Almost as soon as AIDS organisations were started, support groups for people diagnosed with AIDS emerged on the model of self-help groups for other diseases. These groups quickly became more than support groups however; they provided welfare advice, information on treatments and advocacy for the needs and rights of people with AIDS.

PWA support groups also spawned buyers' clubs and treatment newsletters as people with HIV sought to obtain experimental treatments. In the mid-1980s several drugs not licensed in the US, including isoprinosine, were smuggled into the US from Mexico by what became known as the AIDS underground, hence the label 'underground' treatments. Treatment newsletters such as AIDS Treatment News in San Francisco were founded to provide information on the underground and experimental treatments being used by people with AIDS.

In 1987 a new organisation emerged as a voice for people affected by AIDS. The AIDS Coalition to Unleash Power (ACT UP) was founded in New York in 1987 as a radical protest group intended to draw attention to the lack of progress in research and discrimination against people with AIDS. Its targets were Federal drug regulators, researchers and the media, and it drew attention to issues by a mixture of media-friendly street protests and well-informed lobbying. Amongst the group's targets were the Food and Drug Administration (the US authority responsible for licensing new drugs), the National Institutes of Health (the body responsible for running AIDS drug trials) and The New York Times (for failing to report the impact of the epidemic in New York).

ACT UP groups soon sprang up in other US cities and in other countries, the most successful and largest outside the USA being in Paris.

In retrospect, some of the group's campaigns are questionable. For instance, in 1989 ACT UP targeted New York City Health Commissioner Stephen Joseph after he revised downwards estimates of AIDS cases for sound epidemiological reasons. His rationale for doing so was widely misrepresented by ACT UP and the gay press as homophobic, but the estimates which Joseph chose to use as a basis for service planning turned out to be accurate. Campaigns promoting safer sex to lesbians were another example of misguided priorities; whilst ACT UP did virtually nothing to promote safer sex amongst gay and bisexual men, significant amounts of energy were devoted to highlighting virtually non-existent risks to lesbians. This was paradoxical given the organisation's commitment to correcting misinformation about modes of transmission in the mainstream media, and reflected the extent to which ACT UP became driven by the agendas of caucuses within the organisation rather than attention to the realities of the epidemic.

Even in 2004, ACT-UP Paris’s involvement in stopping trials of pre-exposure prophylaxis to see if oral HIV drugs could be used in high-risk negative people to prevent infection has been criticised by other activists, though others saw their protests against the trials as leading to advances in the development of guidelines for the ethical conduct of prevention trials in resource-poor setting.

Further reading

Bruce Nussbaum: Good Intentions, Atlantic Monthly Press, 1991.

Peter Arno & Karen Feiden: Against The Odds: The Story of AIDS Drug Development, Harper Collins, 1992.

John S. James (Ed.): AIDS Treatment News Vols 1-2, Celestial Arts 1989, 1991; Vol 3 (Alyson),1994.