THE BLOG
02/19/2014 07:00 pm ET Updated Feb 02, 2016

The War to Defeat AIDS Must Continue

Dirck Halstead/Time Life Pictures/Getty Images

"We're living through war, but where they're living it's peace time, and we're all in the same country."

This moving quotation from Larry Kramer's play The Normal Heart came to mind as I watched the film Dallas Buyers Club, portraying the early years of the HIV/AIDS crisis, a time when we faced vicious forms of bigotry and violence from without and an insidious virus from within, a time when government inaction and mindless regulation kept promising drug therapies from people who desperately needed them. And amidst this crisis, officials and others in this country and throughout the world perpetuated a process of collective denial by refusing to acknowledge the mere existence of this war in their attempts to silence people with HIV and their allies.

As I watched Matthew McConaughey's brilliant portrayal of real-life champion Ron Woodroof, many images escaped from my stored memory into consciousness: the seven long years until President Ronald Reagan, under whose presidency the AIDS pandemic first came to light, finally publicly acknowledged the existence of the crisis; the vicious characterization by Pat Buchanan, Reagan's Chief of "Communications," who spoke for many by calling AIDS nature's "awful retribution" that did not deserve a thorough and compassionate response (Los Angeles Times, Nov. 28, 1986), and later said, "With 80,000 dead of AIDS, our promiscuous homosexuals appear literally hell-bent on Satanism and suicide"; the ceaseless bigotry and discriminatory actions against people with HIV, including Ryan White, a young HIV-positive boy with hemophilia who posed virtually no risk to his classmates but whose middle-school administrators expelled him from school nonetheless; and, amidst all of this, the AIDS Project Memorial Quilt expanding exponentially day by day.

The film brought back visions of the day a close friend of mine, a young man of 23, disclosed to me that he'd tested HIV-positive and that early signs of disease had already begun to appear. I was extremely upset. Soon after he told me, I needed to clear my head, and I took a walk around my neighborhood in Cambridge, Mass. As I traveled around Harvard Square with the shoppers dashing in and out of the stores and the students carrying books through Harvard Yard, I felt as though I were venturing through an absurdist dream where out-of-sync parallel realities collided. (Yes, indeed, Larry Kramer, you nailed it!)

Since in those early years, HIV/AIDS affected most visibly what some called the "4H Club" -- homosexuals, Haitians, (intravenous) heroin users, and hemophiliacs, all but the latter considered "disposables" at that time -- governmental and many social institutions refused to take large-scale action. One can reasonably argue that if the majority of people with HIV/AIDS initially had been middle-class, white, suburban heterosexual males rather than gay and bisexual males, trans* people, people of color, working-class people, sex workers, and drug users, we would have immediately seen massive mobilization to defeat the virus.

Watching Dallas Buyers Club, I felt once again the infinite pain of losing so many of my beautiful and gentle friends. During those awful years, my pain eventually rose to anger, turning to rage, a rage finally given expression by a grassroots peoples' empowerment movement.

The direct-action group ACT UP (AIDS Coalition to Unleash Power) formed in New York City in 1986, largely by young activists. A network of local chapters quickly grew in over 120 cities throughout the world. I contributed my efforts to the Boston chapter. Though independently developed and run, the network connected efforts under the theme "Silence = Death" beneath an inverted pink triangle (turning upside down the insignia the Nazis forced men accused of homosexuality to wear in German concentration camps). We reclaimed the pink triangle, signifying the ultimate stigmata of oppression, and turned it into a symbol of empowerment to lift people out of lethargy and denial, and as a call to action to counter the crisis.

We in ACT UP conducted highly visible demonstrations, often involving acts of nonviolent civil disobedience in which we occasionally placed ourselves at risk for arrest and even injury. ACT UP New York, for example, staged a "sit-in" on Wall Street in 1987 during rush hour to protest price gouging by pharmaceutical companies, particularly Burroughs-Wellcome for the high cost of AZT (an antiviral drug). Other actions included a national protest in 1988, which effectively closed down the Food and Drug Administration's offices in Bethesda, Md.; a 1990 action in which over 1,000 people stormed the National Institutes of Health (NIH), also in Bethesda, Md., demanding large-scale improvements, including extended access to government-sponsored HIV clinical trials; a 1991 disruption of CBS and PBS evening news broadcasts to protest coverage of the Persian Gulf War and negligence in covering the AIDS pandemic, followed closely by a "Day of Desperation" demonstration at Grand Central Station; and visible actions at most of the annual International Conferences on AIDS, including, most notably, the VI Conference held in San Francisco in 1990.

We not only challenged traditional means of scientific knowledge dissemination but, more importantly, questioned the very mechanisms by which scientists conducted research, and, therefore, we helped redefine the very meanings of "science." AIDS activists -- including members of direct-action groups like ACT UP, people with AIDS, AIDS educators, journalists and writers, workers in AIDS service organizations, and others -- won important victories on a number of fronts, including helping people become active participants in their own medical treatments, having greater input into drug trial protocols, expanding access to drug trials, and expediting approval for drug therapies. In addition, Community Advisory Boards now hold pharmaceutical companies more accountable for the prices they charge.

I am so very grateful to my comrades in ACT UP for the endless lessons they taught me during our times together. They showed me by example that anger, no matter how righteous, often turns into mistakes and deep regrets when acted out unrestrained. (Oh how I learned that one!) On the other hand, they proved that righteous anger coupled with reason and a network of like-minded individuals giving expression to that anger sets the stage for unbounded possibilities.

I have heard some people refer to our current era as one in which HIV/AIDS and the discrimination surrounding it no longer pose major physical and social barriers. Unfortunately, nothing can be further from the truth even though much has improved since those terrible early years. Infection rates throughout the world still continue to rise, millions still can't afford the constellation of drug therapies needed to keep them alive, and ignorance and prejudice remain as major impediments.

Joining together with the remarkable, dedicated, steadfast friends of ACT UP made real for me Margaret Mead's insightful and stirring statement: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has."