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Living with HIV/AIDS - Yes! It is possible!
HDN Key Correspondent. 15 June 2005. A posting from Af-AIDS ([email protected])
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At a satellite meeting held at the 2nd South African AIDS conference, a small but committed group of delegates discussed some of the most personal and heartfelt aspects of living with HIV/AIDS in African nations.
The satellite meeting was held to debate the recently launched AIDS-Care-Watch (ACW) campaign, a civil society initiative focusing on the need to keep people alive until antiretroviral drugs (ARVs) become available - which in some areas may take up to 5 years or more.
The opening speaker, Dr Ian Hodgson from Health and Development Networks (HDN), a partner organisation to the campaign, highlighted the campaign's main premise: Many people are dying unnecessarily as they wait for ARV programmes to deliver on their promise - as a result of inadequate access to comprehensive care services, incidence of preventable and/or treatable conditions including tuberculosis (TB), and a general lack of literacy on health-related issues and needs.
The ACW campaign is advocating immediate provision of a comprehensive package of AIDS care services aimed at reducing the number of preventable HIV/AIDS-related deaths, particularly in regions where ARV delivery is slow, or so far non-existent.
The remaining speakers discussed the realities of living with HIV, and pinpointed what, in their experience, is important for helping people living with HIV/AIDS (PWHA) improve the quality of their lives. The group shared a number of common life experiences that emphasised how a more holistic approach to HIV care must be adopted; especially in an individual's 'window' between confirmation that ARVs are required and getting access to them.
Anne Namwamba-Ntombela, of the International Community of Women with AIDS (ICW) and based in South Africa, began by describing the pain of stigma and discrimination she experienced when she went public about her HIV status in1996. She was desperate at that time for someone to say 'It's OK', and it was the quality of social support - from her family in particular - that helped her through this difficult period. It was only when she started to take control of her life that she felt truly able to begin to deal with the virus and her care needs. She emphasised the need for PWHAs to 'find a purpose', and be empowered in order to deal with the realities of living with HIV. This latter point was especially potent for Ms Namwamba-Ntombela when, in the late 1990s, she experienced a severe fungal infection, and had to battle to gain access to fluconazole - a drug that should be more readily available to PWHAs everywhere.
Ms Namwamba-Ntombela also stressed the need to ensure psychological health is maintained - controlling harmful levels of stress, for example, can be hugely beneficial for PWHA. This factor also linked to the contribution from David Mukasa of the Ugandan Red Cross, and his consideration of HIV-related stigma.
A major cause of concern and anxiety for the affected person, HIV-related stigma is covered extensively during this conference, and is also a central concern of the AIDS-Care-Watch campaign.
Mr Mukasa's call for PWHAs to be closely involved in all aspects of policy and advocacy, because 'they know where it hurts most' was allied to stigma in both a personal and a theoretical way. He described the detrimental effect of stigma on uptake of voluntary counseling and testing (VCT) services, and the stigma many PHWAs experience in the health care sector.
Mr Mukasa emphasised the need to close the 'information gap' he believes is one of the main causes of HIV-stigma, especially increasing HIV/AIDS literacy of health care workers, who often stigmatise PWHAs as a result of their own ignorance and unfounded fears. This must be addressed urgently, he concluded, "if we are to survive the wait for ARVs and access the care services that are available in the meantime."
The final speaker, Busi Maqungo, an HIV Health Promoter based in South Africa, spoke passionately of how support groups can be of great benefit for PWHAs. She described how she reached a point where she "had to come out", and it was only by talking to people that she became more able to cope with her HIV status.
She is especially concerned with peoples' reluctance to reveal their status - "if people don't come out, how can a support group be formed?" Despite some of the unique tragedies in Ms Maqungo's own life, her current hope for the future - which came across loud and clear in her presentation - clearly touched other participants in the session, who were given a remarkable insight into how living with HIV can be just that: living.
The discussion that followed was rich and revealing - participants were clearly moved by what the speakers and other delegates had to say, especially the fact that they felt able to share details of their HIV status so openly. Many questions and comments were forthcoming, and it was only when the security guards began glowering from the door - all other events had finished for the evening - that it closed.
The session conveyed a widespread, but often denied, reality: While we wait for ARV programmes to deliver on their promise, improvements in other care services - that would help many PWHAs to discover their HIV status, come to a stage of acceptance, and seek out other life-saving treatments - are also being denied to many who would clearly benefit from them.
The presentations provided a glimpse of some of the interventions that must be part of a comprehensive package of HIV/AIDS care, including the enhancement of psychological and social support, access to treatment for opportunistic infections, and a more robust approach to stigma reduction - all of which can directly improve the quality of life for PWHAs.
For more information about the AIDS-Care-Watch Campaign, or to become a campaign partner, go to: www.aidscarewatch.org |
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