Conflicting GOP proposals throw HIV services into deep uncertainty
Some lawmakers and advocates are increasingly unsure whether critical HIV and AIDS services will survive the federal government’s funding battle.
The GOP’s House-passed budget bill seeks to cut $1.5 billion in services for people living with and at risk for the human immunodeficiency virus (HIV) in the United States — far more than cuts proposed by President Trump and the Senate.
It is unclear whether the Senate or the White House will support the bill if it is considered after the government shutdown ends. But some have warned that passing the House’s proposed cuts would increase infections and deaths.
Rep. Rosa DeLauro (D-Conn.), the senior Democrat on the House Appropriations Committee, called the efforts a “sincere step” in a statement to The Hill.
“People across the country rely on the testing, PrEP access, early diagnosis and life-saving treatment these resources provide,” DeLauro said.
Eliminating these programs, he added, is not an option, and Americans living with HIV agree.
“Anyone old enough to remember the start of the AIDS epidemic in the US remembers the government neglect,” said Javier Muñoz, an actor living with HIV and co-founder of the #SaveHIVFunding campaign, a coalition of organizations advocating against cuts to HIV funding. “Hundreds of thousands have died. A whole generation is gone.”
“Protecting and maintaining current funding levels is a matter of life and death,” he said.
Clashing funding proposals
The House’s full-year funding bill proposes $1 billion in cuts to domestic HIV/AIDS prevention and research services. Also at stake is $525 million for the Ryan White HIV/AIDS Program, a flagship federal program that helps provide treatment for people living with HIV.
The bill’s additional proposed cuts to global initiatives bring the total reduction in HIV-related services to nearly $2 billion in the House budget.
Jeremiah Johnson, executive director of PrEP4All, an organization that advocates for universal access to HIV prevention and treatment, said the “brazen way” the Trump administration went after international HIV programs led to many immediate coverage in global programs.
He said cuts to domestic programs have recently begun to make headlines, though their potential could be devastating.
“This is something that is going to translate immediately…to fewer HIV tests, more people being diagnosed late and opportunistic infections and dying,” he said.
Rep. Mark Pocan (D-Wis.) tried to change the House bill to prevent a $1.4 billion funding cut, but his amendment failed along party lines.
“Unfortunately…we have had to make some very difficult choices among the programs contained in this bill,” Rep. Robert Aderholt (R-Ala.), chairman of the Appropriations Subcommittee on Labor, Health and Human Services, said during the bill’s markup in September.
Aderholt said he would not vote for the amendment because it does not provide a way to offset spending and the bill could violate his appropriations.
“That said, we maintain a significant investment of over $2 billion in funding for the Ryan White program in this bill,” he said at the time.
He and Rep. Tom Cole (R-Okla.), chairman of the Appropriations Committee, did not respond to a request for comment.
Aderholt’s comments point to the GOP’s efforts to follow the White House’s mandate to cut excessive spending — though that doesn’t always translate to cutting programs or executive agency funding, particularly for health-related agencies.
One example is the Housing Opportunities for Persons with AIDS (HOPWA) program, which Aderholt mentioned in his speech. The House bill maintains a $505 million budget for HOPWA even though the White House had recommended eliminating the program entirely.
Meanwhile, the Senate’s version of the full-year government funding bill — passed in September — fully maintains funding for HOPWA and Ryan White. It also provides billions to the CDC to prevent sexually transmitted diseases, including HIV/AIDS.
It reflects the Senate’s caution to cut HIV/AIDS programs, which Senate Republicans have acknowledged have been influential.
Sen. Susan Collins (R-Maine), chair of the Senate Appropriations Committee, called PEPFAR “a huge success” for getting it off the chopping block in a rescission package earlier this year, something the House urged the Senate not to do at the time.
“I can’t imagine why we would want to stop that program,” he said.
A spokesperson for the Department of Health and Human Services (HHS) told The Hill that critical HIV/AIDS programs “will continue through the Administration for a Healthier America” in response to a request for comment on proposed cuts to domestic HIV services.
The Trump administration proposed restructuring HHS to create the Administration for a Healthier America — but the agency currently remains theoretical. Congress took no action to ratify or create it.
cut ‘means death’
The disparate proposals for funding HIV services have both angered and saddened advocates, unable to gauge the federal government’s interest in continuing to fund previously bipartisan programs.
“It’s a wide variety of threats that we’re dealing with as a community, and it seems to be specifically targeted at the HIV community at this time, given the amount of focus we’re seeing on our funding,” said Johnson, PrEP4All’s executive director.
HHS layoffs earlier this year resulted in the destruction or elimination of several departments dedicated to HIV services, including the Office of Infectious Diseases and HIV/AIDS Policy.
Over the summer, the Trump administration passed the “big, beautiful bill” — a big tax and spending bill that took billions of dollars away from Medicaid, a federal and state insurance plan that is the largest source of insurance coverage for the roughly 1.2 million people living with HIV in the United States.
Medicaid covers about 40 percent of treatment costs for adults on HIV treatment, said Lindell Urbano, senior director of public policy and government relations at insurance company AmidaCare.
That includes costs for pre-exposure prophylaxis (PrEP) and the newly-approved “wonder drug” lencapavir, a twice-yearly injection hailed by experts for its potential to revolutionize HIV care.
“The thing about these drugs is that they are not cheap,” Urbano said. HIV drugs typically cost thousands of dollars, and lencapavir currently costs about $28,000 per year.
Without Medicaid, Urbano said people at risk for or living with HIV — who are disproportionately low-income — would have no access to treatment.
If either Trump’s lesser cuts or the House’s more substantial items pass, Urbano said, it will further erode progress toward ending the nation’s HIV epidemic. Distribution of HIV test kits, training of medical professionals and access to medical care in rural communities will all be cut.
“Insurance companies start with a lot of guidelines for how they cover things like these HIV prevention treatments [Centers for Disease Control and Prevention (CDC] And the way they approve drugs for prevention,” Urbano said.
The CDC’s PrEP Guidelines Work Group evaluated lenacapavir and issued a “clinical recommendation” for its use in mid-September — a little more than a week after House Appropriations Committee Republicans advanced the bill with the HIV cuts.
Urbano worries that increased politicization of the CDC could lead to approvals for treatments like lencapavir.
“It’s just a matter of what happens in the future for me,” he said. “We want a situation where people don’t have to get something that can actually be life-changing.”
Jenny Collier, CEO of the Collier Collective, which advises the #SaveHIVFunding campaign on the policy, says patients are frustrated and confused by the uncertainty.
“People aren’t sure if they’ll be on a waiting list, or if they can pay for their medication in full, or if their co-pays will be covered, or if they’ll be provided with other support services like transportation,” she added.
Munoz, a co-founder of the #SaveHIVFunding campaign, said her access to the drug would likely end without federal support or the program.
The actor, who has worked on Broadway shows like “Hamilton,” said his health insurance is based on his employment. During periods without health insurance coverage, she relies on community organizations and health centers — many of which receive federal funding — to access HIV medication.
“Cutting HIV funding means death,” he stressed. “This is not an exaggeration. These drastic cuts mean deaths that require assistance to afford life-saving and life-sustaining medications.”
