Chapter 3
Civil society responds to the AIDS tragedy
The response to the HIV/AIDS pandemic by civil society around the world is one of the most vivid examples of community participation and self-determination. The emphasis in the Declaration of Alma-Ata on community participation “in the spirit of self-reliance and self-determination” fits with the views of early HIV/AIDS activists, expressed in the Denver Principles (5). Drafted in 1983 at a meeting of activists in Denver, USA, they assert the right of people living with HIV/AIDS to dignity in life and death and to representation and power in all decisions concerning their well-being.
In the USA, where the first HIV/AIDS cases had been reported in 1981, then in Europe, Canada and Australia, organizations of gay men and women were the first to respond. The Terrence Higgins Trust was established in the United Kingdom in 1982. Helseutvalget for Homofile (Norwegian gay health association) was created in 1983. These and similar groups built on strategies and social capital developed in the gay rights and feminist movements of the preceding decades.
Groups such as the AIDS Coalition to Unleash Power (ACT UP), formed in the USA in 1987, combined a successful advocacy strategy with the building of a formidable scientific knowledge base, which enabled members to become informed participants in medical research and the policy-making process. During the 1980s and 1990s, these groups won increased funding for antiretroviral drug research, increased AIDS services budgets at federal, state and local levels, an accelerated testing process for drugs, and expanded access to experimental drugs for people not accepted into clinical trials.
International civil society organizations, including the International Federation of Red Cross and Red Crescent Societies, began HIV/AIDS-related work in the early 1980s. In African countries with struggling health systems, numerous community-based and nongovernmental organizations were on the front lines. In many communities, women assumed key leadership roles. The AIDS Support Organisation (TASO) was founded in Uganda in 1987. TASO’s work has included advocacy and community education, and also a wide variety of services to people living with HIV/AIDS and their families. Working closely with government, other nongovernmental and faith-based organizations and the private sector, TASO has been a leading contributor to Uganda’s HIV/AIDS control programme. In 1988, a group of African women created the Society for Women and AIDS in Africa (SWAA), to work with and for women and their families affected by the epidemic, based on locally defined concerns and priorities. Today, SWAA has become a continent-wide network, working in 40 countries (see Box 3.1).
Other women-led groups have had a powerful impact at country and local levels. Women Fighting AIDS in Kenya, for example, was founded in 1993 by a group of women in Nairobi, many of whom were HIV-positive. In addition to advocacy for women and children affected by the pandemic, the group offers a wide range of services to women and families, including HIV education, individual counselling and support, home-based care, and training in income-generating activities. From an early stage, faith-based organizations have assumed major responsibilities for activities connected with HIV prevention, community education, care, treatment and support (see Box 3.2).
