‘We have to plan for the worst and hope for the best’

The Biomedical HIV Prevention Summit, an NMAC project that serves as an annual gathering of public health workers, community advocates and researchers focused on HIV prevention, might be forgiven if there was an odd disconnect between its program agenda and the topics that were most prominent in the minds of its attendees.

After all, the 2025 Summit, which ran April 10–12 in Atlanta, was designed before the dismantling of huge swaths of federal assistance programs, before the freezing of billions of dollars of HIV programs, before NIH research grants were rescinded, and before governmental web pages devoted to HIV were taken down and any mention of transgender people was wiped away. 

And so, the summit’s array of workshops and presentations on making PrEP (pre-exposure prophylaxis) more available, injectable medications, digital health, and HIV testing programs became an eerie snapshot of life as we knew it as HIV advocates only a few short months ago,  before the public health landscape changed swiftly and dramatically.

Plenary speakers surely tried to quickly adapt, tossing whatever remarks they may have initially prepared in favor of calls for action and assurances that we would make it through this dark time in our nation’s history. Even the drum corps that marched through a plenary felt unlike the usual joyful excitement and instead carried a tinge of desperation, as if cheerleading might serve as a soothing balm to the grim national crisis before us.

“I work in research,” Brian Minalga, a conference attendee, said. “We are 100% NIH-funded. We were supposed to receive money back in February, but that money has not been distributed. Impounded is the word that’s being used.”

Minalga works in the Office of HIV/AIDS Network Coordination in Seattle, Washington, and he’s definitely feeling the pinch of federal cuts. The HIV Vaccine Network, one of the groups Minalga’s office supports, just canceled their scheduled meeting at the summit because funding has disappeared. The promise of an HIV vaccine may disappear as well.

“We have folks who have taken pay cuts so the work can continue,” Minalga said. “It shows how much people believe in this work. Of course, people have been fired or laid off. Anyone with the word ‘communications’ in their title. It’s scary. I think we have to plan for the worst and hope for the best.”

Attending events like the Summit has suddenly become an exercise in creative planning. Derrick Mapp, a social services care navigator at Shanti Project in San Francisco, managed to make it. 

“I really believe in this work,” Mapp said. “I cobbled things together to get here. I’m staying with a friend instead of the hotel and used my own airline mileage for the flight.”

Even with the hardships, Mapp is trying to remain positive. “I am cautiously optimistic,” he said. “There is a history of great creativity and involvement from our HIV community in making things out of nothing.”

Before the extent of federal slashes to funding became apparent, the very active #SaveHIVFunding campaign was underway. Maxx Boykin serves as its campaign manager, working in collaboration with PrEP4All, AVAC and the HIV Medical Association. 

“We have pushed back on cuts to HIV funding and now have ramped up even further because of the Trump administration’s increase of those cuts,” Boykin said during a break between presentations. “One of the biggest worries we have is the cuts to Medicaid. Cuts to Medicaid cuts our ability to end the HIV epidemic. If funding cuts continue, then our ability to meet and strategize will be at risk. To even have spaces such as these conferences will be at risk. Even organizations that are here, if these cuts continue, will not continue to be fundable.”

Boykin is stubbornly holding onto his sense of hope as well. “People coming together gives me hope,” he said. “People are fired up, they are upset, and they are willing to take action to push back on all this, to save HIV funding and make sure our family gets the help that they need.”

Boykin has advice for anyone who wants to make their voice heard, even in the simplest way. “Contact your legislator,” he said. “Tell them to save HIV funding.”

The sense of anxiety among summit attendees was keenly felt by organizations big and small.

Miriam Whitehead heads a small grassroots organization, The SYSTEM (Share Your Story to Empower Many) in Baltimore. “People need to hear stories of victory,” Whitehead said while taking a break in a venue hallway. “There is life after diagnosis.”

Whitehead sees a direct link between federal funding and the impact on the people she serves. “These funding cuts will affect psychosocial groups,” she said. “If I can’t get out to a support group, I might drink more or find a drug or otherwise act out in unhealthy ways. All these cuts are affecting people, and I think HIV is going to increase. I don’t see HIV ending in 2030 (as the federal Ending the HIV Epidemic initiative aims to do) because of all the cuts. Stigma will rise. People will be afraid to come out of the HIV closet.”

And then Whitehead shared what is, for her, the simple, unadorned truth of the matter: “This is pushing us back to 1984,” she said.

Mark S. King is a GLAAD Media Award-winning writer and the author of a collection of his essays, My Fabulous Disease: Chronicles of a Gay Survivor.