|Raymond A. Smith, PhD|
After years of seemingly being sidelined, AIDS activism has lately been back in the news, and activists themselves have been back in the streets, especially in New York. The 1980s and early 2000s brought three separate, intense waves of AIDS activism that forced the epidemic into mainstream consciousness and spurred long-overdue action on treatment and prevention. Can there be a fourth—and if so, what might the experience of the first three waves suggest about its direction and impact?
The most high-profile manifestation of the recent activist resurgence has been the release of the Oscar-nominated How to Survive a Plague, alongside other 2012-2013 documentaries about AIDS activism: United in Anger, also about ACT UP; the Emmy-nominated We Were Here, about the early ’80s in San Francisco; and Fire in the Blood, about global treatment activism. Earlier this year, the New York Historical Society sponsored an exhibition on the first five years of the epidemic, and the New York Public Library is featuring the exhibition Why We Fight: Remembering AIDS Activism at its main branch until April 4. This week brings the Hollywood film The Dallas Buyers Club about the desperate early search for alternative treatments.
Many of the old stalwarts of ACT UP reunited last June, dubbing themselves "REACT UP," and meetings of ACT UP/New York reflect a new vitality. Activists have been organizing a new wave of protests, such as one on August 15 targeting the New York City Health Department over the availability of post- and pre-exposure prophylaxis (PEP and PrEP), and an earlier protest outside Mt. Sinai Hospital over the failure to provide it appropriately. The global AIDS activist group Health GAP helped organize the “Robin Hood Tax” march on September 17 to demand taxation of Wall Street to fund HIV-related and other progressive causes.
This eruption of activity suggests that we may be at another “critical moment,” as has occurred at three critical earlier junctures of the epidemic. In 1982, the first wave of the response to AIDS was begun to provide supportive services and palliative care to ever-growing numbers of the sick and dying. The world’s first and longest-lasting AIDS service organization, Gay Men’s Health Crisis (GMHC) was launched in 1982. The following year, a newly formed People With AIDS Coalition (PWAC) enunciated The Denver Principles to promote self-empowerment and confront AIDSphobia, homophobia, and the dehumanization of people living with HIV.
The second, and best-known, activist wave began in 1987, taking a far more public and confrontational approach. Its centerpiece was the creation and rapid proliferation of chapters of ACT UP. But that year also brought the AIDS Memorial Quilt to national attention, saw a major march on Washington focused on AIDS, and marked the publication of the landmark book And the Band Played On, the first to reach mainstream public awareness.
As documented so well in How to Survive a Plague, the efforts of ACT UP and of the Treatment Action Group (TAG) were instrumental in the breakthroughs that led to the development of antiretroviral (ARV) therapy in the mid-’90s. That epochal event led, by decade’s end, to the start of a third great wave of activism, this time focused on partnerships between activists in the developed and developing worlds to ensure the availability of ARVs in the world’s poorer nations. ACT UP/Philadelphia, Health GAP, the Treatment Action Campaign (TAC), and many other partners in South Africa, Brazil, India, and elsewhere successfully challenged global trade agreements that allowed pharmaceutical patents to block broad access to ARVs and also pressed for the establishment of funds for roll-out of treatment access programs.
Each of these waves was triggered by a combination of both threat and opportunity. The major new opportunity that has arisen recently has been encapsulated in the term "treatment as prevention.“ Powerful new evidence has emerged that ARVs not only can preserve the lives and the health of people with HIV but, by lowering their viral load, can significantly reduce the odds of new transmissions. Similarly, when taken by HIV-negative people, ARVs can also prevent new infections from taking root. Other advances in vaccine research, in the eradication of the virus in infants, and the in the use of ARVs in vaginal and rectal microbicides collectively show tremendous promise. Talk of ”the end of AIDS" has begun to feel, for the first time, like an attainable reality—but only if HIV/AIDS once again receives enough focus and energy.
Yet if opportunities are expanding, so too are threats. Global commitment is wavering in the funding of ARV programs that have saved so many lives and prevented countless new infections. Revisions to international protocols threaten to reinstate strict limitations on the ability to override patent to make generic ARVs available. HIV transmission rate in the U.S. have not declined, and new infections among gay men—most notably young men of color—are on the rise. Harsh law enforcement measures are being used to criminalize sex by people with HIV regardless of evidence of transmission risk.
Three times before, AIDS activists have mobilized at critical moments to hasten the path to new opportunities and bar the door to the most serious threats. If there is to be a fourth great wave, this may be the moment.