Every year in March, people living with HIV/AIDS and their allies gather in Washington, D.C. for AIDSWatch, a few days of shared skills-building, hot-topic sessions, and—crucially—in-person visits to their representatives’ offices on Capitol Hill, harnessing their personal stories to demands for continued or increased funding for key HIV service and prevention programs, such as the Ryan White CARE Act, Housing Opportunities for Persons With AIDS (HOPWA), and projects of the Centers for Disease Control and Prevention (CDC).
It’s one of the U.S. HIV/AIDS community’s most crucial annual gatherings, and also a chance for people who normally communicate and collaborate via emails, calls, and social media to come together in person for food and fun between the work sessions. Many a margarita-fueled karaoke session often goes down around D.C. in the evenings.
But this year, as the coronavirus pandemic intensified in late February and early March, with business and life as usual swiftly shutting down, it became clear to the folks at AIDS United, the group that has long organized and hosted AIDSWatch, that the 27th annual AIDSWatch could not happen in person.
So, working with partners, including the U.S. People Living with HIV Caucus and Treatment Access Expansion Project, and with some technical assistance from TheBody’s senior editor Kenyon Farrow, AIDS United quickly retrofitted the conference to a virtual format for March 30. According to Jesse Milan, Jr., CEO of AIDS United, 650 people tuned in for the introductory session alone.
At the end of the day, according to a post-event email from AIDS United, some 2,500 people had tuned in for at least some of the virtual sessions—making the event, in its own way, the best-attended AIDSWatch in the event’s history.
“I was beyond thrilled with how it turned out, given that just a few weeks ago, we’d made the decision to go virtual,” says Carl Baloney, Jr., AIDS United’s vice president of policy and advocacy. “It was obviously the right decision, but I still had a lot of anxiety about people losing out on this annual opportunity to convene and fellowship with colleagues from across the country.”
Obviously, the fellowship aspect of AIDSWatch was somewhat lost, but the sessions—all watchable, and tackling such topics as sex-worker representation, increasing access to treatment in rural areas, southern Black communities and Ending the Epidemic, stigma and undetectable equals untransmittable (U=U), transgender networking and advocacy, Latinx communities and Black women—still held many powerful moments.
In the session on stigma and U=U, for example, Greg Millett, M.P.H., of amfAR, juxtaposed HIV/AIDS stigma and discrimination toward gay men and other groups in the 1980s and 1990s against similar bias toward Asians in our current COVID-19 moment, including Trump repeatedly calling the coronavirus “the Chinese virus.” He said, “I have many HIV-positive friends telling me they have PTSD right now around so many people testing positive for COVID-19,” because it reminds them of the worst years of the AIDS epidemic.
In another moving moment, Paul Kawata, the longtime head of NMAC (formerly known as the National Minority AIDS Council), asked for a moment of silence upon just hearing of the death of beloved HIV activist Barbara Joseph. “I don’t know if she passed to the COVID-19 virus,” he said, “but I wanted to take a moment to hold up her name. ... To all the people with HIV who are on this call, we need you to be very careful. These are very scary times.”
It should be noted, however, that while of course people living with HIV/AIDS should take extreme precautions in this time, there is no evidence yet that people with well-managed HIV and strong CD4 counts are at higher risk of getting COVID-19, or more severe cases of it. This point was actually brought up by introductory plenary speaker Jonathan Mermin, M.D., M.P.H., director of the CDC’s Center for HIV/AIDS, Viral Hepatitis, STD, and Tuberculosis Prevention.
Another fierce fighter who had just died of COVID-19, Lorena Borjas, the transgender Latinx activist pioneer from Queens, was remembered and honored by Sofia Cass, who heads the Positively Trans program at the Transgender Law Center. “I speak in memory of your passion and love,” Cass said to Borjas during a session. “May you rest in power with our ancestors.”
Then she went on to say: “At this moment, the stakes are really high for people living with HIV/AIDS in the U.S., particularly for the most marginalized—people of color, Black people, people of trans experience, sex workers, immigrants, people in prisons and detention cages, people with disabilities, people with substance use, Southerners and those living in rural areas, and people experiencing homelessness, mental health challenges, and isolation. ... This novel coronavirus has exposed and amplified systemic inequalities that we already knew were there.”
Robert Greenwald, head of Treatment Access Expansion Project, spoke for many when he said, in the opening plenary, “It’s hard to believe just how much our lives have changed over the past eight weeks. ... This [Trump] administration continues to deny the seriousness of this pandemic, and this threatens our lives more than ever. This must stop.”
Mermin was not the only government figure making an appearance at the virtual conference. Harold J. Phillips, who coordinates the Ending the Epidemic initiative across various government agencies, talked about how the government, with the cooperation of major pharmacy chains, was rolling out its “Ready, Set, PrEP” program to get pre-exposure prophylaxis (PrEP) access to those who lack access to it. He also said that an early version of America’s HIV Epidemic Analysis Dashboard (AHEAD), which will track data from Ending the Epidemic localities nationwide, should launch this spring—with a more fleshed-out, interactive version to appear next year.
But what of arguably the most impactful part of AIDSWatch—the in-person Hill visits? Baloney says that this year’s major policy asks—continued or increased funding for the HIV programs mentioned above, including for HIV/AIDS research, and all within a framework of health care access and human rights—were converted into action alerts that participants could get to their representatives through Twitter. Additionally, he says, on March 31, AIDSWatch activists, headed by AIDS agency leaders, conducted 28 separate phone meetings with their representatives or their staffers.
Still, Baloney admits that moving forward the HIV agenda—or any agenda, for that matter—remains difficult in this moment when all hands are on deck at every level to fight the raging COVID-19 crisis, which claims more lives every day. “We couldn’t be tone deaf about that,” he says.
But he also says that the HIV stakes are too high to freeze efforts completely, even amid another, more acute health crisis. “Our community has dealt once before with a sudden epidemic that nobody understood—and frankly, we’re being retraumatized by COVID-19. So we have to march on with our advocacy.”
He says that the government had already extended deadlines related to Ending the Epidemic goals in various localities. “But we intend to hold the [Trump] administration and Congress accountable for continuing to push ETE goals forward,” he says. “Our current crisis shows that if you don’t invest in health care infrastructure, look what can happen. We’ve seen an amazing downturn in new HIV infections in recent years—but we can’t take our eyes off the ball.”
