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M-21: Thirty Years Later: A Look Back at the Impact of AIDS Activism on Drug Development

Poster Presenter

Sydney Hoiseth

Student
Bedford High School
United States

Objectives

To look at the impact of organized patient advocacy on drug development for HIV treatment. After many years of conflict, patient advocacy groups compromised with regulators to balance more rapid access with determination of safety and efficacy.

ORAL PRESENTATION: 1:35PM

Method

Extensive interviews with regulators, drug developers, medical professionals, NIH researchers, patient advocacy group leaders, LGBT professors; literature search; primary sourcing

Results

Our research seeks to answer the questions “what was the overall social and political climate towards people with AIDS (PWA) in the 1980s and ‘90s?”, “why did PWA conflict with drug regulatory bodies like the FDA?”, and “how were AIDS activists and scientists able to find compromise?” We began our research by watching the documentary “How to Survive a Plague” to gather necessary background information, focusing on the conflict between activists and the government. However, we found a more fascinating conflict in the question of if people with AIDS who are going to die should be able to take experimental drugs, or if those drugs should go through rigorous testing to ascertain their safety. Thus, we worked to find primary sources from activists and scientists alike. Additionally, we found books and journals by renowned authors and online exhibits presented by the government and activist groups to gain better understanding of the topic. Then, we examined the specific actions and compromises spurred by the conditions surrounding and events during the AIDS crisis. Assembling our thesis was simply a matter of compiling the facts we had learned into a cohesive argument, and we honed in on the historical significance of our topic, connecting our topic to a global struggle.

Conclusion

ACT-UP and other AIDS activism groups revolutionized the role patient advocacy in drug development, directly impacted the way that drugs are developed for patients with life threatening unmet need, and served as prologue for today's patient centricity movement. In 1981, AIDS began to spread throughout stigmatized groups in the United States, most prominently the gay community. Although anyone could contract HIV/AIDS, the nation initially avoided addressing the crisis because of the disease’s stigma. Thus, the outraged gay community created the AIDS Coalition to Unleash Power (ACT UP), which sought to change the systemic homophobia, strict regulations, and price gouging that kept people with AIDS (PWA) from treatment. Activist groups and the FDA held conflicting views over whether PWA should have complete access to experimental therapies or if the FDA should withhold them until they fully understood their effects. While this conflict persisted, neither approach proving effective, PWA suffered the deadly consequences. However, with the discovery of the triple therapy and incorporation of PWA into the treatment approval process, both parties found lifesaving compromise that led to the FDA's current expanded access program and the global distribution of effective AIDS treatments.