We Are Still Here
The legacy of ACT UP for today’s HIV-prevention activists
--
This reflection was published in early April on the PrEP Facts Facebook group. That group disseminates information about PrEP, a recent HIV-prevention strategy that involves taking prescription drugs before exposure to prevent transmission of HIV. It has been lightly edited for publication here.
I had a rough March and about two weeks ago decided to take an indefinite hiatus from Facebook. Instead, I turned to the mountain of books threatening to engulf my nightstand and started reading David France’s How to Survive a Plague (Knopf, 2016). Given what I do for a living (teach LGBTQ+ Studies) I’m embarrassed I hadn’t yet read it.
France is a New-York based journalist who had a front-row seat to the emergence of the AIDS crisis. His book chronicles the terrible toll of its first 15 years and the community’s response — largely from the perspective of ACT UP New York.
In the face of what can only be described as a passive genocide overseen by a unfeeling and inhumane medical, pharmaceutical, religious, and political establishment, AIDS activists transformed medical research and patient care.
They invented (from almost nothing) direct services for those living with HIV/AIDS; insisted that people with HIV/AIDS be included at all levels of decision-making about research and treatment protocols; engineered a coordinated U.S. national strategy for HIV/AIDS research; designed innovative drug testing protocols with “parallel tracks” so desperate people with HIV/AIDS could access potentially-lifesaving drugs rather than useless “placebos”; created alternative overseas supply chains for drugs yet-to-be approved in the U.S.; translated and disseminated the latest research findings to the community and media; and invented the very concept and practice of “safe sex.”
About 2/3rds through France’s lengthy and heart-wrenching book, I ended my Facebook…
