25 Years of AIDS and HIV: ACTing Up From 1987-1992

On June 5, 1981, the CDC introduced the world to the disease the eventually became known as AIDS. This is the second article in a series that looks back at some of the major milestones of the past 25 years. Part One of this series can be found in the January 2006 edition of Survival News.

1987 would prove to be a pivotal year in the fight against AIDS. In just five short years, the estimated number of AIDS cases had grown from five to nearly 40,000. We finally knew that there was a link between HIV infection and an AIDS diagnosis, and front-line providers, researchers and advocates all knew that this disease was beginning to take a heavy toll on women and people of color. People were fed-up with the slow pace of government and industry in developing an adequate response to this growing epidemic and began to take matters into their own hands.

In February of 1987, the pharmaceutical company Burroughs Wellcome (now known as GlaxoSmithKline) released AZT as the first medication to treat AIDS -- with a price of $10,000, the most expensive drug ever released. Since AZT had actually been developed in the 1960s in a government-sponsored project to find treatments for cancer, the AIDS community was outraged at this price, believing that the only reason the company charged that amount was due to the extreme lengths to which people would go to find a treatment or cure for AIDS.

The outrage led to action, and the first ACT UP demonstration was held on March 24, 1987, on Wall Street to protest the "AIDS Profiteering" of the pharmaceutical industry. While Larry Kramer is often given sole credit for founding ACT UP, the truth is much more complicated. While Kramer did give voice to the growing frustration in the LGBT community at the lack of government response to AIDS through articles and speeches, it was really a combination of seasoned social justice activists and daring artists such as the Gran Fury art collective and the Silence = Death project that helped this new activism group gain an immediate foothold in the AIDS community.

By December 1987, 71,751 cases of AIDS had been reported to the World Health Organization. The US was the epicenter of the epidemic with the highest number of reported cases, 47,022. Of those, 20,436 people had died of AIDS in the US alone. The next several years represented the height of AIDS activism and advocacy in this country. The Robert Wood Johnson Foundation was one of the first major national foundations to tackle the issue of AIDS services and the organizational infrastructure that would be needed to build systems of care in the cities hardest hit by AIDS. Starting in 1986, the foundation had distributed tens of millions of dollars to establish case management programs throughout the country in an effort to promote the establishment of a specific system of care for people living with AIDS. These private efforts would eventually evolve into the community planning councils and the first coordinated federal response to AIDS: the Ryan White CARE Act.

As the system of care began to evolve and strengthen, the frustrations of the limited effectiveness of AZT led to some advocates to begin looking at the entire issue of pharmaceutical research and development. These grassroots efforts at "treatment activism" were met with great skepticism at first. Medical research is a complex field of study that takes even the brightest students years to master, so what could a rag-tag group of artists, media professionals, and leftists possibly add to the mix? The answer was a great deal. People such as Martin Delaney of Project Inform, Mark Harrington of the Treatment Action Group and Iris Long of ACT UP/New York represent the hundreds of treatment activists whose efforts led not only to the belief that all people living with HIV/AIDS could be in partnership with the health care providers, but led to the development of all the antiretroviral medications we benefit from today.

The successes in advocacy and advancements in research were also met with shifts in how mainstream America viewed the AIDS crisis. With the outspoken advocacy of a young Ryan White and the passage of his namesake legislation, people were finally beginning to realize that AIDS was everyone's concern. One of the groups that helped to bring out this attitude shift was Visual AIDS. This artists collective was first formed in 1988, although it was their creation of the AIDS ribbon in 1991 that allowed many who were looking for an alternative to the "Silence = Death" logo of ACT UP to find a public way of showing their support of the fight against AIDS.

These years also gave rise to the voice of women AIDS activists. While women have always been involved in AIDS advocacy, care, education and research, it was not until 1990 that pressure began to mount on looking at the specifics of HIV and women. Up until this time, the basic scientific definition of AIDS remained based on the opportunistic infections that had been seen in the men who made up the majority of early cases. However, reports continued to surface of women testing positive for HIV and dying of infectious diseases, yet who did not meet the definition of AIDS. Led by the ACT UP Women's Caucus and groups such as WORLD (Women Organized to Respond to Life-threatening Disease) and Women Alive, a multi-year campaign was launched that eventually led the CDC to change the definition of AIDS to specifically include women.

1992 was an election year, and may have represented the peak of AIDS activism. Demonstrations against the President and government officials had become routine. Having an arrest record was almost mandatory as a way of showing you cared about fighting AIDS. Public opinion was starting to turn towards supporting people living with HIV. Both political parties responded to this by announcing platforms concerning AIDS and having people living with HIV speak at their national conventions. The Democrats invited both Bob Hattoy, a political insider who was recently diagnosed, and Elizabeth Glaser, founder of the Elizabeth Glaser Pediatric AIDS Foundation. The Republicans invited Mary Fischer. Activists gathered outside both conventions, however the scene at the Republican convention was the most dramatic. Following a peaceful march to the Houston Astrodome, police cordoned off the demonstration and blocked it from reaching the gates. Outraged, the activists began burning barricades and an effigy of the President. Although only six people were arrested, unknown numbers of protesters were injured when police swept through the crowds on horseback swinging batons at the restless crowd.

At the end of 1992: 335,211 are diagnosed with AIDS in the US, 198,322 are dead, and it is estimated that well over 11 million people world wide are infected with HIV.

Jeff Graham

Jeff Graham is AIDS Survival Project's Senior Director of Advocacy and Communications (jgraham@aidssurvivalproject.org).