Dealing with a Republican Congress to save HIV programs

Like most congressional Republicans, Rep. Mike Lawler has generally lined up behind President Donald Trump’s MAGA agenda. But on March 20, the New York congressman sent an open letter to Health and Human Services Secretary Robert F. Kennedy, Jr., a vaccine skeptic and AIDS denier, asking him to preserve HIV prevention programs at the Centers for Disease Control and Prevention (CDC).

“Our country has been at the forefront of the global fight against HIV and AIDS, and in recent years, President Trump has particularly led this charge,” read the letter. “In 2019, he launched the Ending the HIV Epidemic in the U.S. (EHE) initiative to further scale up diagnosis, treatment, prevention, and response for domestic cases of HIV. The goal being to end the HIV epidemic in the U.S. by 2030. As the Administration continues to fight for this objective, now is not the time to cut programming.”

In more normal political times, the letter would be a fairly unremarkable plea by a Republican from a state that has long been burdened by HIV/AIDS. But with nearly all Republicans not loyal to Trump having been purged from Congress and GOP members of Congress (MOCs) seeming in lockstep with the president to drastically slash social spending to enable tax cuts for the very rich, these are not normal times. Which is why Lawler’s letter raised happy eyebrows among HIV/AIDS advocates.

“I think we were all very pleasantly surprised” by it, said Emily McCloskey Schreiber, senior director of policy and legislative affairs for NASTAD, which helps state and local health departments implement federal funds for HIV services. “He wrote it completely on his own and it was wonderful to see a Republican standing up for HIV prevention.”

Lawler has been virtually the only Republican in a Trump-aligned Congress to say anything publicly on behalf of HIV funding—at a time when the White House has decimated global and domestic HIV/AIDS programs and gutted the federal workforce that administers them while Congress has stood passively on the sidelines. 

The letter was certainly on HIV/AIDS advocates’ minds when they gathered in the nation’s capital on March 31–April 2 alongside HIV community people for AIDS United’s annual AIDSWatch conference to visit congressional offices to lobby for continued HIV funding.

According to Carl Baloney, Jr., CEO of AIDS United, the event drew 630 advocates (about half of them living with HIV), including the heads of about 50 AIDS service organizations, from 38 states. More than 270 meetings with congressional staffers were conducted, with informational material left at the offices of others, he said. 

The visits yielded a range of responses, he said: “There were some where it was hard to feel that they were interested and others where staff seemed to understand the longtime bipartisan support for such programs, and showed concern” for, among other things, the drastic and abrupt cuts to PEPFAR, the U.S. global AIDS program that has kept millions alive since President George W. Bush started it in 2003.

Both the Lawler letter and the AIDSWatch visits come amid efforts by HIV advocates to strategize the best way of lobbying the White House and Congress in the months to come as both entities eye massive cuts to domestic spending in order to fulfill the president’s push for further tax cuts—including a possible $880 billion in cuts to Medicaid, the program most relied on for meds and care coverage by Americans living with HIV other than Ryan White’s AIDS Drug Assistance Program (ADAP).

Who might be a sympathetic ear?

One group that is driving the strategizing is #SaveHIVFunding, a coalition of advocates and advocacy organizations led in part by the HIV prevention nonprofit PrEP4All. The group is identifying Republican lawmakers most likely to be sympathetic to preserving the programs—largely those from heavily HIV-burdened states including California, New York, Florida, Pennsylvania, New Jersey, West Virginia and Alabama. 

Those House members would include not only Lawler but also Claudia Tenney, Nick LaLota and Andrew Gabarino from New York; about nine of their Republican colleagues in California; Tom Coles in Oklahoma (an enrolled member of the Chickasaw Nation, who has a record of supporting HIV programs for Native Americans in his state); Maria Elvira Salazar in Florida and Julia Letlow in Louisiana. 

On the Senate side, they would include Shelley Moore Capito of West Virginia, Katie Britt in Alabama, Dr. Bill Cassidy in Louisiana (who traditionally has supported HIV programs), John Boozman in Arkansas and Maine’s Susan Collins and Alaska’s Lisa Murkowski—the latter two of which enjoy unusually independent status in the Senate because they held onto their seats despite parting ways from Trump on some issues during his first term. 

All these names are generally higher-value targets for advocates than most Democrats in Congress right now because Democrats, the minority party in both the Senate and the House, have extremely limited power. “The number one thing I heard from Democratic office staffers during my AIDSWatch visits was, ‘We encourage you to take these concerns to Republican offices,’” said PrEP4All’s executive director Jeremiah Johnson.

But there’s also the matter of how to approach these Republicans. At the moment, HIV advocates seem to agree that the best way is to highlight the health resources, centers and jobs that would be lost in their districts or states if funding is cut—which in turn could fuel a backlash against them that would lose them their seats (especially House members, who face election every two years). 

“Purely the humanity angle is not going to work with most of them,” said John Meade, Jr., MPH, senior program manager for policy at the prevention advocacy nonprofit AVAC. He pointed to the example of Alabama, which has a high HIV burden and where many crucial HIV programs run through the University of Alabama at Birmingham (UAB), which not only has a top HIV research and care center but UAB is also the state’s largest employer. “It doesn't matter what district you represent in that state,” he said. “Any cuts to HIV writ large are going to impact Alabama hard.”

Advocates also realize that public declarations of support from Republicans for HIV programs, even in the mild form of a polite letter like Lawler’s, will likely be few and far between. The best advocacy they might get, advocates say, are quiet calls from Republican congressional offices to White House offices, where MOCs might respectfully ask Trump operatives to spare funding for programs in their specific states, partly to help them hold onto their seats—and by extension maintain GOP control of Congress.

And that may still be a heavy lift. In some instances, Republicans junior staffers were reportedly assigned AIDSWatch duty, filling in for more experienced legislative liaisons. But even regular staff members in Republican offices often gave AIDSWatch visitors the sense that they couldn’t keep track of all the agency cuts and workforce terminations flowing from the administration.

Baloney added, “I think a lot of them didn’t realize the amount of federal research dollars that were flowing into universities in their districts, or the job impact of losing that money. It’s unclear how much of a seat [members of Congress] even have at the table” when it comes to White House-driven cuts.

What happens now?

Advocates’ efforts to preserve HIV funding are happening along three timelines. The most immediate is the effort to get Congress to claw back funding they had already appropriated but that the White House, possibly unconstitutionally, has cut off. The midterm timeline is an effort to save as much of Medicaid as possible during the cost-cutting of the budget reconciliation process that runs through September. And the longest-term may be the toughest of all: persuading a Trump-loyal—and reelection-minded—Congress not to ratify Trump’s goals as part of the FY2026 federal budget.

Several advocates said that in addition to continued lobbying in D.C., HIV community members must continue to lobby their elected officials at state and district offices. Johnson said that #SaveHIVFunding was working on coordinating such visits, and that anyone living with HIV who relies on these programs who wants to talk to these offices—especially those of the Republicans mentioned in this article—can email him at jeremiah@prep4all.org or PrEP4All campaign manager Maxx Boykin at maxx@prep4all.org.

Johnson added that PrEP4All also wants to hear from people at risk of losing their PrEP coverage if cuts go through.

Carl Schmid, who heads the HIV+Hepatitis Policy Institute, said that it’s important for advocates to get local media to cover such visits, and report on the personal stories behind them. “People need to know that it’s their state and local governments that are going to lose funding if these cuts go through,” he said.

Personal stories from the community would work in tandem with advocacy efforts of other stakeholders in HIV funding, such as the major pharmaceutical and lab testing companies, many of whom are a part of U.S. Business Action to End HIV, a network co-created by Schmid. “These companies have a major interest in making sure that these programs continue,” he said.

Advocates would only speculate off the record as to what the future might look like if major cuts go through. For example, if deep cuts are made to Medicaid, that would likely push people with HIV who receive Medicaid—particularly in red states, which have less money and political will to replace federal funds out of their own pocket—onto ADAP. 

That, in turn, could lead to reduced formularies (the list of HIV drugs that are covered) or services, or the return of ADAP waiting lists. People could lose their PrEP coverage, leading to higher rates of new infections. That could also occur if CDC prevention funds are slashed, leading to less testing and more forward spread of HIV.

But for now, despite a political climate that all agree is perhaps the most dire in AIDS history, advocates are putting on their most optimistic and determined public faces.

“I’m proud to be an HIV advocate because I remember my roots,” said Matthew Rose, who lobbies for HIV funding as a senior public policy advocate at the Human Rights Campaign (HRC). “At one point, we were dying in the streets and nobody cared, and decades later, we made millions of people around the world care. When we fight hard, we can win even against insurmountable challenges. So I remain hopeful. If I didn't, I’d have left this country already.”

Tim Murphy has been a New York City-based journalist mainly on HIV/AIDS and LGBTQ issues for 30 years. He is also the author of novels including Christodora, a New York City AIDS epic, and of the Substack The Caftan Chronicles, featuring interviews with notable gay men "of a certain age."