The event, titled “The 3 Big C’s: Courage, Censorship & Cancer,” was sponsored by the We the People Health and Wellness Center, a clinic, funded by a Jan. 6 marcher, where patients can bask in red light, sit in ozone-infused steam baths, or get their children treated for autism with an experimental blood concentrate.

In Venice, in Sarasota County, a “medical freedom” movement forged in opposition to covid lockdowns blends wellness advocates, vaccine-haters, right-wing Republicans, and angry parents in a stew of anti-government absolutism and mystical belief.

Ladapo’s wife, Brianna, a self-proclaimed “spiritual healer” who says she speaks with angels and has prophetic visions, chaired a panel at the event at the Venice Community Center. The keynote speech was by William Makis, a litigious covid conspiracist who, after losing his medical license in 2019, has made a living treating cancer patients with antiparasitic drugs including ivermectin, which was also championed in some circles as a covid treatment during the pandemic.

Clinical trials showed that ivermectin didn’t work, but covid skeptics viewed medicine’s rejection of it as part of a conspiracy by Big Pharma against a cheap, off-patent drug. Some of the patients in his care have what he calls “turbo cancers,” Makis says, blaming alleged impurities in mRNA vaccines that he says have killed millions of people.

For Makis, it’s all one big conspiracy — the virus, the vaccine, and the suppression of his therapies.

Brianna Ladapo has her own take on medicine, based on the idea of good and bad spiritual energy. She wrote in a memoir that as the pandemic began she intuited that it had been planned by “sinister forces” to “frighten the masses to surrender their sovereignty to a small group of tyrannical elites.” She has written that the government hides vaccination’s risks.

She sees “dark forces” all over the place, including, she said in a podcast interview earlier this year, in “chemtrails” shaped like a pentagram. “They’ve been plastering it in the sky right outside our house for the last few weeks,” Ladapo said. The chemtrails “they are dumping on us,” she said, had sickened her and her three sons. “The dark side are no fans of ours.”

(“Chemtrails” are a favorite topic of conspiracy theorists who say they think that contrails, the condensation formed around commercial airplane exhaust, contain toxic substances poisoning people and the terrain. Although there is zero evidence of that, Health and Human Services Secretary Robert F. Kennedy Jr. plans to look into whether they are part of a clandestine effort to use toxic chemicals to change the weather.)

Ladapo’s husband hasn’t publicly endorsed all her beliefs, but as surgeon general he’s reversing decades of accepted public health practice in Florida and embracing untested therapies. “We’re done with fear,” Joseph Ladapo said after being named surgeon general in 2021. He wants to ban mRNA vaccines in Florida, and on Sept. 3 he announced plans to end childhood vaccination mandates in the state.

A few days after the Venice event, Ladapo said he hoped to support Makis’ work — though his treatments are unproven and potentially dangerous — through a new $60 million cancer research fund created by Florida Gov. Ron DeSantis and his wife, Casey.

Vic Mellor, CEO of a local concrete business, founded and owns We the People. He’s an associate of retired Army Lt. Gen. Michael Flynn, who was briefly President Donald Trump’s national security adviser in 2017 before being dismissed for lying to the FBI about his contacts with Russians. Trump later pardoned him, and Flynn since has become a leader of the Christian nationalist movement.

We the People provides vitamin shots but no vaccines. In fact, many of its offerings are treatments for supposed vaccine injuries. Part of the We the People building is a broadcasting studio, where conservatives hold forth on what they see as the villainy of liberals and the American Academy of Pediatrics.

Mellor was at the U.S. Capitol during the riot on Jan. 6, 2021 — he said he “just knocked on front doors,” according to a Facebook post described by The Washington Post. He returned home and started building a 10-acre complex that hosts weddings and right-wing assemblies, with playgrounds, a butterfly garden, a zip line over a pond visited by alligators, and an attached, separately owned gun range.

Visitors who travel down a dirt road to The Hollow — named for the hollow-core concrete that made Mellor wealthy — can enter the compound through a dark, cavernous passage lined with neon signs illuminating maxims from the likes of Thomas Jefferson, Thomas Paine, and Flynn.

The Hollow has hosted clinics for unvaccinated kids and events for Ladapo, anti-vaccine activist Sherri Tenpenny (who in 2021 told legislators at an Ohio House hearing that covid vaccine made people magnetic), and other “medical freedom” advocates. Mellor created a medical home for such ideas by opening We the People in 2023.

The year before, three “medical freedom” candidates had won seats on the board overseeing Sarasota’s public hospital and health care system, after protests over the hospital’s refusal to treat covid patients with ivermectin and other drugs of choice for covid contrarians.

On a recent afternoon at The Hollow, manager Dan Welch was clearing brush when approached by KFF Health News. As a foe of vaccinations, he welcomed Ladapo’s move to end vaccine mandates. “Maybe in their inception, vaccines were created to prevent what they were supposed to prevent,” Welch said. “But now there’s so much more in there, the metals, aluminum, mercury. Since they started vaccination, the autism rate went through the roof, and I believe these vaccines are part of it.”

The theory that vaccines cause autism has been debunked, and manufacturers removed mercury from childhood vaccines 24 years ago, although Welch said he doesn’t believe it.

Vaccination faces additional challenges in a century-old Sarasota County neighborhood of low-slung bungalows called Pinecraft, home to about 3,000 Mennonites — and double that number when Amish snowbirds arrive in the winter. Pastor Timothy Miller said that while Sarasota’s Mennonites are less culturally isolated than the Mennonite community in West Texas, site of a measles outbreak in January, many in his community also shun vaccination.

His cousin Kristi Miller, 26, won’t vaccinate her 9-month-old daughter or any of the other children she hopes to have, she said, because she thinks vaccines probably cause autism and other harms.

As for vaccine-preventable diseases like measles, she doesn’t worry about them. Like the Ladapos, “I don’t live in fear,” she said. “I have a God who’s bigger than everything.”

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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Con el apoyo del gobernador republicano Ron DeSantis, Joseph Ladapo, cirujano general del estado, anunció el 3 de septiembre su intención de eliminar todos los requisitos de vacunación para niños en edad escolar.

“Cada una de esas normas está equivocada y destila desprecio y esclavitud”, dijo ante una multitud de personas contrarias a las vacunas en Tallahassee. “¿Quién soy yo, como gobierno o como individuo, para decirte qué debes poner en tu cuerpo?”, agregó.

La historia demuestra que los mandatos aumentan el uso de vacunas.

Sin embargo, si las tasas de vacunación bajan, aumentan los casos de enfermedades como sarampión, hepatitis, meningitis y neumonía —e incluso podrían regresar enfermedades como la difteria y la poliomielitis—.

Muchas de estas enfermedades son una amenaza no solo para quienes no están vacunados, sino también para quienes los rodean, incluidos bebés y personas mayores con sistemas inmunes debilitados.

Pero ese hecho científico ha sido ignorado en Florida. Las autoridades de salud se han mantenido en silencio frente a la campaña de Ladapo —y no porque estén de acuerdo—. La Universidad de Florida ha silenciado a especialistas en enfermedades infecciosas, según el profesor emérito Doug Barrett, ex jefe de pediatría y vicepresidente senior de asuntos de salud de esa universidad.

“Les dicen que no hablen con nadie sin permiso de sus supervisores”, aseguró. Voceros de la universidad no respondieron a solicitudes de comentarios.

Lo mismo ocurre con los funcionarios de los departamentos de salud de los condados, según John Sinnott, profesor jubilado de la Universidad del Sur de Florida, quien tiene amistad con uno de esos líderes locales.

El departamento de salud del condado de Sarasota remitió a un reportero a las autoridades estatales en Tallahassee, quienes respondieron con una declaración señalando que las vacunas “seguirán estando disponibles” para las familias que las quieran. El estado no respondió a otras solicitudes de entrevista con Ladapo ni a otras preguntas.

Muchos pediatras también guardan silencio, al menos públicamente.

“Muchos no se pronuncian con claridad sobre si los niños deben vacunarse”, dijo Neil Manimala, urólogo y presidente electo de la Asociación Médica del Condado de Hillsborough. “No quieren perder pacientes. Y hay suficientes personas antivacunas como para destrozarte con reseñas en Google, contando que los médicos quieren ‘inyectar veneno’”.

Historia de los mandatos en la vacunación moderna

Varios estados eliminaron mandatos de vacunación a principios del siglo pasado, cuando la viruela era la única vacuna ampliamente utilizada, según el historiador Robert Johnston, de la Universidad de Illinois-Chicago.

Ningún estado lo ha hecho desde que se sumaron otras vacunas al calendario. (La vacunación rutinaria contra la viruela terminó en 1972).

En los años 70, brotes persistentes de sarampión llevaron a que las autoridades reforzaran la protección infantil con mandatos escolares obligatorios en todos los estados. Hoy, la polarización política sobre las vacunas luego de la pandemia de covid ha cambiado el panorama.

Y esto se nota especialmente en Florida, aunque legisladores en Texas y Louisiana también están considerando eliminar requisitos de vacunación, y en Idaho basta con que los padres soliciten una exención.

“Este es un momento decisivo para muchas familias que ya tenían dudas sobre vacunar a sus hijos y que ahora reciben el mensaje de que no es necesario”, dijo Jennifer Takagishi, vicepresidenta de la filial de Florida de la Academia Americana de Pediatría.

No está claro qué tan rápido podrían volver las enfermedades prevenibles por vacunas si Florida elimina los mandatos, ni cómo respondería la población.

Consultado en una entrevista sobre si su oficina había diseñado posibles escenarios epidemiológicos antes del anuncio de septiembre, Ladapo respondió: “Absolutamente no”. Según el cirujano general, la libertad parental no es un asunto científico, sino de “lo que está bien o mal”.

Un mes después, el Departamento de Salud de Florida no respondió a preguntas sobre si estaba elaborando planes de contingencia ante posibles brotes. Durante un brote de sarampión en el condado de Broward en 2024, Ladapo envió a los padres una carta autorizando que los niños no vacunados asistieran a la escuela, desafiando las recomendaciones basadas en evidencia de los Centros para el Control y la Prevención de Enfermedades (CDC).

En 1977, un brote de sarampión que mató a dos niños en el condado de Los Ángeles provocó una fuerte reacción nacional contra quienes rechazaban las vacunas.

Pero durante una epidemia reciente que causó la muerte de dos menores en Texas y 14 personas en México, el gobernador republicano de Texas, Greg Abbott, firmó una ley que facilita a los padres el proceso para evitar vacunas obligatorias.

“¿Cuántas muertes o enfermedades graves se necesitarán para que la gente diga: ‘No, sí queremos vacunas’?”, se preguntó Takagishi. “No sabemos cuál será ese punto de quiebre”.

“No tengo la respuesta”, dijo Walter Orenstein, profesor emérito de la Universidad de Emory, quien trabajó en temas de sarampión durante sus 26 años en los CDC y dirigió el programa de inmunización de la agencia entre 1988 y 2004. “En el pasado, los brotes de sarampión generaban la voluntad política para apoyar los programas de vacunación. Esta vez no ha sido así. Es muy triste”.

Los niños en Florida ya están entre los menos vacunados del país, debido a una aplicación laxa de los requisitos, al rechazo de las vacunas tras la pandemia y a la postura libertaria de las autoridades estatales.

En todo el estado, solo alrededor del 89% de los niños de jardín de infantes están completamente vacunados, y el condado de Sarasota tiene la tasa más baja, con alrededor del 80%. Para evitar la propagación del sarampión, una comunidad debe tener al menos el 95% de inmunización.

Con el secretario de Salud y Servicios Humanos Robert F. Kennedy Jr. recortando fondos para la investigación de vacunas, incorporando activistas antivacunas a la agencia y generando desconfianza sobre la seguridad y utilidad de las vacunas, poco se interpone en las decisiones que podrían hacer que las tasas de vacunación en Florida bajen aún más.

El Departamento de Salud liderado por Ladapo ya está eliminando los requisitos de vacunas contra la hepatitis B, la varicela y las bacterias que causan meningitis y neumonía.

A comienzos del próximo año, se espera que la Legislatura de Florida analice la revocación de una ley de 1977 que exige que los niños en escuelas y guarderías estén vacunados contra otras siete enfermedades infantiles potencialmente mortales: tos ferina, sarampión, poliomielitis, rubéola, paperas, difteria y tétanos.

Después del sarampión, ¿qué enfermedad volverá?

Ante estos ataques, la comunidad científica intenta prever qué enfermedades podrían reaparecer primero y cuándo.

Un estudio publicado en abril por el epidemiólogo Mathew Kiang, de la Universidad de Stanford, estimó que, incluso con los niveles actuales de vacunación, el sarampión —declarado eliminado en Estados Unidos en el año 2000— podría volver a convertirse en una enfermedad habitual. Si la cobertura contra el sarampión cae un 10% más, podrían registrarse alrededor de 450.000 casos anuales, con cientos de muertes y lesiones cerebrales.

Pero ese estudio podría exagerar la amenaza, señaló Shaun Truelove, experto en modelado de enfermedades epidémicas en la Universidad Johns Hopkins, quien expresó preocupación por perder la confianza pública con predicciones alarmistas.

Aun así, advirtió que los brotes de sarampión seguramente se intensificarán. El país ya enfrenta su peor año en tres décadas, con más de 1.500 casos y brotes activos en Carolina del Sur y Minnesota.

“No hace falta modelar el sarampión si se dejan de aplicar las vacunas”, dijo Truelove. “En los lugares donde haya brotes, cada niño no vacunado se va a contagiar”.

El sarampión es “el canario en la mina” de otras enfermedades prevenibles, afirmó Sal Anzalone, pediatra de Healthcare Network en Naples, Florida. “Cuando empieza a aparecer el sarampión, hay otras enfermedades que están por venir”.

Ladapo ha dicho que quienes quieran vacunarse podrán seguir haciéndolo, incluso sin mandatos.

Pero el mensaje del estado confunde a las familias, especialmente a las de bajos recursos o desatendidas, según Anzalone. Para muchas de ellas es difícil llevar a sus hijos a citas médicas si no es obligatorio, explicó. En su consulta, el 80% de los pacientes tiene cobertura de Medicaid. Si las políticas trasladan más costos a los padres, menos niños serán vacunados, agregó.

Y si bajan las tasas de vacunación y aumentan las infecciones, los niños no serán los únicos afectados. Personas con cáncer y adultos mayores —muy numerosos en Florida— también estarían en riesgo.

Las escuelas y empresas podrían enfrentar interrupciones. La industria turística, que atrajo a 143 millones de visitantes el año pasado, también podría verse afectada. (La Cámara de Comercio de Florida no respondió a solicitudes de comentarios).

“Las enfermedades infecciosas no se detienen en quienes dicen estar dispuestos a asumir el riesgo”, dijo Meagan Fitzpatrick, experta en vacunas de la Universidad de Maryland. Por su capacidad de propagación, explicó: “en el caso de una enfermedad contagiosa, la vacunación nunca es solo una decisión individual”.

Los profesionales de salud temen que el fin de los mandatos permita el regreso de la hepatitis B, una enfermedad hepática crónica, ya que se estima que 2 millones de personas en el país portan el virus.

También podrían volver los días en que los bebés con fiebre alta debían someterse a punciones lumbares dolorosas y análisis de sangre para descartar meningitis o infecciones bacterianas que las vacunas han evitado desde la década de los 90.

Barbara Loe Fisher, co fundadora del movimiento moderno contra los mandatos de vacunación a inicios de los años 80, después de que su hijo sufriera una reacción adversa a una vacuna contra la tos ferina (que desde entonces fue reemplazada por una más segura), duda que los floridanos dejen de vacunarse en masa, pese al fin de los requisitos.

Fisher, presidenta del National Vaccine Information Center, se mudó de Virginia al suroeste de Florida en 2020. Cree que las lesiones por vacunas están subregistradas y que se vacuna a niños sin consentimiento informado. Admitió que los mandatos aumentan la cobertura, pero opinó que su eliminación fortalecerá la confianza en la salud pública y en la medicina.

“Es hora de que productos biológicos como las vacunas estén sujetos a la ley de oferta y demanda”, dijo, “igual que cualquier otro producto del mercado”.

Por su parte, Sinnott anticipa el regreso del sarampión, acompañado de brotes más intensos de tos ferina, gripe y covid.

“Ellos creen que no pasará nada. Tal vez tengan razón”, dijo Sinnott, el profesor jubilado. “Es un experimento”.

La poliomielitis también podría volver. Y para Sinnott, de 77 años, eso no es una teoría.

Tenía 7 años cuando contrajo la enfermedad y pasó seis meses en silla de ruedas. En los últimos años ha sufrido el síndrome pospoliomielítico: dificultad para tragar, rigidez y dolor en las extremidades.

La primera vacuna contra la polio se autorizó en 1955, el año en que se enfermó. “Recuerdo una vez que mi madre me dijo: ‘La fila era demasiado larga’”, contó.

Sinnott perdona a sus padres, y también a los padres actuales que dudan sobre vacunar a sus hijos. Es menos tolerante con ciertos líderes de salud pública. “Ellos sí deberían saberlo”, dijo.

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With the support of Republican Gov. Ron DeSantis, Surgeon General Joseph Ladapo on Sept. 3 announced his plan to end all school-age vaccination mandates in the state.

“Every last one of them is wrong and drips with disdain and slavery,” he told a cheering crowd of vaccination foes in Tallahassee. “Who am I, as a government or anyone else,” he said, “to tell you what you should put in your body?”

History shows that mandates increase the use of vaccines. Lower vaccination rates will mean increased rates of diseases like measles, hepatitis, meningitis, and pneumonia — and even the return of diphtheria and polio. Many of these diseases threaten not just the unvaccinated but also those they come in contact with, including babies and older people with weakened immunity.

But that scientific fact is being left unsaid in Florida. Health officials have largely been silent in the face of Ladapo’s campaign — and not because they agree with him. The University of Florida muzzled infectious disease experts, said emeritus professor Doug Barrett, formerly the university’s chief of pediatrics and senior vice president for health affairs.

“They’re told not to speak to anyone without permission from supervisors,” he said. University spokespeople didn’t respond to requests for comment.

County-level Department of Health officials across the state got the same message, said John Sinnott, a retired professor at the University of South Florida who is friends with one of the county health leaders.

Sarasota County’s health department referred a reporter to state officials in Tallahassee, who responded with a statement that vaccines will “remain available” to families who want them. The state did not respond to other requests for comment or for an interview with Ladapo.

Many pediatricians are silent, too, at least in public.

“A lot of them don’t take a strong stance on whether kids need to be vaccinated,” said Neil Manimala, a urologist and the president-elect of the Hillsborough County Medical Association. “They don’t want to lose business. And there are enough anti-vax people who can lambaste you on Google, spreading stories about clinicians who ‘want to instill the poison jabs.’”

History of Modern Vaccine Mandates

Several states ended vaccination mandates early last century when smallpox was the only widely given vaccine, said historian Robert Johnston of the University of Illinois-Chicago. None has done so since other vaccines were added to the schedule. (Routine smallpox vaccination ended in 1972).

In the 1970s, persistent measles outbreaks provoked officials to strengthen child protection with enforced school mandates in every state. Today the partisan split on vaccine policy in the wake of the covid outbreak has changed the equation. This is nowhere more the case than in Florida, although legislators in Texas and Louisiana are also considering ending mandatory vaccination, and Idaho enables parents to get an exemption just by asking for it.

“This is really going to be a watershed moment for families who already were not sure they want to do vaccines and now are being told they don’t need them,” said Jennifer Takagishi, vice president of the Florida branch of the American Academy of Pediatrics.

It’s hard to know how fast vaccine-preventable diseases might return if Florida ends its mandates — or how the public will respond. Asked in an interview whether his office had modeled disease outcomes before his September announcement, Ladapo said “Absolutely not.” Parental freedom of choice isn’t a scientific matter, he said. “It’s an issue of right and wrong.”

Ladapo’s Department of Health did not respond a month later when asked whether it was making contingency plans for outbreaks. During a 2024 measles outbreak in Broward County, Ladapo sent parents a letter granting them permission to send unvaccinated children to school, defying the science-supported advice from the federal Centers for Disease Control and Prevention.

In 1977, a measles epidemic that killed two children in Los Angeles County spurred a dramatic crackdown on vaccine-shunning across the country. But during an epidemic this year that killed two Texas children and 14 people in Mexico, Republican Gov. Greg Abbott of Texas signed a bill making it easier for parents to opt out of getting required shots.

“When are we going to have enough of a groundswell of people dying or becoming severely ill that leads people to push back and say, ‘No, no, we want the vaccines?’” Takagishi said. “I don’t know if we know the tipping point yet.”

“I don’t have the answer,” said Emory University emeritus professor Walter Orenstein, who worked on measles for many of his 26 years at the CDC and led the agency’s immunization program from 1988 to 2004. “Measles resurgences created the political will to support our overall immunization program. For some reason it hasn’t worked this time. It’s just sad.”

Youngsters in Florida are already among the least vaccinated in the nation, because of relatively lax enforcement, the post-covid backlash against shots, and the libertarian attitude of state officials. Statewide, only about 89% of kindergartners are fully vaccinated, with Sarasota County having the lowest rate, at about 80%. To be safe from the spread of measles, a community must be 95% immunized.

With Health and Human Services Secretary Robert F. Kennedy Jr. cutting vaccine research, filling the health agency with anti-vaccine activists and spreading doubt about vaccination’s safety and value, little stands in the way of decisions by Florida officials that are likely to cause rates to sink further.

Ladapo’s department is ending mandates for shots against hepatitis B, chickenpox, and the bacteria causing meningitis and pneumonia. Early next year, the Florida Legislature is expected to take up reversal of a 1977 law requiring kids at school and day care to be vaccinated against seven other diseases that can kill children: whooping cough, measles, polio, rubella, mumps, diphtheria, and tetanus.

After Measles, Which Disease Returns Next?

In the face of these attacks, scientists are attempting to predict which diseases are likely to make a resurgence and when.

A study published in April by Stanford epidemiologist Mathew Kiang and colleagues estimated that even at current vaccination levels, measles, declared eliminated from the United States in 2000, is likely to become a routine illness again. If measles vaccination rates drop by an additional 10%, there could be an average of about 450,000 cases yearly, with hundreds of deaths and cases of brain damage.

But the study may exaggerate the threat, said Shaun Truelove, an epidemic disease modeler at Johns Hopkins University who said he’s worried about losing public trust with alarmist predictions. Still, he said, an intensification of measles outbreaks seems certain. The country is already in the midst of its worst measles year in three decades, with more than 1,500 cases and current outbreaks in South Carolina and Minnesota.

“You don’t really need to model measles if vaccines stop,” Truelove said. “In the pockets where there are outbreaks, every kid who isn’t vaccinated will get infected.”

Measles is the “canary in the coal mine” for other vaccine-preventable diseases, said Sal Anzalone, a pediatrician with Healthcare Network in Naples, Florida. “When you start seeing measles, there’s more to come behind that.”

People who want vaccinations will still be able to get them if mandates are eliminated, Ladapo has said.

But the state’s message confuses parents, especially the poor and underserved, Anzalone said. It’s typically hard for them to get children to appointments unless they have to, he said, noting that 80% of his patients are insured through Medicaid. If policies put more of the payment burden on parents, fewer will vaccinate, he said.

And if vaccinations fall and infections increase, children won’t be the only people affected. Cancer patients and people in Florida’s numerous elderly communities would be at risk. Schools and businesses would be disrupted. Disease could disrupt the tourism industry, which brought 143 million people to the state last year. (The Florida Chamber of Commerce did not respond to requests for comment.)

“Infectious diseases don’t stop with the people who say they are willing to bear the risk,” said Meagan Fitzpatrick, a University of Maryland vaccinologist. Because of their unpredictable spread, she said, “with an infectious disease, vaccination is never an individual choice.”

Clinicians fear that an end to mandates could allow hepatitis B, a chronic liver disease, to return with force, since an estimated 2 million Americans carry the virus. They also foresee a return to the days when infants with high fever had to undergo a painful and risky lumbar puncture and blood draw to rule out meningitis, as well as a blood infection caused by the bacteria Haemophilus influenzae type B that routine vaccination has prevented since the 1990s.

Barbara Loe Fisher, who co-founded the modern movement against vaccine mandates in the early 1980s after her son suffered a reaction to the pertussis vaccine then in use (and since replaced with a safer shot), is skeptical that Floridians will abandon vaccination en masse, despite the end to mandates.

Fisher, president of the National Vaccine Information Center, moved from Virginia to southwestern Florida in 2020. She said she believes that vaccine injuries are undercounted and that children are vaccinated without informed consent. She acknowledged that mandates have increased coverage but said their removal will increase trust in public health and medicine.

“It is time to allow biological products like vaccines to be subject to the law of supply and demand,” she said, “just like any other product sold in the marketplace.”

Sinnott, for his part, anticipates measles will come roaring back, along with intensified whooping cough, influenza, and covid outbreaks.

“They think nothing will happen. Maybe they’re right,” said Sinnott, the retired professor. “It’s an experiment.”

Polio could return, and that is not an abstraction for Sinnott, 77.

He was 7 years old when he contracted the disease, spending six months in a wheelchair. In recent years he’s suffered from post-polio syndrome — difficulty swallowing, and tightness and pain in his limbs.

The first polio vaccine was licensed in 1955, the year he got sick. “I remember one time my mother telling me, ‘The line was too long,’” he said.

Sinnott forgives his parents, and parents today who waver on vaccination. He’s less tolerant of certain public health leaders. They should know better, he said.

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But while the result seemed foretold, the debate was far from unanimous.

The Advisory Committee on Immunization Practices, or ACIP, met at a satellite campus of the Centers for Disease Control and Prevention because the agency’s headquarters were still smashed up from a deadly gun attack last month by a man who said the covid vaccine had made him depressed and suicidal.

Health and Human Services Secretary Robert F. Kennedy Jr. has made it clear he wants the panel to change the CDC’s childhood immunization schedule, which establishes, sometimes with legal authority, which vaccines are to be mandated, paid for, and administered by states, insurers, and doctors across the country.

Kennedy fired the 17-member panel in June and has so far restocked it with 12 people, including outspoken critics of vaccination. On Sept. 18, the new panel’s discussions reflected its thin expertise and ignorance of how the vaccination schedule came to be. Scientific questions answered decades ago were asked as if they were brand-new.

“We are rookies,” said biostatistician Martin Kulldorff, the committee’s chair, noting many “technical issues that we might not grasp as of yet.”

Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia, watched the telecast anxiously.

“It reminds me when as children we would have a mock United Nations meeting,” he said. “This would be like that, except we would have actually made decisions for the United Nations.”

Kennedy’s CDC accomplished what 30 years of public health attempts to fight anti-vaccine sentiment hadn’t: a head-to-head comparison of evidence and arguments. But while the winner was clear in the eyes of most experts, some doubted the result would be good.

“The whole purpose of the people on this committee is to circulate these old recycled anti-vax talking points,” said Sean O’Leary, a professor of pediatrics at the University of Colorado who previously was a liaison from the American Academy of Pediatrics to ACIP. On Friday morning, he said, a colleague had a mother in his practice who refused the measles, mumps, and rubella vaccine “because she heard something bad in the news about it last night.”

Until now, public health owned places like ACIP, while vaccine foes and skeptics dominated social media. At this meeting, the skeptics had moved onto public health’s turf — where sometimes flimsy arguments and expertise were exposed.

Pharmacist Hillary Blackburn, for example, asked why children needed two measles, mumps, and rubella shots. ACIP began recommending a second shot in 1989 during a deadly measles outbreak. The two-shot regimen provided more than 95% immunity and led to the virtual elimination of measles from the United States. This year under the Trump administration more than 1,400 cases have been reported, mostly in unvaccinated people.

In one noteworthy gaffe, ACIP member Retsef Levi, a Massachusetts Institute of Technology operations management professor, misinterpreted data from a graph showing declines in hepatitis B in the United States since the 1980s. While rates had fallen in older groups, Levi said, cases in babies hadn’t declined substantially since 2005, when he inaccurately said a birth dose was first recommended.

“Where’s the argument to vaccinate even younger children at all,” he said. “Where is the benefit?”

In fact, the recommendation for a newborn shot began in 1991 and was reinforced and expanded in 2005. The first generation of hepatitis B-vaccinated babies are well into their 30s now.

“As time goes on,” CDC scientist Adam Langer patiently explained, “the people who benefited from the change in policy at the very beginning of the policy are moving into different age groups.”

Kulldorff, Levi, and committee member Evelyn Griffin, a gynecologist, also suggested that vaccines shouldn’t be recommended unless they are tested in placebo trials, which would require certain children not to be vaccinated — a practice considered unethical.

Kulldorff began the meeting defiantly. He did not mention the CDC shooting, but disparaged former agency officials Kennedy had forced out and challenged nine former CDC directors to a debate.

He also asked if anyone in the audience would eat a hot dog laced with thimerosal, the mercury-containing preservative the committee banned from influenza vaccines at its last meeting. (No one has ever offered thimerosal as a condiment, but years of study showed the minuscule amounts in vaccines did no harm).

At the June meeting, HHS censored a CDC appraisal of thimerosal while inviting an anti-vaccine activist to present an error-filled criticism of the substance. But on Sept. 18 the panel got what looked like straight science from CDC professionals.

As the committee prepared to debate ending a 34-year-old ACIP recommendation for babies to get a dose of the hepatitis B vaccine at birth, CDC career scientists Langer and John Su presented evidence of the vaccine’s safety and benefits.

Langer also laid out the history of the fight against hepatitis B — including the failed effort to control the disease by vaccinating people most at risk, including people who use drugs, sex workers, and pregnant women who tested positive for the virus. Years of trial and error showed that in the U.S., at least, it was necessary to vaccinate newborns to really knock down the disease.

Levi, who frequently mentions the vaccination status of his own six children, challenged the idea that a healthy baby from a “normal” household — one with no history of drug use or prostitution — needed the vaccine.

Cody Meissner, one of three panel members who put up a spirited defense of the status quo in the hepatitis debate, noted that when it comes to vaccination campaigns, “the more we try and define a target group to vaccinate, the less successful we are.” Meissner, a Dartmouth College professor, has published studies of vaccines and the diseases they fight since the 1970s.

Long-observed tropes of vaccine skepticism were abundant on the first day of the meeting. Levi praised a 2004 study from Guinea-Bissau, an outlier that suggested that babies, especially females, were more likely to die if they got a hepatitis B shot. Other panelists said the study, performed in a poor country with high infant mortality where children got an outdated vaccine, wasn’t relevant. But more studies were needed in general, Levi said. “We sit here with very lousy evidence,” he said.

Nurse Vicky Pebsworth of the National Vaccine Information Center, which opposes all vaccine mandates, frequently brought her own selective research into the meeting. She read off the names of studies other panelists hadn’t received to back her arguments that vaccines under discussion were not safe.

But while “too many, too soon” is a common anti-vaccine refrain, Judith Shlay from the National Association of County and City Health Officials, which had a nonvoting chair at the meeting, used it to support the current schedule. She pointed out that the panel’s debate over a combination measles, mumps, rubella, and varicella shot for children would result in a separate shot for the virus that causes chickenpox, adding to the number of inoculations on the childhood schedule.

“Some parents want to have fewer injections,” she said.

With an 8-3 vote at the end of the day, the committee nonetheless recommended separate vaccinations for MMR and chickenpox.

Everyone seemed puzzled about what had transpired with an ensuing vote on whether the Vaccines for Children Program, which pays for more than half of childhood vaccinations, should respond to ACIP’s new recommendation. The panel revoted on the issue on Sept. 19.

Nor could anyone provide a clear answer as to what prompted the committee’s discussion and planned vote on the birth dose of hepatitis B vaccine, since there was no new evidence suggesting any harm from it.

Two of Kennedy’s senior aides, both vaccine skeptics, pushed the hepatitis B discussion onto the ACIP schedule, according to testimony at a Sept. 17 Senate hearing by former CDC chief medical officer Debra Houry, who resigned to protest administration policies.

ACIP member Robert Malone, who has claimed that mRNA vaccines are dangerous, said hepatitis B was on the agenda because it is given to newborns at birth and of special concern to parents newly awakened to vaccine doubt. He appeared to nod off during a CDC staff presentation on the safety of the hepatitis B shot.

Vaccination of babies has always triggered parents. The 19th-century poet Alexander Hope Hume described evil vaccinators who turned “the rosy darling” who “crows with glee” into “a wailing infant” whose every vein “ferments with poison.”

The agenda item was not really about the merit of the hepatitis B vaccine, Malone acknowledged.

“The signal that is prompting this is not one of safety; it’s one of trust,” he said.

But in the end, the committee reconsidered what would have been its first drastic move to reverse a successful U.S. vaccination campaign. It postponed its vote on the hepatitis B birth dose.

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The leadership upheavals, which he says will restore trust in federal health agencies, have shaken the confidence many states have in the CDC and led to the fracturing of a national, cohesive immunization policy that’s endured for three decades.

States and medical societies that long worked in concert with the CDC are breaking with federal recommendations, saying they no longer have faith in them amid the turmoil and Kennedy’s criticism of vaccines. Roughly seven months after Kennedy’s nomination was confirmed, they’re rushing to draft or release their own vaccine recommendations, while new groups are forming to issue immunization guidance and advice.

How the new system will work is still being hammered out. Vaccine recommendations from states, medical societies, and other groups are likely to diverge, creating dueling guidance and requirements. Schoolchildren in New York may still generally need immunizations, for example, while others in places such as Florida may not need many vaccines.

There are potential financial ramifications too, because historically, private insurers, Medicaid, and Medicare have generally covered only vaccines recommended by the federal government. If the CDC and its advisory group, which began a two-day meeting Sept. 18 in Atlanta, stop recommending certain vaccines, hundreds of millions of people could wind up paying for shots that previously cost them nothing. Some states are already taking steps to prevent that from happening, which means where people live could determine if they will face costs.

“You’re seeing a proliferation of recommendations, and the recommendations by everybody are different from the CDC,” said Michael Osterholm, a University of Minnesota epidemiologist who launched an ad hoc group that provides vaccine guidance. “States and medical societies are basing their recommendations on science. The recommendations out of CDC are magic, smoke, and mirrors.”

Kennedy has defended changes at the CDC and the revamping of the vaccine committee as necessary, saying previous advisory panel members had conflicts of interest and agency leadership botched its pandemic response.

The CDC is “the most corrupt agency at HHS, and maybe the government,” Kennedy said at a Sept. 4 Senate committee hearing. Susan Monarez, the ousted CDC director, testified Sept. 17 at another Senate hearing about how Kennedy told her to preapprove vaccine recommendations from the advisory panel or be fired.

Kennedy has said HHS also plans to investigate vaccine injuries he says are not thoroughly tracked or investigated. The CDC investigates injuries that are reported by providers or patients, but Kennedy has said he wants to recast the entire program. The Food and Drug Administration is already looking into cases of children who died following covid-19 vaccination.

HHS didn’t return an email seeking comment.

The actions by states, medical societies, and other groups reflect a mounting lack of confidence in federal leadership, public health leaders say, and the break from the CDC is happening at a rapid clip.

The Democratic governors of California, Hawaii, Oregon, and Washington — fashioning themselves as the West Coast Health Alliance — are coordinating to develop vaccine recommendations that won’t necessarily follow those from the CDC. The governors said in a joint statement that the CDC shake-up has “impaired the agency’s capacity to prepare the nation for respiratory virus season and other public health challenges” and this week issued 2025-26 guidance for vaccination against viruses such as covid, influenza, and respiratory syncytial virus.

A group of northeastern states are exploring a similar collaborative.

“The worst thing that could happen is that we have 50 different recommendations for the covid vaccine. That will destroy public health,” said Massachusetts Public Health Commissioner Robbie Goldstein, who has been involved with the effort. He’s also spoken with leaders of the West Coast alliance. “I’m really hopeful that we do come together in larger and larger collaboratives with the same recommendations or very similar recommendations,” he said while speaking to a group of reporters this month.

And medical societies such as the American Academy of Pediatrics are releasing covid vaccine recommendations that diverge for the first time from the CDC’s guidance.

Some states are seizing on the split to ensure access to shots. Massachusetts is requiring insurers to cover vaccines recommended by the state health department rather than paying only for those suggested by the CDC, making it the first state to guarantee such continued coverage. AHIP, a trade group representing insurers, said on Sept. 16 that health plans will cover immunizations, including updated formulations of covid and flu vaccines, that were recommended by the CDC panel as of Sept. 1 with no cost sharing through the end of 2026.

Pennsylvania is allowing pharmacists to give covid vaccines even if they’re not recommended by the federal agency. Instead, they can follow recommendations from the pediatric academy and other medical groups.

Florida, meanwhile, plans to drop requirements for schoolchildren to get immunizations against chickenpox, meningitis, hepatitis B, and some other diseases. State lawmakers would need to take action to end mandates for all vaccines.

Joseph Ladapo, the state’s surgeon general, said in a Sept. 3 press conference that any vaccine requirement is wrong and “drips with disdain and slavery.”

Some doctors criticize the decision as a dangerous step backward.

“This is a terrifying decision that puts our children’s lives at risk,” said Richard Besser, former acting director of the CDC, in an emailed statement.

The first school vaccine mandate was rolled out in the 1850s in Massachusetts, for smallpox. While all states have vaccine requirements for schoolchildren, immunization rates for kindergarten students declined while cases of vaccine-preventable measles and whooping cough surged in 2024 and 2025.

Rochelle Walensky, the Biden administration’s first CDC director, warned of the “polarization” of state-by-state approaches. “It’s like your head is in the oven and your feet are in the freezer and, on average, we’re at 95% vaccination. That doesn’t work in measles — every place has to be at 95% vaccination.” She was referring to the proportion of a population that needs to be vaccinated to provide herd immunity.

Kennedy’s actions have thrust vaccines center stage and made him fodder for comedy. The Marsh Family, a British musical group, released a parody on Sept. 7 of Paul Simon’s “Me and Julio Down by the Schoolyard,” with the chorus, “We’ll see measles and polio down in the schoolyard.”

HBO comedian Bill Maher said the CDC could be known by the title “Disease” during a recent episode of his show. And Stephen Colbert used his monologue on “The Late Show with Stephen Colbert” to weigh in on the revamped vaccine advisory group, calling its new members the “crème de la cuckoo.”

President Donald Trump has defended Kennedy, telling reporters “he means very well,” even as Trump said on Sept. 5 that “you have some vaccines that are so amazing.” Trump has repeatedly expressed pride in Operation Warp Speed, a government initiative during Trump’s previous administration that rapidly developed covid vaccines. But he’s also promoted a discredited theory linking vaccines and autism.

The White House did not respond to a request for comment.

The Trump administration already narrowed recommendations for the covid vaccine despite no new safety risks with the shots, although medical societies are continuing to recommend them for most people. The gulf is expected to widen as the agency’s advisory group reviews whether to change its guidance on a number of pediatric vaccines.

Other groups are also trying to provide vaccine and public health guidance, driven in part by concerns that Kennedy and other federal health leaders will make policy decisions and statements not grounded in science. Kennedy has promoted claims that aluminum, used in many vaccines, is linked to allergies, despite a lack of evidence for the claims. A Danish study, in fact, found aluminum was not linked to chronic disease, but Kennedy said the study’s supplemental data indicated it caused harm. The journal that published the study defended the findings.

Current and former CDC and HHS staffers, along with public health academics and retired health officials, have formed the National Public Health Coalition, a nonprofit to endorse recommendations and provide guidance on policy issues. They plan to partner with state and local health departments.

“A real benefit of the National Public Health Coalition is we are made up of current and former CDC and HHS folks, people who have deep knowledge of what government programs for public health look like, and what improvements are needed,” said Abigail Tighe, the group’s executive director.

Another new group is Grandparents for Vaccines, which bills itself as a volunteer-led effort to raise awareness about vaccines. And the Vaccine Integrity Project was launched in April by the University of Minnesota’s infectious disease center, to review evidence for medical societies on the safety and effectiveness of vaccines.

“We’re going to continue to help wherever we can to address misinformation,” said Osterholm, the center’s leader.

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As in earlier hearings concerning Robert F. Kennedy’s performance as secretary of the Department of Health and Human Services, the focus was on Sen. Bill Cassidy (R-La.), who cast the deciding vote as HELP Committee chair to confirm Kennedy early this year. Since that vote, Cassidy has repeatedly expressed skepticism about Kennedy’s leadership.

Cassidy noted that when Kennedy swore in Monarez on July 31, he extolled her “unimpeachable scientific credentials.” Less than a month later, she was fired. “What happened?” Cassidy said. “Turmoil at the top of the nation’s top public health agency is not good for the health of the American people.”

Monarez said she came into the job aligned with Kennedy’s goals of improving America’s health and was open to changing the policies and structures at the CDC. She wasn’t ready to compromise her scientific judgment, however.

“I could have kept the office, the title, but I would have lost the one thing that cannot be replaced: my integrity,” she said.

Monarez said that at an Aug. 25 meeting, Kennedy demanded she fire senior scientists and agree to approve all changes in vaccine policy put forward by the new members of the Advisory Committee on Immunization Practices. In June, Kennedy fired its members and replaced them with a smaller group that includes leading opponents of the U.S. vaccination program.

When Monarez refused both requests, she said, Kennedy told her to resign. She refused, and the White House fired her, she said.

Kennedy, in testimony this month, denied he’d made the ultimatums and said Monarez had lied. Republican senators repeated that claim at Wednesday’s hearing. Markwayne Mullin of Oklahoma said a recording of the Aug. 25 meeting contradicted Monarez’s account. But later in the hearing, Cassidy said that Mullin had retracted his statement, saying there was no such recording.

The hearing appeared to confirm reports that Kennedy intends to change the childhood vaccine schedule, moving initially against recommending a hepatitis B vaccination shortly after birth, a practice the CDC has supported for more than three decades.

The CDC recommends that children be vaccinated against 16 pathogens with about 25 shots, sprays, or oral vaccinations in their first two years of life. The vaccines protect kids against such diseases as influenza, measles, whooping cough, meningitis, diarrhea, chickenpox, cancer, and pneumonia. It’s up to states to decide which vaccinations are required for schoolchildren.

Sen. Lisa Blunt Rochester (D-Del.) noted that for decades universal vaccination of newborns for hepatitis B has reduced case rates of the disease among young people by 99%, as reported by KFF Health News. Sens. Ashley Moody (R-Fla.), Ed Markey (D-Mass.), and Cassidy (R-La.) asked about plans, first reported by KFF Health News, for ACIP to vote to recommend pushing the first dose of the hepatitis B vaccine from the hours after birth to age 4.

Cassidy, in closing the hearing, spoke gravely of the dangers of ending the hepatitis B dose for newborns. He noted that before 1991 as many as 20,000 babies would become infected with hepatitis B, often leading to liver disease and sometimes death. Today, fewer than 20 babies a year contract the virus from their mothers, he said.

“That is an accomplishment to make America healthy again, and we should stand up and salute the people that made that decision,” he said.

Asked by reporters after the hearing whether the American public should have confidence in the advisory committee if it votes to delay the hepatitis B dose for newborns, he replied, “No.”

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The agency “would like to get away” from assembling panels of experts to examine and vote on individual drugs, because “I don’t think they’re needed,” said George Tidmarsh, head of the FDA’s Center for Drug Evaluation and Research. He relayed the message Tuesday at a meeting of health care product makers and Wednesday to an FDA advocacy group.

In addition to being redundant, Tidmarsh said, advisory meetings on specific drugs were “a tremendous amount of work for the company and for the FDA. We want to use that work and our time to focus on the big questions.”

The FDA’s advisory committees were created in their current form by a 1972 law aimed at expanding and regulating the government’s use of experts in technical decisions. They’re periodically summoned for advice, including to review evidence and vote on whether the FDA should approve drugs, vaccines, and medical devices, often when FDA officials face a difficult decision.

FDA actions have traditionally aligned with committee votes. A departure can provoke controversy and public debate, as was the case with the split 2021 decision on whether to approve the Biogen drug Aduhelm to treat Alzheimer’s disease.

The FDA approved the drug despite a “no” vote from its advisory committee, whose members felt the medicine did little to treat the disease. The conflict over Aduhelm laid bare the FDA’s struggle to reconcile pressure from industry and desperate patients with its rigorous evaluation of drug risks and benefits.

Tidmarsh said the committees would still be consulted on general issues like how to regulate different classes of drugs. But meetings on specific drugs, in which experts plow through piles of studies and hours of testimony from FDA and company officials, were mainly useful, he said, because they allowed the public to see how the FDA worked.

This month the FDA began publishing the “complete response letters” it sends to companies when it declines to approve their products. Releasing the letters, which previously required filing requests under the federal Freedom of Information Act, promotes a level of transparency akin to the advisory meetings’, Tidmarsh said.

Advisory committee meetings on individual drugs “are redundant when you have the complete review letters,” he told KFF Health News in a brief interview after appearing at the health care products conference.

Former FDA officials and academics who study the agency disagree. The meetings help FDA scientists make decisions and increase public understanding of drug regulation, and abandoning them doesn’t make sense, they said.

Tidmarsh’s reasoning is “hard to follow,” former FDA Commissioner Robert Califf told KFF Health News. “It’s extremely useful for people inside FDA to find out what other experts think before they make their final decisions. And it’s important to do that in a way that enables the public to understand the points of view.”

“Experts might ask questions of the company or FDA that neither of them thought of on their own,” said Holly Fernandez Lynch, an associate professor of bioethics and law at the University of Pennsylvania. “The public has few other opportunities to comment about FDA decisions.”

Spokespeople for FDA and the Health and Human Services Department did not respond to repeated requests for elaboration on Tidmarsh’s comments.

Califf at times disagreed with advisory committees as commissioner of the agency and once floated the idea that it might be better if they deliberated but did not vote on products. Still, while “maybe someone can come up with a better one, I always thought it was an amazing system,” he said.

The FDA is not obliged to ask the outside experts to review drugs and usually hasn’t. It calls on them mainly for important new types of medications or when a decision is especially tricky because of high demand for a product that may have limited value, Aduhelm being a classic example.

The advisory committees are “an important resource” for the FDA, said Sarah Ryan, a spokesperson for the Pharmaceutical Research and Manufacturers of America. “They can play an important part of the rigorous human drug review process we have in the U.S.”

The committees are often asked to help settle disagreements within the FDA about how to move forward on a regulatory decision, said Reshma Ramachandran, a health services researcher and clinician at the Yale School of Medicine.

She and other researchers and former FDA officials praised FDA Commissioner Marty Makary’s decision to publish the complete response letters.

But the letters don’t obviate the need for committee meetings, said Peter Lurie, a former associate FDA commissioner who heads the Center for Science in the Public Interest.

“A disclosed complete response letter tells the public that a company’s application was rejected and why,” Lurie said. “An advisory committee meeting says to outside experts and the public, ‘Here’s what we’re thinking of doing and we’d love your input before we decide.’ Plainly, those are not equivalent.”

The changes Tidmarsh described are already playing out on the ground. The FDA has held only seven advisory committee meetings since Trump reentered the White House, compared with 22 over the same time frame last year. Officials say they will now release complete response letters as they are sent, and published a batch of 89 earlier in September.

Makary has to some extent replaced the advisory committees, whose members have traditionally been vetted for expertise and biases and which are required to deliberate in public, with panels of handpicked scientists who support his views on subjects such as hormone replacement therapy and antidepressants.

Diana Zuckerman, an FDA watchdog, attended the July hormone replacement therapy panel that considered the FDA’s black-box warning listing dangers of the treatment. Makary had wanted the warning removed and packed the panel with like-minded experts.

The event was hastily called with no opportunity for the public to review discussion materials or comment on them, she said.

“All that was transparent was that they didn’t want to hear from anyone who disagreed with them,” said Zuckerman, who leads the National Center for Health Research.

Before becoming commissioner, Makary pushed for more advisory committee meetings. In early 2022, he blasted the FDA’s decision to approve covid boosters for children ages 12 to 15 without consulting its Vaccine and Related Biological Products Advisory Committee. Makary posted on the social platform X at the time, “It is a slap in the face to science for @US_FDA to circumvent the standard convening of the expert advisory board.”

But Tidmarsh seems to disagree.

Instead of asking an advisory committee to vote in favor of or against a Duchenne muscular dystrophy drug, for example, he said the FDA would be better served by a committee studying the best way to evaluate such drugs, such as which outcomes, or end points, to measure. “Is this end point correct for Duchenne muscular dystrophy? That’s an important question that cuts across many different companies,” he told KFF Health News.

FDA official Vinay Prasad canceled a planned July advisory committee meeting to discuss a Duchenne drug made by the biotech company Capricor Therapeutics. The FDA later published its rejection, or “complete response letter,” to Capricor, which then published its own letter of response to the FDA. Prasad was later pushed out and rehired with fewer powers.

An advisory committee meeting could have worked through the drug’s risks and benefits in a calmer, public, less politicized atmosphere, Ramachandran said.

The FDA usually agrees with the votes of its several dozen advisory committees. A 2023 study found that the FDA agreed with 97% of “yes” votes and 67% of “no” votes.

That’s why Tidmarsh’s comments “come as a complete surprise,” said Genevieve Kanter, an associate professor of public policy at the University of Southern California, who wrote commentary accompanying the study. The FDA has postponed a lot of meetings this year, but “everyone thought it was temporary, with the transition and all the firings.”

“Another theory is that this decision is strategic,” she said, “in terms of consolidating power in the agencies so that you are no longer accountable to outside experts or the public.”

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

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In an Aug. 7 executive order, President Donald Trump announced that political officers would have the power to summarily cancel any federal grant, including for scientific work, that is not “consistent with agency priorities.” Senior officials should not “routinely defer” to recommendations from peer reviewers, who have provided the backbone of federal science funding for eight decades.

NIH Director Jay Bhattacharya reinforced the message in an Aug. 15 internal memorandum stating that political priorities may override the scoring system provided by outside experts appointed to hundreds of review panels.

“While the score and critiques an application receives in peer review are important factors in determining the scientific merit of a proposal,” his memo stated, NIH institutes and centers should not rely on the scientific merit rankings “in developing their final pay plans.”

Like ongoing conflicts at the Centers for Disease Control and Prevention and the Federal Reserve, NIH scientists told KFF Health News, the disruption of the peer review process represents an attack on agency expertise that the country has relied on for decades.

Although the priorities of top agency staffers have always influenced some NIH funding, those people were nearly always career scientists in the past. By downgrading its peer review process, the NIH could allow political appointees who now occupy key positions to stop grants that typically would be funded, and to fund grants they prefer that don’t necessarily meet rigorous scientific standards, a dozen current and former NIH officials told KFF Health News.

Bhattacharya’s guidelines “open the door to the politicization of NIH research,” said Jenna Norton, a program officer in the National Institute of Diabetes and Digestive and Kidney Diseases.

“Peer review is fundamental and makes sure we’re doing the best science,” she said. “If you’re going to ignore that, the political appointee gets to make the final call.”

NIH spokesperson Amanda Fine said that peer review would continue to be the cornerstone of the NIH’s funding decisions but that funding would become less dependent on reviewers’ rankings of grant proposals.

This will “ensure consistent, transparent, and strategic funding decisions that align with the agency’s mission, maximize public health impact, and responsibly steward taxpayer dollars,” she said. Trump’s executive order said peer reviews would be “advisory” only.

Grants to scientists at universities and other research centers make up about 80% of the NIH’s $48 billion budget, with the rest funding internal NIH research. Since 1946, the NIH has doled out funds based mainly on merits established by a scientific review process that ranks each proposal based on innovation, importance, and feasibility.

The peer review process, in which grant proposals scoring above a certain percentile generally receive funding, has always had its critics. Many a Nobel Prize speech has described failures by reviewers to recognize work that would end up leading to pathfinding discoveries, said Carrie Wolinetz, a former NIH chief of staff.

About half of the NIH’s 27 centers and institutes provide leeway to raise or drop grants on the priority list because of factors like institute-wide research goals, Fine said. But these exceptions apply to fewer than 5% of grants, according to Richard Nakamura, who led the NIH’s Center for Scientific Review from 2011 to 2018.

Nakamura’s successor, Noni Byrnes, retired last week after overseeing changes aimed at reducing one frequent target of peer review critics: the awarding of multiple grants to well-placed scientists from top-tier universities.

The Bhattacharya document “itself is not so disturbing in the light of usual practice,” said Harold Varmus, who led the NIH under President Bill Clinton and was the chief of the National Cancer Institute under Barack Obama. “What is disturbing is what it might mean in the context of the current administration.”

The expansion of the Trump administration’s political power at the NIH comes as it has strangled the release of thousands of grants with sometimes ambiguous policy statements and new layers of bureaucracy, including requirements that both the White House and the NIH director clear all new funding opportunities.

Career scientists, who have long run the NIH, have in some instances been replaced by political appointees playing critical roles in scientific decisions, staff scientists say.

New political appointees under Bhattacharya include chief of staff Seana Cranston, a former aide to conservative Rep. Thomas Massie (R-Ky.), and former Department of Government Efficiency manager James McElroy, Cranston’s deputy. The position of chief operations officer was created and filled by Eric Schnabel, a political appointee — since fired — who previously had been in charge of business development for a company that sold fitness programs.

Bhattacharya’s deputy, meanwhile, is Matthew Memoli, an infectious disease scientist who emerged as a sharp critic of covid-19 vaccine mandates. The Department of Health and Human Services stunned vaccine experts in May when it awarded Memoli and colleagues a $500 million grant to develop an influenza vaccine using older technology, with no explanation other than a superlative-filled news release.

The mood at the agency is morbid, said Sylvia Chou, a program officer at the National Cancer Institute. While a minority of workers speak out in protest through documents like the “Bethesda Declaration,” others keep their heads down and their mouths shut.

Most grants must undergo new levels of review by senior NIH employees and the White House, program officers say. Staff members painstakingly police all grant applications for language — such as “diversity” or “climate change” — that might trigger scrutiny by higher-ups, according to four program officers, two of whom KFF Health News agreed not to name because they feared retaliation.

“Bhattacharya has been saying that program officers are making up banned-words lists,” Norton said. “It’s true, we haven’t gotten a list from him saying, ‘Don’t use these words.’ But we do notice that when a grant says ‘health equity,’ it gets terminated.”

“We review them and screen them for all these words as we’re supposedly not doing — but we are doing,” said a program officer who has been at the NIH for six years. “After we approve them, they go to the grant management office and sit there. Then they send them back and say, ‘What about this word?’” This leads to self-censorship, the officer said.

The officer cited a recent proposal involving the effects of hotter weather on kidney disease. It contained the phrase “climate change” as background information, but “I had them remove it,” the officer said. “It’s a level of absurdity, but I wanted to avoid more delays.”

The peer review process itself is “starting to break down” because highly scored grants haven’t been funded for sometimes obscure reasons, Chou said.

The NIH picks hundreds of deeply experienced external scientists to serve on its review panels. While screened to avoid conflicts of interest, many reviewers are themselves NIH grant recipients. They accept pay of about $200 for 100 hours of work as a kind of social contract with the NIH, said Mollie Manier, a scientist at the Center for Scientific Review.

“We’re finding that people are more likely to decline to serve on review panels because their own grants are frozen, or out of protest at what’s happening at NIH,” Manier said.

Another review officer described approaching a Brown University scientist with a request to serve on a panel recently: “They said normally they would do it, but they’ve lost three grants and need to figure out how to keep their lab running.”

As grants crawl through the system, “reviewers are starting to feel they aren’t being convened for anything real,” Manier said. “If the government cancels your grant for no good reason, you can’t expect a good-faith effort anymore.”

“It’s death by a thousand paper cuts, anything they can do to gum up payments, to gum up the decision-making, to wrest control of grant decisions from the career scientists,” said Elizabeth Ginexi, an NIH program officer for 22 years who took early retirement in April.

Fine, the NIH spokesperson, said the agency had “no evidence that recruiting peer reviewers has become more difficult than in the past.”

The administration’s skepticism of peer review feeds doubts NIH scientists already had because of what they saw as irrational villainizing of mRNA vaccines and other matters — including Memoli’s vaccine award.

Although in-house NIH research isn’t subject to the same review process as external grants, Memoli’s grant left officials aghast. “I’m not aware of a process that awards $500 million for a project using antiquated technology to develop vaccines,” one seasoned reviewer said.

Trump’s executive order says the grant review process “undermines the interests of American taxpayers,” leaving many good proposals unfunded while supporting “too much unfocused research of marginal social utility.”

“The opposite is true,” the seasoned reviewer said. “We make sure taxpayer money goes to the most high-impact research.”

“Alignment” is a word the Trump administration frequently uses to explain why an official got fired or research was rejected. Chou finds it appalling.

“The Chinese Communists call it ‘harmonization,’” she said, and now her colleagues speak routinely about grants that are “clean” because they’ve “gone through alignment.”

“We’re saying this in plain English,” she said. “Not Russian, not Beijing Chinese.”

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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For now, Jones, the founder of Xlear, can’t make those claims in his company’s advertising. But if the lawsuit his company brought against the Federal Trade Commission succeeds, he’ll likely be able to say anything he wants.

As the Trump administration loosens enforcement by the Federal Trade Commission, Department of Justice, and FDA of unproven health claims, Jones and his allies in the “medical freedom” movement are pushing to permanently roll back the health regulatory state.

For decades, the FTC has required companies to back any medical claims about their products with substantial evidence, while taking actions against hundreds of “bogus health cures,” said Jessica Rich, the FTC’s director of consumer protection from 2013 to 2017.

If successful, the lawsuit by Jones’ company “would be a complete game changer,” said Mary Engle, associate director of the FTC’s advertising practices division from 2001 to 2020.

The FTC — and FDA — don’t have sufficient staffing to rigorously police health claims, but Health and Human Services Secretary Robert F. Kennedy Jr.’s allies in the alternative medicine world have suggested that the agencies already go too far.

“The pharmaceutical industry has a stranglehold and monopoly in America,” Jones told KFF Health News. “The consumer should have a choice in what they’re doing and how they’re being proactive and reactive in their health care.”

Jones and other members of the Alliance for Natural Health USA, which includes alternative medicine practitioners, vaccine skeptics, and proponents of “natural” remedies, were elated when Kennedy became Health and Human Services secretary in February. One called it a “once-in-a-lifetime opportunity.”

Kennedy had warned shortly before Trump’s reelection that the FDA would face a reckoning for its “aggressive suppression” of vitamins, peptides, nutraceuticals, and other products from a supplement industry that has sought more freedom to make claims about its products.

Losing Regulatory Bite?

For decades, the FDA has had the power to recall dangerous products and check health claims, although it has nowhere near the workforce it would need to police the vast $70 billion supplement industry.

The FTC has traditionally had more teeth, successfully suing companies that make unsubstantiated claims. For example, the agency won a judgment last year against a company that advertised a supplement as “clinically shown” to improve memory.

The FTC under Trump has not announced any new enforcement actions against supplement makers (it did send consumers the proceeds of previous fraud settlements), and the administration has reversed several covid-related FTC actions. In March, the FTC dropped a lawsuit filed in 2021 against Jones and Xlear over the marketing of its “drug-free” sinus rinse as a covid preventive and treatment. The Department of Justice also closed a case brought on behalf of the FTC and the FDA against a company that claimed its Earth Tea could cure covid.

In June, Jones, who says he spent $3 million fighting the FTC suit before it was dropped, sued back. The company asked a judge to forbid the FTC from requiring that health product marketers back their claims with convincing evidence, such as clinical trials — a position the FTC has maintained since 1984.

Xlear hopes the suit will be considered under last year’s Supreme Court ruling known as Loper Bright, said Xlear attorney Rob Housman. That ruling gave courts more power to second-guess federal agencies’ interpretation of the laws that govern their activities.

The Alliance for Natural Health joined Xlear in a separate petition in May demanding that the FTC drop its requirement for companies to provide substantial evidence backing health claims, and to withdraw 2022 guidelines that generally require companies to run a randomized clinical trial to prove their claims.

The petition was filed by Jonathan Emord, a lawyer who has successfully fought FDA and FTC regulation of supplements and unsuccessfully ran for governor of Virginia as a Republican in the 2024 primary.

Emord’s petition seeks to flip the burden of proof. Instead of requiring the makers of supplements and cosmetic creams, pills, sprays, and herbals to prove their products do what they claim to do, the government would have to prove that they don’t.

“If an advertiser throws caution to the wind and makes a health-related product claim without resort to any supporting evidence, the FTC is powerless” to stop it, Emord wrote in the petition. “Rather, the claim will be tested in the idea and information market free of government constraint.”

Emord and the Alliance for Natural Health did not respond to repeated requests for comment.

The FTC would not comment on the lawsuit, the petition, or the issue of substantiation in general, spokesperson Juliana Gruenwald Henderson said.

Shorthanded and Mostly Hands-Off

Meanwhile, with Kennedy’s administration chockablock with proponents of nontraditional health products, “there’s been a downtick of enforcement,” Housman said.

Since Trump took office, the FTC has lost at least a quarter of the staff in its Division of Advertising Practices, which took the original action against Xlear, said Serena Viswanathan, who retired as FTC associate director in June. The Department of Justice has reorganized its consumer protection unit, which backed the FTC in many actions, and moved some of its lawyers to immigration and other areas.

In one of the only actions it has taken against deceptive health practices under Trump, the FTC hosted a July 9 workshop titled “The Dangers of ‘Gender-Affirming Care’ for Minors.”

In FTC Chairman Andrew Ferguson’s opening statement at that event, he excoriated the Biden administration for allowing hormonal and surgical treatments for youth experiencing gender dysphoria.

But Ferguson justified the FTC’s new attack on these treatments by referring to the agency’s traditional practice of pursuing companies for making false and deceptive claims. Noting the agency’s past actions against “shyster snake oil salesmen” promoting fake cures, Ferguson highlighted the Biden-era FTC’s position that “health claims need to be backed up by reliable scientific evidence” and an “incredibly high standard of scientific ‘substantiation.’”

Under that logic, Ferguson “has to defend against the Xlear lawsuit,” Rich said.

“If anyone can just hawk health products without any basis, and customers spend money on bogus cures instead of seeking proper care, it’s really a serious issue,” she said.

‘Nanny State’ or Not?

Ferguson’s remarks reflect one of many contradictions in the administration’s approach to health policy. While favoring deregulation and greater personal liberty to consume unregulated supplements, Kennedy has also pushed for stricter FDA oversight of food and drugs, while advocating for behavioral change that GOP officials derided as “nanny state” tactics when Democrats like former first lady Michelle Obama promoted doing so.

Kennedy, for example, has said he wants more randomized control trials for vaccines and drugs — a requirement rejected by medical freedom advocates like Jones.

“I like clinical data; I think it’s great,” Housman said. “It’s not the be-all and end-all.”

Kennedy has also announced plans to change a policy that allows food companies to add ingredients without a full safety review. But many supplement makers use the policy to get their products on the market without FDA review, and some are unhappy about the potential clampdown.

Banking on Xylitol

The FDA approved xylitol as a food additive in 1963 and regulates it as a cosmetic ingredient. Jones, who said his company has about 110 employees and sells to 70,000 retailers, founded Xlear 25 years ago.

Jones expresses skepticism of vaccines, believes the drug industry has a monopolistic stranglehold on health care, and is a “true believer” in xylitol, Housman said.

In an interview with KFF Health News, Jones said that the slightly sweet, minty-flavored substance reduces gum inflammation by blocking the adhesion of tooth-rotting Streptococcus mutans bacteria to cells in the mouth.

In Finland, where water is not fluoridated, dentists have long recommended xylitol-imbued chewing gum for children. In addition to fighting cavities and lowering periodontal disease, Jones said, xylitol could fight chronic illnesses like obesity, Alzheimer’s, and heart disease, which “all have a correlation with oral hygiene.”

But “the government bans us from going out and talking about what xylitol does,” he said. “We cannot say xylitol can help prevent tooth decay, because xylitol is not a drug, and that’s a drug claim.”

As for its use against covid, three ear, nose, and throat specialists interviewed by KFF Health News said that xylitol is good for moisturizing nasal cavities, perhaps a bit better than simple saline solution. While there’s no evidence it prevents or cures covid, xylitol, like saline nose washes, may reduce symptoms when used toward the start of any viral upper respiratory infection, said Christine Franzese, a professor of otolaryngology at the University of Missouri Medical Center and the chair of the American Academy of Otolaryngology-Head and Neck Surgery’s allergy, asthma, and immunology committee.

Xylitol is poisonous to dogs, but deemed safe to humans when used at recommended doses in sprays, candies, chewing gum, and other products, according to the American Academy of Pediatric Dentistry, which also states that evidence is mixed on whether xylitol fights cavities effectively.

At higher doses, xylitol can cause diarrhea and other gastrointestinal problems, and a study funded by the National Institutes of Health and published last year found that regular use of xylitol as a sweetener could exacerbate heart disease. The quantities of xylitol consumed daily by participants in that study were far higher than what’s in a few sticks of chewing gum, however.

Florida ordered fluoride removed from the state’s water starting July 1, and other states are considering bans. Kennedy wants to end fluoridation nationwide, despite widespread skepticism of his belief that it poisons the brain at common dosing levels.

The bans are a boon to Xlear, Jones said. The company would provide gum for the Utah pilot at cost, he said, but if governments promote it and people learn more, “that’s where we see us being able to grow.”

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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NCI, which has long benefited from enthusiastic bipartisan support, now faces an exodus of clinicians, scientists, and other staffers — some fired, others leaving in exasperation.

After years of accelerating progress that has reduced cancer deaths by a third since the 1990s, the institute has terminated funds nationwide for research to fight the disease, expand care, and train new oncologists. “We use the word ‘drone attack’ now regularly,” one worker said of grant terminations. “It just happens from above.”

The assault could well result in a perceptible slowing of progress in the fight against cancer.

Nearly 2 million Americans are diagnosed with malignancies every year. In 2023, cancer killed more than 613,000 people, making it the second-leading cause of death after heart disease. But the cancer fight has also made enormous progress. Cancer mortality in the U.S. has fallen by 34% since 1991, according to the American Cancer Society. There are roughly 18 million cancer survivors in the country.

That trend “we can very, very closely tie to the enhanced investment in cancer science by the U.S. government,” said Karen Knudsen, CEO of the Parker Institute for Cancer Immunotherapy and a globally recognized expert on prostate cancer.

“We’re winning,” Knudsen said. “Why we would let up, I really don’t understand.”

This article is based on interviews with nearly two dozen current and former NCI employees, academic researchers, scientists, and patients. KFF Health News agreed not to name some government workers because they are not authorized to speak to the news media and fear retaliation.

“It’s horrible. It’s a crap show. It really, really is,” said an NCI laboratory chief who has worked at the institute for three decades. He’s lost six of the 30 people in his lab this year: four scientists, a secretary, and an administrator.

“If we survive I will be somewhat surprised,” he said.

After a mandate by the Department of Health and Human Services and the Department of Government Efficiency to slash contract spending by more than a third, the cancer institute is cutting contracts to maintain precious biological specimens used in its research, according to three scientists. “The required contract cuts are going to be devastating,” a senior scientist said.

On the NCI campus in Bethesda, Maryland, scientists describe delays in getting essential supplies — “literally anything that goes into a test tube or a petri dish,” a recently departed clinician said — because of staffing cuts and constant changes in policies about what they can order.

Even the websites that publish new evidence on cancer treatment and diagnosis aren’t being updated, because HHS fired workers who managed them. And when NCI scientists do communicate with outsiders, what they say has been severely restricted, according to documents viewed by KFF Health News. Forbidden topics include mass firings, President Donald Trump’s executive orders, and “DEIA” – diversity, equity, inclusion, and accessibility.

The turmoil at the National Institutes of Health’s largest arm could haunt the country and the world for years to come.

“I really, really don’t understand what they’re trying to achieve,” said Sarah Kobrin, chief of NCI’s health systems and interventions research branch. “It just doesn’t make sense.”

“Efforts that are lifesaving now are being curtailed,” one scientist said. “People will die.”

Years of Bipartisan Support

Initially, some workers said, they thought the cancer institute might be spared. HHS Secretary Robert F. Kennedy Jr. has called chronic disease — cancer is one — “an existential threat” to the country. Cancer research, with multiple NCI-funded breakthroughs in genetics and immunotherapy, has sidestepped the political minefields around other public health issues, like vaccination.

“People who care about cancer might be the biggest lobby in the country,” said Paul Goldberg, editor and publisher of The Cancer Letter, which has monitored oncology science and policy since 1973.

Count Mike Etchamendy, 69, of Big Bear Lake, California, as part of that lobby. Since 2013 he’s flown to the East Coast scores of times to participate in five clinical trials at the cancer wing of NIH’s Clinical Center.

“They call it the House of Hope,” Etchamendy said. Between drugs, therapeutic vaccines, and expert treatment for his rare bone cancer, called chordoma, he said, he believes he’s gained at least 10 years of life. He’s proud to have served as a “lab rat for science” and worries about NCI’s future.

“People come from all over the world to learn there,” Etchamendy said. “You cut funding there, you’re going to cut major research on cancer.”

In response to a list of detailed questions from KFF Health News about the cuts and chaos at NCI, HHS spokesperson Andrew Nixon said the reporting amounted to a “biased narrative” that “misrepresents a necessary transformation at the National Cancer Institute.” Nixon declined to elaborate but said research into cancer and other health conditions continues to be a high priority “for both NIH and HHS.”

“We are refocusing resources on high-impact, evidence-based research — free from ideological bias or institutional complacency. While change can be uncomfortable for those invested in the status quo, it is essential to ensure that NCI delivers on its core mission,” he said.

Much of NCI’s work is authorized by the National Cancer Act of 1971, which expanded its mandate as part of President Richard Nixon’s “War on Cancer.” Three of four of the cancer institute’s research dollars go to outside scientists, with most of the remainder funding more than 300 scientists on campus.

And Congress was generous. Harold Varmus, one of more than 40 Nobel laureates whose work was funded by NCI, said budgets were usually handsome when he was NIH director from 1993 through 1999. President Bill Clinton “would say to me, ‘I’d like to give you a bigger increase, Harold, but your friends in Congress will bring it up.’ He’d offer me a 5% increase,” Varmus recalled, but “I’d end up getting more like 10%” from Congress.

Congress appropriated $2 billion to NCI in fiscal 1993. By 2025, funding had risen to $7.22 billion.

Rat on Your Colleagues

During a May 19 town hall meeting with NIH staff members, Jay Bhattacharya, the institute’s new director, equivocated when asked about funding cuts for research into improving the health of racial and ethnic minorities — cuts made under the guise of purging DEI from the government.

According to a recording of the meeting obtained by KFF Health News, Bhattacharya said the agency remained “absolutely committed to advancing the health and well-being of every population, including minority populations, LGBTQ populations, and every population.”

Research addressing the health needs of women and minorities is “an absolute priority of mine,” he said. “We’re going to keep funding that.” But a study considering whether “structural racism causes poor health in minority populations” is “not a scientific hypothesis.”

“We need scientific ideas that are actionable, that improve the health and well-being of people, not ideological ideas that don’t have any chance of improving the health and well-being of people,” he said. That comment angered many staffers, several said in interviews. Many got up and walked out during the speech, while others, watching remotely, scoffed or jeered.

Several current and former NCI scientists questioned Bhattacharya’s commitment to young scientists and minorities. Staffing cuts early in the year eliminated many recently hired NCI scientists. At least 172 National Cancer Institute grants, including for research aimed at minimizing health disparities among racial minorities or LGBTQ+ people, were terminated and hadn’t been reinstated as of June 16, according to a KFF Health News analysis of HHS documents and a list of grant terminations by outside researchers.

Those populations have higher rates of certain cancer diagnoses and are more likely to receive diagnoses later than white or heterosexual people. Black people are also more likely to die of many cancer types than all other racial and ethnic groups.

Jennifer Guida, a researcher who focuses on accelerated aging in cancer survivors, said she recently left NCI after a decade in part because of the administration’s DEI orders. According to several workers and internal emails viewed by KFF Health News, those included an HHS edict in January to report their colleagues who worked on such issues, and flagging grants that included DEI-related terms because they didn’t align with Trump’s priorities.

‘I’m not going to put my name attached to that. I don’t stand for that. It’s not OK,” said Guida, who added that it amounted to a “scrubbing of science.”

Racial discrimination is one factor that contributes to accelerated aging. “There are a growing number of cancer survivors in the U.S.,” Guida said, and “a significant number of those people who will become cancer survivors are racial and ethnic minorities.”

“Those people deserve to be studied,” she said. “How can you help those people if you’re not even studying them?”

In May, NCI informed leaders of the Comprehensive Partnerships to Advance Cancer Health Equity, a program that links 14 large U.S. cancer centers with minority-serving colleges and universities, that their funding would be cut. The project’s Notice of Funding Opportunity — the mechanism the government uses to award grants — had been suddenly taken offline, meaning NCI staffers couldn’t award future funding, according to three sources and internal communications viewed by KFF Health News. These “unpublishings” have often occurred without warning, explanation, or even notification of the grantee that no more money would be coming.

The cancer partnerships have trained more than 8,500 scientists. They’re designed to address widely documented disparities in cancer care by having top medical schools place students from rural, poor, and minority-serving schools and community clinics in research, training, and outreach.

Research shows that patients from racial and ethnic minorities receive better medical care and have improved outcomes when their clinicians share their background.

“I’m from an immigrant family, the first to graduate in my family,” said Elena Martinez, a professor of family medicine and public health at the University of California-San Diego, who leads one of the partnerships with colleagues at largely Hispanic San Diego State University. “I wouldn’t be here without this kind of program, and there won’t be people like me here in the future if we cut these programs.”

Silencing the Science Communicators

In early April, when the dust settled after mass firings across HHS, workers in NCI’s communications office were relieved they still had their jobs.

It didn’t last. A month later, HHS fired nearly all of them, three former workers said. Combined with retirements and other departures, a skeleton crew of six or seven remain of about 75 people. “We were all completely blindsided,” a fired worker said. NCI leadership “had no idea that this was happening.”

As a result, websites, newsletters, and other resources for patients and doctors about the latest evidence in cancer treatment aren’t being updated. They include Cancer.gov and NCI’s widely used Physician Data Query, which compile research findings that doctors turn to when caring for cancer patients.

Gary Kreps, founding director of the Center for Health and Risk Communication at George Mason University, said he relied on Physician Data Query when his father was diagnosed with advanced stomach cancer, taking PDQ printouts when he met with his dad’s doctors. “It made a huge difference,” Kreps said. “He ended up living, like, another three years” — longer than expected — “and enjoyed the rest of his life.”

As of May 30, banners at the top of the Cancer.gov and PDQ websites said, “Due to HHS restructuring and reduction in workforce efforts, the information on this website may not be up to date and pages will indicate as such.” The banners are gone, but neither website was being updated, according to a fired worker with knowledge of the situation.

Outdated PDQ information is “really very dangerous,” Kreps said.

Wiping out NCI’s communications staff makes it harder to share complex and ever-changing information that doctors and patients need, said Peter Garrett, who headed NCI’s communications before retiring in May. Garrett said he left because of concerns about political interference.

“The science isn’t finished until it’s communicated,” he said. “Without the government playing that role, who’s going to step in?”

A Budget To ‘Destroy Clinical Research’

Following court decisions that blocked some NIH grant cancellations or rendered them “void” and “illegal,” NIH official Michelle Bulls in late June told staffers to stop terminating grants. However, NCI workers told KFF Health News they continue to review grants flagged by NIH to assess whether they align with Trump administration priorities. Courts have ordered NIH to reinstate some terminated grants, but not all of them.

At NCI and across NIH, staffers remain anxious.

The White House wants Congress to slash the cancer institute’s budget by nearly 40%, to $4.53 billion, as part of a larger proposal to sharply reduce NIH’s fiscal 2026 coffers.

Bhattacharya has said he wants NIH to fund more big, breakthrough research. Major cuts could have the opposite effect, Knudsen said. When NCI funding shrinks, “it’s the safe science that tends to get funded, not the science that is game changing and has the potential to be transformative for cures.”

Usually the president’s budget is dead on arrival in Congress, and members of both parties have expressed doubt about Trump’s 2026 proposal. But agency workers, outside scientists, and patients fear this one may stick, with devastating impact.

It would force NCI to suspend all new grants or cut existing grants so severely that the gaps will close many labs, said Varmus, who ran NCI from 2010 to 2015. Add that to the impact on NCI’s contracts, clinical trials, internal research, and salaries, he said, and “you can reliably say that NCI will be unable to keep up in any way with the promise of science that’s currently underway.”

The NCI laboratory chief, who has worked at the institute for decades, put it this way: “If the 40% budget cut passes in Congress, it will destroy clinical research at NCI.”

KFF Health News correspondent Rae Ellen Bichell contributed to this report.

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

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