The basis of this blog is How to Survive a Plague. The story and all direct quotes are from this documentary.
“We’re in a PLAGUE”, shouts Larry Kramer.
A plague to an outsider looks differently to an insider, particularly one who battles symptoms every day. The plague Kramer shouts of is HIV/AIDS and its decimation of the homosexual community. Until I watched this documentary, I had not considered AIDS a plague because its label was an epidemic or pandemic. My perspective on the topic was limited by my understanding of another’s plight. My first recollection of learning about HIV/AIDS happened in the early 1990s when Ryan White, a hemophiliac, died and Magic Johnson, a heterosexual basketball player, made his announcement. I still remember how as a middle-schooler, I rationalized the knowledge someone a few years older than myself died while also anticipating the death of one of my favorite basketball players. At the time, I had no idea the millions who succumbed to AIDS would die after a lack of treatment for the disease; nor did I know of the group of radical activists shaking up the government and scientific community with demands for intervention. The individuals of ACT UP, through the coalescence of anger and non-violent direct action, took the on the burden of the dying community. How to Survive a Plague chronicles the 10-year fight for antiretrovirual medications (ARV) needed to both save the lives of those living with the disease and help end the AIDS crisis in the US.
Greenwich Village in New York City was the epicenter of HIV/AIDS in the early 1980s. During its initial outbreak, the virus was widely considered a ‘homosexual’ disease. Hospitals offered no treatments and turned the dying away, placing blame and responsibility for the epidemic squarely on the victims’ shoulders. AIDS Coalition To Unleash Power (ACT UP) began “fighting for their lives, patients and their advocates took matters into their own hands.” The activists, labelled fascists rather than concerned citizens, began locally – at NY City Hall in 1987, six years into the pandemic.
Peter Staley, a bond trader on Wall Street at the time, insisted, “I’m going to die from this. This isn’t going to be cured” because without government trials or treatments at that point in time, all hope seemed lost. Hope arrived in a scientist named Iris Long, who offered her time to explain and teach members of ACT UP the ins and outs of the scientific community, arming them with medication and funding information. Survival became dependent upon knowledge of what needed to go into the body; therefore, forming the Treatment and Data Committee (T&D). The goal of T&D remained reading medical journal articles as a means of raising awareness while arming the members with terms and ideas for advocacy. The first medical treatment offered was AZT.
AZT, for many infected including Staley, proved more harmful than helpful. First, it cost $1000 per year. Second, it was not widely available. Third, side effects were unbearable in some cases. Lastly, it did not prevent any opportunistic infections from attacking an already weakened immune system. Robert Rafsky questioned, “What does a decent society do with people who hurt themselves because they are human? A decent society does not put people out to let them die because they have done a human thing.” By 1988, over 800,000 people worldwide died of AIDS-related complications. For members of ACT UP, there was a direct correlation between the loss of American lives to AIDS and the government’s failure to make medications accessibly affordable and safe. Overseas markets had accessible medications, but Americans bought medication on the black market—the “buyers’ club”, a desperate means of saving their lives while protesting government agencies. The buyers’ club stored and sold medications not approved by the US FDA, and provided information about HIV/AIDS related infections, including opportunistic infections.
The US FDA tested and marketed ARVs at a significantly slower rate than Europe—7 to 10 years versus 9 months respectively. While the FDA sat on their power to make, test, and market medications, deceased patients gathered into garbage bags and refused by funeral parlors; disregarded and denied dignity, even in death. In 1989, hope arrived again through a partnership with Bristol Myers and NIH as activists used platforms to bridge the gap between science and themselves by reaffirming the same goal: saving lives. NIH increased research priorities and allowed activists to participate in panels regarding trials and treatments. By 1992, the death toll worldwide was more 3,300,000 and a small sample of ARVs was ready to trial in the US.
The goal of ARVs is to suppress and halt the progression of the virus. In the 1992 trial, researchers found that over the course of a week, suppression of the virus occurred but did not remain in most patients. Fortunately, in one participant dubbed “Patient 143”, viral load suppression stabilized over time. Despite this small victory, 1993-95 became the most difficult for the activists. Internal splintering of ACT UP created a division of priorities which resulted in the founding of the Treatment Action Group (TAG). George H.W. Bush argued a change in lifestyle and behavior could stop the threat/spread of AIDS, yet he failed to conclude that it is irrational to believe that others should change their behavior, specifically LGBTQ community, without him changing his response to their requests, demands, and deaths. Additionally, Europe confirmed the ineffectiveness of the ARVs that were accessible at the time. This setback meant a reframing, restructuring, and reanalysis of the AIDS research scientific process.
TAG activists, together with the scientific community, focused on the possibility of a triple drug combination rather than a single drug solution. In 1995-96, the Lazarus effect began to take place in patients after 30 days on the medications. The antiretroviral therapy (ART) combinations arrived too late for millions including Ryan White; however, they sustain and give life to millions of others including Magic Johnson. The decision of ACT UP activists spawned justice for humanity, not just the LGBTQ community. Staley summarizes, “…just so many good people [died]… like any war, you wonder why you came home.”
This Wednesday, October 4 at Birmingham Museum of Art, 6pm, ACT UP activist Peter Staley will participate in panel discussion “30 Years of Acting Up”. The panel is a part of the One in Our Blood exhibition taking place around the city, including AEIVA and Birmingham Civil Rights Institute.