In-depth: The Treatment Era: ART in Africa
MOZAMBIQUE: People living with AIDS overlooked in response
Activist Honoria Pinto Folano advises patients at the Santo Egidio clinic on nutrition and positive living
MAPUTO, 6 December 2004 (IRIN In-Depth) - At a journalism course in Mozambique in 2001, it was hard to find an HIV-positive person to talk to the reporters, and he did so on condition of anonymity. Two years later there were 30 willing to talk, and they gave their names.
From a handful of courageous individuals who went public about their HIV status in 1999 in the capital, Maputo, there is now a nationwide network of 28 associations of people living with HIV and AIDS (PLWAs).
Yet stigma and discrimination persist. Ana Maria Muhai, a community activist with the Santo Egidio clinic at Machava on the outskirts of the capital, tells of sick neighbours who are too ashamed to seek help.
"They don't come out of their homes; they don't go to the clinic, and they die right there," she said.
Muhai, who is HIV positive, was frequently sick from 1998 until she started antiretroviral therapy (ART) in 2002. Her mother and the local schoolteacher helped, but street vendors, afraid of catching the virus, would not take money from her children.
"Stigma is a wall nobody can jump - people look at you like you are an alien," said Julio Mujojo, executive secretary of the National Network of Associations of People Living with HIV/AIDS (Rensida).
Rensida, set up in 2002, has roughly 1,000 members. As the representative of Mozambican PLWAs, it is a partner of the ministry of health, and about a dozen members have been trained and hired as counsellors.
The two largest providers of ART, Medecins Sans Frontieres-Switzerland and the Vatican-linked Santo Egidio, employ HIV-positive activists from the community to identify, support and monitor patients on treatment, and encourage positive living.
"Local people understand the mentality and the culture," explained Gabriella Bortolot, a coordinator at Santo Egidio.
But the evidence from other African countries suggests a lot more could be done by PLWAs in Mozambique. It is widely recognised that HIV-positive people are key to containing the epidemic and caring for those infected.
The greater involvement of people living with HIV/AIDS in anti-AIDS efforts, also known as the GIPA principle, was endorsed by 42 countries at the 1994 AIDS summit in Paris, and reinforced by the United Nations Declaration of Commitment on HIV/AIDS in 2001.
UNAIDS charts the extent of GIPA in a six-tier pyramid that ranks, in ascending order, target audiences or beneficiaries, contributors, speakers, implementers, experts and, at the top, decision-makers. Analysts put Rensida's involvement at the middle level of the pyramid, among the speakers and implementers.
"We attend meetings, we listen more than we speak, and we have little influence," said Arlindo Fernandes, a founding member of Kindlimuka, the first association of PLWAs, which now has 370 members.
Elsewhere in Africa, people living with AIDS are central to the national AIDS response.
In Botswana, the Coping Centre for People Living with HIV/AIDS (Cocepwa) trains members as 'treatment buddies', who help others on antiretroviral drugs with disclosure and adherence. Counselling centres and hospitals refer HIV-positive people to Cocepwa.
In Zambia, teams from the national network of HIV-positive people run workshops on positive living and human rights for groups of PLWAs.
In Burundi, between 1999 and 2000, HIV-positive associations successfully lobbied the government to remove taxes on AIDS drugs, allow the import of generics, and set up a national fund to subsidise treatment through the healthcare schemes of public servants and the armed forces.
When PLWAs become partners in their own treatment, and informed users of healthcare, they develop valuable expertise that can complement that of professionals in their communities.
"Where others handle with fear, we handle with care," explained Musisi Josephus Gavah, an HIV-positive activist in Jinja, Uganda.
Public visibility of people with AIDS has marked a turning point in controlling the epidemic. Their testimonies have been a powerful way to make AIDS real, lend credibility to prevention messages, and turn denial into action.
Because of stigma, very few middle-class, let alone prominent, Mozambicans have come out in public. This hampers the ability of Rensida to be a strong actor, lobbyist and watchdog.
However, through workshops and exchange visits, the Brazilian-funded project 'Npwanano' (integration, in the Shangaan language), is strengthening the lobbying skills of Rensida activists, and expanding not only their knowledge of human rights, but also the science, economics and politics of AIDS.
"We have lots of experience in NGO participation in policy-making, lobbying, and supporting the 145,000 patients on ART in the public sector," said Brazilian project coordinator Fernando Sessner.
Rensida needs such skills to claim its rightful space at the decision-making level.