The Conference That Wasn’t There
The Good, the Bad, the Frustrating
by Hank Trout

The biannual conference of the International AIDS Society was scheduled for July 6–10 in host cities San Francisco and Oakland, California. However, the conference, which usually draws tens of thousands of attendees, morphed into an online “virtual” event—AIDS2020: Virtual In my June column, I explained my disappointment at not being able to attend a real, live, in-person conference. Now that the conference has come and gone, allow me to elaborate more fully.

First, I should state that many of the session presentations were quite good—informative, coherently organized and presented, and well worth attending. For instance, representatives from the AIDS Healthcare Foundation and the global AIDS fund PEPFAR presented an excellent session called “AIDS—The Forgotten Pandemic,” detailing how funding for AIDS research and treatment has dwindled, particularly with the COVID-related cancellations of many fundraisers. Representatives of the NIH presented a cogent summary of the government’s EHE (End the HIV Epidemic) plan and challenges to achieve its goals. I attended valuable sessions on research into the efficacy of PrEP for transgender women, women’s resilience in the African HIV community, the necessity of spreading the U=U message, mental health issues and HIV, an excellent Housing Works (NYC) session on housing as healthcare for HIV patients, and a very moving session by the San Francisco AIDS Foundation explaining the many services they offer the HIV community. These sessions actually lived up to the conference’s goal of disseminating information and strategies for dealing with this forty-year-old pandemic.

Other sessions fell short of that goal. I found one session in particular—the Tuesday session on HIV and aging—to be particularly empty and aggravating. The session presented a laundry list of issues that affect long-term HIV/AIDS survivors: isolation and loneliness, depression, physical ailments like osteoporosis and frailty, discriminatory ageist health policies, and the expense of long-term care, but there was nothing new in their presentation, nothing that we long-term survivors didn’t know already, nothing I haven’t written about extensively. As much as the lack of any new information irritated me, worse was the lack of remedies, the lack of suggestions for dealing with those unique-to-LTS issues. At session’s end, I wondered why I had bothered.

To give due credit, however, Wednesday’s session—“Older and Wiser: Ageing with HIV”—made up for the Tuesday session’s faults. Ms. Melanie Rice, of OWEL (Older Women Embracing Life), a twenty-year survivor, gave an engrossing talk about her experiences of the comorbidities associated with HIV and aging and talked about the specific kind of interventions and programs that have helped her thrive. The session presented new findings—for instance, up to age forty or so, HIV-positive people exhibit better cognitive and physical ability than their HIV-negative cohorts; it is at age 50-to-54 that cognitive and physical abilities begin to diminish, and the diminution progresses much faster than in their HIV-negative cohorts. Also, the session offered a detailed six-point plan for engaging and treating long-term survivors. This session was, for me, one of the most valuable of the conference.

As for the rest of the conference, there were numerous problems. Many of those problems were probably inherent in creating the very first online event for tens of thousands of people. But still….

Empty Auditorium with Red Seats and Downlights

The interface of the website that hosted the conference was extremely difficult to navigate, and not just for me. Everyone I know who attended the conference has voiced difficulty finding the sessions they wanted to attend and the cultural offerings they wanted to access in the Global Village. Even my most tech-savvy friends (including one who writes and maintains programs that run nuclear power plants in Europe) found the interface frustrating, and some simply gave up trying after the second day.

Another friend, Vince Crisostomo, the program director of the Elizabeth Taylor 50+ Network of the San Francisco AIDS Foundation [A&U, September 2016], remarked on the lack of “humanity” at the conference. “It all felt very sterile,” he said, “like I was there but I wasn’t really there.” I concur. There was no interaction with other attendees, no real chance to ask questions of the presenters—a conference sans conferring. And believe me, when you’ve been on the front lines of this pandemic since its beginnings, a knowing, comforting hug from a fellow activist can be worth three plenary sessions.

Finally, it seems that we long-term survivors were once again excluded from the planning of the conference and, except for two one-hour sessions, were absent from the presentations. On a personal level, this hurts like hell. We who bore the brunt of this pandemic, who set the standard for community care, who faced down the trauma of burying our entire circle of friends, who served as unpaid guinea pigs for pharmaceutical companies that have made billions in profits off our bodies, who now face the unforeseen ravages of aging with HIV—we long-term HIV/AIDS survivors have unique experiences and knowledge of this pandemic and specific needs as we age. Excluding us from planning and policies is unconscionable.

Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-year resident of San Francisco, where he lives with his husband Rick. Follow him on Twitter @HankTroutWriter.