Soon after aids was first recognized in 1981, concerned lay individuals initiated efforts to deal with the unique crises to which they bore witness. These volunteers came together in associations to do what many others in society were either unwilling or unable to do. They gathered and spread information about the frightening new disease. They raised money to fund much-needed medical research. They cared for those who were suffering, attempting to relieve the horrors caused by both the disease itself and the effects of stigmatization and discrimination. The associations challenged governmental and health authorities to intervene more directly to check the epidemic.

In effect, the work of these early — and subsequent — voluntary associations founded to combat AIDS collectively may come to represent the apotheosis of “the consumer movement.” Owing in large part to their efforts, persons with HIV infection are no longer viewed as passive “patients” but rather as “people with AIDS,” i.e., as active consumers. The conditions of consumer sovereignty are clearly established and accepted, even if not yet fully met. This outcome can be seen clearly in the effect voluntary associations have had in devising a shared vocabulary about AIDS with the professions, in working jointly to create new knowledge — both social and scientific — and in occupying a preeminent role in defining unmet needs and the conditions under which available services can be made truly accessible to those with HIV infection.