HIV/AIDS Archives - ºÚÁϳԹÏÍø News /tag/hivaids/ ºÚÁϳԹÏÍø News produces in-depth journalism on health issues and is a core operating program of KFF. Thu, 18 Jun 2026 00:10:28 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.6 /wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 HIV/AIDS Archives - ºÚÁϳԹÏÍø News /tag/hivaids/ 32 32 161476233 Effective but Underprescribed: HIV Prevention Meds Aren’t Reaching Enough People /insurance/wamu-health-hub-prep-hiv-treatment-access-workarounds-february-4-2026/ Fri, 06 Feb 2026 10:00:00 +0000

Listen: More than 2 million Americans could benefit from PrEP, but only about a quarter of them are getting the HIV prevention medication. On Feb. 4, during WAMU’s “Health Hub,” ºÚÁϳԹÏÍø News reporter Zach Dyer shared tips for overcoming common hurdles to care.

Billing mistakes. Stigma. Doctors who aren’t keeping up with the latest research. Those are just some of the hurdles that 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.

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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To Knock Down Health-System Hurdles Between You and HIV Prevention, Try These 6 Things /health-care-costs/health-care-helpline-prep-preexposure-prophylaxis-hiv-prevention-drug-lgbtq-tips/ Mon, 05 Jan 2026 10:00:00 +0000 /?post_type=article&p=2131633 An illustration of a doctor listening to a patient about a medication. There is a LGBT+ pride picture in the background.
(Oona Zenda/ºÚÁϳԹÏÍø News)

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 healthcare 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 healthcare 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 healthcare 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 healthcare 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 healthcare 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 healthcare 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+ healthcare.

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

Healthcare Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out. Share your story. The crowdsourced project is a joint production of NPR and ºÚÁϳԹÏÍø News.

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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An HIV Outbreak in Maine Shows the Risk of Trump’s Crackdown on Homelessness and Drug Use /mental-health/hiv-outbreak-bangor-maine-syringe-services-programs-trump-homelessness/ Tue, 16 Sep 2025 09:00:00 +0000 /?post_type=article&p=2086181 Penobscot County, Maine, is grappling with the largest HIV outbreak in the state’s history. Home to Bangor, a city of , the county has identified over nearly two years. That’s seven times the typical number for that length of time. Nearly all cases are among people who use drugs and are homeless.

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 .

A photo of a syringe services operation being run out of the trunk of a car.
Syringe services programs are one of the leading distributors nationwide of overdose reversal medications, such as naloxone. They also provide people who use drugs with sterile syringes and other equipment that has been shown to reduce the spread of infectious diseases, such as HIV and hepatitis C. (Needlepoint Sanctuary)

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 ºÚÁϳԹÏÍø 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.

A photo of a display rack of sterile needles, alcohol pads, arm straps, cotton swabs, etc.
Health Equity Alliance, or HEAL, was a Bangor-area nonprofit that distributed more than half a million sterile needles a year to people who use drugs. The organization ran out of supplies repeatedly in the lead-up to the first HIV case of the current outbreak in October 2023, and it shut down in early 2025. (Amy Clark)

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 ºÚÁϳԹÏÍø 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.

A photo of a table set up by Needlepoint Sanctuary under a tent outside.
Maine certified Needlepoint Sanctuary to distribute sterile syringes to people who use drugs, but the group has encountered obstacles with the city, which does not want it operating in prominent public parks or squares. (Needlepoint Sanctuary)
A photo of a Needlepoint Sanctuary crew helping homeless people in a park.
Needlepoint Sanctuary regularly handed out food, clothing, and other supplies to people living at the largest homeless encampment in Bangor, Maine. (Needlepoint Sanctuary)

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 ºÚÁϳԹÏÍø News. “They did it anyway.”

A photo of a woman speaking outside at a rally. A sign behind her reads, "Honor the dead, fight for the living."
Amy Clark, a board member for the Bangor Area Recovery Network, speaks at an Overdose Awareness Rally outside Bangor City Hall in August 2025. (Ash Hebert)

‘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. (ºÚÁϳԹÏÍø 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.”

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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Inside the CDC, Shooting Adds to Trauma as Workers Describe Projects, Careers in Limbo /public-health/cdc-crisis-workers-fired-reinstated-hiv-aids-projects-public-health/ Mon, 11 Aug 2025 09:00:00 +0000 Centers for Disease Control and Prevention workers whose jobs have been reinstated after dizzying Trump administration disruptions say they remain stuck in a budgetary, political, and professional limbo.

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.”

Healthbeat is a nonprofit newsroom covering public health published by and . Sign up for its national newsletter .

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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Next on Kennedy’s List? Preventive Care and Vaccine Harm /podcast/what-the-health-408-preventive-care-vaccine-injury-rfk-makeover-july-31-2025/ Thu, 31 Jul 2025 19:00:00 +0000 The Host
Julie Rovner photo
Julie Rovner ºÚÁϳԹÏÍø News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of ºÚÁϳԹÏÍø News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

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 ºÚÁϳԹÏÍø News, Anna Edney of Bloomberg News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Shefali Luthra of The 19th.

Panelists

Anna Edney photo
Anna Edney Bloomberg News
Joanne Kenen photo
Joanne Kenen Johns Hopkins University and Politico
Shefali Luthra photo
Shefali Luthra The 19th

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 ºÚÁϳԹÏÍø 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: ºÚÁϳԹÏÍø 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:

click to open the transcript Transcript: Next on Kennedy’s List? Preventive Care and Vaccine Harm

[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.] 

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for ºÚÁϳԹÏÍø 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. 

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

Joanne Kenen: Hi, everybody. 

Rovner: Shefali Luthra of The 19th. 

Shefali Luthra: Hello. 

Rovner: And Anna Edney of Bloomberg News. 

Anna Edney: Hi. 

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. 

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. 

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? 

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. 

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. 

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. 

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. 

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

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

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.— 

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

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. 

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? 

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. 

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? 

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. 

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. 

Rovner: We have. 

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. 

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

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

Edney: Right. 

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

Edney: Right. That’s true. 

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? 

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. 

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. 

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. 

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. 

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? 

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. 

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. 

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. 

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— 

Rovner: Yes, it’s botulism. 

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. 

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

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. 

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 ºÚÁϳԹÏÍø 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. 

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. 

Rovner: Going back hundreds of years. 

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

Rovner: Yeah. 

Kenen: Hundreds of years ago. 

Rovner: By the European immigrants. 

Kenen: Right. That’s what I— 

Rovner: And given to the Native population. 

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. 

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? 

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. 

Rovner: Good point. It’s a twofer. 

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. 

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? 

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. 

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. 

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. 

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. 

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— 

Rovner: Fathers, fathers. 

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. 

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

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. 

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. 

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. 

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

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? 

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. 

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

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. 

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. 

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

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. 

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

Rosenbaum: Yes. 

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? 

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. 

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— 

Rosenbaum: Yes. 

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? 

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— 

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

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— 

Rovner: A trillion dollars in cuts. 

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

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? 

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. 

Rovner: Age 60 and 65. 

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. 

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? 

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— 

Rovner: Cheaper. 

Rosenbaum: And of course, cheaper. 

Rovner: More efficient. 

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. 

Rovner: Well, happy birthday, Medicaid. 

Rosenbaum: Happy birthday, Medicaid. 

Rovner: Thank you so much, Sara Rosenbaum. 

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

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? 

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. 

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. 

Rovner: I thought it was pretty cool. Shefali? 

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.? 

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. 

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

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. 

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 ºÚÁϳԹÏÍø 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. 

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. 

Luthra: I am at Bluesky, . 

Rovner: Joanne. 

Kenen: and , @joannekenen. 

Rovner: Anna. 

Edney: or , @annaedney. 

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

Credits

Francis Ying Audio producer
Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to ºÚÁϳԹÏÍø News’ “What the Health?” on , , , or wherever you listen to podcasts.

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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Tribal Groups Assert Sovereignty as Feds Crack Down on Gender-Affirming Care /mental-health/tribal-groups-gender-affirming-care-lgbtq-trump-cuts-policies-indian-health-sovereignty/ Wed, 30 Jul 2025 09:00:00 +0000 /?post_type=article&p=2064323 ELKO, Nev. — At the Two Spirit Conference in northern Nevada in June, Native Americans gathered in support of the LGBTQ+ community amid federal and state rollbacks of transgender protections and gender-affirming health care.

“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.

A photo of a man seated at a table during a conference. A two-spirit pride flag is draped over the table.
Myk Mendez, who organized the conference, says he did it because he wanted to give community members a chance to learn about the history of two-spirit people and to preserve their traditions. (Jazmin Orozco Rodriguez/ºÚÁϳԹÏÍø News)

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.

Colleen Couchum, a member of the Te-Moak Tribe of Western Shoshone, created this skirt that was gifted to a speaker at the conference. The buffalo on the skirt represents Buffalo Barbie, a two-spirit member of the Navajo Nation. (Jazmin Orozco Rodriguez/ºÚÁϳԹÏÍø News)
The conference included speakers who talked about the trauma that two-spirit individuals may endure and how to create healing as well as a fashion show that highlighted local Native American designers. (Jazmin Orozco Rodriguez/ºÚÁϳԹÏÍø News)

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.

A photo of a man posing for a picture surrounded by ferns. He holds a Western Shoshone flag. The back of his shirt has a custom design of three horses.
Justin Couchum, a member of the Te-Moak Tribe of Western Shoshone, wears a shirt he created for the Two Spirit Conference’s fashion show. (Jazmin Orozco Rodriguez/ºÚÁϳԹÏÍø News)

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.

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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Louisiana Upholds Its HIV Exposure Law as Other States Change or Repeal Theirs /courts/louisiana-hiv-exposure-law-sex-offender-registry/ Mon, 21 Jul 2025 09:00:00 +0000 /?post_type=article&p=2060961 SHREVEPORT, La. — When Robert Smith met his future girlfriend in 2010, he wanted to take things slowly. For Smith, no relationship had been easy in the years since he was diagnosed with the human immunodeficiency virus, or HIV. People often became afraid when they learned his status, even running away when he coughed.

The couple waited months to have sex until Smith felt he could share his medical status. To prepare her, Smith said, he took his girlfriend to his job in HIV prevention at the Philadelphia Center, a northwestern Louisiana nonprofit that offers resources to people with HIV, which also provided him housing at the time.

Finally, he revealed the news: Smith was diagnosed with HIV in 1994 and started taking daily antiviral pills in 2006. The virus could no longer be detected in his blood, and he couldn’t transmit it to a sexual partner.

Smith said his girlfriend seemed comfortable knowing his status. When it came to sex, there was no hesitation, he said. But a couple of years later, when Smith wanted to break up, he said, her tone shifted.

“She was like, ‘If you try to leave me, I’m gonna put you in jail,’” recalled Smith, now 68. “At the time, I really didn’t know the sincerity of it.”

After they broke up, she reported him to the police, accusing him of violating a little-known law in Louisiana — a felony called “.” He disputed the allegations, but in 2013 accepted a plea deal to spend six months in prison on the charge. He had a few months left on parole from a past conviction on different charges, and Smith thought this option would let him move past the relationship faster. He didn’t realize the conviction would also land him on the state’s sex offender registry.

For nearly two decades, Smith had dealt with the stigma associated with having HIV; the registry added another layer of exclusion, severely restricting where he could live and work to avoid minors. Not many people want to hire a sex offender, he said. Smith has been told by the local sheriff’s office he’s not allowed to do simple things, like go to a public park or a high school football game, since the conviction.

“I’ve been undetectable for 15 years, but that law still punishes us,” Smith said.

Louisiana is one of 30 states with criminal penalties related to exposing or transmitting HIV. Most of the laws were passed in the 1980s during the emergence of the AIDS epidemic. Since then, several states have amended their laws to make them less punitive or repealed them outright, including Maryland and North Dakota this year.

But Louisiana’s law remains among the harshest. The state is that may require people such as Smith to register as a sex offender if convicted, a label that can follow them for over a decade. And state lawmakers considered a bill to expand the law to apply to other sexually transmitted infections, then failed to pass it before the session ended.

Meanwhile, people with HIV also face the threat that federal funding cuts will affect their access to treatment, along with prevention efforts, supportive services, and outreach. Such strategies have proved to slow the HIV/AIDS epidemic, unlike the laws’ punitive approach.

The tax and domestic policy law previously known as the “One Big Beautiful Bill” will likely affect HIV-positive people enrolled in Medicaid by reducing federal support for Medicaid and restricting eligibility. About 40% of adults under 65 with HIV rely on Medicaid.

The Trump administration to eliminate HIV prevention programs at the Centers for Disease Control and Prevention and to cancel a grant that helps fund housing for people with HIV. The Ryan White HIV/AIDS program, the largest federal fund dedicated to supporting HIV-positive people, also faces cuts. The program serves more than half of the people in the U.S. diagnosed with HIV, including in Louisiana, according to KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News.

Public health officials maintain that state laws criminalizing HIV exposure hurt efforts to end the HIV epidemic. Epidemiologists and other that the enforcement of such laws is often shaped by fear, not science. For example, in many states that criminalize HIV exposure, people living with HIV can face heightened criminal penalties for actions that can’t transmit the virus, such as spitting on someone. The laws further stigmatize and deter people from getting tested and treatment, undermining response to the epidemic, experts say.

At least 4,400 people in 14 states have been arrested under these laws, though data is limited and the actual number is likely higher, and the arrests aren’t decreasing, according to analyses by .

“ Some people think it’s an issue that’s gone away, and that simply isn’t the case,” said Nathan Cisneros, a researcher at the Williams Institute.

In Louisiana, found at least 147 allegations reported to law enforcement under the state’s HIV law from 2011 to mid-2022. Black people made up nearly three-quarters of the people convicted and placed on the sex offender registry. Most were Black men, like Smith. At the time of the analysis, Black people made up about two-thirds of HIV diagnoses in the state.

“ We see over and over that Black people are disproportionately affected by the HIV epidemic and disproportionately affected by policing and incarceration in the United States,” Cisneros said.

Nationally, other marginalized groups such as women, sex workers, the queer community, or people who overlap across more than one group are also disproportionately arrested and prosecuted under similar criminalization laws, Cisneros said.

A photo of a man standing outside a community center. A large, colorful mural of  the city is on the façade behind him.
Smith, outside the Philadelphia Center in Shreveport, Louisiana, was diagnosed with HIV in 1994 and began taking daily antiviral pills in 2006. By 2010, when he entered a new relationship, the virus couldn’t be detected in his blood. (Halle Parker/Verite News)

Ensnared in the System

Louisiana’s law hinges on the requirement that if a person knows they have HIV, they must disclose their HIV status and receive consent before exposing someone to the virus.

Louisiana District Attorneys Association Executive Director Zach Daniels said these cases don’t come up often and can be difficult to prosecute. Daniels said the intimate nature of the cases can lead to little evidence in support of either side, especially if the accuser doesn’t contract HIV.

When it comes to talking about one’s sex life, Daniels said, “there are often no other witnesses, besides the two participants.”

Louisiana’s law is written so that “intentional exposure” can occur through “any means or contact.” That includes sex and needle-sharing, practices known to transmit the virus. But the language of the law is so broad that actions known not to transmit the virus — like biting or scratching — could be included, said Dietz, the statewide coordinator for the Louisiana Coalition on Criminalization and Health, an advocacy network founded by people living with HIV that has opposed the law.

The broad nature of the law creates opportunities for abuse, as the threat of being reported under the law can be used as a coercive tool in relationships, said Dietz, who goes by one name and uses they/them pronouns. Such threats, Dietz said, have kept people in abusive relationships and loomed over child custody battles. Dietz said they’ve supported people accused of exposing their children to HIV in ways that are not medically possible.

“ ‘Any means or contact’ could be just merely being around your kids,” they said.

The prosecutors’ organization still supports the law as a recourse for emergency responders who, in rare instances, come into contact with blood or syringes containing the virus. In one recent , the law was used against a local DJ accused of knowingly transmitting HIV to several women without informing them of his status or using a condom.

The person accused of violating the law, not the accuser, must prove their case — that they disclosed their HIV status beforehand. Without a signed affidavit or tape recording, courts can end up basing their decisions on conflicting testimonies with little supporting evidence.

That’s what Smith alleged happened to him.

After his relationship ended, he said, he remembered being called into a meeting with his parole officer where a detective waited for him, asking about his former relationship and whether his girlfriend had known about his HIV status.

Smith said yes. But that’s not what she had told police.

Verite News could not find a working phone number for Smith’s former girlfriend but corroborated the story with the incident’s police report. His attorney at the time, a public defender named Carlos Prudhomme, said he didn’t remember much about the case, and court documents are sealed because it was a sex offense.

In court, it was her word against his. So when he was offered six months in prison instead of the 10-year maximum, he switched his plea from not guilty to guilty. But he said he didn’t know his new conviction would require him to register as a sex offender once he got out — worsening the stigma.

“When people see ‘sex offender,’ the first thing that comes to their mind is rape, child molester, predator,” Smith said. “This law puts me in a category that I don’t care to be in.”

He has tried to make the most of it, despite the expense of paying fees each year to reregister. After being rejected from jobs, he started a catering business and built a loyal clientele. But he said he’s still stuck living in a poorly maintained apartment complex primarily inhabited by sex offenders.

“I understand their strategy for creating this law to prevent the spread, but it’s not helping. It’s hurting; it’s hindering. It’s destroying people’s lives instead of helping people’s lives, especially the HIV community,” he said. “They don’t care about us.”

The Case for Reform

Since 2014, there has been a nationwide effort to update or repeal state laws that criminalize HIV nondisclosure, exposure, or transmission. A dozen states have changed their laws to align more closely with modern science, and four have gotten rid of them completely in hopes of reducing stigma and improving public health outcomes, according to the .

Sean McCormick, an attorney with the center, said these changes are influenced partly by a growing body of evidence showing the laws’ negative consequences.

McCormick said the laws offer a “clear disincentive” for people to get tested for HIV. If they don’t know their status, there’s no criminal liability for transmission or exposure.

A by Centers for Disease Control and Prevention and DLH Corp. researchers found that after California updated its HIV criminalization law in 2018, respondents were more likely to get tested. Meanwhile, survey respondents in Nevada, which still had a more punitive law on the books, were less likely to get tested.

There’s no one-size-fits-all solution, McCormick said. His center works with HIV-positive people across the country to determine what legislative changes would work best in their states.

Texas was the first .

“As a person living with HIV in Texas, I’m deeply appreciative that we don’t have an HIV-specific statute that puts a target on my back,” said Michael Elizabeth, the public health policy director for the Equality Federation.

But Elizabeth points out that Texans living with HIV still face steeper penalties under general felony laws for charges such as aggravated assault or aggravated sexual assault after state courts in Texas equated the bodily fluids of a person with HIV with a “deadly weapon.”

Louisiana activists have pushed lawmakers in the state to amend the law in three ways: removing the sex offender registration requirement, requiring transmission to have occurred, and requiring clear intent to transmit the virus.

“Our strategy, as opposed to repeal, is to create a law that actually addresses the kind of boogeyman that they ostensibly created the law for: the person who successfully, maliciously, intentionally transmits HIV,” said Dietz with the Louisiana Coalition on Criminalization and Health.

In 2018, a bill to narrow the statute was amended in ways that expanded the law. For example, the updated law no longer had any definition of which actions “expose” someone to HIV.

In 2023, state lawmakers created a task force that recommended updating Louisiana’s law to align with the latest public health guidelines, limit the potential for unintended consequences, and give previously convicted people a way to clear their record.

Lawmakers in the state House pushed forward a bill this year to criminalize other sexually transmitted infections, including hepatitis B and the herpes simplex virus. That bill died in the Senate, but it spurred the creation of another legislative task force with a nearly identical mission to that of the first.

“ This state has no idea how closely we just dodged a bullet,” Dietz said.

A portrait of Robert Smith smiling outside. A mural of the city is behind him.
Smith is petitioning the state to take his name off the sex offender registry. (Halle Parker/Verite News)

In the meantime, the Louisiana coalition is helping Smith petition the state to take his name off the sex offender registry. Louisiana law allows people to petition to have their names removed from the registry after 10 years without any new sex crime convictions. Smith expects his case to be approved by the end of the year.

Despite the difficulty of the past 12 years, he said, he’s grateful for the chance to be free from the registry’s restrictions.

“It’s like a breath of fresh air,” Smith said. “I can do stuff that I wanted to do that I couldn’t. Like, go to a football game. Simple stuff like that, I’m going to be ready to do.”

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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The Senate Saves PEPFAR Funding — For Now /podcast/what-the-health-406-pepfar-senate-rescission-abortion-mifepristone-july-17-2025/ Thu, 17 Jul 2025 19:25:00 +0000 /?p=2061254&post_type=podcast&preview_id=2061254 The Host
Julie Rovner photo
Julie Rovner ºÚÁϳԹÏÍø News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of ºÚÁϳԹÏÍø News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

The Senate has passed — and sent back to the House — a bill that would allow the Trump administration to claw back some $9 billion in previously approved funding for foreign aid and public broadcasting. But first, senators removed from the bill a request to cut funding for the President’s Emergency Plan for AIDS Relief, President George W. Bush’s international AIDS/HIV program. The House has until Friday to approve the bill, or else the funding remains in place.

Meanwhile, a federal appeals court has ruled that West Virginia can ban the abortion pill mifepristone despite its approval by the Food and Drug Administration. If the ruling is upheld by the Supreme Court, it could allow states to limit access to other FDA-approved drugs.

This week’s panelists are Julie Rovner of ºÚÁϳԹÏÍø News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, Shefali Luthra of The 19th, and Sandhya Raman of CQ Roll Call.

Panelists

Joanne Kenen photo
Joanne Kenen Johns Hopkins University and Politico
Shefali Luthra photo
Shefali Luthra The 19th
Sandhya Raman photo
Sandhya Raman CQ Roll Call

Among the takeaways from this week’s episode:

  • The Senate approved the Trump administration’s cuts to foreign aid and public broadcasting, a remarkable yielding of congressional spending power to the president. Before the vote, Senate GOP leaders removed President Donald Trump’s request to cut PEPFAR, sparing the funding for that global health effort, which has support from both parties.
  • Next Congress will need to pass annual appropriations bills to keep the government funded, but that is expected to be a bigger challenge than the recent spending fights. Appropriations bills need 60 votes to pass in the Senate, meaning Republican leaders will have to make bipartisan compromises. House leaders are already delaying health spending bills until the fall, saying they need more time to work out deals — and those bills tend to attract culture-war issues that make it difficult to negotiate across the aisle.
  • The Trump administration is planning to destroy — rather than distribute — food, medical supplies, contraceptives, and other items intended for foreign aid. The plan follows the removal of workers and dismantling of aid infrastructure around the world, but the waste of needed goods the U.S. government has already purchased is expected to further erode global trust.
  • And soon after the passage of Trump’s tax and spending law, at least one Republican is proposing to reverse the cuts the party approved to health programs — specifically Medicaid. It’s hardly the first time lawmakers have tried to change course on their own policies, though time will tell whether it’s enough to mitigate any political (or actual) damage from the law.

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

Julie Rovner: The New York Times’ “,” by David Enrich.

Joanne Kenen: The New Yorker’s “” by Dhruv Khullar.

Shefali Luthra: The New York Times’ “,” by Apoorva Mandavilli.

Sandhya Raman: The Nation’s “,” by Cecilia Nowell.

Also mentioned in this week’s podcast:

Click to open the transcript u003cstrongu003eTranscript: The Senate Saves PEPFAR Funding — For Nowu003c/strongu003e

[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.] 

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for ºÚÁϳԹÏÍø News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, July 17, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go. 

Today we are joined via videoconference by Sandhya Raman of CQ Roll Call. 

Sandhya Raman: Hello, everyone. 

Rovner: Shefali Luthra of The 19th. 

Shefali Luthra: Hello. 

Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine. 

Joanne Kenen: Hi, everybody. 

Rovner: No interview this week, but more than enough news. So we will get right to it. 

We’re going to start on Capitol Hill, where in the very wee hours of Thursday morning, the Senate approved the $9 billion package of rescissions of money already appropriated. It was largely for foreign aid and the Corporation for Public Broadcasting, which oversees NPR and PBS. Now, this bill represents pennies compared to the entire federal budget and even to the total of dollars that are appropriated every year, but it’s still a big deal because it’s basically Congress ceding more of its spending power back to the president. And even this small package was controversial. Before even bringing it to the floor, senators took out the rescission of funds for PEPFAR [the President’s Emergency Plan for AIDS Relief], the bipartisanly popular international AIDS/HIV program begun under President George W. Bush. So now it has to go back to the House, and the clock on this whole process runs out on Friday. Sandhya, what’s likely to happen next? 

Raman: I think that the House has been more amenable. They got this through quicker, but if you look— 

Rovner: By one vote. 

Raman: Yeah. But I think if you look at what else has been happening in the House this week that isn’t in the health sphere, they’ve been having issues getting other things done, because of some pushback from the Freedom Caucus, who’s been kind of stalling the votes and having them to go back. And other things that should have been smoother are taking a lot longer and having a lot more issues. So it’s more difficult to say without seeing how all of that plays out, if those folks are going to make a stink again about something here because some of this money was taken out. It’s a work in progress this week in the House. 

Rovner: Yeah, that’s a very kind way to put it. The House has basically been stalled for the last 24 hours over, as you say, many things, completely unrelated, but there is actually a clock ticking on this. They had 45 days from when the administration sent up this rescission request, and we’re now on Day 43 because Congress is the world’s largest group of high school students that never do anything until the last minute. So Democrats warned that this bill represents yet another dangerous precedent. They reached a bipartisan agreement on this year of spending bills in the spring, and this basically rolls at least some of that back using a straight party-line vote. What does this bode for the rest of Congress’ appropriations work for the fiscal year that starts in just a couple of months? 

Raman: I think that the sense has been that once this goes through, I think a lot of people have just been assuming that it’ll take time but that things will get passed on rescissions. It really puts a damper on the bipartisan appropriations process, and it’s going to make it a lot harder to get people to come to the table. So earlier this week we had the chair of the Appropriations Committee and the chair of the Labor, HHS [Health and Human Services], Education subcommittee in the House say that the health appropriations they were going to do next week for the House are going to get pushed back until September because they’re not ready. And I think that health is also one of the hardest ones to get through. There’s a lot more controversial stuff. It’s setting us up to go, kind of like usual at this point, for another CR [continuing resolution], because it’s going to be a really short timeline before the end of the fiscal year. But if you look at some— 

Rovner: Every year they say they’re going to do the spending bills separately, and every year they don’t. 

Raman: Yeah, and I think if you look at how they’ve been approaching some of the things that have been generally a little bit less controversial and how much pushback and how much more difficulties they’ve been having with that, even this week, I think that it’s going to be much more difficult to get that done. And the rescissions, pulling back on Congress’ power of the purse, is not going to make that any easier. 

Rovner: I think what people don’t appreciate, and I don’t think I appreciated it either until this came up, is that the rescissions process is part of the budget act, which is one of these things that Congress can do on an expedited basis in the Senate with just a straight majority. But the regular appropriations bills, unlike the budget reconciliation bill that we just did, need 60 votes. They can be filibustered. So the only way to get appropriations done is on a bipartisan basis, and yet they’re using this rather partisan process to take back some of the deal that they made. The Democrats keep saying it, and everybody’s like, Oh, process, process. But that actually could be a gigantic roadblock, to stopping everything in its tracks, right? 

Raman: I really think so. And if you look at who are the two Republicans in the Senate that voted against the rescissions, one of them is the Senate Appropriations chair, Susan Collins. And throughout this, one of her main concerns was when we still had the PEPFAR in there. But it just takes back her power as the highest-ranking appropriator in the Senate to do it through this process, especially when she wasn’t in favor of the rescissions package. 

So it’s going to make things, I think, a lot more complicated, and one of her concerns throughout has just been that there wasn’t enough information. She was pulling out examples of rescissions in the past and how it was kind of a different process. They were really briefed on why this was necessary. And it was just different now. So I think what happens with appropriations and how long it’ll take this year is going to be interesting to watch. 

Rovner: And it’s worth remembering that it’s when the appropriations don’t happen that the government shuts down. So, but that doesn’t happen until October. Well, separately we learned that — oh, go ahead, Joanne. 

Kenen: There’s also sort of a whole new wrinkle, is that rescissions is, if you’re a Republican and you don’t like something and you end up, to avoid a government shutdown or whatever reason, you end up having to vote for a bill, you just have the president put out a statement saying, If this goes through, I’m going to cut it afterwards. And then the Republican who doesn’t like it can give a floor speech saying, I’m voting for it because I like this in it and I know that the president’s going to take care of that. It really — appropriations is always messy, but there’s this whole unknown. The constitutional balance of who does what in the American government is shifting. And at the end of the day, the only thing we do know after both the first term and what’s happened so far even more so in the second term, is what [President Donald] Trump wants, Trump tends to get. 

So, Labor-H [the appropriations for Labor, HHS, Education and related agencies], like Sandhya just pointed out, the health bill is one of the hardest because there’s so much culture-war stuff in it. But, although, the Supreme Court has put some of that off the table. But I just don’t know how things play out in the current dynamic, which is unprecedented. 

Rovner: And of course, Labor-HHS also has the Department of Education in it. 

Kenen: The former Department of Education. 

Rovner: To say, which is in the process of being dismantled. So that’s going to make that even more controversial this year. Moving back to the present, separately we learned this week that the administration plans to spend hundreds of thousands of dollars of taxpayer money to destroy stocks of food and contraceptives and other medical devices rather than distribute them through some of the international aid programs that they’re canceling. Now, in the case of an estimated 500 tons of high-energy biscuits bought by USAID [the U.S. Agency for International Development] at the end of the Biden administration, you can almost understand it because they’re literally about to expire next week. According to The Atlantic, which first reported , this is only a small part of 60,000 metric tons of food already purchased from U.S. farmers and sitting in warehouses around the world, where the personnel who’d be in charge of distributing them would’ve been fired or transferred or called back to the U.S. 

At the same time, there are apparently also plans to destroy an estimated $12 million worth of HIV prevention supplies and contraceptives originally purchased as part of foreign aid programs rather than turn them over or even sell them to other countries or nonprofits. This feels like maybe the not most efficient use of taxpayer dollars? 

Luthra: I think this is something we’ve talked about before, but it really bears repeating. As a media ecosphere, we’ve sort of moved on from the really rapid dismantling of USAID. And it was not only without precedent. It was incredibly wasteful with the sudden way it was done, all of these things that were already purchased no longer able to be used, leases literally broken. And people had to pay more to break leases for offices set up in other countries, all these sorts of things that really could have already been used because they had been paid for. And instead, the money is simply lost. 

And I think the important thing for us to remember here is not only the immense waste financially to taxpayers but the real trust that has been lost, because these were promises made, things purchased, programs initiated, and when other countries see us pulling back in such a, again, I keep saying wasteful, but truly wasteful manner, it’s just really hard to ever imagine that the U.S. will be a reliable partner moving forward. 

Rovner: Yeah, absolutely. I understand the food thing to some extent because the food’s going to expire, but the medical supplies that could be distributed by somebody else? I’m still sort of searching for why that would make any sense in any universe, but yeah I guess this is the continuation of, We’re going to get rid of this aid and pretend that it never happened. 

Well, meanwhile, it’s only been a couple of weeks, but we’re starting to see the politics of that big Trump tax and spending measure play out. One big question is: Why didn’t Republicans listen to the usually very powerful hospital industry that usually gets its way but did not this time? And relatedly, will those Republicans who voted with Trump but against those powerful hospital interests do an about-face between now and when these Medicaid cuts are supposed to take effect? We’ve already seen Sen. Josh Hawley, the Republican from Missouri who loudly proclaimed his opposition to those Medicaid cuts before he voted for them anyway, introduce legislation to rescind them. So is this the new normal? I think, Joanne, you were sort of alluding to this, that you can now sort of vote for something and then immediately say: Didn’t mean to vote for that. Let’s undo it. 

Kenen: You could even do it before you vote for it, if they play it right. If Congress passes these things, we’re not going to pay attention. We’re already in that moment. But also, when I was working on a Medicaid piece, the magazine piece like four or five months ago, one of the most cynical people I know in Washington told me, he said, Oh, they’ll pass these huge cuts because they need the budget score to get the taxes through, and then they’ll start repealing it. And it seemed so cynical at the time, only he might’ve been right. 

So I don’t think they’re going to cut all of it. Republicans ideologically want a smaller Medicaid program. They want less spending. They want work requirements. You’re not going to see the whole thing go away. Could you see some retroactive tinkering or postponement or something? Yeah, you could. It’s too soon to know. Hospitals are the biggest employer in many, many congressional districts. This is a power— 

Rovner: Most of them. 

Kenen: Most, yeah. I don’t think it’s quite all, but like a lot. It’s the biggest single employer, and Medicaid is a big part of their income. And they still by law have to stabilize people who come in sick, and there’s emergency care and all sorts of other things, right? They do charity care. They do uninsured people. They do all sorts. They still treat people under certain circumstances even when they can’t pay. But right now, the threat of a primary opponent is more powerful than the threat of your local hospital being mad at you and harming health care access in your community. So much in the Republican world revolves around not getting the president mad enough that he threatens to get you beaten in a primary. We’ve seen that time and again already. 

Rovner: Right. And I will also say there’s precedent for this, for passing something and then unpassing it. Joanne and I covered in 19— 

Kenen: But it wasn’t the plan. 

Rovner: Yeah, I know. But remember, back in 1997 when they passed the Balanced Budget Act, every year for the next — was it three or four years? They did what we came to call “give back” bills. 

Kenen: Or punting, right? 

Rovner: Yeah, where they basically undid, they unspooled, some of those cuts, mostly because they’d cut more deeply than they’d intended to. And then we know with the Affordable Care Act, I’ve said this several times, they passed all of these financing mechanisms for it and then one by one repealed them. 

Kenen: And the individual mandate — I mean everything- 

Rovner: And the individual mandate, right. 

Kenen: They kept the dessert and they gave away everything. They undid everything that paid for the dessert, basically. 

Rovner: Right. Right. 

Kenen: And so it was the Cadillac — because people don’t remember anymore — the Cadillac tax, the insurance tax, the device tax. They all were like, One at a time! And they were repealed because lobbying works. 

Rovner: The tanning tax just went. 

Kenen: Right, right. So that dynamic existed, passing something unpopular and then redoing it, but the dynamic now really just comes — basically this is Donald Trump’s town. He has had a remarkable success in not only getting Congress to do what he wants but getting Congress to surrender some of its own powers, which have been around since Congress began. This is the way our government was set up. So there’s a very, very different dynamic, and it’s still unpredictable. None of us thought that the biggest crisis would be the [Jeffrey] Epstein case, right? Which is not a health story, and we don’t have to spend any time on it except to acknowledge— 

Rovner: Please. 

Kenen: —that there’s stuff going on in the background that people who had been extremely loyal to the president are now mad. And we don’t know how long. He’s very good at neutralizing things, too. He’s blaming it on the Democrats. 

But there is a different dynamic. Congress has less power because Congress gave up some of its power. Are they going to want to reassert themselves? There is no sign of it right now, but who knows what happens. I thought they would cut Medicaid. I thought they would do work requirements. I thought they would let the enhanced ACA subsidies expire. But I did not think the cuts would go this deep and this extensive — really transformationally pretty historic cuts. 

Rovner: Shefali, you wanted to say something? 

Kenen: Not pretty historic cuts, very historic cuts. Unprecedented. 

Luthra: I was thinking Joanne made such a good point about how, for all of the talk now about trying to mitigate that backlash, a lot of this is in line ideologically with what Republicans want. They do want a smaller Medicaid program. And I think a really interesting and still open question is whether they are willing and able to actually create policy that does reverse some of these cuts or not, and even if they do, if it’s sufficient to change voters’ perception, because we know that these cuts are very unpopular. Democrats are talking about them a lot. Hospitals are talking about them a lot. And just the failed attempt to repeal the ACA led to the 2018 midterms. And I think there is a real chance that this is the dominant topic when we head into next year’s elections. And it’s hard to say if Josh Hawley putting out a bill can undo that damage, so—. 

Rovner: Well, I’m so glad you mentioned that, because The Washington Post has a about a clinic closing in rural Nebraska, with its owners publicly blaming the impending Medicaid cuts. Yet its Trump-supporting patients are just not buying it. Now in 2010, Republicans managed to hang the Affordable Care Act around Democrats’ necks well before the vast majority of the changes took place. Are Democrats going to be able to do that now? There’s a lot of people saying, Oh, well, they’re not going to be able to blame this on the Republicans, because most of it won’t have happened yet. This is really going to be a who-manages-to-push-their-narrative, right? 

Kenen: This really striking thing about that story is that the people who were losing access, they’re not losing their Medicaid yet, but they’re losing access to the only clinic within several — they have to drive hours now to get medical care. And when they were told this was because the Republican Congress and President Trump, they said, Oh no, it can’t be. First of all, a lot of people just don’t pay attention to the news. We know that. And then if you’re paying attention to news that never says anything negative about the president, that blames everything on Joe Biden no matter — if it rains yesterday, it was his fault, right? 

So the sort of gap between — there are certain things that are matters of opinion and interpretation, and there are certain things that are matters of fact, but those facts are not getting through. And we do not know whether the Democrats will be able to get them through, because the resistance, it’s almost magical, right? My clinic closed because of a Republican Medicaid bill? Oh no, it’s hospital greed. They just don’t want to treat us anymore. They just, it doesn’t compute, because it doesn’t fit into what they have been reading and hearing, to the extent that they read and hear. 

Rovner: Sandhya, you want to add something? 

Raman: The one thing that as I’ve been asking around on Capitol Hill about the Hawley bill — and there was one from Sen. Rand Paul, and a House counterpart, from [Rep.] Greg Steube, does sort of the opposite — it wants to move up the timeline for one of the provisions. So one important thing to consider is neither of these bills have had a lot of buy-in from other members of Congress. They’ve been introduced, but the people that I’ve talked to have said, I’m not sure. 

And I think something interesting that Sen. Thom Tillis had said was: If Republicans had a problem with what some of the impacts would be, then why were they denying that there would be an effect on rural health or some of those things to begin with? And I think a lot of it will take some time to judge to see if people will move the needle, but if we’re going to change any of these deadlines through not reconciliation, you need 60 votes in the Senate and you’ll need Democrats on board as well as Republicans. And I think one interesting thing to watch there is that I think some of the Democrats are also looking at this in a political way. If there’s a Republican that has a bill that is trying to tamp down some of the effects of their signature reconciliation law, do they want to help them and sign on to that bill or kind of illustrate the effects of the bill before the midterms or whatever? 

Rovner: A lot more politics to come. 

Raman: Yeah. Yeah. 

Rovner: Meanwhile, over at HHS [the Department of Health and Human Services], there is also plenty of news. Many of the workers who’ve been basically in limbo since April when a judge temporarily halted the Trump administration’s efforts to downsize have now been formally let go after the Supreme Court last week lifted that injunction. What are we hearing about how things are going over at HHS? We’ve talked sort of every week about this sort of continuing chaos. I assume that the hammer falling is not helping. It’s not adding to things settling down. 

Kenen: No. And then Secretary [Robert F.] Kennedy [Jr.] just fired two top aides because — no one knows exactly the full story but it’s — and I certainly do not know the full story. But what I have read is that the personality conflict with his top aide — and that happens in offices, and he’s not the first person in the history of HHS to have people who don’t get along with one another. But it’s just more unsettled stuff in an agency already in flux, because now in addition to all these people being let go in all sorts of programs and programs being rolled back, you also have some leadership chaos at the top. 

Rovner: Well, meanwhile, HHS Secretary Kennedy took office with vows to eliminate the financial influence of Big Pharma, Big Food, and other industries with potential conflicts of interests. But shoutout here to my ºÚÁϳԹÏÍø News colleague Stephanie Armour, who has a story this week about how the new vested interests at HHS are the wellness industry. Kennedy and four top advisers, three of whom have been hired into the department, wrote Stephanie, quote, “earned at least $3.2 million in fees and salaries from their work opposing Big Pharma and promoting wellness in 2022 and 2023, according to a ºÚÁϳԹÏÍø News review of financial disclosure forms filed with the U.S. Office of Government Ethics and the Department of Health and Human Services; published media reports; and tax forms filed with the IRS. That total doesn’t include revenue from speaking fees, the sale of wellness products, or other income sources for which data is not publicly available.” Have we basically just traded one form of regulatory capture for another form of regulatory capture? 

Kenen: And one isn’t covered by insurance. Some of it is, but there’s a lot of stuff in the, quote, “wellness” industry that providers and so forth, certain services are covered if there’s licensed people and an evidence base for them, but a lot of it isn’t. And these providers charge a lot of money out-of-pocket, too. 

Rovner: And they make a lot of money. This is a totally — unlike Big Pharma, Big Food, and Big Medicine, which is regulated, Big Wellness is largely not regulated. 

Kenen: I think Stephanie — that was a really good piece — and I think Stephanie said it was, what, $6.3 trillion industry? Was that— 

Rovner: Yeah, it’s huge. 

Kenen: Am I remembering that number right? It’s largely unregulated. Many of the products have never gone through any review for safety or efficacy. And insurance doesn’t cover a lot of it. It doesn’t mean it’s all bad. There are certain things that are helpful, but as an industry overall, it leaves something for us to worry about. 

Rovner: Well, in HHS-adjacent breaking news that could turn out to be nothing or something really big, an appeals court in Richmond on Tuesday ruled 2-1 that West Virginia may in fact limit access to the abortion pill, even though it’s approved by the FDA [Food and Drug Administration]. It’s the first time a federal appeals court has basically said that states can effectively override the FDA’s nationwide drug approval authority. And it’s the question that the Supreme Court has already ducked once, in that case out of Texas last year where the justices ruled that the doctors who were suing didn’t have standing, so they didn’t have to get to that question. But, Shefali, this has implications well beyond abortion, right? 

Luthra: Oh, absolutely. We are seeing efforts across the country to restrict access to certain medications that are FDA-approved. Abortion pills are the obvious one, but, of course, we can think about gender-affirming care. We can think about access to all sorts of other therapeutics and even vaccines that are now sort of coming under political fire. And if FDA approval means less than state restrictions, as we are seeing in this case, as we very possibly could see as these kinds of arguments and challenges make their way to the Supreme Court. The case you alluded to earlier with the doctors who didn’t have standing is still alive, just with different plaintiffs now. And so these questions will probably come back. There are just such vast ramifications for any kind of medication that could be politicized, and it’s something that industry at large has been very worried about since this abortion pill became such a big question. And it is something that this decision is not going to alleviate. 

Rovner: Yes. Speaking of Big Pharma, they’re completely freaked out by this possibility because it does have implications for every FDA-approved drug. 

Luthra: And they invest so much money in trying to get products that have FDA approval. There’s a real promise that with this global gold standard, you will be able to keep a drug on the market and really make a lot of money on it. There’s also obviously concerns for birth control, which we aren’t seeing legally restricted in the same way as abortion yet, but it is something that is so deeply subject to politics and culture-war issues that that’s something that we could see coming down the line if trends continue the way they are. 

Rovner: Well, we will watch that space. Moving on. Wednesday was the third anniversary of the federal 988 federal crisis line, which has so far served an estimated 16 million people with mental health crises via call, text, or chat. An estimated 10% of those calls were routed through a special service for LGBTQ+ youth, which is being cut off today by the Trump administration, which accused the program, run by the Trevor Project, as, quote, “radical gender ideology.” Now, LGBTQ+ youth are among those at the highest risk for suicide, which is exactly what the 988 program was created to prevent. Yet there’s been very little coverage of this. I had to actually go searching to find out exactly what happened here. Is this just kind of another day in the Trump administration? 

Raman: I think a lot of it stems back to some of those initial executive orders related to gender ideology and DEI [diversity, equity, and inclusion] and things like that. The Trump administration’s kind of argument is that it shouldn’t be siloed. It should be all general. There shouldn’t be sort of special treatment, even though we do have specialized services for veterans who call in to these services and things. But I— 

Rovner: Although that was only saved when members of Congress complained. 

Raman: Yeah. But I do think that when we have so much happening in this space focused on LGBTQ issues, it’s easier for things to get missed. I think the one thing that I did notice was that California announced yesterday that they were going to step up to do a partnership with the Trevor Project to at least — the LGBTQ youth calling from California to any of those local 988 centers would be reaching people that have been trained a little bit more in cultural competency and dealing with LGBTQ youth. But that’s not going to be all the states and it’s going to take time. Yeah. 

Rovner: Yeah, we’re going to continue to see this cobbled together state by state. It feels like increasingly what services are available to you are going to be very much dependent on where you live. That’s always been true, but it feels like it’s getting more and more and more true. Shefali, I see you nodding. 

Luthra: Something you alluded to that I think bears making explicit is public health interventions are typically targeted toward people who are in greater danger or are at greater risk. That’s not discrimination — that’s public health efficiency. And suggesting that we shouldn’t have resources targeted toward people at higher risk of suicide is counter to what public health experts have been arguing for a very long time. And that’s just something that I think really bears noting and keeping in mind as we see what the impact of this is moving forward. 

Rovner: Yeah, I think that’s a very good point. Thank you. 

Well, speaking of popular things that are going away, a federal judge appointed by President Trump last week struck down the last-minute Biden administration rule from the Consumer Financial Protection Bureau that tried to bar medical debt from appearing on credit reports. This had been hailed as a major step for the 100 million Americans with medical debt, which is not exactly the same as buying a car or a TV that you really can’t afford. People don’t go into medical debt saying, Oh, I think I’m going to go run up a big medical bill that I can’t pay. But this strikes me as yet another way this administration is basically inflicting punishment on its own voters. Yes? 

Kenen: Yes, except we just don’t know. Some red states are so red that you don’t need every voter. We don’t know who actually votes, and we don’t know whether people make these connections, right? What we were talking about before with Medicaid — do they understand that this is something that President Trump not just urged but basically ordered Congress to do? So do people pay attention? How many people even know if their medical debt is or is not on their credit report? They know they have the medical debt, but I’m not sure everybody understands all the implication, particularly if you’re used to being in debt. You may be somebody who’s lost a job or couldn’t pay your mortgage or couldn’t pay your rent. Some of the people who have medical debt have so many other financial — not all — that it’s just part of a debt soup and it’s just one more ingredient. 

So how it plays out and how it’s perceived? It’s part of this unpredictable mix. Trump is openly talking about gerrymandering more, and so it won’t matter what voters do, because they’ll have more Republican seats. That’s just something he’s floating. We don’t know whether it’ll actually happen, but he floated it in public, so— 

Rovner: So much of this is flooding the zone, that people — there’s so much happening that people have no idea who’s responsible for what. There’s always the pollster question: Is your life better or worse than it was last year? Or four years ago, whatever. And I think that when you do so much so fast, it’s pretty hard to affix blame to anybody. 

Raman: And most people aren’t single-issue voters. They’re not going to the polls saying, My medical debt is back on my credit report. There’s so many other things, even if with the last election, health care was not the number one issue for most voters. So it’s difficult to say if it will be the top issue for the next election or the next one after that. 

And I guess just piggybacking that a lot of the times when there’s these big changes, they don’t take effect for a while. So it’s easier to rationalize, Oh, it may have been this person or that person or the senator then, or who was president at a different time, just because of how long it takes to see the effects in your daily life. 

Rovner: Politics is messy. All right, well, this is as much time for the news as we have this week? Now it’s time for our extra-credit segment. That’s where we each recognize a story we read this week we think you should read, too. Don’t worry if you miss it. We’ll put the links in our show notes on your phone or other mobile device. Shefali, why don’t you go first this week? 

Luthra: Sure. My piece is from The New York Times, by Apoorva Mandavilli. The headline is “” And she takes a look at when the head of the OMB [Office of Management and Budget] told the Senate that PEPFAR had spent almost $10 million advising Russian doctors on abortions and gender analysis. And she goes through and says this isn’t true. PEPFAR hasn’t been in Russia. They cannot fund abortions. And she talks with people who were there and can say this simply isn’t true and this is very easy to disprove. And I like this piece because it’s just a reminder that a lot of things are being said about government spending that are not true. And it is a public service to remind readers that they are very easily disproven. 

Rovner: Yeah, and to go ahead and do that. Sandhya. 

Raman: My extra credit is “,” and it’s from Cecilia Nowell for The Nation, my co-fellow through AHCJ [the Association of Health Care Journalists] this year. Cecilia went to Kiruna, which is an Arctic village in Sweden, to look at how they’re using mifepristone for abortions up to 22 weeks in pregnancy, compared to up to 10 weeks in the U.S. And it’s a really interesting look at how they’re navigating rural access to abortion in very remote areas. Almost all abortions in Sweden are done through medication abortion, and while the majority here are in the 60% versus high 90s. So just interesting how they’re taking their approach there as rural access is limited here. 

Rovner: Really interesting story. Joanne. 

Kenen: This is a piece in The New Yorker by Dhruv Khullar, and it’s “” And what I found interesting, we’ve been hearing about: Can AI do this? It’s sort of been in the air since AI came around. But what was so interesting about this article is there’s a nonprofit that is actually doing it, and they have this sort of whole sort of hierarchy of why a drug may be promising and why a disease may be a good target. And then the AI look at genetics and diseases, and they have four or five factors they look at. And then there’s this just sort of hierarchy of which are the ones we can make accessible. 

So A, it’s actually happening. B, it has promise. It’s not a panacea, but there’s promise. And C, it’s being done by a nonprofit. It’s not a cocktail for an individual patient. It’s trying to figure out: What are the smartest drugs to be looking at and what can they treat? And they give examples of people who have gone into remission from rare diseases. And also it says there are 18,000 diseases and only 9,000 have treatment. So this is huge, right? Rare diseases may only affect a few people, but there are lots of rare diseases. So cumulatively some of the people they strike are young. So for someone who doesn’t always read about AI, I found this one interesting. 

Rovner: Also, we read somebody’s story about how AI is terrible for this, that, and the other thing. It is very promising for an awful lot of things. 

Kenen: No. Right. 

Rovner: There’s a reason that everybody’s looking at it. 

All right, my extra credit this week is also from The New York Times. It’s called “,” by David Enrich, who’s The Times’ deputy investigations editor and, notably, author of a book on attacks on press freedoms. That’s because the story chronicles how UnitedHealth, the mega health company we have talked about a lot on this show, is taking a cue from President Trump and increasingly taking its critics to court, in part by claiming that critical reporting about the company risks inciting further violence like the Midtown Manhattan murder of United executive Brian Thompson last year. 

I hasten to add, this isn’t a matter of publications making stuff up. United, as we have pointed out, is a subject of myriad civil and criminal investigations into potential Medicare fraud as well as antitrust violations. This is still another chapter unfolding in the big United story. 

OK, that is this week’s show. Thanks as always to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. If you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us to 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 find me on X, , or on Bluesky, . Where are you folks hanging these days? Shefali? 

Raman: I’m at Bluesky, . 

Rovner: Sandhya. 

Raman: I’m and , @SandhyaWrites. 

Rovner: Joanne? 

Kenen: I’m mostly at Bluesky, , and I’ve been posting things more on , and there are more health people hanging out there. 

Rovner: So we are hearing. We will be back in your feed next week. Until then, be healthy. 

Credits

Francis Ying Audio producer
Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to ºÚÁϳԹÏÍø News’ “What the Health?” on , , , or wherever you listen to podcasts.

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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‘We Need To Keep Fighting’: HIV Activists Organize To Save Lives as Trump Guts Funding /medicaid/hiv-federal-funding-trump-cuts-mississippi-activists-organize/ Tue, 24 Jun 2025 09:00:00 +0000 /?post_type=article&p=2049344 GREENVILLE, Miss. — Cedric Sturdevant woke up with “a bit of depression” but made it to church, as he does every Sunday. In a few days, he would drive from Mississippi to Washington, D.C., to join HIV advocates at an April rally against the Trump administration’s actions.

It had clawed back more than $11 billion in federal public health grants to states and abruptly terminated millions of dollars in funds for HIV work in the United States. Testing and outreach for HIV faltered in the South, a region that accounts for of all HIV diagnoses.

Dangerous changes loomed: To compensate for tax cuts for the wealthy, Trump’s “big, beautiful” bill and budget proposal for fiscal year 2026 threaten to curtail Medicaid, which provides health coverage for people with low incomes and disabilities. About rely on it for their lifesaving treatments.

Further, the budget at the Centers for Disease Control and Prevention. This alone could lead to an within the next five years, according to one analysis.

Trump’s budget proposal also would that provides housing assistance for people with HIV. And it would end a strategic initiative to expand HIV services in minority communities, and another to support the mental health of people of color with HIV or at risk of infection.

“President Trump is committed to eliminating radical gender and racial ideologies that poison the minds of Americans,” a White House addendum to the budget says. Letters terminating HIV grants used similar language, targeting “diversity,” “equity,” and “gender minorities,” words that focus resources where they are needed most. Black and Latino people of new HIV infections in the U.S.

The cuts affect Sturdevant personally. He is a gay, Black man living with HIV and the co-founder of a grassroots group that combats health disparities in the Mississippi Delta, one of the poorest regions of the country.

A small HIV clinic operated by Mississippi’s AIDS Services Coalition is no longer testing people for HIV because of federal funding cuts and delays. (Amy Maxmen/ºÚÁϳԹÏÍø News)
A pastor, wearing a grey suit and gingham tie, holds a microphone as he speaks to an audience.
“Walk boldly!” said pastor Jerry Shelton during a sermon at the Anointed Oasis of Love Ministry church in the Mississippi Delta. (Amy Maxmen/ºÚÁϳԹÏÍø News)
The exterior of a red-brick church.
Communities in the Mississippi Delta come together on Sundays at the Anointed Oasis of Love Ministry church. (Amy Maxmen/ºÚÁϳԹÏÍø News)

That morning at church, a close friend, pastor Jerry Shelton of Anointed Oasis of Love Ministry, asked Sturdevant to help him deliver a sermon about resisting the urge to give up when life is hard. “The storm may come, but I shall not be moved!” Shelton preached, directing the congregation to approach adversity with confidence in themselves and in God. “Walk boldly!” he shouted.

After the service, Sturdevant resolved to bring the same energy to Washington. He’d tell his colleagues that they are survivors, he said. He’d tell them, “Let’s get together and make a plan.”

In the past few months, HIV advocates have begun to organize and strategize ways to limit the damage as federal funds are slashed and rises.

“It is a very scary time to be Black, queer, and living with HIV,” said Marnina Miller, co-executive director of the , a nationwide group for women living with HIV. “But I am grateful that I am part of a community that will not bow down.”

“People are not giving up,” said June Gipson, the CEO of a health care nonprofit, , in Mississippi. Then she referenced the where heroes combine forces to create a super robot to defend the universe:

“We’ve got to form Voltron.”

The Weight of Stigma

Sturdevant often reminds his colleagues of all the HIV movement has overcome. In the 1980s, the government refused to acknowledge HIV as gay men died young. Once powerful treatments were available in the 1990s and early 2000s, the public health establishment with HIV, especially in the South. In that period, the demographics of the epidemic shifted away from white, upper- and middle-class gay populations in liberal states. today are in the South and a third are among people with low incomes.

When Sturdevant first tested positive for HIV in 2005, he didn’t seek treatment. He kept his diagnosis hidden from friends and family because he knew how people talked about HIV. They considered it a death sentence, a punishment for irresponsible behavior, or a disease that could infect them through a touch or a shared toilet seat — which it cannot.

“I thought my family was going to disown me,” he said.

A year later, his weight plummeted because he couldn’t hold down food or water. Gaunt and feverish, he went to the hospital and learned he had AIDS. His mother slept at his hospital bedside for two weeks: “She said, ‘God got you.’”

Sturdevant sits beside his mother, Gloria Sturdevant Allen. She slept by his hospital bedside for weeks when he was extremely sick from untreated HIV. (Amy Maxmen/ºÚÁϳԹÏÍø News)

Once he regained his health, Sturdevant resolved to care for others in his position. Scientists had developed powerful HIV drugs that, if taken daily, transform it from a death sentence into a in which a person’s virus levels are so suppressed that they cannot spread HIV to others. And policymakers ensured that almost everyone in the U.S. with HIV could get treated regardless of their ability to pay, largely because of Medicaid and the Ryan White HIV/AIDS Program.

But HIV experts had failed to overcome a key problem: of people living with HIV in the U.S. don’t get treated or don’t take the drugs regularly enough to be virally suppressed. Viral suppression rates are better in many than in America.

To seek treatment and stick with it, Sturdevant understood, people had to have basic needs like food and housing met and, as importantly, a sense of belonging and empowerment. At his first job at an HIV organization in Jackson, Mississippi, Sturdevant regularly checked in with clients who didn’t have family members to support them. He hosted gatherings at his apartment and even offered it up as a place to stay. He has taken on the role of dad or uncle to many. “We called ourselves the family of love,” he said.

He saw how care bolstered lives, but the federal government needed data to drive its approach to HIV.

In 2012, the CDC expanded its in-depth surveys to learn more about the lives of people at risk of HIV and of those with HIV who weren’t virally suppressed. The surveys revealed what Sturdevant knew: A disproportionate number of them grappled with unstable housing, food insecurity, depression, and anxiety. Many participants agreed to prompts like, “Having HIV makes me feel that I’m a bad person,” or “Most people think that a person with HIV is disgusting,” or “Most people with HIV are rejected.”

The data showed policymakers that to curb the epidemic, they needed to address underlying problems that people with HIV faced. Federal funds began to flow to grassroots groups embedded in marginalized communities.

Public health researchers folded Black churches into the effort, recognizing them as hubs of volunteerism and as leaders of social movements. Although churches in the U.S. had historically fueled stigma against sexually transmitted diseases, Amy Nunn, a public health researcher at Brown University, said every pastor she talked with was eager to help. It . In Kansas City, for example, that congregants who went to Black churches involved in HIV education and outreach were more than twice as likely to be tested.

Community-based interventions worked: New HIV infections dropped by 12% from 2018 to 2022.

Now the grassroots groups that have been so effective are in jeopardy and the in-depth surveys have halted as the Trump administration cuts funds and lays off CDC staff. Some health departments have issued stop-work orders to community-based groups that test people for HIV and connect them to treatment because federal HIV grants are unusually delayed. And as the Department of Health and Human Services continues to cancel HIV grants, the directors of grassroots groups anticipate more cuts.

“A lot of them are new and don’t have the resources to survive a year without funding,” said Masen Davis, executive director of Funders Concerned About AIDS.

One such group is Sturdevant’s.

‘Trust the Process’?

In 2017, Sturdevant returned home to the Mississippi Delta to launch a nonprofit, , in one of the poorest and most medically underserved parts of the country. The , a decade shorter than the national average. The disenfranchisement of its majority-Black population stems from the region’s history, in which policies concentrated wealth and power among the minority-white population during the era of cotton sharecropping, Jim Crow laws and segregation, and, recently, .

Jabari Baymon is a manager at the grassroots organization Community Health PIER, which tests for HIV and connects people to treatment as part of its work on health equity in the Mississippi Delta. (Amy Maxmen/ºÚÁϳԹÏÍø News)
A statue of Fannie Lou Hamer in a park on a sunny day.
The Mississippi Delta is one of the most underserved regions in the country, a situation rooted in sharecropping, Jim Crow laws, segregation, and gerrymandering. The Delta was home to many civil rights activists, including Fannie Lou Hamer, who is buried there (above). (Amy Maxmen/ºÚÁϳԹÏÍø News)
An environmental landscape shows three large metal crosses rising from a lush green field dotted with small white flowers.
Crosses from one of hundreds of small churches in the Mississippi Delta region. (Amy Maxmen/ºÚÁϳԹÏÍø News)

Sturdevant set up shop in Greenville, near a Black church that served as a activists in the 1960s. In a small office, his team organizes health events, tests people for HIV, and connects those who test positive with treatment and housing assistance, funded through federal programs like Ryan White.

“Whites have been getting Ryan White and other programs for years and living healthy,” said Ashley Richardson, administrative assistant of Sturdevant’s group. “Around here, Black people are just now getting to the point where we know there are resources to help.”

Lately the team fields calls from people with HIV who are terrified they will lose their lifesaving drugs and housing if government programs no longer help with the cost.

Sturdevant worries about keeping his staff employed and his community safe. On the drive home from the April event in Washington, he drearily recounted conversations with Republicans in Congress: “They basically all said trust the process.”

The heads of national HIV organizations have stepped up their advocacy, asking Congress to oppose cuts in President Donald Trump’s budget request, said Gregorio Millett, director of public policy at the Foundation for AIDS Research, a nonprofit known as amfAR.

Emily Hilliard, spokesperson for the Department of Health and Human Services, responded to queries from ºÚÁϳԹÏÍø News by writing, “Critical HIV/AIDS programs will continue under the Administration for a Healthy America.” Yet the administration’s proposed budget for HIV prevention represents a 78% reduction compared with fiscal year 2025, according to

HHS Secretary Robert F. Kennedy Jr. has fostered skepticism  about scientific facts concerning HIV, without citing evidence. “Any questioning of the orthodoxy that HIV is the sole cause of AIDS remains an unforgivable-even dangerous-heresy among our reigning medical cartel,” he wrote in a 2021 book.

Not Bowing to Barriers

Researchers and HIV advocates are hashing out strategies to fill in the vacuum in HIV care that the government is poised to leave. For decades, it has driven priorities, coordinated a constellation of HIV groups, and tracked the epidemic. Leisha McKinley-Beach, CEO of a training institute, Black Public Health Academy, in Atlanta, said people must remember that wasn’t always the case.

“This massive industry we have today was created by committed individuals at the grassroots level, who were going to help people live with HIV or die with dignity, by any means necessary,” she said.

One idea is to have larger, established HIV organizations partner with nascent groups in underserved regions. The bigger ones stand a better chance of garnering significant private donations. And by taking on the fiscal management of grants, large groups could enable small ones to devote time to service rather than fundraising, McKinley-Beach said.

Another strategy, said Kathy Garner, executive director of Mississippi’s , is to fill gaps by coordinating with churches and nonprofits dedicated to food assistance, housing, or mental health.

“One of the solutions is going to be civil society stepping up,” Garner said. “That’s an old term for people taking care of each other, outside of the government.”

A woman sits at a desk covered in stacks of paper and two computer monitors.
Kathy Garner at Mississippi’s AIDS Services Coalition holds a grant application for federal funds to support housing for people living with HIV. President Donald Trump’s budget proposal would eliminate this program, which was established in 1992 and funded at $505 million in 2025. (Amy Maxmen/ºÚÁϳԹÏÍø News)
A man faces the camera as he sits his desk that is covered in papers and books.
“I have real concerns with what the Trump administration is doing, and how it will play out for the health of people in a poor state,” said Bishop Ronnie Crudup of New Horizon Church International in Jackson, Mississippi. (Amy Maxmen/ºÚÁϳԹÏÍø News)

“We’re going to need to ramp up our services in all kinds of ways, and health and HIV will be a part of that,” said Bishop Ronnie Crudup of New Horizon Church International in Jackson, and a member of Mississippi Faith in Action, a coalition of African American churches involved in HIV.

“I have real concerns with what the Trump administration is doing, and how it will play out for the health of people in a poor state,” he said.

National groups, such as AIDS United, have been speaking with corporate funders and philanthropies about building a pooled fund to help sustain HIV organizations across the U.S.

Philanthropy for HIV has never come close to matching federal dollars, however. Non-governmental funders put $284 million toward HIV in the U.S. in 2023, compared with about for HIV in recent years.

“The truth is there is no way for philanthropy to make up for the cuts from the federal government,” Davis said. “I suspect we will see new infections rise within 18 months, which is heartbreaking.”

Sturdevant focuses on survival, not forecasts. “This isn’t going to be easy,” he said, “but we need to keep fighting for those who don’t have the fight in them.”

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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CDC Staffing Upheaval Disrupts HIV Projects and Wastes Money, Researchers Say /public-health/hiv-research-cdc-staffing-upheaval-wastes-money/ Fri, 13 Jun 2025 13:38:26 +0000 /?post_type=article&p=2048941 Dozens of HIV experts at the Centers for Disease Control and Prevention received emails on Wednesday revoking notices they received 10 weeks ago that laid them off. Damage to their projects may be permanent, however, and ongoing restrictions on their research will harm lives, multiple HIV scientists at the CDC told ºÚÁϳԹÏÍø News on condition of anonymity because of fears of retaliation.

The researchers were laid off in early April, just before they put the finishing touches on in-depth, national surveys about HIV. Health officials across the country had interviewed tens of thousands of people at risk of acquiring HIV, or who are living with the virus, and compiled information from mountains of medical records.

States and cities were prepared to submit the information they collected to the CDC in April so the agency’s statisticians could prepare the volumes of data for analysis.

Health officials and policymakers use the data to design HIV programs that more efficiently curb the spread of infections and save lives. For example, a revealed that about half of adults under age 30 who were living with HIV weren’t on treatment steadily enough to keep them healthy and prevent them from spreading the virus to others. Treatment rates were far higher for those over 50. As a result, health officials doubled down on outreach to younger generations.

However, in April, state and local health officials found themselves cut off from their CDC counterparts after the layoffs. Emails from the Department of Health and Human Services told staff their roles were “either unnecessary or virtually identical to duties being performed elsewhere in the agency.”

Marti Merritt, a project coordinator at the Illinois state health department, was flabbergasted that she and other state employees had invested more than a year into the surveys only to have them go dark in the final phase. “It’s like the data has gone into a black hole,” she said. “How do you set priorities if you don’t have data?”

Merritt worries that if the surveys don’t resume, limited budgets will be misspent — and that cases will rise. Data allows health departments to tailor their efforts to the populations at greatest risk of infection or disease progression.

Evidence shows that preventing HIV is far cheaper than treating people once they’re infected. Preventing one HIV infection results in . Merritt was also dismayed to have wasted the time of thousands of people who opened up about intimate details of their lives in hopes of fighting the HIV epidemic.

A doctor and HIV expert reinstated at the CDC this week said the late termination of the surveys would waste millions of taxpayer dollars that have already been spent on data collection. Two large, long-standing efforts, the Medical Monitoring Project and the National HIV Behavioral Surveillance system, cost around $72 million, he said.

“Two years’ worth of data from 30,000 participants will be unusable, and therefore wasted,” if the projects can’t be finished, he said.

To resume the surveys, he and other CDC researchers would need a green light from higher up because the grants covering these surveys ended while they were on administrative leave in May.

State health officials said they haven’t received the CDC notices that typically renew the surveys every June. Merritt has conducted interviews for the Medical Monitoring Project for about 20 years, she said, but the Illinois health department has now assigned her to other tasks. Other health departments have or reassigned employees dedicated to HIV surveillance, too.

If HHS allows the reinstated researchers to resume the projects, they could try to account for the 10-week gap in their analysis. But it would take time, further delaying the next round of surveys — if those begin at all.

“These surveys aren’t lights that you turn on and off,” said John Brooks, a researcher who retired from the CDC’s Division of HIV Prevention last year. If the surveys resume, he said, “we can get some value out of all of the money spent.”

However, the surveys would be further impaired by actions related to Trump’s executive orders targeting words such as “gender” that researchers use to learn who has HIV, who is at risk, and why.

Experts at the CDC said they’ve already had to revise earlier surveys and recalculate results to not reference gender. This has meant altering data on two populations disproportionately affected by HIV: transgender people and men who have sex with men.

“To erase people from our data harms them,” said the researcher and doctor now reinstated at the CDC. “I care about the transgender patients I see, and it’s so hurtful to see them treated this way by the government.”

The doctor said he has treated HIV patients since the beginning of the epidemic in the 1980s, and the sting he feels now is worse than under President Ronald Reagan, who never publicly mentioned HIV in his first term.

“There was a lack of funding,” he said, “but they didn’t censor science or try to control science like they’re doing now.”

Many HIV researchers have taken jobs outside the government or moved since the April layoffs. Some researchers returning to the agency called the reinstatements perplexing because the notices don’t say what they’ll be doing when they return and for how long.

A terse email to CDC employees from Tom Nagy, chief human capital officer at the Department of Health and Human Services, reviewed by ºÚÁϳԹÏÍø News, simply refers to the notice regarding the reduction in force and says, “That notice is hereby revoked.”

In an email response to queries, Andrew Nixon, HHS director of communications, wrote, “HHS is streamlining operations without compromising mission-critical work. Enhancing the health and well-being of all Americans remains our top priority.”

“We’ve been getting paid this whole time even though we’ve not been allowed to work, and that doesn’t feel good when you’re a dedicated civil servant,” said one reinstated employee.

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

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

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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