Care and support for people living with HIV/AIDS

Report on the global HIV/AIDS epidemic – June 2000Greater involvement of people living with HIV/AIDS – the GIPA principleIf anything, the involvement of HIV-positive people has become even more visibleand credible since 1995. This is when the community stepped up pressure toincrease access to highly active antiretroviral therapy – in memory of those who hadnot survived long enough to benefit from it and out of solidarity with the millions whostill could not afford it.Already in 1994, the GIPA principle was formally enshrined in the Declaration signedby 42 nations at the Paris AIDS Summit. The signatory nations resolved to “supporta greater involvement of people living with HIV/AIDS through an initiative tostrengthen the capacity and coordination of networks of people living with HIV/AIDSand community-based organizations”.This resolution was prompted by recognition that these groups had played a leadershiprole in increasing society’s acceptance of those living with HIV, in reducingtheir peers’ infection rates, in mitigating the personal and social impact of the disease,and in fighting for their right to health care.Community standards for care and supportBecause community organizations play such an important role in care and supportfor people living with HIV, they and their clients have a stake in how health sectorresources are allocated and distributed. Since 1997 UNAIDS has advocated thatcommunities, alongside other stakeholders, should be involved in developing standardsfor HIV-related care and support. The goal of this working partnershipbetween health planners and the local community (defined as a group of peoplesharing the same geographic, cultural and economic environment) is to reach a consensuson meeting the needs and expectations of people with HIV that is perceivedas equitable and responsive to other equally important needs.The process of discussing expectations and arriving at a consensus involves informingthe participants about what support and resources the health system can potentiallyprovide, sounding out the preferences of the community and identifying itspotential for contributing to care.Attempts to formulate community standards for care and support have been completedwith some success in Burkina Faso, the Central African Republic, Malawi andin Phayao Province in northern Thailand. The process is not always easy; the inadequacyof knowledge about health care can be a limiting factor, for example.However, the approach has enormous potential. Formulating community standardsmakes it possible to identify the resources for care already available in the communityand to determine how they could be used to better effect through support fromthe formal health system. It also breaks the silence surrounding HIV and discouragesdiscrimination by sending the message that people with AIDS have a claim on solidarityand support.88