AIDS Treatment Activism: A Bay Area Story

By Brenda Lein

In the face of daily tragedy, the Bay Area’s AIDS treatment activists of the 1980s and 1990s undertook their advocacy with defiance, determination and hope. They distributed experimental medications for people with AIDS. They founded advocacy organizations demanding government and industry-sponsored research on the disease, and then demanded community participation in those initiatives. They took to the streets in order to attract and leverage media attention.

“AIDS Treatment Activism: A Bay Area Story” is a new online exhibition on the GLBT Historical Society’s website. The show uses documents, flyers, photographs, ephemera and audiovisual materials to explore the rise and growth of the treatment-activism movement in the San Francisco Bay Area. History Happens interviewed curator Brenda Lein, a veteran of the treatment-activist movement, as she put the finishing touches on the exhibition.

Q: What drew people to AIDS treatment activism in the 1980s?

People find their path to activism in different ways and for different reasons. Some are fighting for their lives, or the lives of their friends or a lover. Others are digging themselves out of wells of grief or rage and looking for both escape and empowerment. For still others it is a way to grasp at control during a time that is chaotic and out of control. In the 1980s, HIV was spreading through the LGBTQ and other undervalued communities, while mainstream America went on, business as usual. It’s the same with the Black Lives Matter movement today; for decades Black Americans have been dying at the hands of largely white “law enforcement.” When lives hang in the balance and people are dying before you, you turn up the volume. Many people who turned to treatment activism felt there was simply no other choice but to act. They were not extraordinary; they were very ordinary people in an extraordinary situation and they rose to the moment.

Q: What was the relationship of treatment activists to the medical community? Did it evolve over time? 

There were a few different kinds of relationships at play. The mainstream medical establishment didn’t (and still doesn’t) have much room for input from the communities it serves. There was reticence to embrace community involvement, but AIDS treatment activists weren’t waiting for permission; they were reading medical journals (with a thesaurus in hand) and attending scientific conferences. It wasn’t long before they were more informed about HIV disease and the bleeding edge of research than the average general practitioner. Over time treatment activists were invited as featured guests to speak at Continuing Medication Education forums.

The relationship of activists to the research establishment was a different animal. Initially, researchers made efforts to minimize contact and input from community activists. Perhaps not surprisingly, the brightest scientists — the thought leaders — were often the first to sit down with treatment activists. When their peers and colleagues witnessed positive and growing relationships between activists and scientific leadership, it softened the edges. As activists were made privy to the barriers to scientific progress, they marshaled their forces and fought for changes that loosened purse strings and resulted in meaningful reforms. When scientists were flooded with more resources, they began reaching out to the activists as partners, as opposed to adversaries.

Q: How does this exhibition document a uniquely Bay Area story?

While AIDS treatment activists emerged in many urban areas, both the approach and focus of activists in the Bay Area were unique. The community in San Francisco mobilized more rapidly, establishing organizations to provide care and services, buyers’ clubs to provide access to experimental therapies and HIV information networks emerged. And while New York is known as the birthplace of ACT UP, San Francisco was the birthplace of treatment activism. Project Inform was founded in 1984 to provide information, advocacy and inspiration to people living with HIV. On the proposal of an ACT UP Golden Gate member, Jesse Dobson, Project Inform created Project Immune Restoration, an advocacy program focusing research attention on immune therapies and advanced-stage AIDS. This focus area of activism became signature to Bay Area treatment activists.

Brenda Lein was a member of ACT UP/San Francisco, a founding member of ACT UP/Golden Gate, and held the dual positions of director of information and advocacy and director of Project Immune Restoration at Project Inform.