Hope and help for healing:
ARV treatment and home-based care in Bergville

The national Department of Health’s HIV/AIDS treatment programme was launched in November 2003, with enrolment for free anti-retroviral (ARV) drugs beginning in July 2004. However, by the end of the first quarter this year, many people in KwaZulu-Natal, from both large and small towns, could not gain access to the therapy.

Hospital and clinic staff, volunteer home-based caregivers, patients and their families in the uThukela district, one of the most severely affected areas of rural KZN, face many challenges in bringing treatment and care closer to their communities.

The capacity of existing structures to deal with the high demand for treatment and care is inadequate, causing delays and disappointment, with often tragic results. Despite long distances, lack of funds for transport, physical weakness and hunger, many people are coming forward to be tested for HIV, and to confirm the level of the virus in their bodies (through CD4 counts), but in some cases the blood samples have to be sent away to larger cities for the results. Although a number of medical centres have been approved to administer the ARV programme and can complete the testing process, many of them have not received the required supply of drugs for patients who need them.

The role of volunteer home-based caregivers is vital to the success of this programme, for it is these dedicated, trusted community members who identify and tend to those suffering from AIDS-defining illnesses, and advise their families and neighbours on many issues relating to HIV infection, access to social grants, procedures for care in the home and the needs of orphaned children.

Fully trained volunteers strengthen the efforts of clinic staff and community health workers by helping patients with taking the drug dosages regularly and correctly, and many of these women teach families to grow vegetable gardens for nutrition and income generation.

“Most HIV-positive people in rural areas know when they are seriously ill,” says Phumzile Ndlovu, Co-ordinator of HIVAN’s uThukela Home-based Care Intervention Programme in Bergville, “but for many reasons they wait for the disease to become terminal before they seek help from different sources. Our group of 70 trained caregivers tries to break through the stigma and denial around AIDS that often prevents patients from asking for help, and we do all we can to assist in getting them to a doctor in time to save them.”

Sadly, after months of fear, loneliness and physical suffering, too many patients die before they can receive treatment. In February, one of the Bergville/Okhahlamba caregivers accompanied a neighbour’s daughter, whose condition was very poor, to the Church of Scotland Hospital, but the young girl passed away during the late-night four-hour journey along the Greytown road.

The volunteers’ compassion is limitless during events like these, as they continue to support bereaved families in their grief, and help them with funeral arrangements; but their own despair and selfless effort takes a heavy toll on them personally. In recognition and praise of their commitment and kindness, Phumzile arranged a special Retreat Day for the Caregivers in the Bergville Farmers’ Hall early in March 2005.

“We wanted to celebrate the work of these ordinary, mature, faithful women, who care for the sick people in our community with no compensation and with endless hope for a better life for those aroundthem,” she explains. “A church in Australia donated R27 000 for food parcels, catering and taxi fares for the volunteers, who came from all over the District to share their experiences and unburden their hearts.”

According to Phumzile, it was “not a quiet day”, as the women sang and prayed, with one group from Umsinga and the Tugela Ferry Hospital giving a special drama performance, and the Mpilonhle group from Ladysmith reciting poems. Omama bomthandazo from different sites around Winterton, Bergville, Pietermaritzburg and Dundee were also present. Sharing their stories was an emotional outlet for them, and the women cried as they released the anguish they had been holding inside them for many months.

Living and working closely with her community and the caregivers has given Phumzile deep insight into their needs and strengths, and her involvement has resulted in remarkable developments, both personally and professionally. Her study of how people are coping with life and death from HIV/AIDS in a remote rural setting are being formalised through her appointment as a HIVAN Ethnographic researcher. She received a loveLife Young South African Achiever Award in December 2003, and in March 2005, she was nominated for the Shoprite Checkers Woman of the Year Award in the Social Welfare category.

Such recognition reflects the many triumphs she and her fellow caregivers have accomplished over the last five years. These include the formation of an NGO and local government AIDS Action team that meets every two months and a support group for HIV-positive widows, the establishment of a Youth Centre and creche in her area, helping to distribute 38 tons of maize donated by farmers in the area into local needy households, and addressing a KZN Imbizo in which she appealed to Premier Sbusiso Ndebele for monthly stipends to reward the hard work and devotion of the volunteer HBCs.

“We also introduced the national ARV treatment programme to our community, involving over 30 patients in association with the home-based caregivers and Dr. Moll from the Tugela Ferry / Church of Scotland Hospital (COSH) at Umsinga,” says Phumzile. “The Bergville/Okhahlamba Hospital had no ARV treatment facilities but, through the relationship that we have developed with the COSH - which is 300 km away from our area - many people are now receiving ARVs.”

Fame and material success are not her primary goals. Phumzile speaks for the hundreds of unknown heroes and heroines of the AIDS pandemic in our country when she explains:
“Every day, the work I do motivates me and deepens my understanding of the levels, causes and lessons of such suffering in our society. The more I pursue my calling, the more I know about what it is to be human, and about what humanity asks of and gives to me.”

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