In-depth: The Treatment Era: ART in Africa
SOUTH AFRICA: Lusikisiki - a new model for ARV delivery
Through the Lusikisiki treatment programme, Anoria Samka tells others how her health has improved since taking ARVs
JOHANNESBURG, 6 December 2004 (IRIN In-Depth) - When Anoria Samka's brothers discovered she was HIV positive, they shunned her. But now, when she tells her community that the drugs she takes can stem the progress of the disease, no one ridicules her and no one turns her out. Instead, they listen.
Addressing a hundred men, women and children at the Bodweni clinic in rural South Africa, Samka says she was very weak before beginning antiretroviral (ARV) treatment in February 2004. Her CD4 count - a measure of the immune system's strength - was only 158. The audience nods solemnly. Many are wearing T-shirts that say: 'HIV positive', and are already aware that a CD4 level below 200 means a patient is at risk of serious opportunistic infections and death.
After receiving ARV treatment for 10 months, Samka says, she is strong and healthy again. "Today, my CD4 count is 421."
Applause and cheers of support erupt from the audience. Then a woman stands up and spontaneously begins the first words of a song, and soon dozens of people join in the traditional melody whose modern lyrics call attention to the epidemic: "It is terrible because we are dying of AIDS."
The gathering, part of the Bodweni clinic's campaign to promote voluntary counselling and treatment, took place amid the green hills of South Africa's Eastern Cape province, dozens of kilometres from the nearest hospital. Here, in the remote town of Lusikisiki, Samka is one of hundreds of people being treated for HIV, in what has been celebrated as a new model for ARV delivery in resource-limited rural areas.
Launched in October 2003, the programme was designed by Medecins Sans Frontieres (MSF), a humanitarian medical organisation, and implemented in partnership with the local department of health. Unlike many ARV distribution programmes, which tend to be centralised at hospitals, this system delivers most of its services via a network of 11 clinics spread across the countryside.
"The model was to deliver ARVs as close as possible to the home, not to require patients travel to a hospital in a city," says Dr Hermann Reuter, MSF's project coordinator at Lusikisiki.
So far, the Lusikisiki programme has exceeded enrolment expectations, starting a total of 442 residents on ARV treatment in its first year of operation, ahead of its original target of 300. While this is still shy of the roughly 1,500 people that MSF estimates are in immediate need of treatment in the area, the community-based approach could prove to be a successful model for delivering ARVs in poor, underdeveloped communities throughout sub-Saharan Africa.
As in much of the continent, the public health system in South Africa is already debilitated by a significant shortage of resources and medical staff. The Lusikisiki programme is no different: staff say the programme could use an infusion of additional resources, including a car to transport patients, and another 50 nurses.
The novelty of the Lusikisiki approach is that it depends on community members to orchestrate the peer counselling and weekly support groups that are the backbone of the programme. At the heart of the model are dozens of volunteers, often HIV positive themselves, who have been trained by their support group.
These volunteers publicly declare their HIV status and attempt to educate community members about HIV prevention, testing, nutrition, and treatment. Reuter believes they are a fundamental reason for the programme's success: "The project is working because of the non-professional staff."
While there is a risk of burnout, many volunteer community health workers are motivated to act because they are living with HIV, and can see the visible improvement of those on ARVs.
"This epidemic is so big, and so many families are affected, people see that they are doing it for the community," Reuter said. "And the model that we are implementing - it's not just a medical model; it's a model for human rights, and ARVs as a part of human rights."
Dr Eric Goemaere, the head of MSF in South Africa, says the agency began the programme in Lusikisiki to build on its experience of delivering ARVs in Kayelitsha township near Cape Town. The Lusikisiki initiative was an effort to transfer the successes of its programme in a resource-limited urban environment to a resource-limited rural setting.
"We went to the most underdeveloped, most remote part of South Africa - Lusikisiki," said Goemaere. "If it works in Lusikisiki, it can work anywhere in South Africa."
Goemaere says the Lusikisiki programme, funded in part by the Nelson Mandela Foundation, expanded "much faster" than MSF originally anticipated and now services between 30 percent and 40 percent of all publicly funded ARV cases in the entire Eastern Cape province.
"People are rushing for treatment," he says. "What Lusikisiki tells us is that when service is available, even in the most remote area, people are queuing for it."
Sarah Mahlangeni, the only professional nurse at the Bodweni clinic, agrees: 23 of the clinic's 340 patients, known to be HIV positive, are currently receiving treatment, and there has been a significant change since the facility began dispensing ARVs in February 2004. Scores of people are now voluntarily requesting to be tested so they can begin treatment as soon as it becomes necessary.
A public demand for testing and treatment is notable in South Africa, where stigma against HIV/AIDS often hampers efforts to educate and treat the more than one in five adults estimated to have the virus. In many communities people say they do not publicly declare their HIV-positive status because they are afraid of being shunned by friends and family.
Nosipho Sivela, an ARV counsellor at the Bodweni clinic, says stigma regarding HIV/AIDS has been largely eradicated in the surrounding rural area because those on ARVs regularly stand up in front of others and explain how their health has improved with treatment.
"It's because they trust the ARVs," Sivela says. "They believe that if they know their status, they know how to live with their HIV. It makes them confident because they know that they'll stay alive for a long time."
For Samka, who was abandoned by her brothers when they found out she was HIV positive, the sense of belonging is the most important part of her treatment. Four times a month she makes the 90-minute walk from her village of Mxokozweni to receive her medication and attend a support group, which she calls her "favourite thing" about being involved with the clinic.
"The support group taught me that now I can educate people about HIV anywhere," she says. "Now, I'm a living example. When I talk, I can share things that I've experienced."