Africa, Development & Aid, Headlines, Health

HEALTH-UGANDA: HIV-Positive Movers and Shakers

Mercedes Sayagues

KAMPALA, Oct 4 2004 (IPS) - The fragrance of ginger and paw paws from market stalls floats into the tiny room where Musisi Josephus Gavah shows visitors a thick ledger – the register of members of the Mukono District Network of People Living with HIV/AIDS.

The 650 members of the network (which is also referred to as ‘Mudinet’) are organised into support groups in 16 of the 28 sub-counties of the district – which is located in south-eastern Uganda, close to the capital, Kampala. Gavah is the coordinator of Mudinet.

Much has been said about Uganda’s success in the fight against AIDS – and the extent to which this can be ascribed to the open and unembarrassed stance on HIV adopted by its government.

However, the involvement of people who have already contracted the HI-virus has also been crucial to the anti-AIDS effort. HIV prevalence among Uganda’s population of almost 25 million has dropped from over 20 percent in 1992, to about 6 percent – this according to the Joint United Nations Programme on HIV/AIDS (UNAIDS).

In the case of the ten-year-old Mudinet, for example, members attend workshops on AIDS prevention, human rights – and ways in which they can continue to lead fulfilling lives. Thanks to the network, thirty groups have obtained funds for income-generating projects.

Mudinet activists hand out condoms – and distribute school uniforms, other clothes and bedding to orphans. In addition, they assist with malaria control in villages, handing out mosquito nets.

Uganda is also home to the first non-governmental organisation (NGO) formed by Africans to address the needs of those infected and affected by AIDS.

The AIDS Support Organisation (TASO), set up in 1987, has now established branches in various parts of Uganda to provide a variety of services. These include the dispensing of anti-retroviral treatment (ART).

The importance of the contribution made by HIV-positive persons has been acknowledged by the Uganda AIDS Commission (UAC), established by government in 1992 to coordinate the national response to the HIV pandemic.

Between 2001 and 2002, the commission reviewed Uganda’s AIDS strategy, placing HIV-positive people in positions where they could influence AIDS policies. Inge Tack, UNAIDS technical adviser in Kampala, calls this approach "revolutionary".

UNAIDS country programme adviser Ruben del Prado agrees: "It’s very exciting to see people with AIDS maximizing their presence at the top."

Last year, Mudinet joined forces with about 800 similar networks and associations to form the National Forum of People Living with HIV/AIDS Networks.

Previous attempts to set up an umbrella organisation had failed due to rivalries between AIDS associations and their leaders – particularly the National Guidance and Empowerment Network (NGEN+) and the National Community of Women Living with HIV/AIDS in Uganda (NACWOLA).

"The scramble for resources led to fragmentation and competition," says Rubamira Ruranga, head of NGEN+.

Ruranga, who tested positive in 1989, was one of the first Ugandans to declare publicly that he had contracted the virus – along with a popular musician and an Anglican priest.

Adds Richard Serunkuuma, of the Positive Men’s Union: "We were disorganised and contradicted ourselves. Our messages were not getting across clearly. But if we act together, we carry more weight."

The process of reconciling differences was given a helping hand by the UAC during its 2001/2002 review, which resulted in a strategy dubbed the ‘AIDS Partnership’.

Under this plan, each of a dozen sectors that play a key role in fighting AIDS – ministries, donors, NGOs, churches and the like – had to find common positions on their approach to the pandemic. The sectors were also required to elect representatives to interact with the AIDS Partnership.

As a result, Uganda’s many associations of HIV-positive people were obliged to develop a joint plan on combating HIV and dealing with its consequences – a process that took a year of meetings, retreats and discussions. UNAIDS provided 17,000 dollars to finance the discussions, and in May 2003 the National Forum of People Living with HIV/AIDS Networks was born.

"The forum will help us avoid duplication and coordinate services and lobbying," says NACWOLA’s Annete Biyetega.

Forum representatives advise the UAC on policy, implementation and funding proposals submitted to international donors. They are also trained in leadership skills and resource management.

"We want a strategic move into policy. No more staying in the background," says Flavia Kyomukama, from the AIDS telephone hotline – SALT.

The next step is for the forum to become a formal partner of the Ministry of Health in the provision of ART.

At present, about 25,000 Ugandans are receiving this medication. Officials plan to have 60,000 people – or about half of those in need – on ART by the end of 2005.

People living with AIDS, some of whom have years of ART experience, can help patients and their families understand what treatment entails – and the importance of sticking to it. This is especially valuable in districts where health facilities and personnel are scarce.

"When we deal with people with AIDS, we handle with care," says Gavah. "Others handle with fear."

His eyes fill with tears as he recalls the treatment his late wife received at a local hospital. She had acute herpes zoster, a condition more commonly known as shingles. This causes someone to development a painful rash, followed by blisters.

"The staff ignored her, talking about her in English without realising she was a teacher, giving her jabs without explaining why," says Gavah, adding "No patient should be treated like this."

A burly man with an easy smile and a chronic dry cough, Gavah discovered he was HIV-positive in 1992 when he applied for teacher training in Libya. "AIDS is like a pregnancy; you can’t hide it for long," he notes. "I went public because I wanted to do something for my district. So did my wife."

The couple had one child and fostered 10 orphans. When AIDS-related illnesses set in, Gavah left his job and opened a private nursery school. Among the 160 pupils, 40 are orphans who attend for free.

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