ABSTRACT
This chapter focuses on the experience of organization building, of the initial directions and of change in the groups that responded to AIDS. It critically assesses the early history of gay voluntarism and its cross-national variation; focusing on the impact on AIDS policy, and especially on research and treatment policies. AIDS organizations grew out of two earlier tendencies: the doctor/patient revolution of the 1960s and ‘70s; and the decade of organization building round gay health issues in the 1970s. By the mid 1990s, the ‘heroic’ early roles of the AIDS patient support groups had changed considerably but there were also other models in operation, whose circumstances were also changing. The chapter outlines the collective experiences of hemophiliacs, women and drug users in relation to AIDS. It also looks to the developing world to touch on a rather different history of patient support groups and voluntary input.
