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People living with HIV/AIDS
People living with HIV/AIDS must be supported to respond to the epidemic
To download this policy statement as a PDF file, click here.
The International HIV/AIDS Alliance works with communities to prevent the spread of HIV,support and care for those infected and ease the impact of HIV on families and communities. The Alliance recognises and promotes the involvement of people living with HIV/AIDS (PLHA) as a central strategy to ensure stronger community responses to the epidemic and more appropriate public policy.
Since its establishment in 1993, the Alliance has provided both financial and technical support to over 1,500 HIV/AIDS projects and has worked with NGOs and CBOs from over 40 countries. The Alliance has supported the involvement of people living with HIV/AIDS (PLHA) on its own Board of Trustees, at its international secretariat in the United Kingdom and in its work with partner organisations in developing countries. This experience reveals that:
at risk of infection.
One of the basic conditions for promoting PLHA involvement is the training of those
involved, not only on basic or technical aspects of HIV/AIDS but also in issues of personal and organisational development.
The Alliance believes that the United Nations and its Member States should:
The Alliance’s contribution is and will continue to be:
Some reflections on experiences of involving people living with HIV/AIDS in NGO programmes in Ecuador:
"The first counselling I received was in hospital, and it was with an HIV positive person. He identified himself as such, and so…the first thing you do is say: "Well, if he is like that…and if he's had the virus so long…I can be like that too," says an HIV positive member of Siempre Vida, an NGO supported by Kimirina, the Alliance's linking organisation in Ecuador.
"Although I had learned about STDs and HIV prevention, actually meeting people living with HIV/AIDS made an enormous impression on me. Having the chance to talk to people living with HIV/AIDS helped me to realise that the disease is here in our community, that those affected are normal people just like me and my family,
and that they need our support. It gave me new energy and determination to continue our prevention work." An HIV negative women's activist working for another NGO partner of Kimirina.
"It's important for PLHA to have visibility in training workshops. We've created a consciousness in people through these types of workshops. People think AIDS isn't a problem in Ecuador, but when we're in a workshop and I tell people that I'm positive it's a surprise for them because they thought no-one here has AIDS. They can see we're here and that AIDS is real." Carlos Moyra, person living with hIV/AIDS, Amigos Por la Vida.
The International HIV/AIDS Alliance
mailto:mail@aidsalliance.org
www.aidsalliance.org
www.aidsmap.com
May 2001
To download this policy statement as a PDF file, click here.
The International HIV/AIDS Alliance works with communities to prevent the spread of HIV,support and care for those infected and ease the impact of HIV on families and communities. The Alliance recognises and promotes the involvement of people living with HIV/AIDS (PLHA) as a central strategy to ensure stronger community responses to the epidemic and more appropriate public policy.
Since its establishment in 1993, the Alliance has provided both financial and technical support to over 1,500 HIV/AIDS projects and has worked with NGOs and CBOs from over 40 countries. The Alliance has supported the involvement of people living with HIV/AIDS (PLHA) on its own Board of Trustees, at its international secretariat in the United Kingdom and in its work with partner organisations in developing countries. This experience reveals that:
- NGOs can be powerful agents of change in reducing stigma and discrimination through the provision of community care and support, facilitating awareness training, ensuring the inclusion of PLHA and promoting a non-discriminatory environment.
- At a community level, PLHA can contribute in many ways to the response to AIDS, including supporting and implementing activities and services, designing and planning programmes, policy making, and strategic thinking. PLHA initiated many of the earliest and most successful community responses to AIDS.
- PLHA who choose to be involved in the response to the epidemic report greater acceptance of being HIV positive, increased access to information and knowledge about HIV/AIDS and increased respect and recognition from others.
- NGOs and CBOs that involve PLHA in their activities and services report better quality care which responds more appropriately to the emotional needs and expectations of PLHA, more sensitive attention to gender issues and concerns about the needs of children of PLHA, and more appropriate prevention work focused on the real life circumstances and behaviours that put people
at risk of infection.
- When PLHA are involved in NGO and CBO responses, families and communities report improved perceptions of PLHA, decreased sense of isolation and stigma for the family and greater acceptance and understanding of HIV positive people.
One of the basic conditions for promoting PLHA involvement is the training of those
involved, not only on basic or technical aspects of HIV/AIDS but also in issues of personal and organisational development.
The Alliance believes that the United Nations and its Member States should:
- Explicitly reiterate their commitment to the greater involvement of people living with HIV/AIDS in their Declaration of Commitment to be issued as part of the United Nations General Assembly Special Session on AIDS in June 2001.
- Actively promote the involvement of PLHA in policy development, decision-making and service implementation at all levels as well as in the monitoring and evaluation of national plans.
- Promote the establishment of programmes that forthrightly address stigma and discrimination at all levels with particular attention to national programmes.
- Ensure the respect, protection and fulfilment of human rights including ending discriminatory policies such as restrictions on freedom of travel, medical benefits and employment for PLHA.
The Alliance’s contribution is and will continue to be:
- To strengthen PLHA leadership through developing the capacity of NGOs/CBOs, especially those run by PLHA.
- To develop community services with PLHA involvement, which are tailored according to PLHA needs. These include focused prevention with PLHA, voluntary testing and counselling programmes and home based care and support programmes.
- To facilitate PLHA representation at local, national and international level, including national and international meetings and consultations.
- To advocate for the rights of PLHA and the reduction of the stigma towards PLHA and their families.
Some reflections on experiences of involving people living with HIV/AIDS in NGO programmes in Ecuador:
"The first counselling I received was in hospital, and it was with an HIV positive person. He identified himself as such, and so…the first thing you do is say: "Well, if he is like that…and if he's had the virus so long…I can be like that too," says an HIV positive member of Siempre Vida, an NGO supported by Kimirina, the Alliance's linking organisation in Ecuador.
"Although I had learned about STDs and HIV prevention, actually meeting people living with HIV/AIDS made an enormous impression on me. Having the chance to talk to people living with HIV/AIDS helped me to realise that the disease is here in our community, that those affected are normal people just like me and my family,
and that they need our support. It gave me new energy and determination to continue our prevention work." An HIV negative women's activist working for another NGO partner of Kimirina.
"It's important for PLHA to have visibility in training workshops. We've created a consciousness in people through these types of workshops. People think AIDS isn't a problem in Ecuador, but when we're in a workshop and I tell people that I'm positive it's a surprise for them because they thought no-one here has AIDS. They can see we're here and that AIDS is real." Carlos Moyra, person living with hIV/AIDS, Amigos Por la Vida.
The International HIV/AIDS Alliance
mailto:mail@aidsalliance.org
www.aidsalliance.org
www.aidsmap.com
May 2001