Doctors, nurses, activists and policy makers have all been vital to Africa's HIV programmes, but supporting them every step of the way has been an army of dedicated community health workers and volunteers who care for people living with the virus.
"I had a patient who was delirious and she bit me. She was HIV-positive, and she could have infected me if I was not already HIV-positive. It was terrifying," recalled Thab'sile Ndlovu, a community care volunteer who assists people living with HIV in a rural area near Siphofaneni, in central Swaziland. “That was the day before I was chased by a bull when I was doing my rounds in the area, and it was a week after I was bitten by a dog at a homestead.”
The continent's community caregivers do more than check in on patients to see if they have sufficient supplies of antiretroviral (ARV) drugs, which suppress the virus . Caroline Makhongo, a community health worker in Samia, a rural district in western Kenya, says her days involve visiting and caring for sick neighbours, helping patients get to the hospital, giving talks at the local health centre and following up on patients who have missed regular visits to the health centre.
"It is something you do because you want to help," said Makhongo. “Without [community health workers], many people would die of HIV as a result of failing to finish their treatment or even fewer people would be taking family planning services, but we help explain these things to them and you see improvement."
World Humanitarian Day, on 19 August, recognizes the contributions of humanitarian workers like Ndlovu and Makhongo, who often make enormous personal sacrifices in their service to others.
Plugging a gap
Swaziland's deepening financial crisis has taken its toll on the healthcare system, with nurses embarking on intermittent strikes to protest unsafe working conditions and low pay. As the public health sector declines, Swazis are increasingly relying on community volunteers to fill the gap.
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In Kenya, more than 10,000 community health workers have been deployed in communities to help plug the shortage of professional health care workers. They have helped scale-up HIV programmes including voluntary counselling and antiretroviral adherence counselling.
"Community health workers are particularly critical in providing services at the lower levels of health care, because trained health professionals are not always enough in resource-poor countries," Lucy Mathu, a prevention-of-mother-to-child HIV transmission advisor at the Elizabeth Glaser Paediatric AIDS Foundation, told IRIN. "Many patients, especially in rural areas only have a one-off contact with a trained health care professional, and this means the care these patients need cannot continue without these volunteers. They are very important in terms of passing on critical health messages."
In Kinshasa, capital of the Democratic Republic of Congo, where stigma remains very high and HIV-positive people are often shunned, one NGO is using HIV-positive volunteers to care for each other and to teach the community about HIV.
"We are all HIV-positive...volunteers oversee patients at home or in hospital," said Jean Lukela head of a national network of community-based organizations supporting people living with HIV (RENOUAC). "We organize community meals with the purpose of showing others that they can eat with [HIV-positive people]."
The AIDS Support Organization (TASO), one of Uganda's oldest local NGOs, has close to 5,000 volunteers; TASO officials say community workers are at the centre of the organization's activities.
"It saves hospitals and health centres from getting filled up. Instead of bringing these people to hospitals, we take care of and monitor them at their homes," said Moses Batwala, TASO medical coordinator. "The programme helps us take services nearer to the people."
Just 56 percent of health worker positions in Uganda's public health system are filled, and community workers play a vital role in plugging this gap.
"Home-based care approach is a very important component and has been demonstrated to work," said David Apuuli Kihumuro, director general of the Uganda AIDS Commission. "However, the system is too expensive... the government can't manage it. Civil society organizations and NGOs are better in doing it than the government."
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But NGOs also face funding issues, and community health workers - often just as poor as the people they care for - regularly go above and beyond the call of duty, sharing their food or buying food for sick community members or spending their own money on transport to get sick people to health centres.
"We need to get more support than what we have now. Many think we are just good Samaritans without any needs," Makhongo said. "Some of us get nothing at all, and some who get a little support have to share it with the patients we look after."
She receives 2,000 Kenya shillings - about US$24 - every month to facilitate the work she does, but this doesn't even begin to cover her expenses.
Volunteers for the DRC's RENOUAC say the people they care for are so poor that they cannot afford basics like toothbrushes and hand towels, let alone transport to health centres.
Studies show that while task-shifting - delegating tasks performed by physicians to staff with lower-level qualifications such as primary healthcare teams and community health workers - offers high-quality, cost-effective care and is a viable response to Africa's lack of health workers, it faces several challenges, including adequate and sustainable training and funding for community health workers.
"It is a problem, because when donors hear the word 'volunteer', they expect people to work and give of their time for nothing in return," said one Swazi health motivator who preferred anonymity.
"We do have affluent volunteers from the towns who can afford to work without compensation, but most of our women - the rural volunteers are mostly women - they live in extreme poverty," she added. "They do not use their stipends as income but they need this money to pay for bus fare, which can be expensive, and for lunches. I know several volunteers who purchase blankets and necessities like bathing tubs and even food for shut-in patients with AIDS."
The work is also frequently physically strenuous. "I must go to the stream with two 20-litre containers and fill them with water for Mrs Simelane. She is too weak to fetch water, and her children are too small to handle the containers. It is over a kilometre and I am fortunate to use a wheelbarrow, but pushing those containers uphill is hard!” Agnes Tshabalala, a health volunteer from Swaziland's central Manzini region, said with a laugh.
Mathu noted that the sustainability and success of the services provided by community health workers was dependent on the amount of training and support they received.
"Total voluntarism doesn't work at all," she said. "Make their work easy by giving them material support and continuously improving their skills to improve the quality of care they are able to provide."