Activism to Defeat HIV/AIDS Must Continue

This moving quote from Larry Kramer’s play, The Normal Heart, came to mind as I watched again the film “The 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.

Watching Matthew McConaughey’s brilliant portrayal of real-life champion Ron Woodroof, many images escaped from my stored memory into consciousness: the long seven years until 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, and later:

“With 80,000 dead of AIDS, our promiscuous homosexuals appear literally hell-bent on Satanism and suicide,” said Buchanan, and the continuation of 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 his middle school administrators expelled him from school nonetheless; all of this while the AIDS Project patchwork quilt expanded 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 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, Massachusetts.

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!)

And why, you may ask, was the governmental response to HIV/AIDS so meager? According to Randy Shilts in his book And the Band Played On,

“No one cared because it was homosexuals who were dying. Nobody came out and said it was all right for gays to drop dead; it was just that homosexuals didn’t seem to warrant the kind of urgent concern another set of victims would engender….Scientists didn’t care because there was little glory, fame, and funding to be had in this field….Nobody at the National Cancer Institute seemed to be in much of a hurry. The new syndrome clearly was a very low priority, even as it was becoming clear to more and more people that it threatened calamity.”

In the face of this threat, we didn’t just sit back. We mobilized. The women’s health-care empowerment movement predates AIDS, as recorded in the ground-breaking work, Our Bodies, Our Selves.

By the time the effects of HIV were first felt, a grassroots network of medical, social, political, and informational organizations had already been put in place. Some of us, who under other circumstances would probably not have engaged in political organizing, were spurred into activism by the crisis.

Queer and heterosexual people were in the forefront of a coordinated effort to provide care and support for people with HIV/AIDS. Existing LGBTQ community service centers expanded their services, while new centers were established dedicated to serving the needs of people HIV/AIDS: people of all races, socioeconomic classes, sexual and gender identities, and their loved ones.

These centers, sometimes referred to as AIDS Service Organizations (ASOs), provide counseling, education, medical consultation and advocacy, legal and financial assistance, and guidance through the dizzying maze of local and national agencies. Volunteer “buddies” assist people with HIV/AIDS. And trained volunteers staff telephone hotlines to answer questions and refer people to local and national agencies.

In addition, we must not overlook an irony: LGBTQ people developed safer sex strategies and educational campaigns and we remain some of the leaders in prevention efforts. Just think about it: LGBTQ people teach heterosexual people how to decrease their risks of infection during sexual activity.

As important as all of these initial organizing efforts were, some of us realized that we could do so much more to directly confront the crisis. We charged the government with being unconcerned with the epidemic because the majority of HIV-related cases existed in what we called “The 4-H Club”: Homosexuals, Haitians, Heroin users, and people with Hemophilia – all but the latter many people considered as “disposables” at that time, and governmental and many social institutions refused to take wide-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.

We also faulted the very system on which U.S.-American medicine was based, and we declared that clinical drug trials and drug distribution procedures as then constructed were inhumane.

Subsequently, by 1986, militant direct-action groups of largely young people known as ACT UP (AIDS Coalition to Unleash Power) organized. 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 are a nonpartisan group of diverse individuals united in anger and committed to direct action to end the AIDS crisis,” and so begins another meeting of ACT UP chapters throughout the U.S., Canada, Europe, and Australia.

Updating 1960s-style movement strategies, ACT UP groups continue to challenge what we still often regard as an intransigent government, arrogant medical establishment, greedy pharmaceutical and insurance industries, and a frightened and apathetic populous. We also are fighting against the internalized oppression within our own communities.

A new era dawned March 24, 1987 when a handful of furious and committed AIDS activists staged a sit-in at rush hour on Wall Street in protest of what they saw as foot-dragging by the U.S. Food and Drug Administration in withholding approval of promising HIV drugs, and price gauging by pharmaceutical companies: in particular Burroughs-Wellcome, which charged up to $13,000 per year for its antiviral, AZT: a drug, by the way, developed at public expense, and the Illinois-based Lyphomed Corporation for its pricing of pentamidine, a prophylaxis for pneumocystis carinii pneumonia.

The following October, over half a million people descended on Washington, DC as part of the National March for Lesbian and Gay Rights. Out of the March grew a unique coalition concerned with a number of progressive issues, but focused on AIDS. A new umbrella organization called ACT NOW (AIDS Coalition To Network, Organize, and Win) oversaw communications and planed actions on a national scale.

Based on a philosophy of direct, non-violent action, ACT UP members conducted highly visible demonstrations often involving acts of civil disobedience in which participants often place themselves at risk for arrest. Dramatic and creative visuals are often used to garner media and public attention.

Other actions included a national protest in 1988, which effectively closed down the Food and Drug Administration offices in Bethesda, Maryland; a 1990 action in which over 1000 people stormed the National Institutes of Health (NIH), also in Bethesda, Maryland, demanding wide-scale improvements including extended access to government-sponsored HIV clinical trials.

Also, in 1991, ACT UP staged a 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.

ACT UP’s agenda included pushing for greater access to experimental drugs and a streamlining of the drug trials process; decentralized drug trial processes in which subjects and their physicians determine cooperatively the most appropriate trial drug treatment; ensuring that third-party payers cover the costs of drugs once medical consensus has been reached rather than waiting for the FDA to conclude its paper chase; an end to inhumane placebo trials; expanded informed consent to guarantee all drug trial subjects the right to results, even preliminary, from trials in which their participation has made possible;

We also argued that People with AIDS (PWA) must be represented on the Institutional Review Boards of every HIV/AIDS drug trial; allowing concurrent prophylactic treatment to anyone participating in drug trials; fair pricing of drugs by the pharmaceutical companies, and access to their books to justify the prices they charge; treatment for drug addiction on demand; and of enormous concern, universal access to health care.

In addition, we pushed for national anti-discrimination laws in terms of HIV status and sexual and gender identity; protecting against mandatory HIV testing and quarantining; insurance and social security benefit protections; job and housing protections; freedom of immigration; and treatment for all incarcerated persons.

Our strategies were often controversial and, indeed, ACT UP and its tactics were often criticized, even from within the ranks of the larger LGBTQ community. Those of us in ACT UP, however, list several victories to our credit, though history will have to be the final judge of our ultimate effectiveness.

When looking back over the history of HIV, one thing seems certain. LGBTQ people have been in the forefront of organizing since physicians first recognized the syndrome. We continue working on the frontlines and we will are there giving our knowledge, our compassion, our funds, and our muscle until HIV no longer poses a significant threat to the health of anyone on this planet.

Also, I can tell you with great certainty, in areas of health outside HIV, our leadership, creativity, and commitment will help this country and the planet survive into the next century.

Watching “The 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.

We not only challenged traditional means of scientific knowledge dissemination, but more importantly, we 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 HIV/AIDS, AIDS educators, journalists and writers, workers in AIDS service organizations, and others — won important victories on many fronts, including assisting 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, when unrestrained often turns into mistakes and deep regrets when acted out. (Oh, how I learned that one!)

On the other hand, they proved that 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.”

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This Post is republished on Medium.

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