HIV, the virus that causes AIDS, is a virus without an agenda — anyone can contract it, and we are all on what medical professionals call the “continuum of risk.” Unless you’re talking about abstinence or masturbation, almost every sexual act falls somewhere on the risk continuum; and belonging to some social, ethnic and economic groups puts people at higher risk for HIV. At the nexus of many contributing factors (economic disempowerment, homophobia, racism, stigma, inadequate school systems and criminalization) are young gay men of color, a group considered by many in the HIV community to be facing “AIDS 2.0” — a second epidemic.
As we enter the fourth decade in a world that includes HIV, and as our tools to fight HIV in those who are infected become more fine-tuned, many organizations and advocacy groups are turning their attention to what some are calling the “fourth wave” of HIV activism: widespread prevention advocacy.
Advocating for the 300 Million
Advocacy for those who are HIV positive means working within a defined community. Out of the 300 million people in the U.S., around 1.2 million are HIV positive, with the number of new cases steady at about 50,000 people per year for the past decade. However, when turning an eye toward prevention, it’s the other 298.8 million citizens whose health becomes priority. For those like Johnson and TAG, a good place to start with prevention advocacy is with young gay men of color. Johnson explained, “Among young gay men between 2008 and 2010, there was a 22 percent increase in the rate of new infections.” Citing the projection that half of young gay men will be HIV positive by the time they’re 50, he added, “If you’re a young black gay man, then it might be even worse than that.”
Attendees at this year’s Gay Pride March in New York City saw the AIDS Coalition to Unleash Power (ACT UP) declare an “HIV emergency” in the city. ACT UP cited projections based on statistics from the U.S. Centers for Disease Control and Prevention (CDC) estimating that more than half of young gay men and transgender women may be HIV positive by age 50 if trends persist. Members aboard a float shouted “1 in 2, could be you!” to onlookers. The Treatment Action Group (TAG) — which began years ago as a working group in ACT UP, and is one of the most recognizable names in advocacy for people living with HIV — has even turned its attention to prevention, realizing its essential role in ending HIV globally. Jeremiah Johnson is TAG’s inaugural HIV prevention research and policy coordinator, ushering in a new era of focus for the organization. Johnson, less than a quarter of a year into his new role, is aware of the challenges that lie ahead in advocating for those who are negative. “It’s going to be a very different beast, because there is a different set of community stakeholders in the U.S. that needs to be brought together to talk about this problem,” he said.
As prevention goes the route of primary care, it is fortuitous that the newest “tool in the prevention tool belt,” pre-exposure prophylaxis (PrEP), requires a primary care model in order to work. Unlike condoms or HIV testing, PrEP requires regular appointments with a primary care provider — something to which many more Americans are expected to have access through the Affordable Care Act. Discussing the implementation of PrEP, Johnson explained, “We need government. We need the providers. We need to have the community actually demanding it. We need to make sure that the drugs can actually be paid for.”
One activist who wished to remain anonymous was dismayed about the future of PrEP’s uptake, especially given the problem with the implementation of post-exposure prophylaxis (PEP). “We don’t have effective funding or systems in place to offer this prevention tool at the level we could. If we haven’t figured that out, are we going to be able to offer PrEP in a widespread manner? PEP has been around forever and we still haven’t done a good job putting that service in place around the country in an affordable, accessible way,” the activist commented.