”It is like the sky on a beautiful May morning, when the sun has just come over the horizon,” says Eunice Mangwane. ”That is why we called this place Umtha Walanga — the rays of the sun. Because it shines rays of hope over Hamburg.”
This place is a substantial, two-storey building set back from the dirt road that runs through Hamburg, a ramshackle South African town along the Keiskamma River where it meets the Indian Ocean.
Umtha Walanga is the centre for the Keiskamma Aids Treatment (KAT) project. The outside is painted cream, the metal window frames black and its pitched, corrugated iron roof a rusty red. A tall eucalyptus tree hung with the nests of weaver birds stands out in front. Washing on a line flaps in the wind while stretching off to the right are allotments of maize and blocks of cabbages, carrots and gourds.
All around roll plump hills. Strewn over the landscape are clumps of sisal, stands of thorny mimosa with its tight saffron-coloured flowers, then round huts, shacks of corrugated iron, breeze-block cabins, some painted in the traditional colours of the Xhosa — pastel blue, sea green, or a pale purple. Cattle — brindled and spotted — with pointed horns graze peaceably. There are goats, too, and the occasional black pig. It looks peaceful, even prosperous.
But the reality is that farming is subsistence at best and unemployment runs at about 90%. Hamburg is linked to the nearest main highway by a 15km dirt road. Few people have cars and there are no buses, just irregular taxis. And about 30% of the 30 000 to 40 000 people who live in this area are HIV-positive.
Undertakers here do well, but their trade is not quite what it was. In the past 18 months KAT has taken care of about 250 men, women and children. This may not seem a lot given the scale of the HIV/Aids pandemic in sub-Saharan Africa, but it is the only clinic in this area with a qualified pharmacist licensed to dispense anti-retroviral drugs. Umtha Walanga isn’t just about hope. It stands between life and death. What it represents for the locals is incalculable.
Mama Aids
Eunice Mangwane is a counsellor and educator known as ”Mama Aids”. As broad as she is short, she radiates energy, determination and cheerfulness. She advertises with pride on her bosom; her T-shirt reads: ”Be wise means to condomise”.
She trained in Cape Town, but when her husband died in 1999 she came to Hamburg, his home town. She was on the point of returning to Cape Town in search of work when she met John Brown, an English magazine publisher staying here with friends. Brown offered to pay her salary to work as an HIV/Aids counsellor in the area for five years. So she started her mission.
”Then one day a woman came to me and said, ‘Mama, at home they have picked up my things and put them outside, I sleep on the floor. I have my own plate and spoon. I cannot eat with them.’ What could I do? I had to practise what I preached. I had to take her on. So the first place that people were in-patients was my house. It makes me feel very nice inside.”
Dr Jonathan Weber has come to see Mangwane. Head of medicine at Imperial College, Weber advises the Elton John Foundation and the Wellcome Trust on Aids initiatives. He has been studying the disease since 1982 and is heading the R458-million trials of a microbicide drug in Africa. He is a head honcho when it comes to Aids, but he has reservations about the value of something like Umtha Walanga.
”The trouble is NGOs like KAT are not sustainable in the longer term,” he says. Only governments, Weber believes, have the clout to mobilise and sustain resources and set up infrastructures needed to tackle Aids.
Weber commands respect and he listens. He listens to Eunice and to Carol Hofmeyr, the doctor who founded KAT, and later to Dr Mugerwa, who runs the Nomulelo hospital in nearby Pedi.
Adherence
At the moment he is listening to Vuvu Gusha talking about the realities of one of his patients. ”We had to call him in because he was not taking his treatment, and this was the second time he was doing this, and he is taking alcohol and abusing his parents. So it was not right. So I brought him in for counselling here too and told him he would die if he did not respect his treatment and his people. Now I think he may be all right.”
Gusha is an adherence monitor, a unique feature of KAT care.
Umtha Walanga is not just for the community, but also run by the community. HIV/Aids patients come in for anywhere between two days and a week, to be nursed and assessed for exactly which cocktail of anti-retroviral drugs they need and trained in taking them. To make sure they do so, they have an adherence monitor appointed for them.
It may seem in clients’ best interests — the staff at Umtha Walanga refer to patients as clients — to remember to take their pills twice daily, but the best interests can be distracted by hunger, drink or depression, and a client may be taking up to 20 different pills. Even in the United Kingdom, not all the 30 000 or so people living with HIV/Aids catered for under the health service will always stick to their drug routine. To expect those for whom there is no tradition of regular treatment to do so without help is unrealistic.
So the monitors visit them to help and to promote sex and HIV education. Monitors are local people, invariably women. They are not nurses; they are simply trained to make sure their clients follow the regime as prescribed and to recognise any side effects of the anti-retrovirals. They are low-cost but highly effective.
Weber is looking closely at the effectiveness of the adherence monitors. If they work here, they would probably work anywhere, relieving pressure on hard-pressed medical staff.
Eunice Mangwane, who heads the monitors, tells Weber: ”They have made such a difference, such a difference. Now people want to find their status, whether they have HIV/Aids or not, even if they do have it. They want to find out.” Weber listens carefully.
He listens to Carol Hofmeyr as he accompanies her on a round of her patients. She is a delicate woman of about 50, with a refined bone structure, pale golden hair and tired eyes. She initially set up an arts project to provide employment for local women, but became increasingly involved in their lives and deaths and found herself drawn back to medicine. ”I couldn’t just stand by,” she says. ”What motivates me is the desire to make people aware of their right to medical treatment.”
Officialdom
But the impact of Umtha Walanga is restricted. If it could develop working relationships with other medical establishments, its work could be extended. Hofmeyr is wary of officialdom. But then, as she ruefully confesses, the United States’s President’s Emergency Plan for Aids Relief (Pepfar), which pays for the anti-retroviral drugs, and International Youth Development South Africa, a faith charity that distributes the drugs, may find her a bit demanding too.
She finds their systems inflexible; they don’t see the need for the expensive live-in facility giving care, support and food. But Hofmeyr feels her patients need that support because they have been rejected by their families. Above all, she wants to maintain the independence of the KAT centre, to be able to bypass bureaucracy. ”I want to work in this community,” she says. ”This is where my passion is.”
And she has a lonely job. She is the Aids authority hereabouts: decisions she makes daily may make the difference between life and death, and it is a heavy burden. But talking to Weber, she begins to open up, to share professional judgements with him. She has daunting problems. First, there is the simple matter of logistics. KAT has been so successful it can barely cope with the demand. Finding, training and keeping staff is a struggle.
”Over December last year,” Hofmeyr says, ”We were working 16 hour days to cope with 40 clients.” Another doctor would help spread the load, but there are few incentives for any doctor to be somewhere as remote as Hamburg; and nurses, too, are drained off by the UK and US health services almost as soon as they are trained.
Money
Above all there is little money. The drugs are supplied free by Pepfar, but people need pay and there are the running costs, two cars for ferrying patients to be maintained, and food to be paid for. It costs about R1,1-million a year to run KAT. Much of this has been borne by Malcolm Driessel, a Hamburg businessman, John Brown and Hofmeyr.
But there is no sense of melancholy about Umtha Walanga. The ground floor has three wards — rooms with two beds in them — and an extension is being built for a children’s wing. Here Teaspoon is ready to go home. He is 18 months old, plump and lively in his mother’s arms. He got his nickname because his head was enormous in proportion to his tiny, wasted body when he arrived at Umtha Walanga.
Teaspoon is HIV-positive, like his mother, but he will continue to be plump and glossy just so long as he goes on taking anti-retroviral drugs. He could well live out his natural lifespan, thanks to the work of this place.
Eunice Mangwane has personal experience of living with Aids: her daughter and grandson are both HIV-positive. She encouraged her daughter to breastfeed her son before she knew she was infected. ”I sometimes think that if I hadn’t made her do that, it would have changed his life.” She pauses, and smiles, a warm, sunny smile. ”But now we have hope. Now at least we know what is going on. We are no longer in that dark place.” — Guardian Unlimited Â