“There are enough reports of it, enough interest in it, that we actually did — ivermectin, in particular — did engage in sort of a better preclinical study of its properties and its ability to kill cancer cells,” said Anthony Letai, a physician the Trump administration appointed as NCI director in September.

Letai did not cite new evidence that might have prompted the institute to research the effectiveness of the antiparasitic drug against cancer. The drug, largely used to treat people or animals for infections caused by parasites, is a popular dewormer for horses.

“We’ll probably have those results in a few months,” Letai said. “So we are taking it seriously.”

He spoke about ivermectin at a Jan. 30 event, “Reclaiming Science: The People’s NIH,” with National Institutes of Health Director Jay Bhattacharya and other senior agency officials at Washington, D.C.’s Willard Hotel. The MAHA Institute hosted the discussion, framed by the “Make America Healthy Again” agenda of Health and Human Services Secretary Robert F. Kennedy Jr. The National Cancer Institute is the largest of the NIH’s 27 branches.

During the covid pandemic, ivermectin’s popularity surged as fringe medical groups promoted it as an effective treatment. Clinical trials have found it isn’t effective against covid.

Ivermectin has become a symbol of resistance against the medical establishment among MAHA adherents and conservatives. Like-minded commentators and wellness and other online influencers have hyped — without evidence — ivermectin as a miracle cure for a host of diseases, including cancer. Trump officials have pointed to research on ivermectin as an example of the administration’s receptiveness to ideas the scientific establishment has rejected.

“If lots of people believe it and it’s moving public health, we as NIH have an obligation, again, to treat it seriously,” Bhattacharya said at the event. According to The Chronicle at Duke University, Bhattacharya recently said he wants the NIH to be “the research arm of MAHA.”

The decision by the world’s premier cancer research institute to study ivermectin as a cancer treatment has alarmed career scientists at the agency.

“I am shocked and appalled,” one NCI scientist said. “We are moving funds away from so much promising research in order to do a preclinical study based on nonscientific ideas. It’s absurd.”

KFF Health News granted the scientist and other NCI workers anonymity because they are not authorized to speak to the press and fear retaliation.

HHS and the National Cancer Institute did not answer KFF Health News’ questions on the amount of money the cancer institute is spending on the study, who is carrying it out, and whether there was new evidence that prompted NCI to look into ivermectin as an anticancer therapy. Emily Hilliard, an HHS spokesperson, said NIH is dedicated to “rigorous, gold-standard research,” something the administration has repeatedly professed.

A preclinical study is an early phase of research conducted in a lab to test whether a drug or treatment may be useful and to assess potential harms. These studies take place before human clinical trials.

The scientist questioned whether there is enough initial evidence to warrant NCI’s spending of taxpayer funds to investigate the drug’s potential as a cancer treatment.

The FDA has approved ivermectin for certain uses in humans and animals. Tablets are used to treat conditions caused by parasitic worms, and the FDA has approved ivermectin lotions to treat lice and rosacea. Two scientists involved in its discovery won the Nobel Prize in 2015, tied to the drug’s success in treating certain parasitic diseases.

The FDA has warned that large doses of ivermectin can be dangerous. Overdoses can cause seizures, comas, or death.

Kennedy, supporters of the MAHA movement, and some conservative commentators have promoted the idea that the government and pharmaceutical companies quashed ivermectin and other inexpensive, off-patent drugs because they’re not profitable for the drug industry.

“FDA’s war on public health is about to end,” Kennedy wrote in an October 2024 X post that has since gone viral. “This includes its aggressive suppression of psychedelics, peptides, stem cells, raw milk, hyperbaric therapies, chelating compounds, ivermectin, hydroxychloroquine, vitamins, clean foods, sunshine, exercise, nutraceuticals and anything else that advances human health and can’t be patented by Pharma.”

Previous laboratory research has shown that ivermectin could have anticancer effects because it promotes cell death and inhibits the growth of tumor cells. “It actually has been studied both with NIH funds and outside of NIH funds,” Letai said.

However, there is no evidence that ivermectin is safe and effective in treating cancer in humans. Preliminary data from a small clinical trial that gave ivermectin to patients with one type of metastatic breast cancer, in combination with immunotherapy, found no significant benefit from the addition of ivermectin.

Some physicians are concerned that patients will delay or forgo effective cancer treatments, or be harmed in other ways, if they believe unfounded claims that ivermectin can treat their disease.

“Many, many, many things work in a test tube. Quite a few things work in a mouse or a monkey. It still doesn’t mean it’s going to work in people,” said Jeffery Edenfield, executive medical director of oncology for the South Carolina-based Prisma Health Cancer Institute.

Edenfield said cancer patients ask him about ivermectin “regularly,” mostly because of what they see on social media. He said he persuaded a patient to stop using it, and a colleague recently had a patient who decided “to forgo highly effective standard therapy in favor of ivermectin.”

“People come to the discussion having largely already made up their mind,” Edenfield said.

“We’re in this delicate time when there’s sort of a fundamental mistrust of medicine,” he added. “Some people are just not going to believe me. I just have to keep trying.”

A June letter by clinicians at Cincinnati Children’s Hospital Medical Center in Ohio detailed how an adolescent patient with metastatic bone cancer started taking ivermectin “after encountering social media posts touting its benefits.” The patient — who hadn’t been given a prescription by a clinician — experienced ivermectin-related neurotoxicity and had to seek emergency care because of nausea, fatigue, and other symptoms.

“We urge the pediatric oncology community to advocate for sensible health policy that prioritizes the well-being of our patients,” the clinicians wrote.

The lack of evidence about ivermectin and cancer hasn’t stopped celebrities and online influencers from promoting the notion that the drug is a cure-all. On a January 2025 episode of Joe Rogan’s podcast, actor Mel Gibson claimed that a combination of drugs that included ivermectin cured three friends with stage 4 cancer. The episode has been viewed more than 12 million times.

Lawmakers in a handful of states have made the drug available over the counter. And Florida — which, under Republican Gov. Ron DeSantis, has become a hotbed for anti-vaccine policies and the spread of public health misinformation — announced last fall that the state plans to fund research to study the drug as a potential cancer treatment.

The Florida Department of Health did not respond to questions about that effort.

Letai, previously a Dana-Farber Cancer Institute oncologist, started at the National Cancer Institute after months of upheaval caused by Trump administration policies.

“What you’re hearing at the NIH now is an openness to ideas — even ideas that scientists would say, ‘Oh, there’s no way it could work’ — but nevertheless applying rigorous scientific methods to those ideas,” Bhattacharya said at the Jan. 30 event.

A second NCI scientist, who was granted anonymity due to fear of retaliation, said the notion that NIH was not open to investigating the value of off-label drugs in cancer is “ridiculous.”

“This is not a new idea they came up with,” the scientist said.

Letai didn’t elaborate on whether NCI scientists are conducting the research or if it has directed funding to an outside institution. Three-quarters of the cancer institute’s research dollars go to outside scientists.

He also aimed to temper expectations.

“At least on a population level,” Letai said, “it’s not going to be a cure-all for cancer.”

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In 2026, the Trump administration will require U.S. cancer registries that receive federal funding to classify patients’ sex as male, female — or not stated/unknown. That last category is for when a “patient’s sex is documented as other than male or female (e.g., non-binary, transsexual), and there is no additional information about sex assigned at birth,” the new standard says.

LGBTQ+ health advocates say that move in effect erases transgender and other patients from the data. They say the data collection change is the latest move by the Trump administration that restricts health care resources for LGBTQ+ people.

KFF Health News correspondent Rachana Pradhan appeared on WAMU’s Health Hub on Dec. 10 to explain why LGBTQ+ health advocates worry this change could hurt public health and the care patients receive.

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Médicos y activistas por los derechos de las personas trans aseguran que esta modificación dificultará enormemente la comprensión de los diagnósticos y las tendencias del cáncer en esta población.

Algunos estudios han demostrado que entre las personas transgénero es más frecuente el consumo de tabaco y menos habitual los controles de detección del cáncer, factores que podrían aumentar su riesgo de desarrollar la enfermedad.

Investigadores del cáncer explicaron que este cambio es consecuencia de que la administración Trump solo reconoce los sexos “masculino” y “femenino”.

Los científicos opinan que la medida impactará a todos los registros de cáncer del país —en cada estado y territorio— ya que todos reciben fondos federales.

A partir de 2026, los registros financiados por los Centros para el Control y Prevención de Enfermedades (CDC) y el Instituto Nacional del Cáncer (NCI) deberán clasificar el sexo de los pacientes como hombre, mujer o no indicado/desconocido. Y las agencias federales de salud solo recibirán datos de pacientes clasificados de esa manera.

Actualmente, los registros permiten especificar si el sexo de un paciente de cáncer es “hombre”, “mujer”, “otro”, ofrece diferentes opciones para “transexual”, y si el sexo no ha sido indicado o se desconoce.

En enero, el presidente Donald Trump firmó una orden ejecutiva en la que se estableció que el gobierno federal solo reconocerá los sexos masculino y femenino. Autoridades de los registros oncológicos informaron que se les ordenó modificar la manera en que recolectan los datos de pacientes con cáncer.

“En Estados Unidos, a los que estamos recibiendo fondos federales prácticamente no nos dieron otra opción”, le dijo a KFF Health News Eric Durbin, director del Kentucky Cancer Registry y presidente de la North American Association of Central Cancer Registries (NAACCR). Esta institución, que recibe dinero federal, establece los estándares para informar casos de cáncer a lo largo de Estados Unidos y Canadá.

Según la nueva normativa, se deberá clasificar a los pacientes como “sexo desconocido” cuando esté documentado como algo distinto a masculino o femenino (por ejemplo, no binario o transexual) y no haya información adicional sobre el sexo asignado al nacer.

Una visión incompleta

Investigadores señalaron que actualmente no se cuenta con datos poblacionales de calidad sobre la incidencia de cáncer en las personas transgénero. Si bien se estaban logrando avances importantes para mejorar esta información, ese trabajo ahora corre el riesgo de quedar en la nada.

“En lo que respecta al cáncer y las desigualdades en torno a esta enfermedad, se pueden usar los registros de cáncer para ver dónde se encuentra la mayor contaminación atmosférica, ya que las tasas de cáncer de pulmón son más altas en esas zonas. Se puede observar el impacto del almacenamiento de residuos nucleares debido a los tipos de cáncer que son más frecuentes en esos códigos postales, en esas zonas del país”, explicó Shannon Kozlovich, miembro del comité ejecutivo del California Dialogue on Cancer.

“Cuantos más sectores de la población dejemos fuera de esta base de datos, menos sabremos qué está ocurriendo”, agregó. “Y eso no significa que no esté ocurriendo”.

Durante décadas, los registros de cáncer fueron la herramienta de vigilancia más completa en el país para entender la incidencia del cáncer, las tasas de supervivencia y para identificar tendencias preocupantes.

Cada año, hospitales, laboratorios de patología y otros centros de salud notifican los casos de cáncer a registros regionales y estatales. Los datos compilados documentan las tasas de incidencia y mortalidad por región, raza, sexo y edad.

Dos programas federales son las principales fuentes de estadísticas sobre cáncer, con información sobre decenas de millones de casos. El National Program of Cancer Registries de los CDC financia organizaciones en 46 estados, el Distrito de Columbia, Puerto Rico, las Islas Vírgenes y territorios del Pacífico estadounidense. Su información representa al 97% de la población del país.

Por su parte, el programa de Vigilancia, Epidemiología y Resultados Finales del Instituto Nacional del Cáncer, conocido como SEER, recopila y publica datos de registros que cubren casi la mitad de la población del país.

La información que publican los registros de cáncer ha llevado a modificaciones en el tratamiento y en la prevención, además de impulsar otras políticas diseñadas para reducir las tasas de diagnóstico y de mortalidad.

Por ejemplo, esos datos permitieron identificar el aumento de casos de cáncer colorrectal entre personas menores de 50 años. Como resultado, ahora las guías clínicas en Estados Unidos recomiendan que los adultos comiencen los chequeos a los 45 años en vez de a los 50.

Varios estados también han aprobado sus propias medidas. Lara Anton, vocera del Departamento de Servicios de Salud de Texas, dijo que en 2018 los epidemiólogos del Registro Oncológico de Texas descubrieron que el estado tenía las tasas más altas del país de carcinoma hepatocelular, un tipo de cáncer de hígado más común en hombres que en mujeres.

A raíz de esto, el Instituto de Prevención e Investigación del Cáncer de Texas impulsó un esfuerzo estatal para revertir el aumento de casos. El Registro Oncológico de Texas se unió a SEER en 2021.

“Cuando se ingresa a un paciente con cáncer en un registro, lo seguimos durante el resto de su vida. Porque necesitamos saber si las personas sobreviven según el tipo y la etapa del cáncer”, señaló Durbin. “Eso es crucial para la formulación de políticas públicas”.

La NAACCR imparte los estándares nacionales que definen qué tipo de datos se deben recopilar con cada diagnóstico. Estos estándares son desarrollados junto a los CDC, el Instituto Nacional del Cáncer y otras organizaciones.

Según Durbin, los registros recopilan más de 700 datos por paciente, entre ellos información demográfica, diagnóstico, tratamiento y supervivencia. Los registros financiados por los CDC y el NCI deben especificar el sexo del paciente.

Las definiciones de NAACCR y sus estándares de datos garantizan una recolección uniforme en todo el país. “Todos seguimos esencialmente los estándares que desarrolla NAACCR”, dijo Durbin. Aunque los registros pueden agregar datos específicos a nivel estatal, deben seguir estos lineamientos cuando transfieren la información al gobierno federal.

En un comunicado enviado por correo electrónico, Andrew Nixon, vocero del Departamento de Salud y Servicios Humanos, afirmó: “HHS está utilizando la ciencia biológica para guiar sus políticas, no agendas ideológicas como lo hizo la administración Biden”.

Un retroceso

NAACCR publica periódicamente actualizaciones de sus lineamientos. Pero, según Kozlovich, el cambio en la categoría de “sexo” que eliminará las opciones transgénero a partir de 2026 fue una decisión de emergencia provocada por las políticas de la administración Trump.

Kozlovich formó parte de un grupo que impulsó la inclusión de datos sobre sexo y género como variables distintas en la recolección de información oncológica.

Según un análisis de datos de los CDC realizado por el Williams Institute de la UCLA School of Law en Los Ángeles (UCLA), 2,8 millones de personas mayores de 13 años se identifican como transgénero en el país.

Científicos y defensores de los derechos de las personas trans manifestaron en entrevistas que hay señales preocupantes de que esta población podría tener mayor riesgo de desarrollar cáncer o enfrentar peores condiciones de salud en comparación con otras.

“Sin evidencia sobre nuestras desigualdades en salud, no hay ningún incentivo para corregirlas”, afirmó Scout, director ejecutivo de la LGBTQIA+ Cancer Network.

Un estudio publicado en 2022 concluyó que las personas transgénero y de género diverso eran entre dos y tres veces más propensas que las personas cisgénero a consumir cigarrillos, cigarrillos electrónicos o habanos. El consumo de tabaco es una de las principales causas de cáncer y de muerte por cáncer.

Un estudio canadiense publicado en 2019 concluyó que los pacientes trans tenían menos probabilidades de recibir los controles recomendados para detectar cáncer de mama, de cuello uterino y colorrectal. Y un estudio de 2023 realizado por investigadores de la Stanford Medicine encontró que los pacientes LGBTQ+ tenían casi tres veces más probabilidades de experimentar una recurrencia del cáncer de mama en comparación con personas cisgénero heterosexuales.

Scarlett Lin Gomez, epidemióloga de la Universidad de California-San Francisco y directora del Greater Bay Area Cancer Registry explicó que desde hace al menos 10 años el Instituto Nacional del Cáncer ha buscado mejorar su capacidad para monitorear la carga de cáncer en poblaciones con diferentes orientaciones sexuales e identidades de género. Los registros oncológicos son un punto de partida lógico, explicó.

“Se había avanzado lenta pero correctamente”, señaló Gómez. “Pero ahora, desde mi punto de vista, hemos retrocedido completamente”.

La decisión de no recopilar información sobre la identidad trans de los pacientes con cáncer es solo uno de los muchos cambios que han enfrentado los registros bajo la administración Trump, según científicos encargados de tareas de vigilancia y agencias estatales de salud.

Una orden del HHS para reducir gastos en contratos provocó recortes en el financiamiento a registros del programa SEER del NCI. Aunque los fondos de los CDC para registros no se han reducido, el presupuesto que propuso la Casa Blanca para el año fiscal 2026 plantea eliminar el financiamiento del National Program of Cancer Registries.

Otras acciones de la administración Trump contra personas trans incluyen la cancelación de subvenciones para investigaciones sobre salud LGBTQ+, el desmantelamiento de la oficina de salud para minorías sexuales y de género de los Institutos Nacionales de Salud, y la suspensión de servicios especializados para jóvenes LGBTQ+ en la línea nacional de prevención del suicidio 988.

Sin datos, los investigadores no pueden justificar el financiamiento de investigaciones que puedan beneficiar a pacientes trans, lamentó Gomez. “Es una forma de borrar su existencia”.

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Libertarian author Jeffrey Tucker created the institute in 2021, fueled by backlash against covid lockdowns and other pandemic-era policies. His institute’s covid contrarians seek to limit the government’s role in protecting people from disease. In recent months, people with ties to the group have catapulted to the highest levels of the U.S. government. 

At least eight people with ties to the Brownstone Institute hold or recently held senior positions at federal health agencies or key roles advising the government, including at the National Institutes of Health, at the FDA, and on a key vaccine panel that advises the Centers for Disease Control and Prevention. 

Those people are already changing the direction of U.S. public health policy. For example, people with ties to the institute have sown doubt about covid vaccines and routine childhood immunizations, dismissing widespread evidence that they are safe and that the benefits outweigh the risks. 

“They’ve successfully placed their ideology inside the mechanism that determines U.S. vaccine policy,” said Jake Scott, a physician at Stanford Medicine who specializes in infectious diseases. “It’s very, very troubling.”

The Brownstone Institute’s website says it works “to support writers, lawyers, scientists, economists, and other people of courage who have been professionally purged and displaced during the upheaval of our times.” 

“There’s a danger associated with a state-imposed orthodoxy,” Tucker told KFF Health News. “I think Brownstone has a moral obligation to care for dissidents and create settings in which they’re able to test their ideas against people with whom they disagree.” 

Brownstone’s critics say its associates make extreme claims about vaccines and promote anti-vaccine messages. 

“They’ve been willing to publish articles of some very extreme anti-vaccine people,” said Dorit Reiss, a professor at the University of California Law-San Francisco focused on vaccine-related legal and policy issues. 

The nonprofit reported nearly $7.4 million in contributions, grants, and other payments from 2021 to 2024.  

Despite the ascendance of those with ties to his group, Tucker said that “anybody who thinks that somehow Brownstone is some big plot, it’s crazy.” He said he is not in regular contact with Health and Human Services Secretary Robert F. Kennedy Jr., whose department oversees the CDC, FDA, and NIH. 

“I don’t have any influence,” Tucker said.

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Scientists and advocates for trans rights say the change will make it much harder to understand cancer diagnoses and trends among the trans population. Certain studies have shown that transgender people are more likely to use tobacco products or less likely to receive routine cancer screenings — factors that could put them at higher risk of disease.

The change is a consequence of Trump administration policies recognizing only “male” and “female” sexes, according to cancer researchers.

Scientists said the change will affect all cancer registries, in every state and territory, because they receive federal funding. Starting in 2026, registries funded through the Centers for Disease Control and Prevention and the National Cancer Institute will categorize cancer patients as male, female, or not stated/unknown. And federal health agencies will receive data only on cancer patients classified that way.

Registries currently specify whether a cancer patient’s sex is “male,” “female,” “other,” various options for “transsexual,” or that the patient’s sex is not stated or unknown.

President Donald Trump in January issued an executive order stating that the government would recognize only male and female sexes. Cancer registry officials said the federal government directed them to revise how they collect data on cancer patients.

“In the U.S., if you’re receiving federal money, then we, essentially, we weren’t given any choice,” Eric Durbin, director of the Kentucky Cancer Registry and president of the North American Association of Central Cancer Registries, told KFF Health News. NAACCR, which receives federal funds, maintains cancer reporting standards across the U.S. and Canada.

Officials will need to classify patients’ sex as unknown when a “patient’s sex is documented as other than male or female (e.g., non-binary, transsexual), and there is no additional information about sex assigned at birth,” the new standard says.

Missing the Big Picture

Researchers said they do not have high-quality population-level data on cancer incidence in transgender people but had been making inroads at improving it — work now at risk of being undone.

“When it comes to cancer and inequities around cancer, you can use the cancer registries to see where the dirtiest air pollution is, because lung cancer rates are higher in those areas. You can see the impact of nuclear waste storage because of the types of cancers that are higher in those ZIP codes, in those areas of the country,” said Shannon Kozlovich, who is on the executive committee of the California Dialogue on Cancer.

“The more parts of our population that we are excluding from this dataset means that we are not going to know what’s happening,” she said. “And that doesn’t mean that it’s not happening.”

For decades, cancer registries have been the most comprehensive U.S. surveillance tool for understanding cancer incidence and survival rates and identifying troubling disease trends. Each year, cancer cases are reported by hospitals, pathology labs, and other health facilities into regional and statewide cancer registries. The compiled data documents cancer and mortality rates among regions, races, sexes, and age groups.

Two federal programs serve as the top authorities on cancer statistics, with information on tens of millions of cases. The CDC’s National Program of Cancer Registries provides funding to organizations in 46 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Island territories. Its data represents 97% of the U.S. population. The National Cancer Institute’s Surveillance, Epidemiology, and End Results program, known as SEER, collects and publishes data from registries covering nearly half the U.S. population.

The information published by cancer registries has led to changes in treatment and  prevention, and the enactment of other policies designed to reduce diagnosis rates and mortality.

For example, data collected by cancer registries was essential in identifying rising rates of colorectal cancer among people younger than 50. As a result, U.S. guidelines now recommend that adults start screenings at age 45 rather than 50.

States have enacted their own measures. Lara Anton, spokesperson for the Texas Department of State Health Services, said epidemiologists with the Texas Cancer Registry in 2018 found that the state had the nation’s highest incidence rates of hepatocellular carcinoma, a liver cancer more common in men than women. The Cancer Prevention and Research Institute of Texas initiated a statewide effort aimed at reversing rising rates of liver cancer. The Texas Cancer Registry joined SEER in 2021.

“Once a cancer patient is entered into a cancer registry, we follow those patients for the rest of their lives. Because we really need to know, do patients survive for different types of cancer and different stages of cancer?” Durbin said. “That’s incredibly important for public policies.”

The North American Association of Central Cancer Registries maintains national standards outlining what kind of data registries collect for each diagnosis. It develops the list in partnership with the CDC, the National Cancer Institute, and other organizations.

For any given patient, under NAACCR’s standards, Durbin said, registries collect more than 700 pieces of information, including demographics, diagnosis, treatment, and length of survival. CDC and NCI-funded registries must specify the sex of each patient.

The NAACCR definitions and accompanying data standards are designed to ensure that registries collect case data uniformly. “Everyone essentially follows the standards” that NAACCR develops, Durbin said. Although registries can collect state-specific information, researchers said they need to follow those standards when sending cancer data to the federal government.

In an emailed statement, Department of Health and Human Services spokesperson Andrew Nixon said, “HHS is using biological science to guide policy, not ideological agendas that the Biden administration perpetrated.”

‘Backwards’ Progress

NAACCR routinely publishes updated guidelines. But the change to the “sex” category to remove transgender options in 2026 was an emergency move due to Trump administration policies, Kozlovich said. She was among a group that had pushed for changes in cancer data collection to account for sex and gender identity as separate data points.

According to an analysis of CDC data by the Williams Institute at the UCLA School of Law, 2.8 million people age 13 and older identify as transgender.

Scientists and trans rights advocates said in interviews that there are troubling signs that may make transgender people more likely to develop cancer or experience worse health outcomes than others.

“Without evidence of our health disparities, you take away any impetus to fix them,” said Scout, executive director of the LGBTQIA+ Cancer Network.

A study published in 2022 found that transgender and gender-diverse populations were two to three times as likely as cisgender people to report active use of cigarettes, e-cigarettes, or cigars. Tobacco use is a leading cause of cancer and death from cancer.

A Canadian study concluded in 2019 that transgender patients were less likely to receive recommended screenings for breast, cervical, and colorectal cancers. And a 2023 study from researchers at Stanford Medicine found that LGBTQ+ patients were nearly three times as likely to experience breast cancer recurrence as cisgender heterosexual people.

Scarlett Lin Gomez, an epidemiologist at the University of California-San Francisco and the director of the Greater Bay Area Cancer Registry, said that for at least 10 years the NCI had been interested in improving its ability to monitor cancer burden across patient populations with different sexual orientations and gender identities. Cancer registries are a logical place to start because that is what they’re set up to do, she said.

There’s been “slow but good progress,” Gomez said. “But now we’ve completely, personally, I think, regressed backwards.”

The decision not to capture transgender identity in cancer patients is just one change registries have confronted under the Trump administration, according to scientists leading surveillance efforts and state health agencies. An HHS mandate to reduce spending on contracts led to funding cuts for cancer registries in NCI’s SEER program. Scientists said CDC funds for registries haven’t been cut; however, the White House’s proposed fiscal 2026 budget aims to eliminate funding for the National Program of Cancer Registries.

Among the Trump administration’s other actions targeting trans people are canceling research grants for studies on LGBTQ+ health, dismantling the National Institutes of Health’s office for sexual and gender minority health, and stopping specialized services for LGBTQ+ youth on the 988 national suicide prevention hotline.

Without data, researchers can’t make a case to fund research that may help trans patients, Gomez said. “It’s erasure.”

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“It is very concerning to have a fourfold excess risk of birth defects in these pregnant women,” Kulldorff then said.

Scientists criticized Kulldorff’s questions and remarks in that meeting because they suggested that the vaccine caused birth defects, which is not supported by evidence. The birth defects would have occurred before the women received the vaccine, the scientists said. They say it was one of several scientifically unsubstantiated claims by newly appointed members of the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices, an influential panel that guides which vaccines millions of people receive and whether insurance covers their cost.

Many of the new panel members share a connection to a little-known think tank making its mark in President Donald Trump’s Washington: the Brownstone Institute.

Libertarian author Jeffrey Tucker created the nonprofit institute in 2021, fueled by backlash against covid lockdowns and other pandemic-era policies. “You cannot do something like that to the world and expect people just to sit by and go, ‘OK, that’s normal,’” Tucker said in an interview.

Tucker has endorsed child labor; said of covid shots that “there is no evidence at all that the vaccines saved millions,” contradicting numerous studies showing the opposite; and opposes vaccine mandates.

His institute’s covid contrarians seek to limit the government’s role in protecting Americans from disease. The Austin, Texas-based think tank has received millions from donors whose identities are shielded in tax filings. And in recent months, its associates have catapulted to the highest levels of government.

At least eight people with ties to the Brownstone Institute hold or recently held senior positions at federal health agencies or key roles advising the government, exercising significant authority over access to vaccines and scientific research.

They include Jay Bhattacharya, director of the National Institutes of Health, which has been racked by funding cuts and firings under the Trump administration, as well as senior Food and Drug Administration officials Vinay Prasad and Tracy Beth Høeg. Prasad has been involved in restricting the use of covid vaccines. Høeg has voiced skepticism about vaccine mandates and some childhood immunizations.

Bhattacharya was a senior scholar for the organization. Brownstone has published Bhattacharya’s and Prasad’s writings on its website. Høeg has reported receiving payment from the group.

The institute has compensated Kulldorff and published his articles. Tucker wrote in October that 2020 marked “the beginning of a long friendship” with Kulldorff “that continues to this day.” Three other ACIP members share connections with the organization: MIT operations management professor Retsef Levi, who has spoken as part of at least one Brownstone event; physician Robert Malone, who speaks at its events and whose articles appear on its website; and Case Western Reserve University professor and epidemiologist Catherine Stein, who in 2022 authored an article calling for an end to vaccine mandates at universities.

Thomas Buckley, a public relations professional who wrote for the institute, accepted a political appointment as a top NIH spokesperson after thousands of workers at the biomedical research agency were fired. Buckley noted on Substack that his Brownstone writings “led to my new job.”

“That’s maybe his judgment,” Tucker said.

Buckley, when asked to elaborate, said in an email that he interviewed Bhattacharya “for a story that was later published on Brownstone — it was simply me being polite.” He said he resigned from the NIH on Sept. 30. NIH spokesperson Laci Williams declined to confirm his departure date.

Despite the ascendance of those with ties to his group, Tucker said that “anybody who thinks that somehow Brownstone is some big plot, it’s crazy.” He said he is not in regular contact with Health and Human Services Secretary Robert F. Kennedy Jr., whose department oversees the CDC, FDA, and NIH.

“I don’t have any influence,” Tucker said.

Sowing Vaccine Doubt

People with ties to the institute have sown doubt about covid vaccines or routine childhood immunizations, dismissing widespread evidence that they are safe and the benefits outweigh the risks.

“They’ve successfully placed their ideology inside the mechanism that determines U.S. vaccine policy,” said Jake Scott, a physician at Stanford Medicine who specializes in infectious diseases. “It’s very, very troubling.”

Tucker said that Brownstone “doesn’t have any operational impact on the ACIP committee at all” and that “if somebody wasn’t troubled by Brownstone, there’s probably no reason for us to exist.”

Tucker and Brownstone’s associates express libertarian views and promote distrust of government, including public health authorities.

“The evidence is mounting and indisputable that MRNA vaccines cause serious harm including death, especially among young people. We have to stop giving them immediately!” Levi posted on social media in 2023, referring to vaccines based on messenger RNA technology, which Pfizer-BioNTech and Moderna used to develop their covid shots. Stein wrote that covid vaccine mandates are “unethical” and not scientifically justified. Bhattacharya asserted on a podcast with Trump ally Stephen Bannon that mRNA technology for vaccines is “no longer viable,” and he has overseen mass terminations of NIH grants for scientific research.

Kennedy in June fired all 17 members of the CDC’s vaccine panel and has replaced them with 12 people so far, including individuals with connections to the Brownstone Institute. Tucker said that he did not propose to the White House or HHS that they be appointed and that Brownstone has not paid them over the past year.

During the September ACIP meeting, several new panel members expressed skepticism of vaccines and dismissed evidence — including the CDC’s own data — demonstrating that they are safe and effective.

That included Kulldorff’s questions and remarks about covid vaccines and birth defects.

In a Pfizer clinical trial, hundreds of pregnant women were given covid vaccines or a placebo during the second and third trimesters of pregnancy. But the birth defects Pfizer reported in its clinical study typically would have formed long before the vaccine was given, said Jeffrey Morris, a biostatistics and public health professor at the University of Pennsylvania Perelman School of Medicine.

“To say that this is a major safety risk,” Morris said, “is beyond a stretch.”

“This one really upsets me because it’s just so misleading,” he said.

Multiple large studies have shown no association between covid vaccines and miscarriage, stillbirth, or birth defects.

In response to questions for this article, Kulldorff said: “In the randomized trial, there were four times as many birth defects in children born to mothers receiving the Pfizer covid vaccine during pregnancy compared to the placebo-receiving control group. To ensure vaccine confidence, it is the responsibility of ACIP to note and inquire about such discrepancies, and it is the manufacturer’s responsibility to thoroughly examine it through additional follow-up studies.”

Kulldorff said he is “not affiliated with the Brownstone Institute” but declined to respond to additional questions, including whether he is currently compensated by the organization or has donated to it. The Brownstone Institute paid Kulldorff $108,333 in 2022, according to tax filings.

Levi said he heard about the Brownstone Institute from social media. He said he is in contact with Tucker “once in a while” but said Tucker has not advised him on vaccines since he was named to the CDC’s vaccine panel. Levi said he has “never received any compensation,” “never had any affiliation,” and “never donated or given any money” to the group.

Bhattacharya did not respond to questions. Williams, the NIH spokesperson, who had earlier declined to respond, citing the federal government shutdown, did not respond to a query seeking comment after the shutdown ended Nov. 12.

Stein declined to comment and referred questions to HHS. Department spokesperson Andrew Nixon said in a statement that Stein’s ACIP appointment “reflects the Administration’s commitment to independent, evidence-based science. Her professional record speaks for itself.”

The Brownstone Institute’s website says it works “to support writers, lawyers, scientists, economists, and other people of courage who have been professionally purged and displaced during the upheaval of our times.”

“There’s a danger associated with a state-imposed orthodoxy,” Tucker said in the interview. “I think Brownstone has a moral obligation to care for dissidents and create settings in which they’re able to test their ideas against people with whom they disagree.”

He said that “there’s never harm that comes from open debate and open distribution of information and views.” But Brownstone’s critics say its associates make extreme claims about vaccines and promote anti-vaccine messages.

“They kind of position themselves as defending freedom, but they consistently platform covid minimizers and vaccine skeptics,” Scott said.

Tucker took issue with the description, saying “it presumes that we know exactly with scientific precision the severity of covid, and so anybody who falls short of explaining that with amazing precision is a minimizer.”

In early September, Scott testified at a Senate subcommittee hearing on vaccines alongside Toby Rogers, a political economist and Brownstone Institute fellow who doesn’t list any medical credentials. Rogers wrote last year in his Substack newsletter that “vaccines are a civilization-destroying technology” and has promoted the debunked idea that vaccines cause autism. “My belief is that the autism and chronic disease epidemics are primarily caused by toxicants — mostly from vaccines and about a dozen additional toxicants,” Rogers said at the Senate hearing. Numerous studies have shown there is no link between vaccines and autism.

Days later, members of Kennedy’s handpicked panel of CDC vaccine advisers “spent hours elevating these theories” about vaccines “that are not really based in solid evidence or high-quality studies,” Scott said. “They manufactured doubt about established vaccines, entertained all this speculation without any evidence — that’s the real damage.”

Levi, responding to that criticism, said: “For the first time in a long time we are issuing objective, evidence-based immunization recommendations through ACIP with honest and transparent discussion of the benefits, risks, and uncertainties.”

As the panel weighed whether to delay the hepatitis B shot given to most newborns, Høeg, a senior adviser for clinical sciences at the FDA, questioned whether the vaccine is safe. “We should have some humility and consider that we may not know all of the potential safety issues,” she said to the CDC panel.

Widespread evidence shows that the hepatitis B newborn dose is safe and that the shot has very few side effects. Starting in 1991, the CDC recommended that the first of three shots of hepatitis B vaccine be given to infants shortly after birth. The move virtually eliminated the potentially fatal disease among American children. Babies infected with the virus at birth have a 90% chance of developing chronic hepatitis B.

In academic journals, Høeg has disclosed receiving payment from the Brownstone Institute but did not specify the amount. She has described Tucker as “a good friend.” Høeg did not respond to a request for comment for this article.

In an email, the FDA’s Prasad said that he “has received no money from Brownstone or any person(s) affiliated” and that all his content published on its website “was republished from his own personal Substack.”

Tucker said he has not advised Prasad or Høeg on vaccines since they became FDA officials. He described the latest CDC vaccine panel meeting as “a breath of fresh air.”

The Covid Contrarian Clubhouse

The Brownstone Institute, on its website, previously called itself “the spiritual child of the Great Barrington Declaration,” the controversial pandemic treatise Bhattacharya, Kulldorff, and Oxford University epidemiologist Sunetra Gupta co-authored in October 2020 that argued against lockdown measures to prevent the covid virus from spreading.

They proposed that widespread immunity against covid could be achieved by allowing healthy people to get infected, known as herd immunity, with protective measures instituted for medically vulnerable people.

The proposal was criticized at the time by many public health experts and high-ranking government officials, including then-NIH Director Francis Collins, who called its authors “fringe epidemiologists,” according to emails the American Institute for Economic Research obtained through a Freedom of Information Act request. (Tucker was AIER editorial director from 2017 to 2021.)

“They’ve been willing to publish articles of some very extreme anti-vaccine people,” Dorit Reiss, a professor at University of California Law-San Francisco focused on vaccine-related legal and policy issues, said of the Brownstone Institute. “They’re trying to give a more respectable veneer to the result of the Great Barrington Declaration,” she added.

In response, Tucker said: “I don’t think being an extremist is a good basis on which to shut somebody’s thoughts down. We need provocations.”

Tucker said he did not propose that Bhattacharya — who was a senior scholar at the institute and wrote 29 articles from July 2021 through October 2024 — be nominated to lead the NIH. More than one-third of the articles were co-authored with Kulldorff, who became Brownstone’s senior scientific director in November 2021.

Kulldorff told National Review he was fired from the Harvard-affiliated Mass General Brigham hospital system and placed on leave at the university that month after he refused to be vaccinated against covid, saying he had natural immunity. Kulldorff said he was hospitalized for a covid infection in early 2021.

The Brownstone Institute reported nearly $7.4 million in contributions, grants, and other payments between 2021 and 2024, with about 35% coming from tax-exempt foundations and donor-advised funds, according to an analysis of tax filings. Donor-advised funds allow people to secure tax deductions for anonymous charitable contributions. Tucker said the organization has 17,000 donors, most of them small, but declined to elaborate on funders.

The filings show the institute has also received funding from foundations run by people with backgrounds in business, including in tech, finance, law, and banking. According to a review of tax records, many of them have also given to anti-vaccine organizations; groups such as the Independent Medical Alliance, which promoted ineffective treatments for covid; or prominent organizations in conservative politics, such as the Federalist Society, the Alliance Defending Freedom, and the Heritage Foundation. Brownstone in 2023 received $67,350 from Donors Trust Inc., which funds conservative causes.

As of 2024, the Brownstone Institute’s board included David Stockman, a White House budget chief under President Ronald Reagan; libertarian economist Donald Boudreaux; and Roger Ver, an investor known as “Bitcoin Jesus.”

Ver’s website said he gave more than $1 million to the institute.

In 2024, Ver was indicted by a federal grand jury for allegedly committing tax fraud costing the IRS at least $48 million. On Oct. 14, the Justice Department announced that Ver had entered into a deferred prosecution agreement to resolve federal tax charges against him and has paid the IRS nearly $50 million. The government has moved to dismiss the indictment against him.

‘People Are Very Skeptical’

Other than publishing posts on its website, the institute awards fellowships and convenes conferences and retreats. Its associates testify in front of Congress. And it holds a “Supper Club” series in cities throughout the country.

“The goal of Brownstone is to make possible wide-ranging conversations about the failure of the system and the solutions to it,” Tucker said.

Ashley Grogg, a registered nurse and founder of Hoosiers for Medical Liberty, spoke at a Supper Club in August on “informed decision-making,” primarily about vaccines.

“People are very skeptical,” Grogg said in an interview. “How do we trust people moving forward? Do we really think that we can trust the new leadership that’s coming in to do the right thing?”

She said she was connected to Brownstone through one of her members. Grogg said she does not think newborns should universally be given the hepatitis B vaccine shortly after birth and opposes vaccine mandates. “I don’t want to take anything away from anybody,” but people who refuse to be vaccinated should not be “withheld from society,” Grogg said.

In September, as the CDC’s vaccine advisers met, Tucker took to the social media platform X to amplify statements questioning vaccines, including from panel members with ties to the group he created. One was Malone saying, “It’s clear that a significant population in the United States has significant concerns about vaccine policy and about vaccine mandates.” Another was from Levi, who, referring to covid vaccines, said, “Most of us are extremely concerned about the safety and the lack of robust evidence both on safety and efficacy for not only pregnant women, but their babies.”

There is strong evidence that mRNA and non-mRNA covid vaccines are safe for pregnant women. A mother’s vaccination while pregnant also helps protect newborns. CDC data that drew upon medical records in 12 states found that nearly 90% of babies who were hospitalized with covid had mothers who did not get the vaccine while pregnant.

In response to questions for this article, Levi said in an email that “the claim that there is strong evidence for the efficacy and safety of covid vaccination during pregnancy in the absence of appropriate clinical trials is not consistent with fundamental regulatory principles” and that panel members “were also concerned by the potential safety signal in the single (small) clinical trial that was conducted, and other research.” Malone did not respond to questions for this article.

Kulldorff, the ACIP chair, said the panel will review vaccines given during pregnancy, childhood, and adolescence.

Less than a week after the ACIP meeting in Atlanta, Levi gave a Brownstone Institute talk about artificial intelligence systems.

Brownstone was a sponsor this month when Children’s Health Defense, a leading anti-vaccine nonprofit founded by Kennedy, held its annual conference in Austin.

And during the institute’s own annual conference recently in Utah, Bhattacharya was one of three people who received its first “Brownstone Prize.”

“I would think it represents a kind of integrity and courage in public life,” Tucker said, “and stand up for what you believe is the truth, even at some degree of personal risk.”

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The letters, dated Oct. 10, were sent to four companies and follow a KFF Health News investigation that exposed widespread issues in states using Deloitte-run systems to assess Medicaid eligibility for millions of people. Failures have resulted in the erroneous loss of health coverage and other vital safety-net benefits for low-income people. Malfunctions in those systems can cost millions and take years to fix.

As most states prepare to institute work requirements mandated by the tax and domestic spending law President Donald Trump signed in July, senators wrote it is each company’s responsibility to build functioning systems, “rather than to prioritize their bottom line.”

Democratic senators Ron Wyden of Oregon, Elizabeth Warren of Massachusetts, and Raphael Warnock of Georgia, as well as Sen. Bernie Sanders (I-Vt.), sent the letters to several companies the Centers for Medicare & Medicaid Services identified as eligibility system contractors: Deloitte, GDIT, Gainwell Technologies, and Conduent.

“They’re essentially health care middlemen that are in the business of red tape, and they profit when Americans don’t get health care,” Wyden, the top Democrat on the Senate Finance Committee, which oversees Medicaid, said in an interview.

“They’ve got a history of poor performance when it comes to determining eligibility or in helping Americans enroll in Medicaid,” Wyden said. “Without stronger oversight and real accountability, these contractors are just going to get a jumbo windfall for creating systems that actually harm Americans trying to get health care.”

Spokespeople for the four companies did not provide comments for this article.

As of June, 70.5 million people were enrolled in Medicaid, according to CMS.

A handful of states operate their own Medicaid eligibility and enrollment systems, but most rely on contractors to build and run them. KFF Health News found that Deloitte, a global consultancy that generated $70.5 billion in revenue in fiscal year 2025, dominates this slice of government business. Twenty-five states have awarded Deloitte contracts for eligibility systems. The agreements, in which the company commits to design, develop, implement, or operate state-owned systems, are worth at least $6 billion, dwarfing any of its competitors.

Kinda Serafi, a partner at Manatt Health, is advising states on how to reconfigure their systems to incorporate work requirements.

States are in a “major sprint” to make changes by 2027, she said, and they’re being “inundated” with pitches from vendors looking to secure contracts. It underscores the business opportunity these system changes represent for contractors.

“I think we have to really be vigilant to make sure that these vendors are implementing the requirements consistent with the law,” Serafi said.

Companies sign contracts with state governments, but the federal government pays the bulk of the cost. The federal government covers 90% of states’ costs to develop and implement state Medicaid eligibility systems and 75% of ongoing maintenance and operations expenses, according to federal regulations.

The Senate letters cite problems with Deloitte-run eligibility systems that KFF Health News identified. Among other issues, the Florida eligibility system erroneously cut benefits for new moms, and a problem in Kentucky prevented coverage applications from getting through online, which cost $522,455 and took 10 months to resolve.

“Unfortunately, these are just a few examples of third-party systems’ failure to serve their very function: to reliably and accurately determine an individual’s eligibility for Medicaid coverage and services,” the senators wrote.

The senators asked the companies to respond by Oct. 31 to their questions, such as whether companies’ contracts with states include financial incentives tying payment to the removal of Medicaid enrollees and whether the companies are penalized for coverage terminations made in error. The senators also demanded an accounting of the company’s lobbying expenditures for the past five years and protocols for making system changes.

By 2027, the Congressional Budget Office projected, based on an early version of the bill, 18.5 million Medicaid beneficiaries will have to work or complete other qualifying activities for 80 hours a month to keep their benefits, unless they qualify for an exemption. The CBO estimates that 5.3 million enrollees will lose coverage by 2034.

The new work requirements are just one of several federally mandated Medicaid changes that are forcing states to adapt their eligibility systems.

Medicaid work requirements have been plagued with problems in the few states where they’ve been tested. Medicaid enrollees have been frustrated in trying to navigate byzantine rules and glitchy technology. Work requirements have also come at great cost.

Georgia has not adopted the ACA Medicaid expansion, which has granted benefits to millions of adults earning up to 138% of the federal poverty level. Instead, the state offers benefits to some people earning up to the poverty line who can prove they’re working or participating in similar activities for 80 hours a month. Nearly 110,000 Georgians had applied to the state’s Georgia Pathways to Coverage program through May, but only 9,157 people were enrolled as of mid-August. Under typical ACA expansion rules, 336,000 adults would be eligible for coverage, according to KFF.

The Georgia program has cost $109 million, with $34 million spent on health benefits and more than $20 million allocated to marketing contracts, according to a KFF Health News analysis of state reports. Deloitte built Georgia’s eligibility system and is the primary consultant for the Pathways program.

Before Medicaid work requirements became federal law, Arizona also submitted a request to federal regulators to launch its own version that would apply to roughly 190,000 people.

The state’s application provided insight into the types of system changes states may soon need to make to manage the new federal work requirement.

Arizona Medicaid officials said they would gather information on enrollees’ work hours, training, and education. The state’s eligibility system, which is operated by Accenture, would also need to check whether someone is exempt.

States are in the early stages of determining changes they need to make to implement work requirements.

Tessa Outhyse, a spokesperson for the California Department of Health Care Services, said the state expects upgrades to be processed “through the existing contractual change order process.” State contracts with eligibility companies often set aside millions to cover the cost of changes, but systems may require upgrades beyond the agreed-upon work.

In Missouri, upgrades are expected to cost roughly $33 million, according to a state budget document.

The state has a contract with private company RedMane to handle some of its Medicaid eligibility processing. Missouri plans to hire an additional contractor to ensure it properly institutes Medicaid work requirements, according to Baylee Watts, a spokesperson for Missouri’s Department of Social Services.

Medicaid eligibility contractors “have a lot of leverage and expertise to influence contracts, to win contracts,” Wyden said. “They can do a lot more, to the value of what we’re giving them.”

KFF Health News senior correspondent Renuka Rayasam and correspondent Sam Whitehead contributed to this report.

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Federal funding ran out at midnight on Oct. 1, after Congress failed to pass even a stopgap budget while negotiations continued.

Now the question is how long the deadlock will last, with Democrats pitted against Republicans and a presidential administration that has broken with constitutional norms and regularly used political intimidation and primary threats to achieve its ends. Because Republicans hold only a slim majority in the Senate, any deal will need to attract at least a few Democratic votes.

Ramifications from a shutdown on public health systems and health programs will be felt far beyond Washington, D.C., halting almost all of the federal government’s nonessential functions, including many operations related to public health.

Even on Sept. 30, as the clock ticked toward midnight, President Donald Trump renewed threats about mass firings of federal workers if Democrats didn’t acquiesce to GOP demands. Some people worry that such workforce reductions would further enable the administration to undermine federal government operations and reduce the budget impasse to what’s been described as three-dimensional chess or a game of chicken.

Such threats to fire, rather than temporarily suspend, federal workers are “unprecedented,” said G. William Hoagland of the Bipartisan Policy Center. The lack of negotiations between Capitol Hill Republicans and Democrats in advance of the shutdown is also unprecedented in his experience, said Hoagland, a longtime GOP Senate Budget Committee aide.

The stalemate centers largely on health coverage, with Democrats and Republicans clashing over the Affordable Care Act and Medicaid cuts. For Americans with ACA marketplace plans, government subsidies cap the percentage of household income they must pay toward premiums. Lawmakers expanded the subsidies in 2021 and extended that additional help through the end of 2025, and the looming expiration of those expanded subsidies would increase costs and reduce eligibility for assistance for millions of enrollees.

Democrats want a further extension of the subsidies, but many GOP lawmakers are resistant to extending them as is and say that debate must wait until after a budget deal to keep the federal government afloat. Antagonism has grown, with the parties in a pitched battle to convince voters the other party is to blame for the government’s closure.

Said Senate Minority Leader Chuck Schumer on the Senate floor Sept. 30: “Republicans have chosen the losing side of the health care debate, because they’re trying to take away people’s health care; they’re going to let people’s premiums rise.”

But Senate Majority Leader John Thune accused Democrats of attempting to “take government funding hostage.”

The longer a shutdown lasts, the more impacts could be felt. For example, some community health centers would be at risk of closure as their federal funding dries up.

Long-term projects by the Federal Emergency Management Agency to reduce damage from future natural disasters will stop, for example. Rescue services at national parks that stay open will be limited. And at the National Institutes of Health, many new patients awaiting access to experimental treatments may not be admitted to its clinical center.

Entitlement programs such as Medicaid and Medicare will continue, as will operations at the Indian Health Service. But disease surveillance, support from the Centers for Disease Control and Prevention to local and state health departments, and funding for health programs will all be hampered, based on federal health agencies’ contingency plans.

The Department of Health and Human Services is expected to furlough about 40% of its workforce, which has already been downsized by about 20,000 positions under the Trump administration. Across the federal government, roughly 750,000 employees will be furloughed, according to an estimate released Sept. 30 by the Congressional Budget Office, a nonpartisan agency that calculates the cost of legislation. While furloughed employees won’t be working, eventually they will get back pay, totaling about $400 million daily, the CBO estimated.

At HHS, research is expected to pause on the links between drug prices and the Inflation Reduction Act, the major law enacted under former President Joe Biden to boost the economy. Despite reports that Food and Drug Administration Commissioner Marty Makary said the FDA would basically be untouched, the agency won’t accept new drug applications and food safety efforts will be reduced. Federal oversight of a program that helps hospitals save lives and evacuate individuals in environmental crises is expected to stop.

Fewer federal staff will be available to provide help to Medicaid and Medicare enrollees. CDC responses to inquiries about public health matters will be suspended. And the work of a federal vaccine injury program is also anticipated to stop.

Congressional Democrats insist the ACA subsidies must be renewed now because enrollment for the Obama-era health program opens on Nov. 1. Without the extended subsidies, health insurers are warning of double-digit premium hikes for millions of enrollees.

House Democratic Leader Hakeem Jeffries has argued that a “Republican-caused health care crisis” is hanging over Americans as a result of Trump’s new tax-and-spending bill, which adds restrictions to Medicaid that are expected to kick millions off the program. Republicans have also advanced mass layoffs and funding cuts at the nation’s health department and caused widespread confusion over access to some vaccines.

“We’re not going to simply go along to get along with a Republican bill that continues to gut the health care of everyday Americans,” Jeffries told reporters Sept. 29. “These people have been trying to repeal and displace people off the Affordable Care Act since 2010.”

Republicans, meanwhile, have blasted Democrats for holding up funding over the subsidies and say any deal will require concessions.

“If there were some extension of the existing policy, I think it would have to come with some reforms,” Thune, the Senate Republican leader, said Sept. 26.

Such a deal may involve changes to a policy that caps what consumers have to pay for ACA marketplace plans at 8.5% of their income, no matter how much they earn. It could also alter their ability to obtain plans with no premiums, an option that became more widely available because of the beefed-up subsidies.

Adding restrictions to the ACA subsidies is likely to decrease enrollment in the program, which saw declines during the first Trump administration and did not reach 20 million for the first time until last year, a milestone reached in large part due to the subsidies.

Several Republicans have expressed interest in extending the subsidies, including a group of GOP representatives who proposed legislation to do so last month.

Democrats may be betting that the timing of the shutdown will put pressure on their Republican colleagues to come to the negotiation table on the ACA subsidies.

Within days of the government’s closure, ACA enrollees are expected to get notices from their health insurers advising them of steeper premiums. Insurers have said the expiring subsidies have forced those large premium hikes because the healthiest and youngest people are more likely to opt out of coverage when prices go up.

The White House, meanwhile, ramped up its pressure campaign on Democrats. White House press secretary Karoline Leavitt insisted Sept. 29 that Trump wants to keep the government open.

“Our most vulnerable in our society and our country will be impacted by a government shutdown,” she said.

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We previously reported a decrease in the number of patients being treated at the NIH Clinical Center from February through April. Since then, we’ve obtained newer data showing the drop has continued.

As of mid-August, the average daily number of patients treated at the hospital was around 60. There has been a steady drop since February, coinciding with the Trump administration’s mass firings of government employees, its broad immigration crackdown, and the gutting of scientific research.

By contrast, last October, about 80 patients a day, on average, were at the hospital, the documents show.

Current and former government workers cite multiple reasons for the decline. An exodus of clinicians, scientists, and other staffers has limited the number of people who can be treated. Researchers are leaving, which means they’re not recruiting patients to come to the NIH for trials. 

And, the workers say, it’s likely that fewer patients who lack legal status in the U.S. are seeking care at the NIH hospital. That’s because of the Trump administration’s immigration policies and the federal government’s tighter rules for visitors from abroad.

In a statement, HHS spokesperson Andrew Nixon said the decline in the number of patients “has been ongoing for years” and the clinical center “remains fully operational and continues to provide world-class clinical research and patient care.”

Are you a cancer patient whose care at the National Institutes of Health Clinical Center in Maryland, or another hospital, has been affected by the Trump administration’s cuts? Are you a family member or caregiver of a cancer patient who has received care at the NIH? We’d like to hear about your experience. Tell us here.

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The Department of Health and Human Services in late March canceled nearly 700 Centers for Disease Control and Prevention grants nationwide — together worth about $11 billion. Awarded during the covid-19 pandemic, they supported efforts to vaccinate people, reduce health disparities among demographic groups, upgrade antiquated systems for detecting infectious disease outbreaks, and hire community health workers.

Initially, grant cancellations hit blue and red states roughly evenly. Four of the five jurisdictions with the largest number of terminated grants were led by Democrats: California, the District of Columbia, Illinois, and Massachusetts.

But after attorneys general and governors from about two dozen blue states sued in federal court and won an injunction, the balance flipped. Of the five states with the most canceled grants, four are led by Republicans: Texas, Georgia, Oklahoma, and Ohio.

In blue states, nearly 80% of the CDC grant cuts have been restored, compared with fewer than 5% in red states, according to the KFF Health News analysis. Grant amounts reported in an HHS database known as the Tracking Accountability in Government Grants System, or TAGGS, often don’t match what states confirmed. Instead, this analysis focused on the number of grants.

The divide is an example of the polarization that permeates health care issues, in which access to safety-net health programs, abortion rights, and the ability of public health officials to respond to disease threats diverge significantly depending on the political party in power.

In an emailed statement, HHS spokesperson Andrew Nixon said the agency “is committed to protecting the health of every American, regardless of politics or geography. These funds were provided in response to the COVID pandemic, which is long over. We will continue working with states to strengthen public health infrastructure and ensure communities have the tools they need to respond to outbreaks and keep people safe.”

The money in question wasn’t spent solely on covid-related activities, public health experts say; it was also used to bolster public health infrastructure and help contain many types of viruses and diseases, including the flu, measles, and RSV, or respiratory syncytial virus.

“It really supported infrastructure across the board, particularly in how states respond to public health threats,” said Susan Kansagra, chief medical officer of the Association of State and Territorial Health Officials.

The Trump cutbacks came as the U.S. recorded its largest measles outbreak in over three decades and 266 pediatric deaths during the most recent flu season — the highest reported outside of a pandemic since 2004. Public health departments canceled vaccine clinics, laid off staff, and put contracts on hold, health officials said in interviews.

After its funding cuts were blocked in court, California retained every grant the Trump administration attempted to claw back, while Texas remains the state with the most grants terminated, with at least 30. As the CDC slashed grants in Texas, its measles outbreak spread across the U.S. and Mexico, sickening at least 4,500 people and killing at least 16.

Colorado, which joined the lawsuit, had 11 grant terminations at first, but then 10 were retained. Meanwhile, its neighboring states that didn't sue — Wyoming, Utah, Kansas, Nebraska, and Oklahoma — collectively lost 55 grants, with none retained.

In Jackson, Ohio, a half-dozen community health workers came to work one day in March to find the Trump administration had canceled their grant five months early, leaving the Jackson County Health Department half a million dollars short — and them without jobs.

“I had to lay off three employees in a single day, and I haven’t had to do that before. We don’t have those people doing outreach in Jackson County anymore,” Health Commissioner Kevin Aston said.

At one point, he said, the funding helped 11 Appalachian Ohio counties. Now it supports one.

Marsha Radabaugh, one employee who was reassigned, has scaled back her community health efforts: She’d been helping serve hot meals to homeless people and realized that many clients couldn’t read or write, so she brought forms for services such as Medicaid and the Supplemental Nutrition Assistance Program to their encampment in a local park and helped fill them out.

“We would find them rehab places. We’d get out hygiene kits, blankets, tents, zero-degree sleeping bags, things like that,” she said. As a counselor, she’d also remind people “that they're cared for, that they're worthy of being a human — because, a lot of the time, they're not treated that way.”

Sasha Johnson, who led the community health worker program, said people like Radabaugh “were basically a walking human 411,” offering aid to those in need.

Radabaugh also partnered with a food bank to deliver meals to homebound residents.

Aston said the abrupt way they lost the funds — which meant the county unexpectedly had to pay unemployment for more people — could have ruined the health district financially. Canceling funding midcycle, he said, “was really scary.”

HHS Secretary Robert F. Kennedy Jr., a longtime anti-vaccine activist and promoter of vaccine misinformation, has called the CDC a “cesspool of corruption.” At HHS, he has taken steps to undermine vaccination in the U.S. and abroad.

Federal CDC funding accounts for more than half of state and local health department budgets, according to KFF, a health information nonprofit that includes KFF Health News. States that President Donald Trump won in the 2024 election received a higher share of the $15 billion the CDC allocated in fiscal 2023 than those that Democrat Kamala Harris won, according to KFF.

The Trump administration’s nationwide CDC grant terminations reflect this. More than half were in states that Trump won in 2024, totaling at least 370 terminations before the court action, according to KFF Health News’ analysis.

The Columbus, Ohio, health department had received $6.2 million in CDC grants, but roughly half of it — $3 million — disappeared with the Trump cuts. The city laid off 11 people who worked on investigating infectious disease outbreaks in such places as schools and nursing homes, Columbus Health Commissioner Mysheika Roberts said.

She also said the city had planned to buy a new electronic health record system for easier access to patients’ hospital records — which could improve disease detection and provide better treatment for those infected — but that was put on ice.

“We’ve never had a grant midcycle just get pulled from us for no reason,” Roberts said. “This sense of uncertainty is stressful.”

Columbus did not receive its money directly from the CDC. Rather, the state gave the city some funds it received from the federal government. Ohio, led by Republican Gov. Mike DeWine and a Republican attorney general, did not sue to block the funding cuts.

Columbus sued the federal government in April to keep its money, along with other Democratic-led municipalities in Republican-governed states: Harris County, Texas, home to Houston; the Metropolitan Government of Nashville and Davidson County in Tennessee; and Kansas City, Missouri. A federal judge in June blocked those cuts.

As of mid-August, Columbus was awaiting the funds. Roberts said the city won’t rehire staff because the federal funding was expected to end in December.

Joe Grogan, a senior scholar at the University of Southern California’s Schaeffer Institute and former director of the White House Domestic Policy Council in Trump’s first term, said state and local agencies “are not entitled” to the federal money, which was awarded “to deal with an emergency” that has ended.

“We were throwing money out the door the last five years,” Grogan said of the federal government. “I don’t understand why there would ever be a controversy in unspent covid money coming back.”

Ken Gordon, Ohio Department of Health spokesperson, wrote in an email that the $250 million in grants lost had helped with, among other things, upgrading the disease reporting system and boosting public health laboratory testing.

Some of the canceled HHS funding wasn’t slated to end for years, including four grants to strengthen public health in Indian Country, a grant to a Minnesota nonprofit focused on reducing substance use disorders, and a few to universities about occupational safety, HIV, tuberculosis, and more.

Brent Ewig, chief policy and government relations officer for the Association of Immunization Managers, said the cuts were “the predictable result of ‘boom, bust, panic, neglect’ funding” for public health.

The association represents 64 state, local, and territorial immunization programs, which Ewig said will be less prepared to respond to disease outbreaks, including measles.

“The system is blinking red,” Ewig said.

Methodology

KFF Health News’ analysis of Centers for Disease Control and Prevention grants sought to answer four questions: 1) How many grants have been terminated in the U.S. under the Trump administration since March? 2) Which states saw the most grants cut? 3) What were the grants for? and 4) Did the grant terminations affect blue, red, and purple states differently? This follows a similar analysis by KFF Health News for an article on nationwide NIH grant terminations.

Our primary data source was a Department of Health and Human Services website showing grant terminations. We compared an initial list of grant terminations from April 3 with one from July 11 to determine how many grants had been restored. The USAspending.gov database helped us track grants by state.

To classify states politically, we followed the same steps from our April coverage of National Institutes of Health grant terminations. States were “blue” if Democrats had complete control of the state government or if the majority of voters favored Democratic presidential candidates in the last three elections (2016, 2020, 2024). “Red” states were classified similarly with respect to the Republican Party. “Purple” states had politically split state governments and/or were generally considered to be presidential election battleground states. The result was 25 red states, 17 blue states, and eight purple states. The District of Columbia was classified as blue using similar methods.

This analysis does not account for potential grant reinstatements in local jurisdictions where the funds were awarded indirectly rather than directly from the CDC; it accounts only for the recipients’ location, and excludes grants terminated from Compacts of Free Association states and other foreign entities that received grants directly from the CDC. At least 40 CDC grants were terminated that were meant for global health efforts or assisting public health activities in other nations following the Trump administration’s order for the CDC to withdraw support for the World Health Organization.

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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