In-depth: The Treatment Era: ART in Africa
UGANDA: PLWAs at the centre of AIDS response
Photo: IRIN
People living with AIDS have a 17-year history of activism in Uganda
KAMPALA, 6 December 2004 (IRIN In-Depth) - Lydia Mungherere speaks with passion about the need for antiretrovirals (ARVs), not only because she is a doctor - the first in Uganda to disclose being HIV positive - but also because she would be dead today if it weren't for the drugs.
In 1999, sick and unconscious, Mungherere was flown home from South Africa where she was working. ARVs pulled her back from the brink of death.
Today Mungherere is a representative of the National Forum of Networks of People Living with HIV/AIDS in Uganda, lobbying MPs and government officials to bring the perspective of people living with the disease into policy issues.
For example, in 2002, when the Uganda AIDS Commission was drafting a national policy on antiretroviral therapy (ART), it asked key stakeholders to review the draft. Among them were people living with HIV/AIDS (PLWAs).
At the time, some 10,000 Ugandans were on ART. The target is to have 60,000 by the end of 2005.
"We made the government realise that to do community mobilisation around treatment, you need us, people with AIDS, to talk to people, to help them with disclosure and treatment compliance," recalled Mungherere.
Because of their lobbying, the policy put PLWAs at the centre of community mobilisation and advocacy around ART. Today, as Uganda scales up treatment, the ministry of health has the Forum as its partner to help people access and adhere to treatment.
Uganda is perhaps the only African country where HIV-positive activists operate at such a high decision-making level in the structures that shape AIDS policy. "It is revolutionary to have people with AIDS at the same level as other stakeholders," said Inge Tack, UNAIDS technical adviser in the capital, Kampala.
This is not surprising - the movement of people living with AIDS in Uganda has a 17-year history of collective organisation and effective activism.
In the late 1980s, when AIDS was taboo in other African countries, several prominent Ugandans disclosed their status in public: a popular musician, an army major and an Anglican priest were among the first. Their testimonies, and those of hundreds of lesser-known Ugandans, helped reduce stigma and discrimination.
Uniquely, Uganda has reversed its AIDS epidemic. HIV prevalence among its 24 million people - over 20 percent in 1992 - has dropped to 6 percent, according to UNAIDS.
Uganda's success is credited to its early, bold and homegrown response; strong and sustained political leadership; openness about the problem; a multisectoral approach, and, crucially, the involvement of many actors.
"The government mobilised a lot of players and created an enabling environment for them to operate," said Dr Alex Coutinho, executive secretary of The AIDS Support Organisation (TASO), which, to date, has helped 60,000 PLWAs and their families.
TASO, the first indigenous African group formed by people infected and affected, was set up in 1987, a year after the end of Uganda's brutal civil war. TASO broke new ground in counselling, medical care, social support, training of counsellors, community workers and care providers, advocacy and networking. Its approach has been replicated within and outside the country.
Other PLWA organisations followed, each empowering a different constituency: women, youth, rural and urban, Muslims and Christians. Many of these groups became pivotal players in the national response and role models for similar groups throughout Africa.
As the networks of people living with AIDS multiplied, their ability to reach communities became crucial, especially when Uganda decentralised its AIDS response in 1997. Today, at district AIDS task forces and committees, local activists act as advocates, watchdogs and community liaison.
The associations nurtured a significant number of HIV-positive activists, knowledgeable about the evolving science, economics and politics of AIDS, which enabled them to work on all sides of the spectrum: engaging with experts and authorities on policy issues, and with ordinary people in prevention, behaviour change, care, treatment and rights.
One thing was missing, though - a national network. Rivalry, notably between the National Guidance and Empowerment Network (NGEN+) and the National Community of Women Living with HIV/AIDS in Uganda (NACWOLA) thwarted attempts at forming a national organisation.
"The scramble for resources led to fragmentation and competition," Major Rubamira Ruranga, head of NGEN+, told PlusNews.
In 2001 the Uganda AIDS Commission (UAC) restructured the response and placed PLWAs in a position to influence policy. The new structure, known as the AIDS Partnership, allowed members to find common positions and elect representatives to interact with UAC.
In May 2003, delegates from 50 main groups founded the Forum. Today it includes 800 associations, from big, professional NGOs to small village support groups.
"The Forum is the channel for our voices to come through - now we have representation at district, county and parish level," explained Augustine Kishangeaki, coordinator of the Bushenyi District Network of HIV+ People (BUDNET+) in Western Uganda.
The Forum operates at many levels: people like Dr Mungherere work the corridors of power; others in far-flung communities, like Bushenyi, do prevention and treatment literacy, and care for orphans and the sick; Forum representatives sit on local district AIDS Committees and can influence planning and channel funds to PLWA groups.
For example, in its first year, BUDNET+ accessed funds through the district to rent an office and acquire a computer, printer and motorbike. The network offers counselling on positive living and treatment adherence; AIDS prevention through drama and music; home-based care; and training in goat and pig raising, beekeeping and kitchen gardens for income-generation.
Uganda has realised that the scale of activity needed to fight AIDS is too vast for government alone, and PLWA activists are an asset to the national response.