How to Save a Life
by David Waggoner
Once, back in the eighties, people would try anything to treat AIDS. We did not have any established regimens, and, with the pace of scientific research too slow, we took matters into our own hands. People organized to disseminate information about AIDS and what might work as an antiviral and/or an immunotherapeutic. We set up guerilla clinics and buyers clubs. We tried various ways to strengthen ourselves and fight for our health: egg lipids, or AL-721; dinitrochlorobenezene, or DNCB; Compound Q, derived from Chinese cucumber extracts; dextran sulfate, an anticoagulant; and even New Age mental cleanses, among others. We taught ourselves, if experts couldn’t.
So it is bizarre, to say the least, that, when experts can tell us a lot about COVID-19, when science has offered a panoply of practices, like mask-wearing and isolating ourselves, and a handful of vaccines, some individuals are not listening. Instead, some have chosen to experiment with injections of disinfectant and ingesting horse dewormer to prevent or treat COVID.
I understand the desperation that individuals may feel. People with AIDS were once desperate too, but our desperation was forged from the absence of established, well-studied medications and a deep fund of knowledge. We would have considered taking a vaccine, not rejected it outright in the name of “medical freedom.” The vaccine naysayers should at least listen to what the experts are saying. They should at least listen to people living with HIV/AIDS, and particularly long-term survivors, who know a thing or two about managing a virus and about how to become their own and our communities’ self-sponsored health advocates. I wish the wider public would learn from us (and experts like Dr. Fauci, someone who has responded to both HIV/AIDS and COVID). We have a lot to teach.
For example, interviewed by Senior Editor Hank Trout and photographed by our Art Director, Timothy J. Haines, cover story subject (and college instructor) Martina Clark shared with us her experiences at UNAIDS and other health-focused agencies, as well as navigating living with HIV and COVID: “Like so many of us, when I first heard about COVID-19, I did not grasp what was about to unfold. In January 2020, I began reading articles, then watching a few news clips. I bought a box of surgical masks and tried to get everyone I knew to take a few. Some laughed. Some indulged me. By February, the story was everywhere. My masks were now not so silly…As the sounds of sirens and helicopters replaced the sounds of cars and pedestrians and loud-ass New Yorkers, I immediately thought back to the mid-1980s when I lived on Castro Street in San Francisco. I began to remember some of my earliest memories of the AIDS crisis, as if it were happening all over again, but on a much larger scale. When I contracted COVID-19, I convinced myself I had a mild case because I never had to go to the hospital. But a year and change out, I’m still dealing with it.” She writes at length about her experiences in her newly published memoir, My Unexpected Life: An International Memoir of Two Pandemics, HIV and COVID-19.
Other “teachers” in this issue include Connie Norman, who is long-deceased but her life and activism have been resurrected in a new documentary, AIDS Diva. Peter Staley, who has just published a new memoir, Never Silent, also offers a wealth of insights about activism in his discussion with Hank Trout. From ACT UP to Treatment Action Group and PrEP4All, Staley has a solid track record as a dedicated and caring activist. Ruby Comer interviews Gina Brown, one of our most committed advocates, who finds teachable moments wherever she goes.
Other activists are new to the scene, like Boré Ivanoff, Philipp Spiegel, Adrienne Seed, and Nacho Hernandez—all artists featured in this month’s Gallery and all destigmatizing HIV through painting and photography and being out and vocal.
All of these teachers have taught us the most important lesson—how to learn. How to evaluate information with a critical eye. How to find credible authorities on particular subjects. How to be in charge of our own health—not in some flim-flam, grab-at-anything way, but responsibly. How to survive a plague. And how to save a life.
David Waggoner is Editor in Chief and Publisher of A&U: Art & Understanding, the first national HIV/AIDS magazine in the U.S.