AIDS treatment activism emerged in the United States (US) in the second half of the 1980s as a response to at least two major factors: the direct experience of acute illness and death presented by the HIV/AIDS epidemic and a lack of confidence in the capacity or willingness of the medical and pharmaceutical industries to act in the interests of people living with HIV or AIDS. Against a background of profoundly negative social perceptions of the constituencies worst affected by AIDS in the developed world, gay and bisexual men and injecting drug users and their sexual partners, the question of how medical information is generated, by whom and for whom became of major significance for those involved—especially those infected and their immediate friends, families, carers and communities.
This chapter discusses the context in which obtaining and disseminating reliable, up-to-date information in an accessible form emerged as a key issue among AIDS activists and describes and analyses the development of treatment information networks in the wider context of treatment activism, first in the US and subsequently in Britain. The author draws on personal experience and research on both sides of the Atlantic and on recently conducted interviews with key players in establishing and running AIDS information networks in Britain (Edward King, Mark Harrington, Peter Scott and Keith Alcorn). The struggle for a measure of control over information about AIDS and HIV is part of a wider strategy to secure health for individuals, groups and communities which involves a direct challenge to the, at best, benevolent paternalist attitudes of the medical, pharmaceutical and public health establishments and to widespread prejudicial attitudes and behaviours which undermine people’s health.
For people living with HIV and AIDS, choices about treatment are bedevilled by the fact that, since the beginning of the AIDS crisis in 1981, rival
* First published in Paul Bywaters and Eileen McLeod (Eds) Working for Equality in Health, London: Routledge, 1996.