African conference looks at living with AIDS at home

Taking as its theme “More Care for Better Living”, the 6th Home and Community Care Conference in Dakar last week highlighted the need for a far stronger, more well-rounded approach to the needs and problems of People Living with HIV-AIDS. While conference organisers made it clear that that prevention remained the mainstay of the global response to HIV-AIDS, delegates stressed repeatedly that those affected by the virus needed access to proper care and medication. The message from the Senegalese capital was clear: “Better Living” meant governments providing affordable anti-retroviral therapy to those who needed it, while families and communities needed to do a lot more to end the stigmatisation and marginalisation of people living with AIDS. It was made clear that those most affected by HIV-AIDS should be at the centre of treatment and prevention campaigns. Jeanne Kouamé, a veteran AIDS campaigner from Cote d'Ivoire who forms part of the Home and Community Care's organising network, warned that international donors had shown a tendency to focus only on prevention, ignoring issues like the basic welfare of people living with HIV-AIDS. A recurring theme at Dakar was the need to build a bridge between home, hospital and community. Kouamé stressed the need for relatives to take the lead in helping family members diagnosed as HIV-positive. “The family must be the first source for any response from the community, because it is the family which can feed and take care of the sick,” he argued. But the workshops and discussions went further. Using dozens of abstracts, from Latvia to Lesotho and Thailand to Togo, delegates discussed issues like end-of-life care, the role of traditional healers, the use of massage and aromatherapy, food needs, income-generating activities, the psychosocial needs of children and care for care givers. There was also a strong focus on the problems of gaining access to drugs-users and dealing with HIV-AIDS in the context of prisons and other institutions. African countries have hosted numerous conferences on the pandemic in recent years, but this was the first Home and Community Care event to take place in sub-Saharan Africa. The UN World Health Organisations (WHO) estimates there are around 30 million adults and children in Africa living with HIV-AIDS. These account for 75 per cent of its global estimate of 40 million people infected with the virus. In its AIDS epidemic update, released in November, the WHO warned: “The epidemic in sub-Saharan Africa….remains rampant. How long it will stay like this will depend on the vigour, scale and effectiveness of prevention, treatment and care programmes.” The same report noted that, with some exceptions, like Botswana and Uganda, “antiretroviral treatment coverage remains dismal in sub-Saharan Africa overall”. The Dakar conference offered the WHO another opportunity to publicise its “three-by-five initiative.” It aims to provide antiretroviral therapy to three million people living in poor countries by the year 2005. At present, the WHO believes only 400,000 people have access to anti-retroviral drugs which can extend the lives and improve the health of people living with AIDS, but cannot cure them. Less than 100,000 of those benefitting from this still expensive treatment are in Sub-Saharan Africa. Senegalese President Abdoulaye Wade, the only African head of state to attend the conference, said anti-retroviral medication, which is already heavily subsidised in Senegal, would be available free of charge to all who needed it January 2004 onwards. Estimates vary, but Senegal is thought to have around 100,000 people infected with HIV. A special anti-retroviral treatment initiative was introduced by Senegal in 1998 and UN agencies have since worked with leading drugs companies to keep prices low. Wade urged his African counterparts to respond more vigorously to the HIV-AIDS challenge, arguing that “lack of access to antiretroviral drugs should be a thing of the past by 2010”. WHO has described Three by Five as “a plan of action by a broad alliance of nations, institutions and committed people, including those living with HIV/AIDs”. It says the initiative will not just require additional funding of around $5.5 billion, but also far better medical services to deliver therapy. While the global AIDS Medicines and Diagnostics Service is mandated to ensure poor countries get better access to quality medicines at affordable prices, WHO is also pushing for the recruitment of tens of thousands of community health workers, highlighting the need for drugs to be administered safely and patients to be properly monitored. WHO’s own teaching materials on HIV-AIDS include a basic guide to looking after people living with HIV/AIDS in the home, focusing on hygiene, proper feeding and all-round care. African NGOs and health organisations involved in the distribution of anti-retrovirals admitted their work was often handicapped by transport problems and a lack of resources. The drugs are often only available for sale in big cities such as Dakar, Abidjan and Nairobi, leaving rural populations abandoned. There were also difficulties in establishing a universal model for home-based care, particularly if those being treated were living in conflict zones, refugee camps or slum areas unfit for normal care and recuperation. The Dakar conference drew over 2,000 delegates from across the globe, many of them people living with HIV/AIDS. The need to fight stigmatisation was a theme taken up repeatedly. An Indian naval officer described the hostility and discrimination he had faced from the naval authorities once he had disclosed his HIV-status, but explained how he had subsequently found a new role campaigning on HIV issues. He said India had close to five million people living with HIV/AIDS, but 95 per cent of them did not know they were infected. AIDS campaigners from across Africa offered similar stories, but also examples of how to tackle prejudice head-on. For example, in Burundi, bank workers at the Bank of the Republic of Burundi (BRB) had challenged their employer’s attitude of complete indifference to HIV-AIDS and had set up a cell of activists inside the bank. With the BRB’s support, there is now a fund for the purchase of anti-retroviral drugs, while fringe business activities, including a hair dressing salon, bring in extra revenues. Fifteen bank employees living with HIV/AIDS have been helped with treatment. Richard Serukuuma from Uganda was diagnosed as HIV-positive in 1986. He is now involved with the Positive Men’s Union (POMU), a Ugandan organisation founded 10 years ago which has tried to bring together to tackle their problems and engage more actively in care, support and prevention programmes. Acknowledging the progress made in Uganda over the past 15 years in prevention and treatment campaigns, Serekumma praised both the frankness and of President Yoweri Museveni and the courage and commitment of the many Ugandans living with HIV/AIDS. “We are the ones who are meant to come out and tell others about ourselves”, Serukuuma told IRIN. “Because unless I myself tell you how I feel and what I want, I don’t think you would know.” POMU has worked with the media, trying, with some success to change the vocabulary of journalists and eliminate descriptions of people living with HIV/AIDS as “victims” or “Aids-carriers.” POMU also supports the writing of ‘Memory Books,’ left behind by people with HIV/AIDS for their children, containing accounts of personal experiences, family history and advice.