In the United States the first voluntary organisations to be established were Gay Men's Health Crisis in New York and the Kaposi's Sarcoma Research and Education Foundation in San Francisco (later the San Francisco AIDS Foundation). Initially these organisations were established to raise money for research into the new disease, and to disseminate information to gay men, and it was to be several years before these organisations began to develop the much broader roles of service provision and policy advocacy. The organisations also established helplines, and had close links with the leading doctors treating people with AIDS.

In the UK the first organisation to emerge was the Terrence Higgins Trust, which was founded in 1982 in memory of one of the first British gay men to die of AIDS. The Trust was re-launched in May 1983 with the object of providing education and support by volunteers from London Gay Switchboard, which organised a conference in May 1983 to discuss the new disease.

These UK initiatives followed the broadcast of a BBC2 Horizon documentary Killer In The Village, arguably the single most important programme on AIDS to be broadcast in Britain. It alerted thousands of gay men to the new disease. By the end of 1983 the Terrence Higgins Trust had published its first information leaflet on AIDS and opened a helpline in early 1984. The first safer sex leaflet was launched in late 1984, and it was at this point that the gay press and most gay men in the UK began to realise that safer sex precautions required more than just the avoidance of Americans (Berridge; Garfield; Scott).

Trust volunteers met with the Chief Medical Officer to lobby for public education, and used the gay press to promote the adoption of safer sex. For several years the gay press, and Capital Gay in particular, remained the only regular source of information on AIDS in the UK.

The Terrence Higgins Trust grew during the 1980s from an organisation with a very small staff to the largest employer in the HIV voluntary sector and the biggest provider of services to people with HIV. The Trust's early work concentrated on plugging the gaps left by government neglect, which meant that the organisation was amongst the first to work not only with gay men but with drug users, prisoners, women, young people, faith communities, families and children. The organisation's great strength is its basis in volunteers' direct experience of the epidemic. One of the first services to be developed was an idea copied from the American model, buddying, intended to counter the isolation and shock felt by people diagnosed with AIDS.

Scottish AIDS Monitor (SAM) was also founded in 1983, but was forced to close in 1995.

A support group for people diagnosed HIV-positive was founded soon after the HIV antibody test became available in the UK in late 1984. People with HIV identified the need for peer support as crucial. Body Positive started out as a support group within the Terrence Higgins Trust, but swiftly became a separate organisation from February 1985, and during 1985 founded a helpline, a hospital visiting service and a newsletter. The Body Positive drop-in centre opened in June 1989 and the group held its first annual conference in 1989.

A national network of Body Positive groups formed from 1986 onwards as people diagnosed HIV-positive outside London sought the support of self-help groups. The Body Positive movement was a reflection of the large asymptomatic population of HIV-infected people in the UK and the relatively small number of people with AIDS. In contrast, American activism was concentrated on PWA (people with AIDS) groups from very early on in the epidemic, leading to very different models of advocacy and support.

Frontliners was founded in 1986, once again within the Terrence Higgins Trust, but also grew into a separate organisation with its own premises and branches outside London. Frontliners provided support, advice and information as well as monitoring services provided to people with HIV and AIDS. The organisation opened its own premises in 1990, but was forced to close for financial reasons in 1991.

In 1993 a new organisation for people living with HIV and AIDS was founded. The UK Coalition of People Living With HIV and AIDS also provides advocacy, support and information.

Positively Women was started in 1987 by a group of HIV-positive women who found that existing services were unable to meet the needs of women diagnosed with HIV.

The National AIDS Trust (NAT) was founded in May 1987 with finance from the government. Its role would be to co-ordinate the activities of the voluntary sector, and fundraising chairman Robert Maxwell promised that the Trust would raise £50 million. Unsurprisingly, virtually none of this money materialised, and it was to be left to trusts such as CRUSAID and the Red Hot AIDS Charitable Trust together with trust funds set up by two pop stars, Elton John and Freddie Mercury (posthumously) to perform the bulk of independent fundraising in the UK. As a co-ordinator of voluntary sector activity the National AIDS Trust's record has been mixed; whilst the organisation has done much to provide `seed' funding for new organisations and has been quick to recognise new needs, critics of NAT say that the organisation had failed until recently to grasp the extent to which the political climate was changing or the needs of gay men were being ignored.

Rationalisation of the HIV sector

In 1999 and 2000 several major mergers and closures in the UK HIV sector signalled that the proliferation of voluntary sector organisations had halted, and that the sector has grasped the need for a rationalisation of services to meet the new financial realities. In 1997 and 1998 Health Service Commissioners in London signalled that significant cuts in voluntary sector grants would be forthcoming as the cost of combination therapy increased.

In 1999 the Terrence Higgins Trust merged with a number of regional service providers to form a national organisation for England, and in 2000 Body Positive closed after serious financial problems (despite high demand for its services). The London Lighthouse and Terrence Higgins Trust joined together and the AIDS Treatment Project's phoneline was absorbed by the Trust following ATP's financial collapse.

Changes were not confined to the social care arena, which has been the subject of much scrutiny. Changes in the HIV prevention sector also occurred. In London, Rubberstuffers lost the contract to provide free condoms for gay men in a price competition, whilst Healthy Gay Manchester merged with the city's Lesbian and Gay Switchboard to form a new gay health organisation.

See below for the situation since 2000.

Further reading

Dennis Altman: Power and Community: Organizational and Cultural Responses to AIDS, Taylor and Francis, 1994.

Simon Garfield: The End of Innocence: Britain in the time of AIDS, Faber & Faber, 1994.

Philip Kayal: Bearing Witness: Gay Men's Health Crisis and the Politics of AIDS, Westview, 1993.

Edward King: Safety In Numbers (Chapter Five), Cassell, 1993.

Peter Scott: White Noise: How gay men's activism gets written out of AIDS prevention, in: Acting on AIDS, Eds Josh Oppenheim and Helena Reckitt, Serpents Tail, 1997.