AIDS Activism

Abstract

The first decade of AIDS was characterized by death and activism, the second by effective new treatments and optimism, and the third by renewed activism on a global scale to improve access to prevention, care and treatment in the developing world. AIDS activism emerged in the 1980s in epicenters of the epidemic, including New York City, San Francisco, London, and Paris and later in Rio de Janeiro, Sydney, Cape Town, Bangkok, and elsewhere. In the context of accelerating and deadly local epidemics, activists confronted governments and other institutions to demand attention, rights, protection and funding for science research, prevention, and treatment. Often highly educated and sophisticated, activists drew the attention of the public, the political establishment, academics and the media through marches, public demonstrations, lawsuits, legislation and media manipulation. This new science-informed, community-based treatment activism ultimately led to scientists and activists working together to secure the resources for research that led to breakthroughs in diagnosis, prevention, and most dramatically, treatment. Activism in response to the AIDS epidemic changed the relationship both between physicians and patients and between clinical research and patients, including patient involvement in the initiation, design, recruitment, conduct and evaluation of clinical trials, which was virtually nonexistent prior to the late 1980s.