“Keep Doing What We Need to Do”: Scientists and Activists Unite at Pre-CROI Workshop

Every year, hundreds of the leading HIV researchers gather for CROI – the Conference on Retroviruses and Opportunistic Infections – and this year, the conference was held in San Francisco Started in 1993, it’s one of the most important scientific meetings in HIV research, where groundbreaking studies that chart the future of HIV treatment and cure strategies are presented. The day before CROI officially began this year, San Francisco AIDS Foundation hosted the “Pre-CROI Community HIV Cure Research Workshop” to bring together people working towards an HIV cure with community members interested in learning more about novel strategies currently being tested. 

The stark decline in federal support for global and domestic HIV prevention, treatment, support, and research could not go unacknowledged. 

“We have been through some really difficult challenges,” said Dr. Diane Havlir to a room of scientists who sat shoulder-to-shoulder with community activists, acknowledging the shifting political space that’s impacting everyone who attended. “But one of the things we have to do is keep doing what we need to do – if we’re scientists, we need to keep doing science. If we’re community members, we have to keep being in the community.”

HIV cure science is indeed progressing. Ten individuals have now been cured of HIV through stem cell transplants – a number that would have seemed impossible just a few years ago. While these cases aren’t scalable solutions (they were all cancer patients who needed stem cell transplants), they serve as proof that a cure is possible.

But what does “cure” mean to those who have lived with HIV for decades? It’s an important question that Dr. Monica Gandhi, an HIV/AIDS expert, often anticipates. “People living with HIV can live healthy lives, indeed, but there’s still a major cost to be able to do so,” she says. “A cure for HIV is still necessary because people living with HIV still face health challenges, must maintain daily treatment regimens, and deal with the persistent stigma of the disease.”

For many long-term survivors who attended the HIV cure pre-conference, like Hulda Brown, an early client of WORLD (Women Organized to Respond to Life-threatening Diseases), and Rebecca Denison, the founder of WORLD, the journey has been marked by both breakthroughs and heartbreaks. WORLD became a crucial force for women living with HIV, providing peer support, education, and advocacy when such resources for women were scarce. And since WORLD began in Rebecca’s Oakland living room, these two women have seen treatments evolve from handfuls of pills to single tablets, watched friends both survive and succumb, and learned to balance hope with pragmatism.

Being in this space with these visionary leaders felt different this year under an increasingly hostile federal government. The very same morning as the pre-conference, the New York Times reported a list of words that are actively being erased from government programs including: “activists,” “advocates,” “affirming care,” “BIPOC,” “Black,” “LGBTQ,” “mental health,” and other words that mean so much to people actively engaged in HIV research, communication, and advocacy. 

“CROI is not federally funded, so our meetings are not censored,” Dr. Diane Havlir pointed out. 

While trans members of the community face increasing hostility in many states and scientists worry about funding and political pressures, the pre-conference felt like a space where  people could be among like-minded individuals. The response from the room was clear: keep going, keep fighting, keep supporting each other.

When asked to stand if they were comfortable disclosing their HIV-positive status, several attendees rose. It’s a powerful reminder that this isn’t just about data points and clinical trials – it’s about people’s lives, hopes, and futures.

The path to a cure may still be winding, but this gathering showed that the HIV community’s greatest strength has always been its ability to hold space for both scientific rigor and human compassion, for both expertise and learning, for both hope and realism. As one attendee put it, “This community is incredible.” Looking around the room, it was hard to disagree.