U.S. AIDS Activism: The Four Waves of U.S. AIDS Activism



Stressing the message at AIDS 2014 in Melbourne, Australia

In the very earliest years of the epidemic, the first "AIDS activism" was undertaken by people with AIDS themselves, who created small networks in cities across the country to advocate for confidentiality, protections and personal autonomy. They fought stigma and empowered each other to make sure they were meaningfully involved in all aspects of policy-making and service delivery. 

The Denver Principles, written in June of 1983 and modeled after the women's health movement, was a manifesto detailing rights and responsibilities for people with AIDS (this was before HIV was discovered) as well as for those who loved or cared for us.

The existing healthcare system wasn't meeting our needs—and had little interest in serving gay men, one of the groups widely understood to have HIV—and the government was content to let us die. So in addition to the networks like Body Positive, People With AIDS Coalition and others that were rapidly growing in size, we created AIDS service organizations, buyer's clubs, launched newsletters, founded advocacy groups and much, much more. It was a "do it yourself" model, because we had discovered that the best expertise and support we could get came from each other. The ASOs we created were based on a peer-to-peer model. We had created them, so those of us who had the disease dominated their boards of directors and staff. That's why they such enjoyed profound trust and respect from the communities they served.

Love defined us

Sometimes when us old-timers talk about those days, we can sound almost wistful. Not for the horrific loss and dying, of course, but for the beauty of the love that was expressed in such a monumental way. At that time only a small percentage of the country even knew anyone who was openly gay. AIDS introduced the LGBT community to America and it did by showing our very best qualities, the exceptional caring and love that defined us. People reorganized their lives to care for a sick neighbor, co-worker or friend. We tend to define those who became best known in the media as our heroes, but anyone who was there knows that the real heroes were the ones emptying bedpans or cooking, cleaning and providing comfort to the sick and dying. The world could learn a lot from what we did back then.

Initially, AIDS afflicted relatively small numbers, but by the late 80s, the deaths were coming so rapidly one barely had time to mourn for one friend before another died. The fear and anger mounted, especially among the gay White men in New York's Chelsea neighborhood, the Castro district in San Francisco and West Hollywood.

They were rightfully indignant over the government's neglect; most had never before experienced what it was like to be marginalized, ignored or abandoned, left to suffer and die. Many other communities who were by then experiencing tremendous loss from AIDS were also suffering. But communities of color, many women, injection drug users and those who were poor lived in a different America, one where AIDS had to find its place amongst a hierarchy of burdens and oppressions. The government's neglect was hardly a new thing.

From rage into action

In 1987, the militant activist group ACT UP emerged from New York's gay community with spectacular demonstrations loudly, angrily and rightfully demanding attention to the growing crisis. The first antiretroviral, AZT, had been released and others were in development. Expediting the research and approval process quickly became the group's primary focus.

ACT UP's energy was driven by White gay men whose race and gender had, until the epidemic, shielded them from the other America so many know all too well. While the first wave of AIDS activism was internally focused—people with AIDS helping each other—this second wave was externally focused, determined to force the institutions of government, political and economic power to respond as they should have from the beginning. Their first target for a demonstration was the New York Stock Exchange, the ultimate bastion of power and privilege.

For many members of ACT UP, the group was collective therapy, channeled rage into action, exerted political muscles that evoked fear and produced results. The initial trickle of anti-retroviral treatments became a steady flow, culminating in the introduction of protease inhibitors—the "drug cocktail"—that changed the course of the epidemic forever, at least for those who were fortunate enough to have survived long enough, had access to the new treatment and responded to it. Some who had been deathly ill rose Lazarus like from their hospital beds.

It was a new era, to be sure, but as the realization sunk in that AIDS was becoming more like a chronic, manageable condition, AIDS activism entered a new stage, one where funding for the networks of people declined dramatically, many activists were dead, burnt out or now that they knew they would survive, could return to the lives and careers they were pursuing before they became sick. AIDS activism didn't go entirely dormant, but the voices of people with HIV were no longer at its center.

Meanwhile, the epidemic was increasingly moving into communities of color, impoverished rural areas and the young. The relief that came with effective treatment led to less attention to the human rights issues—stigma, empowerment, privacy, patient autonomy—that were, unknowingly to most of us, beginning to worsen rather than improve along with the improved treatments and growing focus on biomedical prevention, such as treatment as prevention, pre-exposure prophylaxis, or PrEP; and post-exposure prophylaxis, or PEP.

When we were dying, or the public perceived AIDS as a certain death sentence, we were objects of pity, if not always compassion. We were expected to die, possibly horrible and painful deaths. Many of us did. Coverage of people with AIDS in the media was, while sometimes uninformed, generally sympathetic and frequently highlighted the indomitable spirit of someone struggling to live their life while facing such a terrible threat to their health.

Health or criminal justice issue?

But after the new therapies were introduced, we were no longer assumed to be dying. Instead, we started to be viewed—especially by the public health and criminal justice systems—through the prism of our potential survival. Since we were living longer, we would be around longer to potentially infect others. We started to be seen as viral vectors, potential infectors, and as inherent threat to society. More states passed HIV criminalization statutes and they were used with increasing frequency. Initially, heterosexual African American men were the focus of many, if not most, prosecutions; over time that has expanded so now women, gay white men and everyone else with HIV is at risk of prosecution. The media coverage that was once sympathetic went another direction, covering criminalization cases in a sensationalized way, labeling people accused of non-disclosure as "AIDS monsters" or "AIDS predators."

Fear of casual contagion declined steadily as more of the public understood better the real routes, risks and consequences of HIV infection. But HIV stigma, as experienced by those of us with HIV, defined as marginalization, "othering" and self-stigmatization, began to increase. Why wouldn't it? In addition to the change in media coverage, the financial support for our networks, where we found community and empowerment, went away. The AIDS service organizations we founded on a peer-to-peer model were incrementally moving towards the more dominant "benefactor/victim" paradigm of service delivery and what was once just a public health issue now, with HIV criminalization, was becoming a criminal justice issue.

Where the epidemic was becoming rampant, with transgender women, those who are incarcerated, young MSM of color, women of color, migrant workers and others were the very same communities at the bottom of the list for political and policy leaders.

But the good news is that in the last few years, there are growing signs that we are entering a fourth wave of AIDS activism. Networks of people with HIV are on the rebound, with new and stronger national groups, like the Positive Women's Network and the Sero Project, while local and digital networks, based on geography, shared interests and even tenure of survival have begun to proliferate.

As exciting and effective as many of the biomedical HIV prevention strategies might be, it has become clear that we aren't going to treat our way out of the epidemic. Stigma remains the number one obstacle and it isn't going to be cured with a pill. We need to support networks of people with HIV, remove legal barriers—like criminalization statutes—and target comprehensive prevention initiatives at the communities most at risk.

As a community, we are more practiced at grief and suffered more pain than any human should ever have to endure. We have had to repeatedly pick ourselves up and crawl through a rubble of human destruction, greed and indifference to carry on and do the work that must get done. This moment is no different, but if our focus is on each other—people with HIV helping, supporting and empowering other people with HIV—we will not only move forward with hope and love, but we can change the world.

Sean Strub is executive director of the Sero Project.