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.

Hardback cover of “How to Survive a Plague”

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.

Poster created by Silence = Death Project | Public Domain

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 hiatus and again began reading posts in [the PrEP Facts Facebook] group. It struck me immediately that the book represents the prehistory of PrEP Facts.

For many, many people HIV infection is no longer a death sentence but frequent posts to [the PrEP Facts Facebook group] remind us that there are still inexplicably-ignorant medical “providers;” discriminatory employer prescription drug plans; unequal financial and geographical access to PrEP drugs; racial inequality in HIV infection rates and access to prevention and treatment; and fears of criminal prosecution for traveling abroad with legally-prescribed drugs.

Truvada, a PrEP drug. Photo: Wikimedia Commons | CC0 Public Domain license

Antiretrovirals, including Truvada for PrEP, have changed the global trajectory of the HIV/AIDS pandemic, but fear, anxiety, ignorance, and discrimination persist. In response, and not too dissimilarly from ACT UP and one of its offshoots the Treatment Action Group, PrEP Facts comprises a group of self-educating citizens who distribute accurate information about sexual health; point members to affordable PrEP drug providers; summarize and disseminate latest research findings; and advise members about available options for protecting their sexual health.

We are also a powerful community of HIV/AIDS activists!

Photo: Pixabay | CC0 Public Domain license

Then, as now, our work is characterized by “love,” that mushy-feely word central to this group’s purpose (as [group founder] Damon L. Jacobs likes to occasionally remind us).

This fact calls to mind the famous line from W. H. Auden’s poem “September 1, 1939” (“We must love one another or die”) recycled by that cantankerous firebrand (and mother of ACT UP) Larry Kramer into the lesser-known subtitle of his famous play about living with AIDS, The Normal Heart (three words also borrowed from Auden’s poem).

W. H. Auden: “We must love one another or die.”

Kramer’s emphasis on love as a tool of self-preservation also informed some of the earliest conceptions of safe sex. Safe-sex practices offered not just potential protection from HIV infection; they also expressed a sex-positive form of love and caring, for both self and sexual partners (at a time when political and religious ‘leaders’ were openly advocating for the extermination of homosexuals and those living with HIV/AIDS).

Attitudes towards condoms may have shifted, but in the mid-1980s, their widespread adoption presupposed self-worth and a desire to love and care for each other. At a time we were being told we deserved death, condoms materially and symbolically asserted our right to life. And sex.

Photo: Pixabay | CC0 Public Domain license

Next Friday I turn 53; I came out in 1984. My entire adult life as a gay man has been coextensive with the AIDS pandemic. Due a variety of peculiar circumstances, I spent most of the intervening years in small towns and cities, far from the U.S. epicenters of HIV infection, AIDS deaths, and AIDS activism.

That, and a crippling shyness in all matters sexual (reinforced by a mortal fear of the potential outcome if my deepest desires were ever realized), allowed me to enter middle age uninfected, if not unharmed.

For, we have yet to heal the collective trauma our society incurred from the loss of an entire generation of bisexual and gay men, not to mention the psychological costs of reflexive associations between sexual pleasure, disease, and death.

Photo: Pixabay | CC0 Public Domain license

I suspect there are many activists from that era — members of now-disbanded ACT UP chapters in New York, San Francisco, Chicago, L.A. and elsewhere around the country and world — who are now members of [the PrEP Facts Facebook] group.

To them I want to say “thank you” for all you did to help keep me alive.

Even though we’ve never met, I still felt (and feel) your love. I know not from what reservoir of strength and hope you drew amidst mass death, unacknowledged loss, and unprocessed grief. But I recognize you as heroes and saviors.

Today, we carry on your work.

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Michael J. Murphy, PhD, is Associate Professor of Gender & Sexuality Studies at the University of Illinois Springfield. He is the author of many book chapters, and encyclopedia and journal articles. Most recently, he edited Living Out Loud: An Introduction to LGBTQ History, Society, and Culture (New York: Routledge, 2019). He tweets @emjaymurphee.

Prof. of Gender & Sexuality Studies, U. Ill. Springfield

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