HIV/AIDS Advocacy as a Model for Catalyzing Change
[pullquote align=”full” cite=”” link=”” color=”#E7453A” class=”” size=””]“What makes activism work is [patients’] anger and fear…somehow you have to be able to capture that, put it in a bottle and bottle it and use it.” – Larry Kramer[/pullquote]
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[pullquote align=”full” cite=”” link=”” color=”#E7453A” class=”” size=””]HIV/AIDS activists were masterful in their ability to utilize the media and demonstrations to put a human face on the disease. They mounted demonstrations that offended people and made policy makers and federal officials uncomfortable.[/pullquote]
- 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?:
HIV/AIDS activists showed us that getting attention sometimes requires making people feel uncomfortable. Today, organizations are working to execute on multiple goals and may shy away from actions that make decision makers uncomfortable. Instead, they focus on building relationships and engaging in activities that make decision makers feel safe. They develop sophisticated strategies focused on how to work within the system and the rules, without challenging the notion that the system and the rules as constructed may not be in their best interest. And for individuals who don’t have organizations to work through, challenging the status quo may seem like a Herculean task.
Have we become complacent? In many instances, organizations meet with their elected officials, are invited to meetings at federal agencies, are asked to sit on advisory boards, and are often part of “the process.”
And yet the level of frustration about the speed of getting new treatments and cures is growing. Access and face time do not mean you have decision makers’ attention…
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.”
They stumbled across one woman named Iris Long who took them under her wing and served as a mentor. Larry Kramer remembers meeting Long — a housewife from Queens who was also a biochemist — for the first time. “She came to an ACT UP meeting and said ‘you really don’t know anything. You don’t know about the system. You don’t know about the drugs. You don’t know about the science. You don’t know how the government works. You don’t know the FDA from the NIH. You’re just out there yelling and screaming.’” She offered to teach this to anyone who wanted to learn, and a group of advocates, including Jim Eigo, took her up on the offer. From this, a group of highly informed advocates emerged.
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.[pullquote align=”full” cite=”” link=”” color=”#E6443D” class=”” size=””]“[The activists] were able to make us think in some new ways, to rethink some of the models that existed because the truth is some of the models were simply legacies of how things had been done but didn’t mean that that was the only way things could be done.” – Margaret Hamburg, M.D., assistant director at NIAID, 1989 to 1990, “[/pullquote]
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.”[pullquote align=”full” cite=”” link=”” color=”#E7453A” class=”” size=””]Kramer believes that one of the reasons that ACT UP was so successful was that it was social. He says, “It was a good time, which is something else that people should be aware of, that you should make whatever you are doing enjoyable. It helps cement brotherhood. And that’s important— brotherhood— in all of this.”[/pullquote]
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 ACT UP did so well,” recalls Peter Staley, “is that it had both an outside and an inside strategy.” As part of their inside strategy, clearly defined roles were created. Staley recalls that “there were the real nerdy geeks who just salivated over becoming experts on the most obscure minutia of immunology and virology. And then there were a few big picture people like me.” This combination of expertise created a powerful force.
Jim Eigo refers to this strategy as a “two-handed model.” He says that “we who were working on the inside never could have done what we did if we couldn’t deliver bodies in the streets. But bodies in the streets wouldn’t have gotten the regulatory reform in 14 months that people have been trying elsewhere to do over decades.”
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