The story of bringing HIV treatment to Lusikisiki is about overcoming resource limitations through community empowerment and involvement. It's an example of the role communities can play in responding to epidemics.
Lusikisiki is a rural Eastern Cape town in the Ingquza Hill Local Municipality, formerly Qaukeni. The municipality takes its name from the Ngquza Hill massacre on 6 June 1960, in which apartheid security forces killed 11 people and wounded dozens more. Later, judges sentenced more than 20 people to death. AmaMpondo had met on the hill to discuss their resistance to the Bantu Authorities Act of 1951.
As with other towns on the R61, which links the KwaZulu-Natal coast with Mthatha in the Eastern Cape, the presence of large supermarkets, hardware stores and popular takeaway franchises gives the impression that Lusikisiki is more developed than it is. But nearly all the roads leading from the R61 become dirt roads to deep rural areas.
The municipality was one of the 10 poorest in the country in 2003, with more than 80% of the population living below the poverty line.
We are living here
Doctors Without Borders (MSF) and the Nelson Mandela Foundation started their project, Siyaphila La (We are living here), in Lusikisiki in February 2003. Its aim was to provide HIV treatment, including antiretroviral (ARV) treatment, in each of Lusikisiki's 12 clinics.
Traditionally, doctors would start patients on ARVs and nurses would perform HIV tests and monitor their adherence. But MSF opted for a decentralised model. Hermann Reuter, the doctor who ran the project in Lusikisiki, went from clinic to clinic. Nurses treated conditions typically associated with HIV, while community health workers performed the HIV tests. And the project created a new role, that of adherence counsellor, to monitor that patients were keeping to the treatment.
The success of the project depended on whether or not the communities were prepared. Because of the lifelong nature of ARV treatment, education was necessary. MSF and the Treatment Action Campaign (TAC) ran large-scale treatment literacy campaigns before the first ARVs were prescribed.
Reuter said it was important that residents understood the medical aspects of HIV care, as opposed to leaving the knowledge with healthcare providers.
"What I liked about MSF and TAC was that they did not only train doctors and nurses, they also trained community members," said Noloyiso Ntamenthlo, TAC's Eastern Cape manager.
Ntamenthlo encountered MSF and the TAC at St Elizabeth Hospital in Lusikisiki in early 2003, where they were holding a training session on HIV. She joined the session and stayed for the day. She became a TAC member, opened a TAC branch in her village and got involved in treatment literacy training. From then on, Ntamenthlo and her TAC colleagues travelled to the villages around Lusikisiki, sometimes staying for a week getting to know the people in order to run successful training.
"The very difficult part was going door to door. In the rural areas, it's not like in the [township] where you can take the loud-hailer and talk. In the rural areas, you have to go inside, and also you have to do the education and allow them to ask questions," said Ntamenthlo.
To start ARV treatment, the patient needed to know the names of the ARVs as well as their effects and side-effects by heart. Teaching these to people who could not read and write was a challenge. Ntamenthlo laughs when she thinks back to "those difficult names".
The backbone of the programme
Because of the limited supply of ARVs, they were prescribed only to extremely sick patients. Not maintaining good adherence was critical as withdrawing from the programme could have been fatal.
MSF and TAC trained laypeople, some of whom were already community volunteers, to be adherence counsellors. They ensured that people who had started taking ARVs continued to take them regularly. These counsellors could be thought of as medicalised community health workers who were also activists. Each clinic would have at least one of them.
Being based in the clinics, they worked closely with the nurses but also advocated for medical care on behalf of patients. Reuter called them the backbone of the programme.
The treatment literacy practitioners were from the areas in which they worked, giving them insight that the adherence counsellors did not have. The counsellors worked closely with them to understand the barriers to adherence in certain communities.
In reality, the role they played extended beyond HIV. "They went into the communities and stopped domestic violence. Community meetings, which were for men only, suddenly included women," said Reuter.
Sithembiso Mabasa, an adherence counsellor in Magwa, organised a testing day and invited the residents of a neighbouring village. He used the turnout to advocate for a clinic for the neighbouring village and the Department of Health agreed to build it.
The system worked well and by the time the project ended, 2 200 people were on ARV treatment.
No home for adherence counsellors
When MSF handed the project to the Department of Health in 2006, Reuter hoped the TAC would take over employment of the adherence counsellors. But that did not happen. Instead, MSF started a new organisation called the HIV/Aids Adherence Counsellors Organisation (Haaco) to keep them employed. Haaco lasted for six years. Adherence counsellors no longer exist in Lusikisiki.
Eighteen years after Nelson Mandela handed Akhona Ntsaluba her first ARVs at the launch of Siyaphila La, she says the lack of adherence counsellors in Lusikisiki is negatively affecting the quality of care that HIV-positive people receive.
Ntsaluba, who works on a TAC programme that monitors clinics in the district, has seen an increase in people not taking their medication because of gaps in their knowledge about the treatment. "People will say, 'I was taking white pills but when I went back, they gave me blue pills. So, I didn't take them.' And when you visit them, you find the containers closed, because the colour is different from the one that the person knows," she said.
"I understand we've got community health workers, but we need adherence counsellors. A [counsellor] sitting with the person, making a person understand treatment, giving counselling to the person, ongoing counselling. That is what is needed."
Nomini Mabena, a former adherence counsellor, now works as a community health worker. Her job is to deliver ARVs to support groups of HIV-positive people across Lusikisiki. Once in a while, nurses who know about her knowledge of HIV ask her for help in determining when patients are eligible to join those support groups as opposed to waiting in long lines in clinics for their ARVs. Twenty years later, she is still an integral part of the health system.
Lusikisiki and Covid-19
South Africa's national Covid-19 vaccine rollout began on 17 May, but the vaccination of Lusikisiki's elderly has yet to begin. According to Ntamenthlo, there have been no campaigns aimed at educating residents about Covid-19 and vaccines for the virus.
Ntsaluba said a lot of work is needed to get communities in the area to buy into the idea of a vaccine. "We can have vaccines, but if people do not understand, if people still believe in the myths that are going around, then it will be a struggle," she said.
"Some people say the nurses get higher pay because of treating people with Covid-19. And then because of that, they may infect you with the disease ... So we don't trust hospitals, especially the public hospital," said Lennox, a Lusikisiki resident.
When the Siyaphila La programme was running, people believed similar myths about Reuter. In Jonny Steinberg's book, Three Letter Plague, set in Lusikisiki, he says people thought Reuter was injecting people with HIV when they went to get tested.
The key difference was that during Siyaphila La, Lusikisiki had treatment literacy practitioners and adherence counsellors educating communities and combating scepticism and stigma. Today, they have nothing.
This project was funded by the National Geographic Society.