Under a camphor tree on a green hill in Bizana in the Eastern Cape, Chief David Mlindazwe sits with his counsel of elders, their horses grazing nearby.
“HIV has affected my people very adversely,” says Mlandizwe, speaking slowly and with great sadness.
“In this area alone, three or four people are dying every month, especially the youth. Children are being left in the lurch. Many dependants are left behind and they come and ask me for help. But I have little to offer them. Then Litha Klaas and Bambisanani came to our rescue.”
Klaas, who sits at Mlandizwe’s knee, nods his head. He is setting up a home-based care organisation, Bambisanani, in the area and says the chief’s support has “made this the best community to work in”.
“People are tired of projects,” says Klaas. “They have seen so many people coming here to offer them help, and then disappearing again. We have had to convince them we are here to stay.”
A few kilometres from chief’s homestead, Nkosinathi Sogomo, 27, moans and writhes on a pile of blankets on the floor of his family’s cooking hut.
His once handsome face is gaunt, eyes sunken and staring and his thrush-filled mouth parted in pain. He has severe diarrhoea and his mother says he hasn’t kept any food down for three days. The stench is suffocating and flies are everywhere. Sogomo’s girlfriend is already dead. So is her ex-boyfriend.
The lush, undulating hills and clear blue skies seem tauntingly cruel in the face of such intense suffering.
Sogomo’s mother says that the hospital in Bizana tested her son’s blood. “They said it is AIDS,” she says, looking down at her hands and speaking softly.
Klaas is surprised by her admission, as he says locals are very seldom prepared to name the disease that is killing their children.
He speaks softly to the family, telling them that indeed this is what AIDS looks like and that they need to prepare themselves for Nkosinathi’s death.
Later that same day, 40-year-old Thembinkosi Jwara – bedridden with shingles, a pounding headache and no energy – candidly tells Klaas that he knows he has HIV.
Klaas is encouraged that people are starting to face up to reality. For the past 18 months, he has been involved in trying to set up home-based care in three areas of the old Transkei – Bizana, Lusikisiki and Umzimkhulu.
But winning the trust of the weary, suspicious and painfully poor communities is proving to be a slow exercise involving lots of negotiation.
This is a serious lesson for those policy-makers who glibly assume that home-based care projects can be set up quickly and cheaply to alleviate the pressure on hospitals of the ever-increasing numbers of terminally ill AIDS patients.
First, people need to get accept the idea that those who are terminally ill should be cared for at home rather than in hospital. Bambisanani then asks communities to identify local volunteers to do the actual caring for their dying neighbours.
“It takes time to find the right people, and then to get those people trained and then get them to train others,” says Klaas.
Bambisanani is the most ambitious home-based care project in the country. It brings together at least 12 different interest groups and spans three vast areas.
It was initiated by the Eastern Cape health department’s Equity Project, a USAID-funded project aimed at improving health services in the province.
The mining houses are one of the most significant partners. Goldfields has been with the project from the start, while Anglogold, Harmony and Placer Dome became involved more recently. The National union of Mineworkers and the Mineworkers’ Development Agency are also represented.
In the past, the area was one of the most a fertile recruiting grounds for the mines. Many of these men, whose migrant lifestyles, brought the virus back to these green hills, are now succumbing to AIDS and want to leave the mines to die at home.
Goldfields’ Jac van Rooyen says his company wants to ensure that its workers are “repatriated to a safety net”.
Pharmaceutical giant Bristol Meyer Squibb is the project’s main benefactor. Despite the massive, almost unwieldy, management structure and a substantial budget, the project as yet only employs one person: the small, energetic and overworked Klaas. However, a professional nurse is also being recruited to provide medical back-up to the carers who are sometimes at a loss when faced with extremely ill people.
So far, 30 volunteer care-givers have been given two months’ intensive training in palliative care by the South Coast Hospice. Another 30 are being trained at present. These 60 women will then recruit others from their areas and train them, thus creating a network of volunteer carers.
These carers teach families how to look after the terminally ill – not only people with AIDS — and check on them once or twice a week.
Zandile Fikizolo’s life is slowly seeping away. Her baby, Onele, is eight months’ old but looks barely eight weeks. She lies listlessly in her mother’ s stick-thin arms while her two siblings, aged eight and five, hover at the door. Fikizolo and her mother do not want AIDS to be mentioned, but HIV is systematically destroying Fikizolo’s immune system.
Nonkazimlo Mgojeni sits quietly by Fikizolo’s head. “I saw my community dying. I wanted to help, so I volunteered to become one of the Bambisanani home-based carers,” says Mgojeni, who oversees nine other carers.
“Referrals come to me from the hospital. I give them to the care-givers in each area. We have about four to six patients each. Mostly, they are dying.
Two died just last week. We visit them, and also report to the social workers if there are children in the house.” The 10 caregivers meet every month to report back on patients, and generally to touch base and offer some kind of support to one another.
“We need to meet and talk,” says Nofezile Mnyali, a middle-aged woman with worry creases traversing her forehead. “Last month, one of my patients died right in my hands.”
While there is substantial financial support for Bambisanani at present, Goldfields’ Van Rooyen insists that the project needs to be “self-sustaining” in the long run.
This seems to be a tall order for an organisation based in the poorest areas and dedicated to caring for those who are terminally ill and later, their orphaned children.
However, it is clear that as more people move into the terminal phase of AIDS – predicted to peak around 2010 — resources will become more and more scarce.
By preparing communities now and equipping them with basic skills, Bambisanani hopes to prepare them for the tidal wave that lies ahead and act as a support for ,local resources rather than a crutch.
In the long term, Bambisanani also plans to start income-generating projects to help families that have lost breadwinners.
Chief Mlindazwe has made a local hall available in his district and Klaas has been discussing starting income-generating projects such as crop production and baking, sewing and craft-making.
But it is still early days to talk about income generation when there is not yet a seamless link between hospitals, communities and Bambisanani care givers.
In Umzimkhulu, for example, a group of elderly women led by Zaineth Bly, have set up their own organisation, Gcnisizwe, to try to help families affected by HIV/AIDS, particularly AIDS orphans. They are approaching funders and local businesses for help.
Bly’s husband was the local chief until he died last year and her son took over. She also owns the local shop. “People come almost daily to my home crying that they have no food,” says Bly. “I give them something, but what about tomorrow?”
Klaas says he hopes Bambisanani will be able to work with Bly’s group, but there is clearly tension between the two groups.
This is inevitable as some people believe that Bambisanani has a lot of money but is not doing enough with it. It is hard for people who feel so forsaken – unemployed, hungry and facing the death of people they love — to understand that Bambisanani is there to help them to help themselves rather than to rescue them.