency before he joined it, and his tenure has been shaped by the same attitude, affecting career officials’ morale and the agency’s interactions with outside companies.
  • The Trump administration has extended its fraud crackdown campaign into Medicare Advantage plans. The privately run alternative to traditional Medicare coverage has been a GOP darling from the get-go. Yet President Donald Trump is nudging the party away from its pro-business stance on private insurance, arguing the government should give money to patients rather than insurers — a justification for policies undermining the Affordable Care Act.
  • And Wyoming became the latest state to enact a six-week abortion ban, a move that’s being challenged in court. The development points to the fact that while federal policymaking on abortion has largely stalled, the issue is still very much in play in the states as abortion opponents keep pushing back on access to the procedure.

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

Julie Rovner: The Marshall Project’s “The Harrowing Journey Home for Families Leaving Immigration Detention,” by Shannon Heffernan, Jesse Bogan, and Anna Flagg.

Anna Edney: The Wall Street Journal’s “The Boom in Autism Therapy Is Medicaid’s Fastest-Growing Jackpot,” by Christopher Weaver, Tom McGinty, and Anna Wilde Mathews.

Shefali Luthra: The New York Times’ “States Move To Limit Access to H.I.V. Treatment,” by Apoorva Mandavilli.

Joanne Kenen: The Idaho Capital Sun’s “988 Ended His Call. Now an Idaho Teen Is Pushing for a Fix to State’s Parental Consent Law,” by Laura Guido.

Also mentioned in this week’s podcast:

Credits

Francis Ying Audio producer Emmarie Huetteman Editor

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César Manuel González, 37, used to work with stone that was engineered to endure: dense, polished slabs designed to outlast the kitchens in which they were installed.

Engineered quartz countertops have surged in popularity in the home renovation market, with industry analysts estimating the global engineered stone market at around $30 billion. It’s continuing to expand as quartz surfaces replace natural stone in kitchens in the United States and worldwide.

When González was working, the dust that rose from his saw didn’t look extraordinary. It settled on his clothes, in his hair, across the shop floor. In a small countertop fabrication shop, he cut marble and granite before shifting to engineered stone after the 2008-09 recession, when demand for cheaper quartz countertops surged.

But the crystalline silica released while the engineered stone was cut and polished also settled into his lungs, scarring them beyond repair. What began as breathlessness hardened into silicosis, an irreversible disease that stiffens the lungs until even ordinary movement becomes effort.

A lung transplant was his path forward. The procedure can extend survival, but it redraws the boundaries of a life: anti-rejection drugs every day, constant monitoring, vulnerability to infection, the knowledge that breathing depends on the fragile acceptance of another person’s donated organ.

González, who was diagnosed with silicosis in 2023, is not alone in dealing with a disease that once was associated with miners at the end of long careers. It’s now prevalent among the much younger, often Hispanic men who work in this industry, physicians and public health officials say.

In the United States, cases are appearing in countertop fabrication shops from California to Texas, Florida, and the Northeast. Because silicosis is not a nationally reportable disease and surveillance varies by state, no comprehensive national count exists. But clinicians who treat occupational lung disease say the number of workers — often men in their 30s and 40s — diagnosed after cutting engineered stone has risen sharply over the past decade.

As of early March, California had identified 519 confirmed cases of engineered-stone-associated silicosis and 29 deaths since 2019. The median age at diagnosis is 46; at death, 49.

Doctors don’t debate whether working with engineered stone can scar lungs.

Manufacturers argue, though, that proper ventilation, wet cutting, and respirators can make fabrication safe. Workers, physicians, and plaintiffs’ attorneys counter that a material composed almost entirely of crystalline silica may be impossible to handle safely at scale.

“This is comparable to the tobacco industry saying cigarettes are safe,” said epidemiologist David Michaels, an assistant labor secretary under President Barack Obama who led the Occupational Safety and Health Administration.

More than 370 lawsuits have been filed by workers who say engineered stone manufacturers failed to warn employees about the risks or sold a product that cannot be fabricated safely. At the same time, members of Congress are considering legislation that would largely shield manufacturers from liability in those cases, turning a workplace health crisis into a national debate over regulation, responsibility, and the limits of civil litigation.

Gustavo Reyes, 36, is part of that debate. Like González, he spent the early years of his career cutting marble and granite before shifting to engineered stone, a quartz-based material that can contain up to 95% silica and generates far more hazardous dust when cut.

In the shop, he said, cutting was done with water to control the dust. But finishing work — sanding and shaping — generated heavy dust. He said he wore disposable respirator masks or a reusable elastomeric respirator with filters. A door was kept open. Fans ran overhead.

When he was diagnosed in 2021, he did not know what silicosis meant. The doctor told him that there was no medication and that he had three to five years to live. He received a lung transplant in 2023.

Asked who he believes is responsible, Reyes answered: “The industries who created the artificial stone, the product.” Manufacturers dispute that characterization. Major companies say engineered stone can be fabricated safely when employers follow OSHA dust controls, including wet cutting, ventilation, and respirator use.

An Old Disease, Reengineered

Silicosis is not new. It was synonymous with mining disasters and sandblasting, most notoriously in the Hawks Nest Tunnel tragedy, when hundreds of workers drilling through silica-rich rock in West Virginia in the early 1930s developed acute silicosis after months of unprotected exposure to dust. In 1938, Labor Secretary Frances Perkins advised that the disease could be prevented if dust controls were conscientiously applied.

What is new is the industry in which it has resurfaced.

Engineered stone, often marketed as “quartz,” is typically composed of crushed quartz bound with resins and pigments. Unlike marble, which contains little crystalline silica, engineered slabs contain very high levels of the substance.

Cutting changes the material.

“When you grind it, when you cut it, you’re pulverizing it,” said Robert Blink, an occupational and environmental medicine specialist who treats patients with advanced silicosis in Chicago and is a member of the Western Occupational and Environmental Medical Association. “You’re weaponizing the silica.”

Power tools fracture the surface into respirable particles small enough to lodge deep in the lungs. Repeated exposure triggers inflammation and fibrosis. Once scarring begins, it doesn’t reverse.

What Happens When You Look for It

In California, physicians say the pattern emerged gradually.

Robert Harrison, an occupational medicine physician at the University of California-San Francisco, helped identify the first cluster of engineered stone silicosis cases in California in 2019 after several workers from the same countertop fabrication shop died or were diagnosed with the disease. He described the crisis as “the largest outbreak of silicosis in decades.” What initially appeared as isolated cases of unexplained lung scarring in young men resolved into a recognizable occupational epidemic once work histories were examined.

Jane Fazio, a pulmonologist at UCLA, recalls seeing advanced fibrosis in otherwise healthy workers. “They have families. They were working full-time,” she said. Some experienced respiratory failure within a few years.

When doctors compared work histories, the pattern became unmistakable: Many of the men had worked in small shops cutting and polishing engineered stone countertops.

Sheiphali Gandhi, an occupational and environmental pulmonologist at UCSF, warned that the true burden remains uncertain. “We’re missing cases,” she said. “There’s no national surveillance system for this.”

California designated silicosis a reportable disease in 2025. Since 2019, statewide surveillance has identified hundreds of cases linked to engineered stone. The numbers probably underestimate the toll, though California’s dashboard makes the illness visible.

Outside California, there is no comparable tracking.

Early Warnings

California was not the first place this happened.

The earliest modern alarm came from Israel. Caesarstone, a company founded on a kibbutz in the late 1980s, helped popularize quartz countertops globally.

Israeli physicians began documenting aggressive silicosis in young countertop workers as early as 1997.

“We had never seen this before,” said Mordechai Kramer, a retired pulmonologist who previously worked at Rabin Medical Center in Israel. “In classic silicosis, you expect long exposure, decades. Here, it was much shorter.”

Several patients required lung transplantation.

Despite the warning signs, the market continued to expand.

Australia confronted the same pattern in the late 2010s.

Rather than wait for sporadic diagnoses, Australian regulators launched systematic CT-based screening of artificial-stone workers. Disease prevalence was far higher than anticipated.

Ryan Hoy, a respiratory physician and occupational health researcher at Australia’s Monash University, described severe disease in workers with relatively short exposures.

Authorities examined whether wet cutting, ventilation, and respirators could reduce exposure sufficiently. They ultimately concluded that even with controls, fabrication of high-silica engineered stone posed unacceptable risk.

In 2024, Australia prohibited the manufacture, supply, and installation of engineered stone containing high levels of crystalline silica. Manufacturers pivoted toward lower- and zero-silica formulations.

In the United States: Who’s To Blame?

Fabrication in the U.S. continues under OSHA’s silica standard, which relies on exposure limits, wet cutting, ventilation, and respiratory protection. Manufacturers argue that compliance works and that the problem lies with shops that fail to follow the rules.

OSHA first adopted silica limits in 1971 based on research from mining, quarrying, and foundry work. Although the agency updated the rule in 2016, it regulates crystalline silica broadly and does not distinguish between natural stone and high-silica engineered quartz.

The regulatory debate has now spilled into Congress. The Protection of Lawful Commerce in Stone Slab Products Act, introduced in September by Rep. Tom McClintock (R-Calif.), would largely shield manufacturers and distributors of engineered stone from civil lawsuits arising from the manufacture or sale of their products. McClintock’s office did not respond to a request for comment.

The bill was the subject of a January House Judiciary subcommittee hearing.

Supporters of the measure argue that manufacturers should not be held liable for injuries caused by employers who fail to follow OSHA standards. Opponents warn that removing litigation pressure would eliminate one of the few mechanisms capable of driving product reform if the material itself cannot be safely handled.

Michaels, the former OSHA official, sees the stakes as historical. “Litigation drives change,” he said, pointing to past battles over asbestos and tobacco.

Plaintiffs’ attorneys argue that compliance with the OSHA silica standard does not eliminate risk.

“It’s not a few bad actors,” said Raphael Metzger, a product liability attorney who has filed roughly 200 silicosis-related injury cases and a class action seeking medical monitoring. He said the issue is the product’s composition, not isolated regulatory noncompliance.

James Nevin, a tort attorney representing workers in silicosis cases, framed the congressional debate as a fight over accountability. “When it comes to causation, there’s no question,” he said, arguing that the wave of cases explains why manufacturers are now seeking what he calls “a manufacturer bailout.”

In mid-2025, Caesarstone US introduced its first products containing less than 1% silica. In response to questions, Irene Williams, a spokesperson for Caesarstone, said, “The company is not responding as these are matters of pending litigation.”

The U.S. engineered stone market is dominated by a handful of large brands — including Caesarstone, Spain-based Cosentino, and U.S.-based Cambria — while the volume of slabs imported from Asian manufacturers is growing.

Cosentino, too, is moving to low-silica products: “One third of the portfolio, including most new collections, contain less than 10% of crystalline silica,” said Kamela Kettles, a Cosentino spokesperson. “Cosentino will not be providing additional commentary at this time,” she said.

Commenting on behalf of Cambria, Mark Duffy, a communications consultant for the company, wrote, “Reckless employers are criminally violating the law, exposing workers to deadly working conditions.” He added that engineering and administrative controls, when properly used, are effective in reducing exposures below OSHA limits and said Cambria maintains exposures below the OSHA Action Level in its own facilities.

While Caesarstone and Cosentino are headquartered overseas, Cambria is based in Minnesota. Its chief executive, Marty Davis, has been a major Republican political donor, contributing millions of dollars to President Donald Trump’s election campaigns as well as to other Republican candidates and political action committees, according to federal campaign finance records. Davis has also contributed to the campaign of Rep. Brad Finstad (R-Minn.), a co-sponsor of the legislation. Finstad’s office did not respond to a request for comment.

Nevin, the attorney, said the bill would give manufacturers “free rein” from civil liability.

He also questions whether regulatory enforcement alone can address the problem. Even before the Trump administration’s funding and staffing cuts, “you had a better chance of being struck by lightning than being visited by OSHA,” he said, arguing that inspections are too infrequent to prevent disease in an industry composed largely of small shops.

Breathing on Borrowed Time

For González, the debate arrives after the fact. The dust he inhaled has already reshaped his life.

And Reyes’ transplanted lungs may last years, but not decades. The median survival time for transplanted lungs is about eight years, UCSF’s Gandhi said.

Reyes said he hopes people shopping for countertops understand that buying artificial stone “will harm the worker. The one who cuts it, the one who manufactures it.”

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

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Western Massachusetts, a patchwork of rural communities and low-income cities, is a difficult place to find a primary care doctor if you don’t already have one. Frustrated patients often turn to online forums, asking for leads or advice on how to find a practice that is accepting new patients.

One name repeatedly crops up in these discussions: Valley Medical Group.

With four locations in the Connecticut River Valley, the practice has been a mainstay of family medicine since the 1990s. Valley Medical’s flagship office in Florence can be found right on Main Street, next door to a pizza restaurant and near a Friendly’s.

Valley has 90 medical providers — including doctors, nurse practitioners, and physician assistants — and on-site labs, X-rays, and vision care. With tens of thousands of patients, it’s become one of the largest independent practices in western Massachusetts.

It forms a key part of the region’s health care infrastructure, yet Valley Medical has rarely been under more strain than it is now. In January, the practice laid off 40 employees — 10% of its 400-person staff — mostly in support positions.

Despite patient demand — there are waiting lists to be seen — primary care providers take on more clinical responsibilities, and for less pay, than most medical specialists, said the group’s CEO, primary care physician Paul Carlan. Rates are outlined in the group’s contracts with insurance providers.

“It has to do with the fact that our contracts don’t pay as well as we think they should,” Carlan said. “The cost of everything is going up.”

Valley Medical Group is far from alone in this predicament. Thousands of primary care practices, a key gateway to the medical system, are fighting to remain financially viable — and independent.

In response, many are banding together to form Independent Physician Associations, or IPAs. The goal is to increase their market power, change the way they get paid, and retain control over how they treat patients.

Threats to Physician Autonomy

Primary care practices in the U.S. are in serious trouble, according to workforce surveys. The American Association of Medical Colleges estimates a deficit of up to 86,000 primary care doctors by 2036, as more primary care doctors retire and fewer enter the field.

The number of people who can’t find a primary care doctor has grown by 20% in the past decade, according to a recent JAMA Internal Medicine report.

Lower relative salaries and higher professional stress are disincentives when medical students consider a career in primary care. Newly minted doctors can earn more in specialties such as cardiology or surgery.

Financial stresses in U.S. health care, exacerbated by the covid pandemic, have led to the closure of many primary care practices, according to the AAMC.

The Massachusetts Health Policy Commission released a report in 2025 partly blaming the crisis on the relatively low insurance reimbursement rates for primary care. The revenue problem for primary care is projected to get worse when the Republican-backed cuts to Medicaid start to take effect later this year.

As they seek financial security, many primary care practices have merged with large hospital systems, with doctors becoming employees of those systems.

But the doctors at Valley Medical Group were determined to avoid that fate. Joining a health system takes away the autonomy doctors need to make the best clinical decisions for their patients, Carlan said. It also siphons off income into the larger hospital system.

“Our priorities get muddled up,” he said. “And I think when you’re part of a health system, you’re constantly being asked to bend for the needs of the organization. Hospitals get paid when their beds are full.”

By contrast, primary care providers need time and money to manage or prevent illness, Carlan said, and their insurance reimbursement rates should take that into account.

In December, Valley Medical Group announced it would be joining an Independent Physician Association. Like a union, an IPA combines individual primary care offices, giving them power in numbers when negotiating contracts with Medicaid, Medicare, and private insurance companies.

“It’s a moment of transition,” said Lisa Bielamowicz, chief clinical officer of TrustWorks Collective, an independent health care consultancy that works with health systems and physician groups.

IPAs are gaining momentum as older doctors retire, especially following the challenging years of the covid pandemic, Bielamowicz said. “As the baby boomers move out and younger physicians take leadership roles, these kinds of models become more attractive.”

The American Academy of Family Physicians, a trade group, is hearing from practice owners who joined hospital systems but now want to break off and return to being a smaller practice.

“So if independent IPAs can create the infrastructure support to make independent practice viable, then that’s a good thing,” said Karen Johnson, a vice president at AAFP.

IPAs can bring more clout to the table when negotiating rates with insurance companies. Some insurers say they like working with these partnerships because they help stabilize primary care practices, maintaining access and options for insured patients.

Otherwise, some doctors shift their business model to “direct primary care,” which bypasses insurance altogether.

“We’re looking at independent practices that aren’t buoyed by …. these large health systems and can support members in the community in the ways that they want to be supported,” said Lisa Glenn, a vice president with Blue Cross Blue Shield of Massachusetts.

A Different Payment Model

When those independent practices band together, Glenn said, Blue Cross can offer “value-based” contracts. Instead of getting a payment for each visit or procedure, the medical practice is given a budgeted amount for each patient’s care, which provides an incentive to keep them healthy so they need fewer treatments.

Medical providers “make different kinds of choices than they would if they’re paid for every procedure, every visit, every widget,” TrustWorks’ Bielamowicz said.

If there is money left at the end of the year, it’s split between the practice and the insurer.

The catch, Glenn said, is that a value-based contract works only if there’s a big enough pool of patients to spread out the risk, in case a few get really sick. Otherwise, she said, “the risk of ending up above or below the budget becomes somewhat subject to random variation rather than performance.”

Value-based contracts were supposed to be the next big thing when the Affordable Care Act passed in 2010, an innovative way to bring costs down for the health system as a whole.

But they were slow to catch on; the traditional fee-for-service payment model was too entrenched. Experts say that could still change, if enough primary care providers work together to build market power through IPAs.

“If we keep people out of the ER, keep them out of unnecessary hospitalizations, we save money for the system,” said Chris Kryder, CEO of Arches Medical IPA in Cambridge, Massachusetts, the IPA specializing in value-based contracts that Valley Medical joined. “And we create more income for the PCPs [primary care providers], which is dreadfully needed.”

These contracts also allow more flexibility in staffing, Kryder said, because nurses, physical therapists, and medical assistants can take on some of the less complex medical tasks, saving the practice money.

IPAs Can Help, Depending on Who’s in Charge

But IPAs are not a panacea for primary care’s problems, according to some health care leaders.

There are hundreds of IPAs, but not all offer the independence and autonomy that many doctors crave. Some IPAs are actually owned by hospital systems, or even private equity companies, and they’re less focused on preventive care.

The American Academy of Family Physicians advises its members to seek out IPAs with “integrity,” ones that give doctors a strong role in decision-making.

“Who’s calling the shots, who’s making the decisions, and is it really focused on the best interests and long-term benefit of physicians in practice and their patients?” asked AAFP’s Johnson.

Arches Medical is owned entirely by physicians and focused specifically on primary care, Kryder said. But to be more effective, Arches needs to recruit more practices that want value-based contracts.

That can be a hard sell, said Glenn, of Blue Cross. Under that payment model, doctors might see a lag of more than a year from the time they provide care to the moment they realize savings.

“It doesn’t happen overnight, and it does take an investment,” she said.

That lag is one reason Valley Medical Group had to lay off staff after joining the Arches IPA, said CEO Carlan. But he has faith that, after some time, the practice will become more financially stable, be able to offer higher salaries, and, most important, keep the doctors in charge.

This article is from a partnership with New England Public Media and NPR.

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

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This story can be republished for free (details).



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