To the Teacher
In the mid–1980s, America was thrown into a public health crisis by the sudden emergence of HIV/AIDS. The disease seemed to come from nowhere in the early 1980s and in the beginning predominantly impacted gay men. It kicked off hysteria and further stigmatized an LGBT (Lesbian, Gay, Bisexual, and Transgender) population that had been struggling for decades to fight homophobia. The government's failure to take swift action to educate the public and combat the virus almost certainly contributed to its spread.
It was in this context that, 30 years ago (in 1987), the AIDS Coalition to Unleash Power (ACT UP) was formed to employ direct action to raise public awareness for HIV/AIDS and force government action to combat the disease.
This lesson consists of two readings designed to teach students about the AIDS crisis and ACT UP on the year of its 30th anniversary. Where did the group come from? What were its aims? How did it go about achieving them? And what is its legacy? Questions for discussion follow each reading.
The AIDS Crisis and the Birth of ACT UP
In the mid–1980s, America was thrown into a public health crisis by the sudden emergence of HIV/AIDS. The disease seemed to come from nowhere in the early 1980s and in the beginning predominantly impacted gay men. It kicked off hysteria and further stigmatized an LGBT (Lesbian, Gay, Bisexual, and Transgender) population that had been struggling for decades to fight homophobia.
The U.S. government's failure to take swift action to educate the public and combat the virus almost certainly contributed to its spread. In particular, critics charge that the Reagan administration failed to take early action when the disease’s reach could have been limited and its devastating effects could have been minimized. Rather, as journalist Allen White wrote in a June 8, 2004, article for SFGate.com, Reagan’s response to the disease only contributed to the stigma surrounding it:
Following discovery of the first cases in 1981, it soon became clear a national health crisis was developing. But President Reagan's response was "halting and ineffective," according to his biographer Lou Cannon. Those infected initially with this mysterious disease – all [of whom were] gay men – found themselves targeted with an unprecedented level of mean–spirited hostility.
A significant source of Reagan's support came from the newly identified religious right and the Moral Majority, a political–action group founded by the Rev. Jerry Falwell. AIDS became the tool, and gay men the target, for the politics of fear, hate and discrimination. Falwell said "AIDS is the wrath of God upon homosexuals." Reagan's communications director Pat Buchanan argued that AIDS is "nature's revenge on gay men."
With each passing month, death and suffering increased at a frightening rate. Scientists, researchers and health care professionals at every level expressed the need for funding. The response of the Reagan administration was indifference.
By February 1, 1983, 1,025 AIDS cases were reported, and at least 394 had died in the United States. Reagan said nothing. On April 23, 1984, the Centers for Disease Control and Prevention announced 4,177 reported cases in America and 1,807 deaths. In San Francisco, the health department reported more than 500 cases. Again, Reagan said nothing....
Reagan would ultimately address the issue of AIDS while president. His remarks came May 31, 1987 (near the end of his second term), at the Third International Conference on AIDS in Washington. When he spoke, 36,058 Americans had been diagnosed with AIDS and 20,849 had died. The disease had spread to 113 countries, with more than 50,000 cases...
It was in this context that, 30 years ago, the AIDS Coalition to Unleash Power (ACT UP) was formed in New York City. The group drew its membership primarily from people directly affected by HIV/AIDS, as well as their friends and loved ones. ACT UP aimed to use nonviolent direct action to raise public awareness of HIV/AIDS and to force government action to combat the disease. ACT UP described the impetus for the organization’s creation:
One of the reasons ACT UP was founded was because health officials, government researchers, medical bureaucrats, doctors and pharmaceutical company executives were believed to be "AIDS experts" and held all the power over people living with AIDS. Here in the affected communities, our points–of–view were made invisible and our real–world knowledge about the changes that needed to be made to end the crisis, was ignored. Living with AIDS, as we all are in New York City, one of the epicenters of the AIDS pandemic in this country, we are the experts!
Further, because of the immensity of the task of ending the AIDS crisis, ACT UP felt there was a need to make every member a leader, rather than having a few members holding the power. That is why there is no president or Board of Directors in ACT UP.
It is no wonder then that ACT UP is run as openly and democratically as it is. ACT UP has no paid staff; everyone is a volunteer. The membership in attendance every week at Monday Night meetings, the floor, has the final say on all of the organization’s business. Because of this, the meetings can run very long and become heated and emotional. They can also be tedious and frustrating. It can be extremely confusing and overwhelming for new members and even old members.
Just remember that we run things this way because we care about what you have to say. While we ask members to wait until their third meeting before voting, you have as much right to speak and to be heard as anyone else in the room. We are all in this together.
ACT UP is perhaps best recognized for its members’ creative and attention–grabbing actions. In a March 8, 1990, article for Rolling Stone, journalist David Handelman described how, in one of the group’s early protests, ACT UP infiltrated the New York Stock Exchange to target the manufacturer of a key AIDS drug. Handelman described the scene:
It was September 14th, 1989; more Americans had already died of AIDS–related causes than the 58,000 that had died in Vietnam. And, sneaking into the New York Stock Exchange, wearing suits and fake trader ID badges, carrying chains, handcuffs and foghorns, Peter Staley and six colleagues from ACT UP — the AIDS Coalition to Unleash Power — were fighting a war too.
Today's skirmish was over the high price of AZT, the only federally approved antiviral AIDS drug. The sole manufacturer of the drug, Burroughs–Wellcome, had originally priced it at $10,000 for a year's dosage, and had lowered the price to $8000 only when threatened with a congressional inquiry. AZT was still the most expensive drug ever sold, meaning it depleted both the benefits of those with health insurance and the limited governmental reimbursement programs for those less fortunate. And in the two and a half years since AZT went on the market, Burroughs–Wellcome stock had risen forty percent.
Staley and members of ACT UP had met with Burroughs in January, trying to negotiate a price cut; in April they'd invaded the company's North Carolina offices, barricading themselves and doing some impromptu redecorating with drills and chainsaws (they paid for the damage immediately afterward). In August, study results revealed that AZT could be used as a preventative by people who had tested positive for the AIDS virus but as yet showed no symptoms. This vastly expanded the market for the drug, meaning Burroughs–Wellcome could lower the drug's price and still suffer no loss in profits. Representatives of ACT UP and fifteen other AIDS groups again met with Burroughs — this time at a safe distance from its offices — to no avail. ACT UP responded by calling for a nationwide boycott of Burroughs products, which include the cold remedies Actifed and Sudafed, and by sticking "AIDS Profiteer" labels on the company's products on store shelves. But Burroughs wasn't budging.
So Staley and his cohorts believed that this Mission: Impossible–style invasion was the right thing to do. After the fake badges got them past the security guards, Staley quickened his pace; the nine o'clock bell signaling the start of trading would ring in only a few minutes...
Seconds before nine o'clock, Staley and four other ACT UPpers locked a heavy chain to the balcony railing and handcuffed themselves to it. Unfurling a banner reading "Sell Wellcome," they then blared foghorns, completely drowning out the opening bell. The other two ACT UP members pulled out cameras and snapped away, and within hours the scene would be transmitted across the country...
And within weeks, Burroughs–Wellcome reduced the price of AZT twenty percent, to $6400 a year — claiming, of course, that it had been planning to do so all along. The battle had been won, but the war was far from over: The Centers for Disease Control had reported America's 100,000th case of full–blown AIDS in July and predicted another 100,000 by November 1990. The number of people already infected with HIV was estimated to be between 1 million and 1.5 million.
In subsequent years, ACT UP would continue to escalate its protests, and would help to change how the AIDS epidemic was addressed in America.
- How much of the material in this reading was new to you, and how much was already familiar? Do you have any questions about what you read?
- According to the reading, what was the U.S. government’s response to the AIDS crisis in the early 1980s?
- Why do you think the Reagan administration was slow to respond to the danger of HIV/AIDS?
- According to the reading, what were the goals of ACT UP when it was first formed?
- ACT UP adopted a decentralized, democratic organizational structure. What do you think might be the strengths and weaknesses of organizing a group in this say?
- ACT UP was known for designing especially creative protests. What do you think is the role of creativity and playfulness in making a serious political point?
ACT UP’s Accomplishments and Legacy
ACT UP was largely successful in its immediate aims of drawing attention to the AIDS epidemic, fighting the stigma associated with the virus, and expanding access to treatment.
In a May 2002 article for The New Yorker, staff writer Michael Specter argued the ACT UP spurred major changes in the ways in which AIDS drugs were tested and released. He wrote:
It is difficult to overstate the impact of ACT UP. The average approval time for some critical drugs fell from a decade to a year, and the character of placebo–controlled trials was altered for good. The National Institutes of Health (NIH) even recognized ACT UP's role in getting drugs to more people earlier in the process of testing; soon changes in the way AIDS drugs were approved were adopted for other diseases, ranging from breast cancer to Alzheimer's.
"Before AIDS and before ACT UP, all experimental medical decisions were made by physicians,'' [NIH program director] Anthony Fauci said one afternoon this winter... "ACT UP put medical treatment in the hands of the patients. And that is the way it ought to be.''
In a March 3, 2012, article for the Bay Area Reporter, journalist Liz Highleyman notes that, while ACT UP continues to advocate for those affected by HIV/AIDS, it does so in a very different landscape than when it started:
A quarter century later, many of ACT UP's aims have been realized – at least for people in industrialized countries with money or good insurance. Activist pressure, along with the efforts of dedicated researchers and a dose of good luck, produced combination antiretroviral therapy that dramatically reduced death from AIDS and allows HIV–positive people who receive timely treatment to live a near–normal lifespan.
But some of ACT UP's grander ambitions – including elimination of homophobia, racism, and sexism, and establishment of social and economic justice – proved harder to attain and remain goals for contemporary activists.
"ACT UP brought thousands of powerful voices together, worldwide, crying out for economic justice and treatments and cures for HIV disease," ACT UP/New York member George Carter told the Bay Area Reporter. "Desperation, suffering, and death drove us then and drive us still."...
Today ACT UP is widely acknowledged for bringing back militant street activism and for its skillful use of art and media. Sociologist Benjamin Shepard and others have cited ACT UP as an influence for the global justice movement – best known for the "Battle of Seattle" World Trade Organization protests in 1999 – and this influence continues with today's Occupy movement.
"In 1993 when I was 19 I moved to [New York] city and found ACT UP," recalled Amanda Ream, a union organizer who works with Pride at Work and Occupy Oakland. "I learned how to take personal risks in ACT UP, and that when you are willing to put your personal comfort level on the line, and do the thing that is the hardest but the most urgent and necessary, that's when you win."...
ACT UP's success can be attributed to the single–minded focus of desperate people trying to save their own lives and those of their friends and lovers, coupled with the experience and know–how of seasoned activists from the feminist and gay liberation movements.
"People felt they had the power to change things, and it gave people who were facing death something to do to fight for their lives," John Iversen, founder of ACT UP/East Bay, told the Bay Area Reporter.
As Eric Westervelt noted in an April 17, 2017, piece for National Public Radio’s All Things Considered, 30 years after they first started, many veteran ACT UP activists are making their expertise available to new groups organizing to defend healthcare and protest discrimination. Westervelt explained:
Helping to guide [many current protests] are veteran activists with the AIDS Coalition to Unleash Power — better known as ACT UP. Thirty years after the coalition's founding, some seasoned activists are dusting off their bullhorns and updating their direct–action playbooks to tap into the new wave of activism energized by opposition to Trump's policies...
"All of the civil disobedience training is being done by the same exact people who did them at ACT UP," Finkelstein says. "So here is this perfect cross–section of this moment. Here is an intergenerational activist organization. And its meetings are in the community center a spitting distance from where the original ACT UP meetings took place."
In January, Rise and Resist took one of its first actions: Scores of members booked brunch reservations at restaurants in several Trump–owned properties including Trump Tower. Over eggs Benedict in the crowded eateries, protesters began to cough and cough some more. The "cough–in" protesters held up signs saying "Trumpcare is making us sick."
"That's the kind of mediagenic sort of action that ACT UP used to needle their opponent," says filmmaker and writer David France, who is behind the book and film How To Survive A Plague.
As they contribute to social movement efforts today, ACT UP veterans are extending the legacy of a group that has an impressive track record of accomplishments.
- How much of the material in this reading was new to you, and how much was already familiar? Do you have any questions about what you read?
- According to the reading, what were some of ACT UP’s major accomplishments? Which of its original goals does it continue to fight for today?
- ACT UP is credited with inspiring a generation of activists to embrace creative, direct action tactics. Can you think of any more recent protest campaigns that have used similar tactics? What did you think of these direct action tactics?
- We are often told that social change comes from elected officials and other powerful leaders. However, throughout history, social movements like ACT UP have often played a critical role in compelling hesitant politicians and other power–holders to take action. Can you think of other instances in which protest movements succeeded in accomplishing important goals?