AIDS Activism: Fight Back! End AIDS!

man with bullhorn

Approaching the long line of cars at the Tijuana border, Jim Corti was not afraid, even though his trunk was packed with boxes of medications from Mexican pharmacies. As he reached the checkpoint he hoped he would be waved through once again.

He was on a mission to bring potentially lifesaving HIV drugs, not yet approved here, to the U.S. It was the late 1980s and many said that using unproven drugs was unsafe, but there were no approved treatments and little research to find them. People were dying, so they took action in order to survive. Ultimately, this illegal smuggling proved futile in stopping HIV, but forced the FDA to revise the laws around importing drugs for personal use.

Three Decades of Treatment Activism

In the early days of the epidemic, people with AIDS and their advocates set the stage for many victories in government and institutional policy, scientific research and clinical trials, treatment access, and drug pricing. Corti was one of the first activists who went to such extremes. But he was only one of an unprecedented wave of activists, some of whom met in the boardrooms of drug companies and in the offices of health policy makers while others committed civil disobedience in the streets.

Few treatment activists had science, statistics, or policy backgrounds. Most were just passionate to live and took the time and energy to learn everything they could by reading, studying, attending journal clubs, and engaging in long debates with their comrades. AIDS activists knew that in order simply to stay alive they had to unleash their power by educating and mobilizing their own communities.

Drugs Into Bodies

On a cold day in October 1988, ACT UP stopped all work at the FDA in one of the most remarkable AIDS demonstrations ever. "SEIZE CONTROL OF THE FDA!" centered on "getting drugs into bodies". The action was incredibly sophisticated. with media and legal coordination, street theatre, and civil disobedience outside while activists from the Treatment and Data Committee of ACT UP met with the FDA on the inside.

In those days only AZT had been approved, and experimental drugs were simply not accessible. Treatment activists felt that there were safe ways to provide early access to new drugs, but the FDA wouldn't budge. Despite the massive protests, changes were not seen until months afterward. But access to experimental drugs was eventually approved by the time of the second AIDS drug, Videx. A mechanism that allowed access to a new drug in a "parallel track" to clinical trials was put in place by the FDA. It was a win-win situation.

Pricing Battles

Drug company greed has always been a huge focus of AIDS activists, since prices were so extreme. One of the first major battles was over AZT, the first approved AIDS drug. Burroughs-Wellcome had no idea the anger its price -- an astonishing $10,000 a year -- would trigger. Several ACT UP actions culminated in the famous New York Stock Exchange demonstration in September 1989, when activists chained themselves to the trading floor balcony and stopped trading by dropping a banner that read "SELL WELLCOME." Days later, Burroughs-Wellcome lowered the price to $6,400 a year. It was the beginning of a tedious fight with the industry that continues today.

Today, sophisticated meetings regularly occur between expert drug pricing activists and drug companies. The Fair Pricing Coalition, started by Martin Delaney and others in 1998, has become the consumer watchdog of HIV and, more recently, hepatitis drugs. These activists have had a major impact on pricing policy.

According to Lynda Dee, a member of the FPC, "HIV is the only disease for which industry consults the community before a price is set." The group has also helped to ensure that all companies have decent patient assistance and co-pay assistance programs. It's a "kindler-gentler" form of AIDS treatment activism than street protests, but a critical part of changing stubborn pricing policies.


Activists, who were at the table at every step of Fuzeon's development, were nevertheless furious when it became the highest priced AIDS drug up to that time, at $25,000 a year.
Activists, who were at the table at every step of Fuzeon's development, were nevertheless furious when it became the highest priced AIDS drug up to that time, at $25,000 a year.

The scientific knowledge AIDS treatment activists have gained is unprecedented. This self-education was necessary to force scientists to take notice and change policy. There have been hundreds of meetings with treatment activists, researchers, and drug companies over the years, and they still occur. Meeting face to face on mostly friendly terms, companies learned how engaged and smart activists were about complex science, clinical trials, and regulatory issues.

Fuzeon came along at a time when people who had become resistant to older HIV drugs needed new ones. But its approval wouldn't have happened without constant advice from treatment activists, who advised Trimeris in its early development. The compound was bought by Roche, approved, and no doubt saved lives -- at the very least extending them until better drugs were approved. Activists, who were at the table at every step of its development, were nevertheless furious when it became the highest priced AIDS drug up to that time, at $25,000 a year (see picture below).

Clinical Trials: At the Table

"Activists have provided a model for representation in the FDA drug approval process. For years there has been a seat at the table at FDA advisory hearings where HIV drugs are given the 'once-over' by researchers and community members."

AIDS treatment activists have been a powerful voice in the design and implementation of clinical trials. From writing background documents to the creation of Community Advisory Boards, they changed the clinical trials process. Participation in research meetings and conferences forged relationships with researchers and policy makers, and community members are now rarely left out of the discussion. From the early days of the NIH's Community Constituency Group to today's grassroots AIDS Treatment Activist Coalition, a watchful eye has remained on clinical trials.

The AIDS Treatment Activist Coalition, created in 2001, focuses on HIV treatment research. The meat of its work is interaction with the pharmaceutical industry and the FDA. Veteran activists created the group because treatment activism was lagging and there was a need for a national coalition, including the mentoring of a new generation of treatment activists.

AIDS treatment activists have provided a model for representation in the FDA drug approval process. For years there has been a seat at the table at FDA advisory hearings where HIV drugs are given the "once-over" by researchers and community members. The hearings are a very sophisticated process that have a direct impact on the lives of people with HIV. Combing through clinical trials and understanding the complexities of safety and effectiveness data are not simple tasks, but the responsibility of representing people with HIV is equally difficult and necessary. This would never have happened had it not been for the early activists who demanded community representation at this very critical point of the drug approval process.

Women have also been a formidable force in treatment activism since the days of the Treatment and Data Committee of ACT UP/NY and Project Inform in San Francisco. From the ACTG 076 trial (when activists demanded that the lives of women were just as important as those of fetuses) to the GRACE study (the first trial designed exclusively for women with HIV), important lessons have been learned. Because of activists, GRACE has set a precedent and much more data will be available on how better to inform and include women in HIV research.

Global Activism

There are enormous and complex barriers to HIV treatment outside the U.S., and the basic health care infrastructure remains an impediment. The first major step forward came in 1997, when South Africa passed the Medicines and Related Substances Control Act, allowing it to make or import cheaper generic versions of HIV drugs. The drug companies were not happy -- they wanted South Africa to buy drugs directly from them. Of course, virtually no one in Africa could afford the drugs at full price, and without them millions would die.

The media were virtually silent on the issue, so members of ACT UP/NY and F.U.Q. (Fed Up Queers) planned actions targeting Al Gore, who was announcing his presidential run in June of 1999. Despite being progressive on other issues, Gore had worked with drug companies to block the South African law, making him a perfect target.

After several months of activist "zaps" resulting in wide media coverage, the U.S. changed its policy toward South Africa in September of 1999. And in May of 2000, after continued pressure (including taking over the offices of the U.S. trade representative), Bill Clinton expanded the policy to all nations, issuing an Executive Order that "...the United States will henceforward implement its health care and trade policies in a manner that ensures that people in the poorest countries won't have to go without medicine they so desperately need."

Today groups like Health GAP fight for drugs and necessary resources for people with HIV across the globe. According to Health GAP's website, "We work with allies in the global South and in the G-8 countries to formulate policies that promote access, mobilize grassroots support for those policies, and confront governmental policy makers, the pharmaceutical industry and international agencies when their policies or practices block access." Their multi-pronged strategy includes advocacy for the importing of generic drugs without the need for industry-controlled charity programs, and work to ensure that the Global Fund to Fight AIDS and PEPFAR remain well funded. The list of Health GAP accomplishments is huge -- it has led the international battle for drugs in parts of the world where HIV treatment was just a dream.

The Future

Many AIDS treatment activists have moved on to professional careers or are simply taking time for themselves after years of thankless work. But there are many others who continue to follow the latest developments in cure-related research and Hepatitis C.

AIDS activists in the U.S. and abroad have tracked AIDS cure research closely since the first case study of a cure was reported in February 2008. Several activists, including the late Martin Delaney, set off a new wave of AIDS activism focusing on the complex goal of eradicating HIV. Community Advisory Boards are being formed to follow the latest cure research being done through the NIH Martin Delaney Collaboratory. While much of the research is still in the basic science stage, activists have been invited to the table at this early stage once again, a testament to years of activist expertise and trust in patient collaboration.

AIDS activists joined hands with HCV (hepatitis C virus) activists in developing the watchdog group known as HCAB (Hepatitis Community Advisory Board). Tackling the challenge of HCV drug development has not been an easy task, but HCAB has done incredible work monitoring it on a national and international scale. At this stage of the game, with huge improvements in HCV treatment looming, HCAB has been involved with almost every new drug and helped guide clinical trials with most of the major drug companies.

Finally, ACT UP San Francisco has reformed after years of stagnation and apathy. Recently, it held a street action protesting the exorbitant price of Gilead's new drug, Stribild. We have come full circle from the days of the Wall Street AZT pricing action. During this time, many lives have been changed and thousands saved. But some things still haven't changed, highlighting the urgent need for a new force backed up by past successes.


These are obviously not the only stories that can be told of an exceptional group of activists over three decades of AIDS. Many people have not been acknowledged by the executive directors or fully supported by AIDS service organizations and they never asked for accolades or awards. They understand that the real reward is the lives saved. These are the activists who changed the course of the epidemic and thankfully they remain alive and effective today.

Matt Sharp is long-term survivor, activist, writer, and educator.