Billing mistakes. Stigma. Doctors who aren’t keeping up with the latest research. Those are just some of the hurdles that keep HIV prevention medication out of reach for many Americans.

The Centers for Disease Control and Prevention estimates more than 2 million Americans could benefit from a treatment known as PrEP, but only a quarter of them are getting a form of the drug. Zach Dyer appeared on WAMU’s “Health Hub” on Feb. 4 to share tips patients can use to avoid those pitfalls and find a doctor who knows more about PrEP.

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— Matthew Hurley, 30 años, de Berkeley, California

Hace un par de años, Matthew Hurley recibió el tipo de mensaje de texto que muchas personas temen: “¿Cuándo fue la última vez que te hiciste una prueba de ETS (enfermedades de transmisión sexual)?”

Una persona con la que Hurley había tenido sexo sin protección recientemente acababa de recibir un diagnóstico positivo de VIH.

Hurley fue a una clínica para hacerse la prueba. “Por suerte no tenía VIH, pero fue una llamada de atención”, dijo.

Esa experiencia impulsó a Hurley a buscar información sobre PrEP, sigla para la profilaxis preexposición. Este medicamento antirretroviral reduce considerablemente la probabilidad de adquirir VIH, el virus que causa el sida. Cuando se toma tal cual se indica, la terapia es para prevenir la transmisión sexual.

Hurley comenzó a tomar PrEP y todo marchaba bien durante los primeros nueve meses, hasta que cambió su seguro médico y tuvo que ver a un nuevo doctor. “Cuando le mencioné PrEP, me dijo: ‘¿Qué es eso?’ Y yo pensé: esto no pinta bien”.

Hurley, quien es bibliotecario, asumió el rol de docente. Le explicó al doctor que el régimen de PrEP que seguía implicaba tomar una pastilla diaria y hacerse análisis de laboratorio cada tres meses para detectar posibles infecciones o complicaciones de salud.

Hurley se sorprendió de saber más sobre PrEP que su propio médico.

La Administración de Alimentos y Medicamentos (FDA, por sus siglas en inglés) aprobó el primer fármaco, . Además, Hurley vive en el área de la bahía de San Francisco, una de las zonas con en el país y de activismo en salud y VIH.

Amistades mayores que él y conocidos que sobrevivieron a la epidemia de sida le compartieron lo duro que fue vivir en una época sin tratamientos eficaces ni opciones preventivas. Para él, decidir tomar PrEP fue una forma de proteger su salud y también la de su comunidad.

Así que insistió, y el doctor, tras investigar por su cuenta, aceptó recetarle el medicamento.

Hurley recibió la atención necesaria, pero tuvo que asumir el papel de experto en la consulta médica.

“Es una gran carga”, señaló Beth Oller, doctora en medicina familiar y miembro de la junta de GLMA, una organización nacional de profesionales de salud LGBTQ+ y aliados centrada en la equidad en salud. “Una quiere poder ir al médico a hablar sobre su salud sin tener que estar educando ni abogando por sí misma en cada paso”.

Oller agregó que muchas personas queer han tenido en consultas. “Tengo muchos pacientes que no recibieron atención preventiva durante años debido al estigma médico”, afirmó.

Problemas con la facturación

Superar los obstáculos iniciales para acceder a medicamentos preventivos contra el VIH fue solo el comienzo. Hurley empezó a recibir una serie de facturas relacionadas con la PrEP: análisis de sangre: $271,80. Visita médica: $263.

Se sorprendió. Sabía —aunque en la oficina de facturación parecían no saberlo— que, según la (ACA, por sus siglas en inglés), la mayoría de los seguros privados y programas de Medicaid ampliado y los servicios relacionados, , se cubren como atención preventiva sin costo para el paciente.

Las facturas por las visitas médicas y los análisis se acumularon.

Hurley reclamaba por las facturas y, casi siempre, recibía una negativa. Pero volvía a protestar.

Compartió una serie de cartas de reclamos por un servicio específico, en las que la oficina de facturación admitía que el análisis de sangre había sido mal codificado inicialmente como diagnóstico. Una vez corregido el error, según Hurley, el seguro cubrió el servicio.

Puede parecer que se resolvió rápido y fácilmente, pero Hurley dijo que el proceso fue eterno. Tuvo que lidiar con al menos seis facturas erróneas durante varios meses. Calcula que invirtió más de 60 horas en resolver los cobros.

Durante ese tiempo, contó, el departamento de facturación “seguía mandándome correos y facturas diciendo: estás en mora, estás en mora, estás en mora”.

Cansado de tantas complicaciones, Hurley decidió buscar un proveedor de salud (y una oficina de facturación) con más conocimiento sobre PrEP. Eligió a AIDS Healthcare Foundation. Allí, el equipo médico pudo explicarle los pros y contras de los distintos tratamientos preventivos disponibles. Sabían cómo manejar el formulario del seguro de Hurley.

Desde entonces, no ha recibido más facturas inesperadas.

Pero tener que separar la atención en salud sexual y PrEP del cuidado médico general no es lo ideal.

“Tengo que tratar con varias organizaciones distintas para que me atiendan de manera integral”, señaló.

Un proveedor no tiene que ser especialista en VIH, en enfermedades infecciosas ni siquiera un doctor para recetar PrEP. Los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés) alientan a los proveedores de atención primaria a tratar PrEP como cualquier otro .

Cómo evitar algunos de los dolores de cabeza que enfrentó Hurley:

1. Infórmate para saber si PrEP es para tí

Los CDC calculan que en Estados Unidos podrían beneficiarse del uso de medicamentos preventivos contra el VIH, pero solo poco más de una cuarta parte los recibe.

“No todo el mundo conoce la existencia de PrEP, y hay muchas personas que sí han oído hablar del medicamento pero no saben que puede beneficiarles”, explicó Jeremiah Johnson, director ejecutivo de PrEP4All, una organización dedicada al acceso universal a medicamentos y prevención del VIH.

Según las guías clínicas de los CDC, cualquier persona sexualmente activa puede considerar incluir PrEP como parte de su plan de atención preventiva.

Se recomienda especialmente para quienes no usan condones con regularidad, personas que se inyectan drogas y comparten agujas, hombres que tienen sexo con hombres y personas con parejas que viven con VIH o cuyo estado serológico es incierto.

La gran mayoría de quienes usan PrEP son hombres. Existen grandes tanto en la distribución de los casos de VIH como en el acceso a la medicina preventiva.

Por ejemplo, según los patrones de nuevas infecciones en Estados Unidos, un grupo que podría beneficiarse del medicamento son las mujeres negras cisgénero, cuya identidad de género coincide con su sexo asignado al nacer.

2. No asumas que tu doctor sabe qué es PrEP

Si tu doctor no está bien informado, . También puedes llevarle guías clínicas e información relevante. Muchas agencias estatales o locales de salud pública tienen guías específicas para profesionales. Por ejemplo, el Instituto del SIDA del Departamento de Salud del estado de Nueva York tiene materiales .

Los , pero muchos de los sitios web de esa agencia relacionados con salud LGBTQ+ están en revisión. Durante la administración Trump, algunos recursos sobre VIH/sida fueron retirados de los portales federales. Otros ahora : “Esta página no refleja la realidad biológica y por lo tanto esta administración y este Departamento la rechazan”.

3. Hazte los análisis en laboratorios dentro de la red

Johnson señaló que los errores de facturación como los de Hurley son muy comunes. “Los costos de los análisis de laboratorio en particular pueden ser complicados”, dijo.

Por ejemplo, en el consultorio podrían codificar mal el análisis requerido para PrEP como si fuera y no atención preventiva. Como resultado, pacientes como Hurley terminan con facturas que no deberían pagar.

Si el personal médico comete este tipo de errores, puedes hacerles llegar la de NASTAD, una asociación de autoridades de salud pública que administran programas de VIH y hepatitis.

Hazte los exámenes de laboratorio dentro de la red de tu seguro. Si los haces fuera de la red, advirtió Johnson, puede ser más difícil apelar.

Si las facturas siguen llegando, apela. Y si no logras resolver la disputa, Johnson recomienda presentar una queja ante la agencia reguladora del plan de salud.

4. Busca maneras de ahorrar

Hay varios tipos de PrEP. Existen versiones genéricas más económicas de Truvada, como la combinación de emtricitabina/tenofovir disoproxil fumarato, que suele abreviarse como FTC/TDF. Las versiones más nuevas como tienen precios de lista en los miles de dólares. Revisa el formulario de tu seguro y pídele a tu doctor que recete el medicamento que esté cubierto.

Con el aumento previsto de las primas de salud y millones de personas en riesgo de perder la cobertura de Medicaid, muchas podrían quedar sin seguro médico en 2026. Empresas farmacéuticas como y ofrecen programas de asistencia para pacientes que califican. Si tienes que pagar de tu bolsillo, sitios como GoodRx pueden ayudarte a encontrar las farmacias con precios más bajos.

5. Considera la telemedicina

La telemedicina se ha convertido en , especialmente para personas que no viven cerca de proveedores inclusivos o buscan una forma más privada de acceder a PrEP.

En 2024, aproximadamente 1 de cada 5 personas que tomaban PrEP lo hacían por esta vía. Farmacias en línea como y ofrecen PrEP sin necesidad de una consulta presencial, y los análisis se pueden hacer en casa.

Algunas plataformas ofrecen opciones para si no tienes seguro.

La telemedicina también amplía la cantidad de profesionales dispuestos a recetar PrEP. Y para muchos pacientes, hablar con un proveedor de manera remota puede hacerles sentir más seguros. “Están en la comodidad de su dormitorio o sala, pero pueden interactuar virtualmente con un proveedor. Eso abre muchas puertas a la honestidad y la confianza”, explicó Alex Sheldon, director ejecutivo de GLMA.

6. Busca atención inclusiva

GLMA creó el , una base de datos de profesionales de salud en todo el país que se identifican como amigables con la comunidad queer. Como descubrió Hurley, vivir en una gran ciudad no garantiza que tu doctor esté al día en temas de salud LGBTQ+.

Pregunta a personas de confianza en tu comunidad. Puede que haya buenas opciones cerca de ti.

ÌýLa Línea de Ayuda sobre Atención Médica (Health Care Helpline) te ayuda a navegar los obstáculos del sistema de salud para que puedas acceder a una buena atención. Envíanos tu pregunta más compleja y podríamos asignar una persona para investigar. Comparte tu historia y tu pregunta aquí. Este proyecto colaborativo es una producción conjunta de NPR y Â鶹ŮÓÅ Health News.

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

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When Matthew Hurley was looking to take PrEP to prevent HIV, the doctor hadn’t heard of the medicine, and when he finally did prescribe PrEP, the bills sent to Hurley were expensive … and wrong. “I decided to write in because the process was really super frustrating.” At one point, Hurley asked, “Am I just going to stop this medication to stop having to deal with these coding issues and these scary bills?”

— Matthew Hurley, 30, from Berkeley, California

A couple of years ago, Matthew Hurley got the kind of text people fear.

It said: “When was the last time you were STD tested?”

Someone Hurley had recently had unprotected sex with had just tested positive for HIV.

Hurley went to a clinic and got tested. “Luckily, I had not caught HIV, but it was a wake-up call,” they said.

That experience moved Hurley to seek out PrEP, shorthand for preexposure prophylaxis. The antiretroviral medication greatly reduces the chance of getting HIV, the virus that causes AIDS. The therapy is at protecting people against sexual transmission when taken as prescribed.

Hurley started PrEP and all was well for the first nine months — until their health insurance changed and they started seeing a new doctor: “When I brought PrEP up to him, he said, ‘What’s that?’ And I was like, oh boy.”

Hurley, who is a librarian, went into teaching mode. They explained that the PrEP regimen they’d been on required daily pills and lab work every three months to look out for breakthrough infections or other health issues.

Hurley was surprised they knew more about PrEP than the physician. The FDA approved the first drug, Truvada, , and Hurley lives in the San Francisco Bay Area, a place with one of the of LGBTQ+ people in the nation and a of HIV and health care activism. Hurley said older friends and acquaintances who survived the AIDS epidemic shared the horror of living through a time when there was no effective treatment or drugs for prevention. Deciding to take PrEP felt like an empowering way to protect their health and their community.

So Hurley pushed the doctor, and after the physician did his own research, he agreed to prescribe PrEP.

Hurley got the care they needed, but they had to be the expert in the exam room.

“That’s a big burden,” said Beth Oller, a family medicine physician and board member of GLMA, a national organization of LGBTQ+ and allied health care professionals focused on health equity. “You really want someone you can just go in and talk [to] about your health concerns without feeling like you are having to educate and advocate for yourself at every turn.”

Oller said many queer people have had during health care visits.

“I have a lot of patients who had not done preventive care for years because of the medical stigma,” she said.

Billing Headaches

Clearing the access hurdles to HIV prevention medicine was just the beginning. Hurley started receiving a string of bills for PrEP-related care. Blood test: $271.80. Office visit: $263.

Again, Hurley was surprised. They knew — even if the billing office didn’t — that under the most private insurance plans and Medicaid expansion programs are PrEP and ancillary services, , as preventive with no cost sharing.

The bills for doctor visits and blood draws piled up.

Hurley would appeal the bill and get a denial almost every time. Then, they would appeal again.

Hurley shared a series of appeal letters for one service, in which the billing office acknowledged that blood work had been initially incorrectly coded as diagnostic. Once that was corrected, Hurley said, the insurer paid for the service.

That might sound quick or easy to resolve, but Hurley said it took “forever to get through the process.” They dealt with at least six incorrect bills over several months. Hurley estimated they spent more than 60 hours contesting the bills.

During that time, Hurley said, the billing department “is continuing to send me emails and bills that are saying, You’re overdue. You’re overdue. You’re overdue.”

Fed up with the hassles, Hurley decided to find a health provider (and billing office) better informed about PrEP. They settled on the AIDS Healthcare Foundation. The care team there was able to discuss the pros and cons of different PrEP regimens and knew how to navigate the formulary for Hurley’s insurance.

Hurley hasn’t gotten an unexpected bill since.

But siloing sexual health care and PrEP off from primary care hasn’t been ideal.

“I have multiple organizations that I have to deal with to get my holistic health dealt with,” Hurley said.

A provider doesn’t need to be an HIV specialist, an infectious disease expert, or a physician to prescribe PrEP. The Centers for Disease Control and Prevention encourages primary care providers to treat PrEP like .

To avoid some of the headaches Hurley faced, try these tips:

1. Find out if PrEP is right for you.

The CDC estimates Americans could benefit from HIV prevention drugs, but just over a quarter of that group have been prescribed them.

“Not enough people know about PrEP, and there are a number of people who know about PrEP but do not realize it’s for them,” said Jeremiah Johnson, executive director of PrEP4All, an organization dedicated to universal access to HIV prevention and medication.

According to the CDC’s clinical guidelines, PrEP can be prescribed as part of a preventive health plan to . It’s especially recommended for people who don’t use condoms consistently, intravenous drug users who share needles, men who have sex with men, and people in relationships with partners living with HIV or whose HIV status is unclear.

The vast majority of PrEP users are men. There are big race, gender, and geographical of HIV and the populations taking the prevention medicine. For example, based on the patterns of new infection in the U.S., a group that would benefit from PrEP is cisgender Black women, whose gender identity aligns with their sex assigned at birth.

2. Don’t assume your provider knows about PrEP.

If your doctors aren’t well informed, start by . There are also clinical guidelines and information you can share with your provider. Check your state or local health department for a how-to guide for prescribing PrEP. For example, the New York State Department of Health AIDS Institute has information .

The , but many of the agency’s websites dealing with LGBTQ+ health are in flux. Under the Trump administration, some HIV/AIDS resources have been taken down from federal websites. Others now have : “This page does not reflect biological reality and therefore the Administration and this Department rejects it.”

3. Get lab work in-network.

Johnson said Hurley’s experience with billing mistakes is common. “The lab expenses in particular end up being very tricky,” Johnson said.

For example, a doctor’s office may mistakenly code the lab work required for PrEP as a instead of preventive care. Patients like Hurley can end up with a bill they shouldn’t have to pay. If your doctor’s office is making mistakes, share the from NASTAD, an association of public health officials who administer HIV and hepatitis programs.

Try to get your lab work done in-network. If the lab is out-of-network, Johnson said, it can be difficult to appeal.

If the bills keep coming, appeal them. And if you can’t resolve the dispute, Johnson said, file a complaint with the agency that regulates your insurance plan.

4. Look for ways to save.

There are different kinds of PrEP. There are lower-cost, generic versions of Truvada, for example, sold as emtricitabine/tenofovir disoproxil fumarate, often shortened to FTC/TDF. Newer PrEP drugs have list prices in the thousands of dollars. Check your insurance formulary and ask your doctor to prescribe medicine your plan will cover.

With many health care premiums dramatically increasing and millions at risk of losing Medicaid coverage, many people may go without health insurance this year. Drug manufacturers such as and have assistance programs for qualifying patients. If you have to pay out-of-pocket, prescription price comparison websites, like GoodRx, can help you find the pharmacies with the cheapest price.

5. Consider telehealth.

Telehealth is an option if you don’t live near an affirming provider or are looking for a more private way to get PrEP. In 2024, roughly 1 in 5 people on PrEP used telemedicine. Online pharmacies like and offer PrEP without an in-person appointment, and lab work can be done at home. Some telehealth options have ways to if you’re uninsured.

Telehealth can also broaden the number of doctors who are ready to prescribe PrEP. And some patients say speaking with a remote provider feels like a safer setting to talk about sexual health. “They’re in the comfort of their own bedroom or living room but can interface virtually with a provider. It can open up a lot of doors for honesty and trust,” said Alex Sheldon, executive director of GLMA.

6. Seek out affirming care.

GLMA created the , a searchable database of health care providers across the nation who identify as queer-friendly. As Hurley discovered, living in a major metro area is no guarantee your doctor is up to date on LGBTQ+ health care.

Ask locals you trust for recommendations. You might be surprised to find good options nearby.

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Weiser spoke with Â鶹ŮÓÅ Health News on the evening before World AIDS Day, which the U.S. government, for the first time since 1988, didn’t acknowledge this year. That was only the latest blow to efforts to combat HIV. The Trump administration has to provide lifesaving HIV care abroad, withheld money to prevent and treat HIV in the U.S., and fired HIV experts at the Centers for Disease Control and Prevention.

Weiser was fired from the CDC during mass layoffs in April, was rehired in June, and then resigned. He continues to treat patients at Grady Memorial Hospital in Atlanta. In November, he published an against complying with presidential orders to censor data about transgender people.

The following conversation has been condensed and edited for clarity.

LISTEN: Former CDC official John Weiser speaks with Â鶹ŮÓÅ Health News correspondent AmyÌýMaxmenÌýabout his resignation from the agency and whyÌýhe thinks complying withÌýPresident Donald Trump’s orders to erase transgender people is bad for science and society.Ìý

In the first weeks of his presidency, Donald Trump issued with implications for HIV programs. One directed federal employees to exclude gender identities that didn’t correspond to a person’s biological sex assigned at birth.

On how this played out at the CDC:

We were told to scrub any mention of gender or transgender people from dozens of research papers and surveillance reports that had already been published or were going to be published, and to stop collecting information from participants about their gender identity. For example, we had to recalculate our numbers on HIV among men who have sex with men, or MSM, a category that the CDC changed to “males who have sex with males.”

The CDC had no director at the time. The order came from on high. And there was no discussion about whether we wanted to comply with the directive.

On how this directive has affected his research:

Using data from the Medical Monitoring Project, we found that people with HIV who misused opioids were more likely to engage in behaviors that could pass on HIV to another person — through unprotected sex or shared injection. And we found that very few people who misused opioids were receiving treatments for substance misuse. This information could have been useful to change clinical practice and boost funding to treat people with HIV who misuse opioids.

We were getting ready to publish this study, but when I put the paper through CDC’s clearance process, I was told to remove data about the prevalence of opioid misuse among transgender people.

I thought carefully about that, and I decided not to do that, because it’s bad science to suppress data for ideologic reasons and because erasing people from the story harms actual people. I thought about my transgender patients and how I would face them, and what I would say to them while I’m sitting with them in the exam room, knowing that I had erased their existence from CDC.

I withdrew the paper. It remains unpublished.

On how removing data harms people:

Purging data about transgender people has the effect of erasing them from the real world, pretending that they don’t exist. This group of people is heavily affected by HIV, and this type of information informs improvements in treatment. My transgender patients struggle with poverty, with unstable housing, with food insecurity, with mental health disorders, with substance misuse, and face a huge amount of stigma and discrimination in their daily lives.

My transgender patients are trying to get by, day by day. They’re trying to survive. I think it’s important to realize that somebody who is transgender needs to feel comfortable in their own body to be healthy — and denying them recognition compounds their challenges.

After the executive order came down, one of my patients said she felt even more afraid of being in public and not passing, and so she was considering having additional surgical treatment to feel safer. Her concern was not about politics. It was about survival.

On why the CDC went along with orders to remove transgender data:

I think the hope was that by complying with the directive, other work at the CDC would be spared. And unfortunately, that hasn’t proved to be the case. Funding for the Medical Monitoring Project was terminated after 20 years, and the concern within CDC is that the president will eliminate all HIV prevention and surveillance funding.

One of my concerns while there was that if it’s OK to comply with a directive to remove information about gender, what if the next demand is that we don’t report about people who emigrated from other countries, or on people who are experiencing homelessness? What if there’s a directive to suppress data about a particular racial or ethnic group that’s unpopular? How far would we go?

Some HIV clinics and organizations have considered curtailing their work with transgender people and undocumented immigrants, or on equity initiatives, because they fear the loss of federal funds.

His advice on these decisions:

People making these decisions are in a really tough spot. They want to do what’s best for their programs. They want to do what’s best for their employees. They want to do what’s best for the people they’re charged with taking care of. Those are careful decisions that need to be made weighing all of the considerations. What I want these leaders to do is also consider how a decision to essentially throw one group of people under the bus undermines scientific integrity and harms everyone.

 And I think that it’s also necessary for the rise of autocracy to go along, to compromise, to acquiesce. While all of this was going on, I heard an interview with M. Gessen, who is a Russian American journalist who writes about the rise of autocracy. Gessen explained that decisions to go along are not made because people are unethical or heartless. They’re rational choices. They’re made in order to protect something that’s important — institutions, families, jobs — even if it means sacrificing principles. Gessen’s point is that this gradual process of compromising ultimately is what solidifies an autocrat’s power.

On why he resigned from the CDC:

As a physician working at the CDC, numbers have always described individual people, people whose suffering I witness. When you know somebody, they’re no longer just a concept that you make a judgment about.

I realized that I could do more good by spending more time with my patients than I could working for the CDC under this administration.

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• Read Pattani’s “An HIV Outbreak in Maine Shows the Risk of Trump’s Crackdown on Homelessness and Drug Use.”

Â鶹ŮÓÅ Health News chief Washington correspondent Julie Rovner discussed rising health insurance costs on The Middle With Jeremy Hobson’s One Thing Trump Did on Nov. 20.

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

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Vought has exerted extraordinary control over government spending this year, usurping congressional decisions on how the nation’s money is used. His push for more layoffs during the government shutdown is only the latest blow, following months of firings, canceled grants, and withheld funds.

By cutting and freezing public health funds, in particular, the Trump administration has already begun to undercut efforts to provide medical care, outbreak response, housing assistance, and research across the U.S., according to health officials, nonprofit directors, and federal agency staffers interviewed by Â鶹ŮÓÅ Health News.

Since most federal funds for public health flow to states, Vought is rivaling the Department of Health and Human Services secretary, Robert F. Kennedy Jr., in his ability to upend government-led efforts to keep Americans healthy. In Texas, Centers for Disease Control and Prevention funds to stem a measles outbreak weren’t available until after the crisis had subsided and two children had died. A project to protect Alabamans from and hookworm was abandoned. People with HIV have had to delay medical care as clinics scale back hours. Time-dependent surveys on HIV and were halted. Food banks have canceled events. Tobacco prevention programs lapsed. Initiatives to protect older adults at risk of falling have been harried.

No matter what budget Congress ultimately passes for next year, the Trump administration may continue to thwart financial support for such programs in ways that will harm people’s health. “The White House has shown that they are willing to unilaterally exert control over funding,” said Gillian Metzger, a constitutional law professor at Columbia University.

“This is a huge deal,” she added, “because the power of the purse is central to Congress’ ability to shape and direct policy.”

Before he was appointed to lead the White House’s Office of Management and Budget this year, Vought outlined budgetary strategies the executive branch could deploy to wrest power from Congress and federal agencies in Project 2025, the Heritage Foundation’s conservative blueprint.

Vought’s tactics unfolded this year, often . They include abrupt grant cancellations, extraordinary constraints on how funds can be spent, and excessive layers of review, agency officials say, at every step in the grantmaking process. Getting money out the door has been further complicated by layoffs that have gutted offices overseeing grants on chronic disease prevention, HIV, maternal mortality, and more.

Government employees have described these tactics to members of Congress, said Abigail Tighe, executive director of the National Public Health Coalition, a group that includes current and former staffers at the CDC and HHS. “We want Congress to act, because this is preventing states and communities from doing critical public health work to keep our country safe,” she said. “If they don’t have capacity, we all collectively suffer.”

Democrats on the House and Senate appropriations committees have , but the extent to which money Congress appropriated for public health in 2024 and 2025 has gone unspent because of the administration’s disruptions is not yet known. “This is a sophisticated strategy to cause money to lapse and then say, ‘If they can’t spend it, they don’t need it,’” said Robert Gordon, a public policy specialist at Georgetown University and a former assistant finance secretary at HHS.

“No one thought this was possible or legal, but that is what’s happening,” he said.

Details on how the administration has subverted health spending have received little attention because many changes have been — and people who rely on federal funds fear retribution. The Trump administration has and federal offices that hold the government accountable and . It has abruptly revoked funds for local governments and organizations.

Vought and spokespeople at the White House and the OMB did not respond to queries from Â鶹ŮÓÅ Health News. However, Vought described his intentions in a . He said that federal agencies and Congress had gained more power over spending since the 1970s and that their control became “woke and weaponized” under Presidents Barack Obama and Joe Biden.

“Thankfully, President Trump won,” he said. “And we have now been embarked on deconstructing this administrative state.”

Many Parts, Many Malfunctions

Like a car, the federal budget process has many components that can break down. Through the OMB and its partner, Trump’s Department of Government Efficiency, or DOGE, the administration has intervened at various junctures. “There are so many ways in which money is not operating in the way it is supposed to operate,” said Bobby Kogan, the senior director of federal budget policy at the Center for American Progress, a left-leaning think tank, and a former OMB adviser.

Typically, Congress passes a budget that appropriates money for the next fiscal year to federal agencies. For many public health programs, ranging from housing assistance to cancer screening, agencies then post open calls online for states, local governments, and organizations to apply for funding. Agency experts select winners and send notices of awards — or notices of ongoing funding to groups that previously won multiyear awards.

Next, the OMB, which administers the federal budget, activates money for agencies, like a bank activates a credit card, so that grantees can spend and get reimbursed rapidly. Auditors keep an eye on spending, but the government has in the past limited interruptions so that programs run smoothly.

Early on, the Trump administration canceled billions of dollars in awards granted in 2024 and early 2025 for research and . In March, it $11.4 billion in covid-era funds that Congress had earmarked for health departments that were using the money for disease surveillance, vaccinations, and more.

Although some funds have been restored because of lawsuits, the Supreme Court has allowed by the administration to stand while the cases move through the courts.

Beyond these “shotgun” cancellations, the administration has taken a quieter, “in-the-weeds, slowing, cutting, conditioning” approach that’s frozen funds for public health, said Matthew Lawrence, a law professor specializing in health policy at Emory University.

By August, the CDC’s center for HIV and tuberculosis prevention had doled out $167 million less than the historical average, according to by the Center on Budget and Policy Priorities, a think tank focused on reducing inequality. The CDC’s funding for chronic disease prevention lagged by $259 million, the Ryan White HIV/AIDS Program had underspent by $105 million, and funds for mental health at the Substance Abuse and Mental Health Services Administration were more than $860 million behind what was expected.

An unknown amount of Congress’ 2025 funding for research and public health has yet to be awarded and will probably lapse this year, said Joe Carlile, an author of the center’s analysis and an associate OMB director during the Biden administration. The obstructions appear to be where the White House proposed cutting the federal budget next year. “The administration may be executing their 2026 budget request through administrative controls,” Carlile said.

“This is boring but crazy-high stakes,” he added. “A one-branch veto of spending neuters the power of the purse in the Constitution that Madison said was the fundamental check on the executive branch.”

Incremental Chaos

A key tactic Vought described in Project 2025 occurs when the OMB activates funds for agencies in installments, called apportionments. Vought wrote that “apportioned funding” could “ensure consistency with the President’s agenda.”

Under Vought, the OMB shrank the size of apportionments, HHS and CDC staffers said. It’s to let grantees withdraw money before the total amount is in the metaphorical bank, so that delayed agencies’ ability to greenlight spending.

The OMB and DOGE also placed conditions on apportionments through memos, footnotes, and spoken directives telling agencies to ensure that spending “aligns with Administration priorities,” and HHS employees who said that notices of funding opportunities and awards required excessive layers of sign-off. The CDC and other agencies circulated that reflect White House stances, including those targeting diversity, equity, and inclusion efforts; immigration; and transgender rights. Public health efforts have been especially caught up in red tape, since many focus on populations bearing an unequal burden of death, disease, and injury.

Groups that rely on federal funds have largely been unaware of the reasons grants were held up, but they’ve fielded what they viewed as unsettling queries. For example, Kathy Garner, the head of a Mississippi nonprofit, said officials asked her to defend the exclusion of men from a program to shelter women who experienced domestic violence.

Delays were made worse by uncertainty. Grantees said they’ve been unable to reach program officers because tens of thousands of federal workers have been laid off. Agency officials said firings slow funding further.

“Everyone’s inbox is full of letters from grant recipients asking, ‘How do we proceed?’” one high-ranking CDC official told Â鶹ŮÓÅ Health News, which granted agency officials anonymity because of their fears of retaliation. “We just say, ‘Please wait.’”

Time was critical as a measles outbreak surged in West Texas early this year. The state asked for federal funding for the response in March, but it didn’t arrive until May, after the outbreak had largely faded in Texas, according to an investigation by Â鶹ŮÓÅ Health News. Apportionment control was a key reason, CDC staffers said.

In July, 81 HIV organizations sent a letter to Kennedy. “With every day of delayed FY2025 funding release, the delivery of essential HIV services is compromised,” said the letter, which was reviewed by Â鶹ŮÓÅ Health News. Because of delays and uncertainty, it said, HIV clinics had laid off case managers and reduced clinician hours, closed sites, and pared down hotlines that patients call with urgent questions. The funds arrived about a month later, but HIV providers remain shaken.

Lauren Richey, medical director at University Medical Center’s HIV clinic in New Orleans, backed out of hiring a sorely needed dentist she had recruited. “I was afraid to tell someone to move across the country for a job when I wasn’t sure if or when we’d get the funding for their salary,” she said. “The wait is now three to four months for dental services, when it was usually a couple of weeks at most.”

Tamachia Davenport, program director at the in New Orleans, said that “a lot of us are having to rob Peter to pay Paul.”

When the group didn’t get CDC funds it expected this summer, Davenport had to decide between cutting staff or supplies. Concerned her top employees would take jobs elsewhere, she stopped buying the condoms they distribute throughout the city to prevent the spread of sexually transmitted infections.

Louisiana already has one of the of HIV, chlamydia, and gonorrhea in the country. Condoms cost far less than treating these diseases. For a person infected by HIV at age 35, such $326,000.

Groups focused on cancer, diabetes, and heart disease also report lasting repercussions from delays, as well as ongoing fears that they will happen again. Louisiana State University’s Healthy Aging Research Center canceled some of its workshops to train health workers on caring for people with dementia. “There may be fewer people who have this very specific expertise next year in Louisiana and Mississippi,” said Scott Wilks, the director of the center. “That’s on top of the big shortage we have already.”

Nationwide surveys tallying maternal and froze for about five months because of funding delays, causing an irrecoverable gap in data that had been collected continuously since 1987, CDC officials say.

“We are seeing the administration get their way with or without an approved budget,” one said. “It’s such a terrible shame to play with people’s health this way.”

DOGE also inserted itself into grant reimbursements this year, stalling the rapid turnaround that public health groups typically expect to cover salaries, rent, and other monthly costs outlined in budgets that have already been approved. In what’s now labeled , itemized expenses must be regularly justified by multiple government officials, according to documents reviewed by Â鶹ŮÓÅ Health News.

DOGE posted on expense reports covering about a month’s span from April to May. Nearly 230 of the individual expenses filed to federal agencies during that period are for $1 or less. Other entries break down monthly salaries for individual employees and petty costs for postage or monthly subscriptions.

“Public funds deserve scrutiny, but this is different from audit practices I’ve been a part of,” Carlile said.

DOGE also for applications for 2025 funding — and some calls never appeared as the fiscal year came to a close on Sept. 30. Among them are programs for groups that provide housing assistance. People will be evicted when these organizations run out of money left over from 2024, said Steve Berg, chief policy officer at the National Alliance to End Homelessness.

Other solicitations came out months , leaving groups with a few weeks to put together complicated applications for multimillion-dollar awards, including for , , , and management.

“They’ve set projects up to fail,” one HHS official said.

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Public health experts and local advocates say the outbreak is fueled by a confluence of on-the-ground factors: the sidelining and closing of programs that distributed sterile syringes to people who use drugs, a shortage of medical providers focused on HIV, and the clearing of the city’s largest homeless encampment, which upended care for newly diagnosed people living there.

But those issues may not remain local for long.

The Trump administration is pushing similar tactics nationwide. In a , Trump called for defunding programs that engage in harm reduction — a broad term that encompasses many public health interventions, including syringe services, aimed at keeping people who use drugs alive. Such efforts are sometimes controversial, with critics saying they enable illegal activity. The executive order also supports forcing homeless people off the street and into treatment. This comes after the administration cut or delayed funding for various addiction and HIV-related programs and federal agencies .

The administration says its approach will increase public safety, but suggest otherwise. Many advocates and researchers warn these efforts could spark more outbreaks like the one in Bangor.

“That feels inevitable,” said Laura Pegram, director of for NASTAD, an association of public health officials who administer HIV and hepatitis programs.

She said people who use drugs face a trifecta of risks: HIV, hepatitis C, and overdose. “Across the country, I think we’ll start to see those three things starting to be on the rise again.”

“That will be incredibly costly,” she added — in dollars and “in a real human way.”

Outbreaks that start among people who use drugs can easily spread to those who don’t.

An HIV Outbreak

The first HIV case in Bangor’s current outbreak , well before Trump’s return to the presidency.

Puthiery Va, director of , attributed the emergence to the opioid epidemic, housing shortages, and the greater Bangor area’s sparse health care services.

Local advocates highlighted an additional, acute factor: supply shortages at the region’s largest syringe services program and its subsequent closure.

A nonprofit that provided health care and social services to people who use drugs, Health Equity Alliance, or HEAL, distributed sterile needles annually.

Like other such programs nationwide, its goal was to prevent the spread of infectious disease that can occur if people share needles to inject drugs.

However, financial struggles and mismanagement led to severe shortages in recent years. Former HEAL executive director Josh D’Alessio acknowledged such issues, telling Â鶹ŮÓÅ Health News, “We did run out of syringes” at times or limit how many participants could take. Several of these shortages struck in the fall of 2023, leading HEAL staffers to suggest a link to the first HIV case.

The Future of Harm Reduction

Research suggests a strong connection between past HIV outbreaks among people who use drugs and lack of access to sterile needles, said , an epidemiologist at Tufts University School of Medicine.

A 2015 outbreak in Scott County, Indiana, and one in the a few years later were curbed only after , he said. If such programs had existed sooner in Scott County, more than a hundred infections could have been prevented, .

Va, who leads the Maine Center for Disease Control and Prevention, said she considers the shortage of syringe services in the Bangor area to be a factor in the outbreak but not the primary cause.

Stopka said the best practice during an outbreak “is to amplify access to sterile syringes.”

But Trump’s recent executive order links harm-reduction programs to crime, saying such efforts “only facilitate illegal drug use and its attendant harm.” The order doesn’t name syringe services programs — which have been supported by both Democrats and Republicans in the past — but it targets “safe consumption” sites, where people can use drugs under supervision. the attacks will be broader.

A letter from the nation’s leading addiction agency expanding on Trump’s executive order said federal funds to buy syringes or drug pipes. However, that has been true for most of the past few decades. The letter did not address supporting general operating costs for syringe services programs.

Department of Health and Human Services spokesperson Andrew Nixon told Â鶹ŮÓÅ Health News that the administration is committed to “addressing the addiction and overdose crisis impacting communities across our nation.” But he and spokespeople for the White House did not respond to specific questions about the administration’s stance toward syringe services.

In Bangor, some locals have raised concerns about harm reduction that echo the president’s. At a — shortly after a syringe services program was newly certified by the state to operate locally — residents and business owners said they felt unsafe with the growing population of people who were homeless and using drugs. They worried syringe programs were fueling the behavior.

But research suggests syringe services programs in the community and . They new HIV and hepatitis C cases, into addiction treatment fivefold, . They are also of overdose reversal medications, the use of which many communities — and the Trump administration — have said they support.

The city ultimately decided the newly certified program, , could not operate in prominent public parks or squares.

In the following months, Needlepoint ran its syringe services only at the city’s largest homeless encampment, where several people had tested positive for HIV, said the group’s executive director, William “Willie” Hurley. That ended in February when the city cleared the encampment.

This summer, Needlepoint secured a private location for its syringe services but shut it down five days later when city officials .

, director of Bangor’s health department, said the city is trying to strike a balance between “making services available and what the community wants.”

“Getting the buy-in of most of the community” is “critical to the future of harm reduction,” she said.

Other cities have seen backlash result in new laws that restrict how syringe services programs operate or shutter them.

Gunderman said she is hoping to avoid that in Bangor.

Clearing Encampments

Trump’s recent executive order also calls for clearing homeless people off the street and involuntarily committing them to treatment facilities.

The administration is enacting this policy in Washington, D.C., where it has and threatened homeless people if they don’t leave the streets.

White House spokesperson Abigail Jackson said people have the option to be taken to a shelter or receive addiction and mental health services.

Similar policies have taken hold nationwide in recent years, even in liberal hubs like and .

Last year in Bangor, as a homeless encampment that grew to nearly 100 residents, business owners and locals called for its clearing.

Some advocates and social service providers warned that doing so could exacerbate the HIV outbreak and overdose crisis. At two City Council meetings in November, that it would be difficult to find people they served after a clearing and that scattering newly diagnosed people HIV clusters elsewhere.

“Plenty of people said you’re going to lose track of these people,” , a board member for the Bangor Area Recovery Network, told Â鶹ŮÓÅ Health News. “They did it anyway.”

‘I’m Still Alive’

Two months after clearing the encampment, not knowing the location of more than a third of the people who had lived there.

Clark said it’s not surprising that the city couldn’t connect everyone to housing or treatment. Many people distrust these services, shelters are frequently full, and treatment services are scarce. “Where exactly are these people supposed to go?” she said.

City officials stressed in Council meetings and reports that they were taking a humane approach. They ramped up social services for months leading up to the clearing, connecting people to everything from housing to storage facilities and laundry.

Gunderman, the city health director, said she knows the sweep wasn’t ideal but that neither was crowding folks in an unsanitary encampment. “It was a situation where there weren’t a lot of great answers,” she said.

To help track folks from the encampment and keep them engaged in HIV treatment, the city is now using about to hire two case managers. (The only other local HIV medical case management program .)

“What we know from outreach we’ve been doing already is that we spend a lot of time looking for people,” Gunderman said.

Jason, who has been homeless for most of the past decade and tested positive for HIV this year, has seen that in action.

Members of what he calls his medical team have scoured the streets for hours to find his tent and remind him to take his HIV treatment shots, he said. Some picked up prescriptions and delivered them to him.

“They’ve made sure I’m taken care of,” Jason said. (Â鶹ŮÓÅ Health News agreed to use only his first name to protect his privacy.)

Jason believes he got the virus last year at the homeless encampment while using drugs that someone else prepared. He had tried to avoid the encampment for months. But whenever he set up his tent elsewhere, he said, police officers told him to move.

When he got the diagnosis, he thought of his uncle, who died of AIDS in the 1980s.

“It hurts to talk about,” Jason said, “but I’m still alive.”

After months of treatment, his viral load is . Over the summer, his team helped him find housing.

But Jason is still struggling to find sterile needles regularly. He worries about others facing a shortage.

“That’s how this outbreak has been spreading more and more,” Jason said. “Every time we turn around there’s another case.”

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Their work includes major agency priorities such as HIV testing and monitoring, as well as work at the nation’s leading sexually transmitted infections lab. And while employees are back, many projects have been canceled or stalled, as funding disappears or is delayed.

“For a while, work was staring at a blank screen,” an HIV scientist said. “I had a couple of projects before this. I’m trying to get them restarted.”

“We don’t know what’s happening or what to do,” said an HIV prevention researcher who was fired then rehired.

These employees voiced deep concern over the future of the agency and its work on HIV and other threats. The unprecedented downsizing could lead to loss of life and higher spending on medical care, they say. Their uncertain employment status has sunk morale. Many worry about the future of public health.

On Aug. 8, a gunman identified by Georgia authorities as Patrick Joseph White fired shots at CDC buildings in Atlanta. A first responder on the scene, DeKalb County police officer David Rose, was killed. White, who was found dead, was possibly motivated by his views on vaccines, according to news reports.

The attack added another level of anxiety for agency workers.

“We feel threatened from inside, and, obviously, now from outside,” a lab scientist said Aug. 10. “The trauma runs so differently in all of us. And is this the last straw for some of us? The overall morale — would you go back in the building and you could be shot at?”

Healthbeat interviewed 11 CDC workers, who offered a rare glimpse into conditions at the agency. All but one had been fired then offered their jobs back. Most have worked on HIV-related projects for at least several years. All spoke on the condition of anonymity, citing a fear of retaliation.

They fear their employment, in the HIV scientist’s terms, “is on shaky ground.”

“I’m concerned there is chaos and that we lost ground on HIV prevention” from reductions in data collection and layoffs of local public health workers, an HIV epidemiologist said. “I feel like a pawn on a chessboard.”

HHS spokesperson Emily Hilliard responded to a query with this statement:

“Under Secretary Kennedy’s leadership, the nation’s critical public health functions remain intact and effective. The Trump administration is committed to protecting essential services — whether it’s supporting coal miners and firefighters through NIOSH, safeguarding public health through lead prevention, or researching and tracking the most prevalent communicable diseases. HHS is streamlining operations without compromising mission-critical work. Enhancing the health and well-being of all Americans remains our top priority.”

The workers received some positive news July 31, when a Senate committee voted to keep CDC funding at more than $9 billion, near its current level. “It is very encouraging, but that’s only one step in the appropriations process,” the HIV researcher said.

Still, under the Trump administration’s budget request, the CDC’s programs on HIV face uncertainty. John Brooks, who retired as chief medical officer of the CDC’s Division of HIV Prevention last year, expressed concern over the Ending the HIV Epidemic initiative. Launched in President Donald Trump’s first term, it “breathed new life into HIV prevention,” Brooks said.

The successes of the Ending the HIV Epidemic initiative are jeopardized by the administration plan to scale back HIV prevention efforts, Brooks said. That would include the potential elimination of the CDC Division of HIV Prevention, which provides funds to state health departments and other groups for testing and prevention, conducts HIV monitoring and surveillance, researches HIV prevention and care, and assists medical professionals with training and education.

“There is no way to achieve the goals of EHE without maintaining the national prevention infrastructure it depends on,” Brooks said. “There is every reason to worry that in fact new HIV infections will rise again.”

Under Secretary Robert F. Kennedy Jr., the Department of Health and Human Services carried out widespread layoffs at the CDC and other health agencies beginning in early April. Lawsuits over those mass firings are playing out in federal courts.

The administration’s budget blueprint would move CDC HIV work — with many fewer employees, according to people Healthbeat interviewed — to the Administration for a Healthy America, a new HHS division Kennedy has championed.

The Medical Monitoring Project, which tracks outcomes, quality, and gaps in HIV treatment, is set to be a casualty under the Trump restructuring plan, an HIV prevention physician said.

HHS officials have not communicated with the rank and file about the restructuring, several CDC workers said.

“It’s been crickets,” the HIV scientist said.

The White House’s proposed CDC budget for the next fiscal year contains a cut of more than 50%, plummeting from $9.2 billion in fiscal year 2025 to about $4.2 billion, according to administration documents and public health advocacy groups, with some agency functions transferred to the proposed AHA. The Senate committee, by an overwhelming vote, injected billions back into the agency budget and declined to fund the AHA.

U.S. Sen. Jon Ossoff, a Georgia Democrat, thanked the committee for “rejecting the unacceptable effort to defund most of the CDC.”

“The budget request from the White House included a 56% cut to the world’s preeminent epidemiological agency,” Ossoff said. He also criticized a “systematic destruction of morale at the CDC, the disbandment of entire agencies focused on maternal health and neonatal health and disease prevention at the CDC.”

If the White House prevails and the prevention program is eliminated, “we would see most states have no funding for HIV prevention,” said Emily Schreiber, senior director of policy and legislative affairs for the National Alliance of State and Territorial AIDS Directors. “That means most states would not be able to conduct any HIV testing, any referral to care, and/or referral to preventive services like PrEP,” or pre-exposure prophylaxis, a drug that .

“It means that states would not be able to help people get access to medications,” she said, “and that means that we would see new cases and an increased spread of HIV across the United States.”

“We would definitely see layoffs at the CDC, and I think we’d probably see them at state health departments and community-based organizations as well,” she added.

The Los Angeles County Department of Public Health has recently laid off or reassigned dozens of HIV workers due to funding problems, according to a statement emailed to Healthbeat.

“I fear all HIV prevention work will go away permanently,” the HIV prevention researcher said. “I don’t think this administration wants HIV prevention work to be done by the federal government.”

Georgia leads U.S. states in the rate of new HIV infections, according to the latest data from . CDC workers also said they’re concerned that vulnerable communities of color and LGBTQ+ communities would be deeply harmed by funding cuts.

In Georgia and other states, information provided by the Medical Monitoring Project about access to care will disappear, the HIV physician said. Information on prevention and treatment will dwindle for people who are disadvantaged, he said, including those with substance abuse problems or mental illness, transgender people, and those living in poverty.

“There is a lot of anger and sadness among people over the termination of the project,” the physician said. “A lot of the enthusiasm is gone.”

An effective home testing program for HIV plans to shutter this fall, said Patrick Sullivan, the project’s lead scientist and a professor at Emory University’s Rollins School of Public Health. In its notice canceling funding for the project, the CDC said it no longer had the staff to oversee it. Based at Emory, the project delivered more than 900,000 free home testing kits to people across the country through an easy-to-use website and integration with dating apps.

More than 100 HIV workers were among the more than 450 CDC staffers brought back, said employees interviewed by Healthbeat. Some cited , support in Congress, and advocacy by patient groups and pharmaceutical companies for their reinstatement. “Members of Congress are going to bat for HIV,” the epidemiologist said.

Several are closely watching a lawsuit brought by 20 Democratic attorneys general, seeking to halt an agency restructuring plan Kennedy . They are also paying attention to a lawsuit filed in California that challenges the firings.

A few people whose jobs were restored have retired or moved on to other work. “Some people aren’t trusting we will remain, so they’re leaving,” the HIV prevention researcher said.

At the CDC’s sexually transmitted infections lab in Atlanta, work has also slowed due to a shrinking staff and new spending constraints on supplies, the lab scientist said.

Restored lab workers are focusing on high-priority areas such as syphilis and gonorrhea while other diseases have been back-burnered, the scientist said, adding “a lot of what we were doing was staying ahead of the next pathogen, and we feel like our time and effort to do that now is limited.”

“We’re all public health because we know what the mission is,” the scientist said. “We just want to get our job done and protect the American public.”

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In his ongoing effort to reshape health policy, Secretary of Health and Human Services Robert F. Kennedy Jr. reportedly plans to overhaul two more government entities: the U.S. Preventive Services Task Force and the National Vaccine Injury Compensation Program. Ousting the existing members of the task force would give Kennedy a measure of control in determining the kinds of preventive care that are covered at no cost to patients in the United States. And while it’s unclear what the secretary would do to the vaccine injury program, Kennedy has made no secret of his belief that vaccines can do more harm than good.

Meanwhile, last week marked the 35th anniversary of the Americans with Disabilities Act, and President Donald Trump signed an executive order that would enable local and state governments to forcibly hospitalize some people who are homeless and struggling with mental health problems.

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

Panelists

Among the takeaways from this week’s episode:

• Less than two months after Kennedy removed all members of the Advisory Committee on Immunization Practices, he is reportedly considering a similar purge of members of the task force that recommends the preventive services insurers must cover — a list whose services, some of them controversial among Trump officials, include drugs that prevent HIV and certain cancer screenings. He is also considering changes to the federal program that compensates people who experience adverse effects from immunizations.
• This week Vinay Prasad, the Food and Drug Administration’s top vaccine official, resigned just months into his tenure. Prasad had come under attack, notably by right-wing personality Laura Loomer, and had been blasted for some agency decisions about new drugs for rare diseases — despite his work limiting the use of covid shots.
• Trump’s newly announced trade deal with the European Union includes a 15% tariff on brand-name pharmaceuticals, which would include, for example, the diabetes drug Ozempic, often used for weight loss. But it would be difficult to lower prices on brand-name drugs through tariffs; it is unlikely that drugmakers, facing higher import costs, would relocate production to the United States.
• Also, Trump’s big tax and spending law, hastened through Congress weeks ago, renders some lawfully present immigrants ineligible for Affordable Care Act subsidies. But a new Â鶹ŮÓÅ Health News column points out that the change would actually raise premiums for everyone else, taking more healthy people out of the insurance pool.

Also this week, Rovner interviews George Washington University health policy professor Sara Rosenbaum, one of the nation’s leading Medicaid experts, to mark Medicaid’s 60th anniversary this week.

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

Julie Rovner: Â鶹ŮÓÅ Health News’ “Cosmetic Surgeries Led to Disfiguring Injuries, Patients Allege,” by Fred Schulte.

Anna Edney: The Washington Post’s “,” by Stefanie Dazio.

Joanne Kenen: ScienceAlert’s “,” by David Nield.

Shefali Luthra: The New Yorker’s “” by Burkhard Bilger.

Also mentioned in this week’s podcast:

• The New York Times’ “,” by Christina Jewett.
• Â鶹ŮÓÅ Health News’ “Lawfully Present Immigrants Help Stabilize ACA Plans. Why Does the GOP Want Them Out?” by Bernard J. Wolfson.
• The Texas Tribune’s “,” by Eleanor Klibanoff.

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]Ìý

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for Â鶹ŮÓÅ Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, July 31, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go.Ìý

Today we are joined via videoconference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine.Ìý

Joanne Kenen: Hi, everybody.Ìý

Rovner: Shefali Luthra of The 19th.Ìý

Shefali Luthra: Hello.Ìý

Rovner: And Anna Edney of Bloomberg News.Ìý

Anna Edney: Hi.Ìý

Rovner: Later in this episode we’ll have the second of our two-part series marking the 60th anniversary of Medicare and Medicaid, which was yesterday, for those keeping track. This week, Sara Rosenbaum of George Washington University, one of the nation’s leading Medicaid experts, takes us through the history of that program and what the next 60 years could bring. And if you want to hear more from both our Medicare and Medicaid experts, we’re going to put the full-length versions of both interviews together for a special episode later in August. But first, this week’s news.Ìý

Before we start, I hope you’ll bear with me this week. I slipped and fell and broke my wrist. So my typing and some of my thinking skills are a little lacking at the moment. But on this week of the 35th anniversary of the Americans With Disabilities Act, which we will talk about in a few minutes, I am very grateful for all the various technological advances that are now available to those of us with disabilities, whether permanent or temporary, and which allowed the podcast to actually come to you this week. So, now, here we go.Ìý

It was another busy week at HHS [the Department of Health and Human Services]. Secretary Robert F. Kennedy Jr., having already fired all the members of the vaccine advisory board, is reportedly now taking aim at the U.S. preventive health services task force. Now, this was not wholly unexpected. When the Trump administration switched sides on that lawsuit over the task force brought in Texas earlier this year, we assumed that RFK Jr. wanted to do something exactly like this. Right, Shefali?Ìý

Luthra: We certainly did, because it wouldn’t have otherwise made a lot of sense to argue that they could continue to make recommendations unless, perhaps, RFK Jr. wasn’t going to listen to them. It just, once again, really bears noting that this was something many people discussed as a likely possibility, given his record, when he was nominated to be secretary. And there were some senators who suggested that perhaps he had made individual promises, commitments, to actually keep the expert panels in place. And here we are. He did not do that.Ìý

Rovner: Yeah. And we should say he has, at least as of this moment, he has not yet fired all of the members, but certainly there are indications that he’s considering it. And obviously that was what they argued to the court, was that, Hey, it’s OK for the Senate not to confirm the members of this task force, because the secretary has control over them. So here’s the secretary suggesting that he’s going to take control over them.Ìý

Edney: And now the senators show support for the task force. It’s just this circle that keeps on going where they need to try to bolster the backing, but the writing was on the wall when they voted to confirm him.Ìý

Rovner: Well, apparently the secretary isn’t finished with vaccine policy, either. He’s also taking aim at the 1980s-era Vaccine Injury Compensation Program, or VICP. That’s what provides a no-fault way for people injured by vaccine side effects to get compensation for those injuries. This program was literally created to prevent the vaccine industry from going out of business in the 1980s because it was being sued into oblivion. I know that RFK Jr. said the program is, quote, “broken” and he intends to, quote, “fix it.” But does anybody have any idea what he might be planning for it? I will remind people, like, I’m shouting into the wind, that this was an act of Congress created by Congress, reformed by Congress. I don’t know whether the secretary can just take it apart on his own.Ìý

Kenen: He can try, or leave it intact but create some kind of barriers to filing, or—Ìý

Rovner: Actually, I think he wants to make it easier for people to get compensation.Ìý

Kenen: He wants it easier to get compensation. We don’t know what it will do. But they keep finding workarounds or just ignoring things. So we can’t say we can or cannot do, because we don’t know what they’re going to do. But his whole health persona really is built on the fact that he believes that vaccines are damaging or dangerous and they kill more people than they save. And therefore, apparently all of us could just get a payout because we had a shot. But it’s not as much of a moneymaking business in general, not for a specific new shot, but vaccination is not as profitable as the public may perceive. Yes, the covid shots, there was some exceptional things about the speed and scale, etc.—Ìý

Rovner: Right. Because everybody got one at the same time.Ìý

Kenen: And they’re subsidized, etc., or some of them were. So Anna knows more about this than I do. Basically, it was designed to both protect people who were — nobody, even the strongest pro-vaccine people, nobody denies that there is such a thing as an injury. They would say it’s rare and not autism, but when it is, it is rare, but someone should get compensation and the care they need.Ìý

Rovner: And Anna, we’re really looking at the potential for some of these vaccine makers to just say, We’re going to wash our hands of making vaccines. Right?Ìý

Edney: Yeah, absolutely. The point of this program was to, like Joanne said, admit that there can be injury but to make it no-fault so that the vaccine makers could continue providing vaccines for the majority of people who respond well to them and to not be caught up in court battles for millions and billions of dollars all the time. And there may be some complaints, but it does seem that people, by and large, are able to get some compensation from this. And you mentioned covid vaccines. Those aren’t included in this program, so that may be something he is looking at, because they’re done through a different program, which is maybe some complaints about it or that it’s a little less likely to pay out or to give as much compensation. And so maybe a way of expanding it is to include the covid vaccines. But if it becomes that — Well, you can keep using this program, but we’re also going to make it easier to sue the vaccine makers — we’re going to see the companies be wary of being involved in providing vaccines at that point.Ìý

Rovner: Well, in still more vaccine-related news, the controversial head of the FDA’s [Food and Drug Administration’s] vaccine division resigned unexpectedly this week. Anna, tell us why Vinay Prasad was so controversial. And why did he leave after only three months on the job?Ìý

Edney: Yeah, this was a huge amount of drama at the FDA. So Prasad himself can be a polarizing figure. He has been at UCSF [the University of California-San Francisco] for a long time and gained prominence as someone who criticized the agency for what’s called accelerated approvals, getting certain drugs, particularly cancer drugs, quickly to patients even when they hadn’t proven necessarily that they worked. And he criticized that program. He got to the FDA. He was head of the vaccines division, which also covers biologic drugs. And under this division was a drug made by a company called Sarepta. Every one of their drugs that has come to market has had a lot of drama surrounding it because these are drugs for very, very sick, usually young boys who have Duchenne muscular dystrophy, and it’s a huge parent population that wants these drugs, even when maybe they don’t always show that they work very well.Ìý

Well, a few kids have unfortunately died while taking these drugs in recent months, and so the FDA was looking at that, and it came out that there was another death in a clinical trial of an older gentleman, and no one knew definitely if it was related to the drug. And so once that became public, it’s not like the FDA or the company came out with it, but once it became public, the FDA kind of seemed to overcorrect and try to have the drug be paused, and then maybe take it off the market. And so Vinay Prasad was at the center of this debate. Already he was disliked by some of [President Donald] Trump’s higher-up people, particularly Laura Loomer. We may have heard her name before.Ìý

Rovner: We have.Ìý

Edney: She goes after some nominees, successfully in many cases. And Rick Santorum also got involved at this point. He has a daughter with a rare disease and didn’t like the way that this rare-disease drug was being treated. So essentially Prasad, who clearly for the last several years has only wanted to be at the FDA, has left after three months, was pushed out after three months.Ìý

Rovner: Wow. It’s quite the drama. I’ll link to or two if you actually want to go deeper.Ìý

Kenen: But one of the criticisms that Laura Loomer had is that he used to be a Democrat.Ìý

Edney: Right.Ìý

Kenen: Well, that would also apply to RFK Jr.Ìý

Edney: Right. That’s true.Ìý

Rovner: It would. Oh, I’m sure the drama, both at FDA and at HHS writ large, is far from over. Well, speaking of turning the clock back, President Trump issued a new executive order that would end the, quote, “housing first” policy that has driven homelessness strategy since the late 1990s. I guess this is also not a surprise. Trump complained repeatedly on the campaign trail about how homeless encampments were destroying cities. We’ve had a recent Supreme Court case on this, but this new policy seeks to not just allow but encourage localities to force at least some homeless people off the streets and into residential treatment. I imagine this is going to make for another long line of lawsuits, right?Ìý

Kenen: Well, there’s housing first itself. It’s not without controversy. There’s a philosophical divide. Housing first means you house people and then you deal with their social and economic and physical and psychological and drug abuse, etc. Get a roof over their head and then you deal with everything else. Other people say, No, get them into treatment and stabilize them, and then you put them in housing, and they have to … Housing first has been the dominant philosophy in addressing homelessness in recent years. That’s a different debate. This is, like, put them in an institution against their will, which the courts have power to do in limited cases. There are times when a court can say, This individual doesn’t want to be hospitalized, but for their own safety they really need to be. But that’s one by one and not that common, and it’s limited. I believe it’s 30 days. I might be wrong about that.Ìý

But this is a whole different thing. It’s a combination of this, We’re going to force them into institutional settings for treatment, whether they want it or not, combined with the Supreme Court decision of about a year ago allowing cities and local government, not just cities but governments, to forcibly clear away, to dismantle encampments, to force people out. So you have it coming from both the administration’s policies and the court decisions. This creates a whole — and housing money is being cut. Housing assistance is being cut. So you really have this tremendous shift in how we approach homelessness at a time when homelessness is high, while homelessness has been high. And nobody’s saying that there’s not a mental health component for some, but by no means all, people who are homeless. But this is not in accord with how the health and homelessness advocacy and treatment world has been approaching it. This is a significant shift.Ìý

Rovner: And as you point out, this is a health and social service issue, too, because we are seeing money cut and money diverted that, basically this executive order will say, We’re going to give more money to localities that sort of handle this the way we want and less money to others. So I imagine this is going to have trickle-down effects for some time to come.Ìý

Kenen: Yeah. And the clearing the encampments is going on, and we should know it’s not only a conservative state. California has done it. Other states have done it. So the idea of dismantling these — we’ve all seen these encampments — that is happening in various places in the country already, and this is sort of an extra step. It’s not only do you clear them, but this would envision forcing them into treatment, often in an institutional setting.Ìý

Rovner: Well, meanwhile, as I mentioned at the top, this week marks the 35th anniversary of the Americans With Disabilities Act, which I also covered, by the way. Secretary Kennedy spoke at an event marking the occasion on Monday. But an awful lot of the disability community is up in arms about the cuts to Medicaid, which they say will roll back much of the progress the movement has made in the past three and a half decades, much of it for people getting in-home types of assistance. And yet the ADA was pushed hard and signed by a Republican administration, that of President George H.W. Bush. Is this yet another formerly Republican priority being kind of tossed out the window?Ìý

Luthra: I think to your point, a lot of things that used to be bipartisan in the health policy world are not anymore. The other example is something like Title X, and it’s just we have really seen this shift of things that used to be broadly uncontroversial, because the health implications are clear, become much more so and largely become rejected by Republicans in a way that is just really, really different from what you might’ve imagined even, I don’t know, 10, 15 years ago.Ìý

Rovner: And my favorite piece of Title X trivia: It was signed by Richard Nixon, but it was sponsored in the House by then-Rep. George H.W. Bush. So he both sponsored Title X, the Family Planning Program, and signed the ADA into law. Boy, it feels like a million years ago and not 35.Ìý

Well, moving on to health care costs. It is tariff week in Washington — again — and not surprisingly, prescription drugs are a big part of that conversation. The trade deal that President Trump announced with the EU while he was in Scotland last weekend includes a 15% tariff on brand-name prescription drugs imported from Europe. That will include things like, I don’t know, the blockbuster weight loss drug Ozempic? Anna, how does Trump think this is going to eventually lower drug prices in the U.S.? It sounds like it’s just going to raise them.Ìý

Edney: Yeah. I think most people agree with your sentiment that it’s going to raise them. I think a lot of this is focused on bringing drug-making back to the United States and trying to get companies to do more of that here. Whether you see that from brand-name companies seems like it could be really difficult. I know Botox is made in Ireland, and this is a facility where, because it’s essentially a toxin, a very deadly toxin if released—Ìý

Rovner: Yes, it’s botulism.Ìý

Edney: Right. This is a facility that is highly guarded. A colleague of mine wrote a story on it many years ago now, but you had to go underground. They’re not just moving this thing over to the United States. So I think for brand-name drugs that it’s going to be particularly difficult to lower the prices based on tariffs, or to say We’re moving production over here in any capacity. So what the thinking of how exactly this works or is beneficial will be interesting to see, because they’re also still doing — this would not apply to these — but they’re doing this national security assessment for tariffs on drugs from other places and trying to figure out if there’s a national security reason to be putting tariffs on them. For the most part, when drug quality comes into question, it’s not usually the European drugmakers that we’re concerned about.Ìý

Rovner: And we’re still waiting to hear about the generic-drug makers in India and China, right?Ìý

Edney: Yeah, exactly. We’re waiting to see what they’ll decide. They’re still doing their investigation, the administration is, to see what those tariffs might be from India or China, or any other countries that are making generic drugs.Ìý

Rovner: Another story that we will continue to watch, and glad to have Anna here to continue to help us watch that. Now, it’s time for this week in what we’re still learning about the impact of the big tax and spending bill that President Trump signed on July Fourth. This week’s installment comes from my Â鶹ŮÓÅ Health News colleague Bernard Wolfson, whose column points out that eliminating eligibility for Affordable Care Act subsidies for immigrants who are here legally will mostly just raise premiums for everyone else by taking more healthy people out of the insurance pool. I get the administration’s insistence on not having people who are not here legally collecting benefits. We’ve talked about emergency Medicaid, but that’s a different issue. But what’s the justification for taking coverage away for people who are here because they’re refugees or victims of abuse, or those with temporary protected status? I don’t honestly understand what the point is of this.Ìý

Kenen: There’s a stigmatization across the board as being an immigrant, right? So the administration is not embracing immigrants who are here legally. We’ve all seen reports of people who are here legally still being picked up by immigration officials. It’s very messy. Sometimes people just say, OK, we’ll save money this way, not understanding that the costs pop up someplace else in the system and it may be more expensive. So not just in terms of that individual, but if things are going untreated in communities because people aren’t seeking care, communicable diseases can also spread. So there have been attempts to blame disease outbreaks on immigration when that’s not the case.Ìý

Rovner: Going back hundreds of years.Ìý

Kenen: Right. Smallpox was brought here by immigrants, right?Ìý

Rovner: Yeah.Ìý

Kenen: Hundreds of years ago.Ìý

Rovner: By the European immigrants.Ìý

Kenen: Right. That’s what I—Ìý

Rovner: And given to the Native population.Ìý

Kenen: Right. Right. So it’s just part of an overall gestalt about immigrants and immigration, and sort of treating them as leeches, not as people who live here.Ìý

Rovner: But I feel like both — it’s funny because this connects back to the whole tariff issue. The idea that Trump has here is to make things more “America First,” have more things made in America, and obviously more people made in America, and more Americans here to be served in America. But both of these things would take a long time. I guess the idea of not allowing legal immigrants to have benefits is to discourage people from coming here legally. One can’t see any other thing that would make that logical. And the idea of the tariffs, Anna, as you said, is to have companies build more manufacturing here. Both of those things would take a lot longer than Donald Trump is likely to be president. He doesn’t usually have a long-term view of things, and yet both of these issues are long-term issues, right?Ìý

Edney: Yeah. I think at least for the tariffs and for — there’ve been these small announcements with certain companies where they’ll say, Well, because of Trump, we’re going to build a new plant in Indianapolis. And that plant sure isn’t, like, it’s five years away, but he can make these announcements. And Joanne, and you’re absolutely right that he obviously wants to degrade immigrants in any way that he can, but also Obamacare, right? That’s still a thing that they’re in certain ways willing to go after.Ìý

Rovner: Good point. It’s a twofer.Ìý

Edney: Yeah, exactly. Exactly. So if you can erode Obamacare some and have a sicker population, and people being angry that they had to pay more, but Republicans have been good at still attaching that to Democrats: Oh, Obamacare. So I don’t know, maybe that comes back around.Ìý

Rovner: Yeah. Well, question answered. OK. Turning to abortion, the on-again, off-again Planned Parenthood funding is apparently on again, at least for now. You may recall last week a judge had allowed some of the defunding included in the budget bill to begin, but now another federal judge has said, Nope, you’ve got to keep letting Planned Parenthood collect from Medicaid for non-abortion-related services. Shefali, what comes next?Ìý

Luthra: The case continues to go through the courts. We know that right now that is in a federal district court. It could eventually go to the appellate courts. It could eventually make its way to the Supreme Court, including the debate over whether this proceeding is allowed to take effect or not. In the meantime, I’ve been talking to a lot of clinics, and they are preparing for the real possibility that they lose their Medicaid funding. Some of them are not optimistic about the long-term legal viability of this injunction, and so they’re thinking: What will we do if we lose all of these Medicaid dollars? Will we be able to see patients in the volume that we do? Will we be able to get funds from the state? Some are in active conversations with state governments. Some are looking to private fundraising. Others are thinking about which clinics they would close and also how they would do that in a way that minimizes service loss to patients, while acknowledging that some ability to access care — whether that is abortion or STI [sexually transmitted infection] screening or contraception or cancer screening — will simply not be replaced.Ìý

Rovner: Yeah, and I have to say, for all the million times I have said on this podcast, an administration can’t cut off Planned Parenthood from Medicaid, because it’s written into the Medicaid law, that doesn’t mean that Congress can’t cut off Planned Parenthood, because they can change the law. So I’m also a little bit wondering what the justification for Planned Parenthood being able to argue — I know that they’re arguing that they’re going after Planned Parenthood specifically, and that that’s not allowed. But certainly Congress can change the Medicaid law if it wants to. Congress wrote the Medicaid law.Ìý

Luthra: And I think it’s worth throwing in a couple of other components as well, considering there are multiple lawsuits at play right now, not just the original from Planned Parenthood. There’s the liberal states’ attorneys general. There’s the Maine Family Planning suit, as well. But conservative states do have an avenue to block Medicaid funds going to Planned Parenthood now, if they choose. The Supreme Court gave them that opportunity in the South Carolina case earlier this year. So no matter what happens in this case, there is a very real likelihood that in many parts of the country, Planned Parenthood clinics will lose funding they are reliant on and will probably have to close many facilities.Ìý

Rovner: Yeah. And just to reiterate, this goes back to the Title X Family Planning Program that we were talking about earlier, so it all comes full circle this week. This week we also have the latest chapter in the continuing fight between states with abortion bans and those with shield laws to try to protect doctors who are sending abortion pills through the mail into those states with abortion bans. According to , a man from Galveston is suing a doctor in California for sending his girlfriend pills to end her pregnancy. The man is being represented by Jonathan Mitchell, whose name may well be familiar to you as the originator of, most now, of Texas’s various abortion bans. The suit seeks both damages for the man who’s suing and an injunction on behalf of, quote, “all current and future fathers of unborn children in the United States.” Shefali, that feels pretty broad.Ìý

Luthra: It certainly does feel very broad. When I read it, I really wondered: How do you decide who are future potential parents of unborn children? Is that—Ìý

Rovner: Fathers, fathers.Ìý

Luthra: Excuse me. Yes. Potential fathers. Even more, how — is it everyone who has sperm? I don’t know. But this is part of a really central strategy to where the anti-abortion movement is right now. They are very upset about shield law prescription and provision of abortion medication. In Texas, they are trying a bunch of things to try and block this, whether that is this particular suit, whether that is one from the attorney general that continues to move back and forth, whether that is trying to get new state laws enacted during this special session. We’ll see if that happens with all the redistricting that is going on.Ìý

Rovner: This is all about Texas, by the way.Ìý

Luthra: And Texas is a really important player. But we did just see a group of attorneys general around the country from conservative states just reach out to members of Congress this week and say, Can you pass some kind of law that will block shield law prescription? We’ve also seen a case out of Louisiana that is held up in court right now because it’s a criminal case. But this is just such an important goal for them, because the reason abortions haven’t gone down is because people can keep accessing care through the mail. And if they can stop that, it will have tremendous implications for people in states with abortion bans, but also in other parts of the country where maybe it’s just too much of a pain or too far to go to a clinic and you can have a doctor mail you that care.Ìý

Rovner: Yeah. Well, clearly the abortion fights continue. We will continue to follow them. All right, that is this week’s news. Now, we’ll play excerpts of my interview with Medicaid expert Sara Rosenbaum, and then we will come back and do our extra credits.Ìý

I am so pleased to welcome Sara Rosenbaum to the podcast. Sara is professor emerita of health law and policy at George Washington University, one of the, if not the, leading experts on Medicaid. She’s also the person who has taught me at least 80% of what I know about the program. So I am extra thrilled that she’s agreed to come be our guide. Sara, welcome.Ìý

Sara Rosenbaum: Well, and thank you for having me. It’s such a pleasure to be on the show.Ìý

Rovner: So let’s start at the beginning. Medicaid was kind of an afterthought to Medicare when they were both created 60 years ago. How did Medicaid come to be?Ìý

Rosenbaum: It’s a really interesting question. This is, of course, the lore, that Medicaid was an afterthought. If you look at the original act, which had been enacted about five years before, and you read the original statutory language — which we lawyers revel in doing — you are amazed. This was not such a big afterthought. I would say that Wilbur Cohen and Wilbur Mills and Lyndon Johnson and everybody else had a good idea of what they were doing. They knew that they were planting the seeds for a program that ultimately would come to be the foundation of health insurance for low-income people across the United States, as well as, of course, specific categories such as people with very severe disabilities.Ìý

Rovner: So what was the difference between Medicare and Medicaid supposed to be when they were signed into law 60 years ago?Ìý

Rosenbaum: Yeah. So Medicaid was very much structured in the classic style of a state grants program. It has come, of course, to be so much more than that, but it was a grant to states, and states would set up state plans. This is all language that has become very familiar to us. And they would provide medical assistance, as it was called, to certain categories of poor people. And the theory was that the program would start with these people, but tucked into — the categories were cash welfare recipients — but tucked in there were a group of people known as the medically needy, in the early days. And the medically needy, I always felt, was sort of the first seeds of something much bigger, because the point was that it was a program for people who were low-income, who couldn’t afford their medical care, but didn’t get cash welfare.Ìý

So the theory was exactly the theory that has carried the program for 60 years now. And originally the thought was that it would really — and of course, this has turned out to be the case — that that would enable people who had very serious health care costs for things that Medicare did not cover — nursing home care, home health benefits ultimately, those kinds of really big-ticket long-term care items outside of Medicare — because Medicare was really sort of like Blue Cross Blue Shield for old people like me.Ìý

Rovner: You weren’t old at the time though?Ìý

Rosenbaum: I was not. Right. I was just a kid. But the program was meant to replicate what folks had had during their working years, and so it was very important and very profound, but limited.Ìý

Rovner: So Medicare’s long been the more politically popular of the two programs.Ìý

Rosenbaum: Yes.Ìý

Rovner: Primarily because of the political clout of older voters, which is how it was created. How was it that Medicaid became the program that grew so much?Ìý

Rosenbaum: What would propel Medicaid forward is that, unlike Medicare, which is tied to a premium structure, right? Medicare is funded through premium payments, which is great, but premium payments are quite unique. Because they are actuarially based, they are a very tightly controlled form of financing, because you’re asking — whether it’s the government or, now, of course, private insurers that contracted the government — you’re asking them to take on a lot of financial risk, and so everybody wanted the assurance of premium structure. Well, Medicaid was not. Medicaid is a classic public health statute. It’s general revenue. And so every time something happened that required an intervention by the federal government where health care was concerned, you could just add a few pages to the Medicaid statute and end up with, voilà, a fix. And by the mid-’70s, people said, Well, what if we decoupled this category from cash welfare funding levels and just let poor children have Medicaid? And there then ensued, essentially, a decade-long effort to add poor children and pregnant women as groups in their own right to the Medicaid program.Ìý

Rovner: I feel like in 2017, in the fight over the repeal of the Affordable Care Act, that was sort of a big change for Medicaid. I think people had finally realized that Medicaid had grown larger than—Ìý

Rosenbaum: Yes.Ìý

Rovner: —Medicare, that it was not just a program for the poorest of the poor, that it did all of these other things that you’re talking about, and that really a lot of, I guess, the stigma had been taken away. And yet this Congress felt comfortable — I don’t know if I’d say comfortable — but a majority of them voted to make these really deep, profound changes. What is that going to mean going forward, both to the health care system and to the political system?Ìý

Rosenbaum: Well, I’ve spent a lot of time thinking in this post-enactment period about when was the die cast that’s had everybody spinning. And I think congressional leaders and the White House leadership understood the fatal error they’d made in 2017, which was separating the tax reforms from the spending reforms. Because, of course, we were then able to battle the spending reforms on our own turf, right?. Here, because of the decision that was made back, I’m sure, almost a year ago—Ìý

Rovner: Literally the idea to do one “big, beautiful” bill.Ìý

Rosenbaum: Yes. And that meant that Medicaid, along with food stamps, or SNAP [the Supplemental Nutrition Assistance Program], along with everything else, just became pay-fors. They just became offsets. And the name of the game then became beating back every attempt to deprive Congress of pay-fors to do the thing that it really wanted to do, which was tax reform. And so we were all reduced to — “we” in the sense of people who worked on social welfare policy — to bystanders in this effort to get to a trillion dollars. And therefore—Ìý

Rovner: A trillion dollars in cuts.Ìý

Rosenbaum: A trillion dollars in cuts, and therefore it opened the door to extraordinary things.Ìý

Rovner: So what happens next? Does this happen? And if it happens, does it undergird or take out the underpinnings of the entire health care system? Or does Congress eventually realize what it’s done and change its mind?Ìý

Rosenbaum: Well, I think the hope is that — some people are saying: Well, the two-year runway. It’s like two years until it becomes effective. The two-year runway is sort of going to make people forget about this, and then boom, it’ll be upon us. I don’t think so. I think the two-year runway will end up shining a huge light on the fact that states cannot implement the whole system. While we are very focused on the number of people who will lose their coverage, the states are confronting an insurmountable problem here. They’ve never had to link Medicaid to work records, and Congress did everything it could to make matters so much worse. For example, they could have just said that, We’re going to import the same requirements that apply to SNAP to Medicaid, and so if you’re getting SNAP in your working age, then you automatically enroll in Medicaid. They didn’t do that. They didn’t do that. It’s a different-enough set of eligibility criteria and exemption categories. For example, SNAP ends, I think, at about 60, and the Medicaid work requirements go all the way to 65.Ìý

Rovner: Age 60 and 65.Ìý

Rosenbaum: Yes, exactly. But the exemptions are different. The requirements are different. And so states — people are talking about, Oh, well, it’s just the line reporting systems. No, no, no, no. You are liable for all kinds of error rate penalties. If you just rely on SNAP, you can’t. So states have no way to deal with this. So there’s no mitigation strategy for this, and I think the hope is that Congress will call it back.Ìý

Rovner: If it doesn’t, is this — the one sort of silver lining that I’d been sort of thinking about is, well, maybe if we tear down the health care system, we’ll have to start again and build a better one. Is it possible that we could get there, or are we just going to limp along?Ìý

Rosenbaum: I have those thoughts often, and then I stop and think, well, those of us with health insurance could sit there and say, Yeah, maybe we just tear down the health system to start again. Meanwhile, of course, we will have millions of people without health care. So I — interestingly, the Affordable Care Act, of course, was designed not to tear down the health care system but to strengthen the health care system. But it was the brilliance of the Affordable Care Act was that it saw the holes and it sort of tried to fix them. And if we’d left it alone with everybody in this what I consider to be sort of an intermediate arrangement, we could have done exactly what you are talking about. With just about everybody in the United States covered, we could have begun to really do the serious work of moving to something more unified, better—Ìý

Rovner: Cheaper.Ìý

Rosenbaum: And of course, cheaper.Ìý

Rovner: More efficient.Ìý

Rosenbaum: More efficient. That’s right. Far easier to use. But we have decided instead to tear the Affordable Care Act apart, both the access to the marketplace by rolling back the assistance and, of course, the Medicaid reforms.Ìý

Rovner: Well, happy birthday, Medicaid.Ìý

Rosenbaum: Happy birthday, Medicaid.Ìý

Rovner: Thank you so much, Sara Rosenbaum.Ìý

Rosenbaum: Thank you for having me. It was a — it was both uplifting and sad.Ìý

Rovner: OK, we’re back. And now it’s time for our extra-credit segment. That’s where we each recognize the story we read this week we think you should read, too. Don’t worry if you miss it. We will put the links in our show notes on your phone or other mobile device. Joanne, why don’t you go first this week?Ìý

Kenen: The story I’m doing is in ScienceAlert: “,” by David Nield. OK, I should begin with a caveat, which is I basically don’t like it when journalists hype findings. It’s something that was only in a dozen mice or something. My exception is when something is really, really sort of just interesting to learn about. Then it’s OK to report it as long as you just sort of shout: This is only in mice! We don’t know if it’s going to work in people! But it is an interesting study.Ìý

One reason people don’t get vaccines is they’re afraid of needles. And if you could actually apply the vaccine to a dental floss pick and get it — because the line between our gums and our teeth is permeable, stuff can get in and out. That’s why we have to clean it. If you could treat a dental floss with the vaccine instead of just plain old dental floss or a needle in your arm or leg or whatever, maybe that could be a way of improving. And so these animal studies have been suggestive that this is a worthwhile course to follow. But before you go out to the drugstore with your dental floss and ask them to put the vaccine stuff on it — they’ve done it with a couple of people with dye, not with vaccine, just to sort of trace it. We are a long way away, but it was interesting enough for me to decide that we could discuss it.Ìý

Rovner: I thought it was pretty cool. Shefali?Ìý

Luthra: My piece also is dentistry adjacent, even dentistry directly relevant. It is from The New Yorker. It is by Burkhard Bilger. The headline is “” This is a really fun read. He travels to this town. Los Algodones, in Mexico, is right across the border, and it is where a lot of people go to get dental work. It is much cheaper there than getting it in America. So he goes through the history of dental work, why it has been something that people really do not enjoy, the pain associated with it, how many bad dentists are out there, also the stigma and violence against dentists. And then he talks through his own personal journey of trying to figure out: Does he need this dental work? How much would it cost to get it in this Mexican town compared to getting it in the U.S.?Ìý

He talks to a dentist there, talks to a celebrity dentist as well, and in the end decides to keep his teeth as they are, which is very beautiful to me as someone who hates going to the dentist. But it’s a really fun read to think about how expensive health care is, how often things are marketed to us that maybe we do or don’t need, and also why dentistry has really been siloed out of all other health care for basically all of our history.Ìý

Rovner: Yeah, it really has. It’s a wonderful combination of stories. Anna.Ìý

Edney: Mine is not dental-related. I apologize. But this is an obit in The Washington Post by Stefanie Dazio, “.” And I wanted to talk about him because he was the reporter responsible for bringing to light everything that was going on with thalidomide. He wrote a 1962 front-page Washington Post profile on Francis Kelsey, the FDA pharmacologist who essentially blocked thalidomide from getting to market in the U.S., and she faced a lot of pressure and a lot of name-calling and things to stand in the way. And he took on the story, and he did many amazing stories, so it’s just, it’s worth a read. He wrote a lot about the pharmaceutical industry as well, and so I think it’s just nice to remember him.Ìý

Rovner: It is. I will point out he was a fellow Michigan Daily alum, a close family friend. My mother actually worked on the Michigan Daily with his younger sister and then later worked with him at The Washington Post for years, so I can attest, not just a great reporter but a really swell guy. All right, well, my extra credit is not dental-related, either. It’s another great investigation from my Â鶹ŮÓÅ Health News colleague Fred Schulte. It’s called, “Cosmetic Surgeries Led to Disfiguring Injuries, Patients Allege.” And it’s mostly about a chain you’ve probably seen advertised called Sono Bello and how this private-equity-owned business and some others like it are being sued in scores of medical malpractice and negligence lawsuits, claiming under-trained medical professionals have caused disfiguring injuries and, in at least a dozen cases, wrongful deaths. The subtext of this story, of course, is that this is another one of those not quite med spa but not quite ambulatory surgery center categories that’s not very well regulated by either the FDA or most states. So it’s yet another good case of buyer beware when it comes to protecting your health.Ìý

OK. That’s this week’s show. As always, thanks as always to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. Extra-special thanks this week to Taylor Cook, who’s editing our Medicare and Medicaid anniversary interviews. If you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review. That helps other people find us, too. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me on X, , or on Bluesky, . Where are you folks hanging these days? Shefali.Ìý

Luthra: I am at Bluesky, .Ìý

Rovner: Joanne.Ìý

Kenen: and , @joannekenen.Ìý

Rovner: Anna.Ìý

Edney: or , @annaedney.Ìý

Rovner: We’ll be back in your feed next week. Until then, be healthy.Ìý

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“I want people to not kill themselves for who they are,” said organizer Myk Mendez, a trans and two-spirit citizen of the Fort Hall Shoshone-Bannock Tribes in Idaho. “I want people to love their lives and grow old to tell their stories.”

“Two-spirit” is used by Native Americans to describe a distinct gender outside of male or female.

The conference in Elko reflects how some tribal citizens are supporting their LGTBQ+ community members as President Donald Trump rolls back protections and policies. In March, the National Indian Health Board, which represents and advocates for federally recognized Native American and Alaska Native tribes, declaring tribal sovereignty over issues affecting the Native American community’s health, including access to gender-affirming care.

The resolution calls on the federal government to preserve and expand programs that support the health and well-being of two-spirit and LGBTQ+ Native Americans. Tribes and tribal organizations are navigating how to uphold their sovereignty without jeopardizing the relationships and resources that support their communities, said Jessica Leston, the owner of the Raven Collective, a Native public health consulting group, and a member of the Ketchikan Indian Community.

In January, Trump signed an executive order recognizing — male and female — and another to terminate programs within the federal government. describing two-spirit people was removed this year but restored following a court order. The page now has a disclaimer at the top that declares any information on it “promoting gender ideology” is “disconnected from the immutable biological reality that there are two sexes, male and female.”

Two-spirit is not a sexual orientation but refers to people of a “culturally and spiritually distinct gender exclusively recognized by Native American Nations,” according to a definition created by two-spirit elders in 2021. According to two-spirit leaders, people who did not fit into the Western binary of male and female have lived in their communities since before colonization.

Already, tribal citizens and leaders say some people have had trouble accessing gender-affirming care in recent months, with some community members being denied hormone treatments or having their medications delayed, even in places where gender-affirming care remains legal. Panic has spread, and tribal citizens have considered leaving the country.

“There is a chilling effect,” said Itai Jeffries, who is trans, nonbinary, and two-spirit, of the Occaneechi people from North Carolina, and a consultant for the Raven Collective.

Mendez said he requested hormone treatment at his local Indian Health Service clinic at the end of June and was told by his provider that the facility has had trouble receiving the treatment for patients.

Lenny Hayes, a two-spirit citizen of the Sisseton-Wahpeton Oyate in South Dakota, said the Indian Health Service clinic on the reservation also isn’t dispensing hormone treatment, though it is legal for people 18 and older. Hayes is the owner and operator of Tate Topa Consulting and provides educational training on two-spirit and LGTBQ+ Native Americans and Alaska Natives.

The National Congress of American Indians to encourage the creation of policies to protect two-spirit and LGBTQ+ communities. And the organization in 2021 to support providing gender-affirming care in Indian Health Service, tribal, and urban facilities.

The National Indian Health Board’s resolution cites homophobia and transphobia as contributing to higher rates of truancy, incarceration, self-harm, attempted suicide, and suicide among two-spirit young people. The board also lists health disparities among the broader Native LGBTQ+ population, including increased risks of anxiety, depression, and suicide.

Two-spirit and LGBTQ+ Native American and Alaska Native young people are , and sexual exploitation. In Minnesota, found that two-spirit and LGBTQ+ Native American and Alaska Native students had the highest rates of those ages 15-19 who responded “yes” to having traded sex or sexual activity for money, food, drugs, alcohol, or shelter.

Tribal leaders are also concerned that Medicaid cuts recently approved in Trump’s budget law will undercut efforts to expand testing and treatment for HIV infection in Native American communities.

The rates of HIV diagnosis among Native American and Alaska Native gay and bisexual men from 2018 to 2022, according to the Centers for Disease Control and Prevention.

Despite this increase, Native American and Alaska Native gay and bisexual men are among the groups with the least access to HIV tests outside of health care settings, such as community-based organizations, mobile testing units, and shelters.

As tribes respond to state and federal regulations of two-spirit and LGBTQ+ people, organizations and communities are focused on providing information and resources to protect those in Indian Country, even from the president.

“He will never, ever wipe out our identity, no matter what he does,” Hayes said.

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

USE OUR CONTENT

This story can be republished for free (details).