The following comes from a report produced by HCM strategists, a public policy advocacy consulting firm: “Back to Basics: HIV/AIDS as a Model for Catalyzing Change.”
What the AIDS movement accomplished
The legacy of the AIDS movement are staggering, unparalleled in any other disease:
- The U.S. government spends $3 billion per year in public funds for the research of HIV/AIDS.
- According to the US Food and Drug Administration (FDA) there are now 33 drugs in seven classes developed and distributed by the 10 largest pharmaceutical companies in the world for the treatment of the disease.
- Most importantly, for those who are able to access treatment, AIDS, once a death sentence, is now a chronic disease.
- Patient-driven clinical trial designs: self-educated patient activists in conjunction with physician and scientist allies set the NIH agenda for research and clinical trials
- Expanded access to new drugs: AIDS activists, in a race to save their own lives, reduced regulatory hurdles to accessing drugs that might
- Congressional funding for research: Funding for AIDS research at the NIH increased from $5.6 million in 1982 to $1.62 billion in 1998. By 1998, AIDS research represented 12 percent of the entire NIH budget.
- Congressional funding for care: In addition to research, Congress also invested in services for prevention, care and assistance for people living with HIV. In 1990 it provided an initial $200 million. By 1994, Congress had allocated $632 milllion through this act.
Grabbing Attention / Putting AIDS on the national agenda
- Civil disobedience: HIV/AIDS activists organized and engaged in civil disobedience to get the nation’s attention. It was an all-out ‘our bodies are on the line’ exercise. Never before had this country seen thousands of sick people laying their bodies down on Wall Street. Or chaining themselves to the fence of the FDA. Or storming the NIH. “You have to be able to inspire people at a level of civil disobedience,” noted Jim Curran, M.D., who was then the director of HIV/AIDS at the CDC. “Throwing condoms in St. Patrick’s Cathedral, I mean, who does these kinds of things? They were not afraid to get arrested.”
- Skillful use of media: ACT UP’s demonstrations were always an act of theater. They told a clear and gripping story because their core audience was the media.
HMC’s main takeaway in their study of what they call the “mass mobilization” and “theater” of the AIDS movement is a question: are present-day health movements too complacent, too polite?:
Patients become experts
Once activists had garnered the attention to put AIDS on the national agenda, they began to focus in a more targeted way at specific goals, specific institutions, specific solutions. “The activists not only got attention effectively, they also did their homework and knew what to ask for.”
AIDS activists became “patient experts” both in the political and bureaucratic processes in Washington and in the scientific process. While protests opened the door, their knowledge and the sophistication of their demands are what ultimately allowed them to become effective advocates for change.
The power of the ACT UP community
ACT UP created a structured setting for HIV/AIDS activists to come together and speak out in a unified office. They had many committees and there was a committee meeting virtually every night of the week. The committees allowed activists to get together, get to know one another, and create a sense that “they were all working together for the same cause.”
The ACT UP meetings were crucial in sustaining and focusing activists, allowing them to make meaningful connections, and creating a sense of fellowship.
ACT UP's Inside/Outside Strategy
- What can we learn about the history of the AIDS movement?
- How can these lessons be replicated or translated for the ME movement?
- What are our constraints and what are our unique resources?