Andrew Hawks
Enna Kayopa has never heard of the new drugs that are offering a future for so many Aids patients in Europe and North America. She lives in a village in rural Zambia, in Southern Africa. She will be dead before triple combination therapy is available through the public health care system here. After seven years of containment, the HIV in her body is beginning to make itself known.
“Here it’s even difficult to afford an aspirin,” says Daphetone Siame, director of Aids management and training services at Chikankata Salvation Army Hospital. “Just to finish one course of combination therapy, you are talking about my entire pension.”
Aids prevention and care workers in Zambia do not spend their time in contemplation of anti-retrovirals. Instead, they are finding Zambian solutions to a catastrophic problem – a virus that infects 20% of the adult population. One solution is home-based care. A country which spends $6,50 per head on health, and which has 300 000 people living with Aids, cannot afford to look after them in hospitals or hospices. Home care uses the strength of the extended family, and fulfils the desire of most Zambians to die at home.
Chikankata Hospital, 128km south of the Zambian capital Lusaka, launched its home-based care programme in 1987. It began as a rejection of the “Western” model of care for terminally ill patients. Less than a year after the first Aids case was diagnosed at Chikankata a British charity, World In Need, offered funding for a hospice. Chikankata politely declined: demand would soon outstrip beds; the lives and livelihoods of families would be disrupted as they were socially obliged to drop everything and come to where the sick person was. And a hospice would always depend on donor funding.
“We said no, we are not going to go down that line,” says Siame. “So the Aids team started looking for another way. Why can’t we keep people in their homes? We can visit them, monitor them, give them drugs and teach their families how to care for them.”
The small team began twice- weekly visits within a 32km radius, bumping along the red dirt roads in a hospital four-wheel- drive, to villages where out-patients who had tested positive had agreed to be seen at home. For those with HIV, this meant braving the stigma and going public: there are few secrets in a Zambian village, and the meaning of the vehicle soon became known.
Home-based care sounds simple, but it was new to Zambia and probably new to Aids care. It took Aids out of the hospital and firmly into the family and community. “Neighbours were curious,” says Siame. “They would come round, we would explain what we were doing and have discussions. So we thought that maybe, this way, the patient was an entry-point not just into the family, but into the community. That’s when we started saying that care is linked to prevention.”
>From that insight, Chikankata has built a holistic system of care and prevention which has turned the hospital inside-out, at least where Aids is concerned. From being seen as the only local repository of answers and resources, Chikankata has encouraged villages within its catchment area to recognise what they have – voluntary labour and expertise, money, crops, cattle and other wealth – and to relegate the hospital to just another resource among many.
There are now trained Care and Prevention teams of volunteers in 16 villages, sharing some of the work of the home-based care staff. A “community counselling” philosophy has challenged people to examine social customs and personal behaviour, leading in one case to a ban by the local chief on “sexual cleansing” – the ritual of a widow or widower having sex with a relative of the deceased. The home-based care team still does its rounds. There are usually four members of the team: nurse, paramedic, counsellor and health educator. They give medical and nursing care, provide condoms if asked, and offer counselling.
“It’s better for the patient,” explains paramedic Ndabila Singogo. “We are able to intervene with small illnesses before they get serious. And the relatives stop fearing the patient and learn to look after them, by seeing how we care for them.”
The 50% of HIV-positive people who refuse Chikankata’s home-based care tend to die sooner, says health educator Cromwell Mweemba; that refusal is a sign of the denial which prevents them from coming to terms with their illness and caring for themselves properly.
Back in Lusaka’s international conference centre, 500 delegates are meeting at this year’s Zambian Aids conference. Talk turns to the cost of combination therapy – between $12 000 and $19 000 per patient per year. David Chipanta, a young man who has the virus, says doubts over regular supplies, lack of sophisticated monitoring equipment and cost combine to rule out such drugs.
“If we cannot do it well,” he says, “then let us not do it. But we can provide TB prophylaxis to people who are HIV positive, we can avoid or treat early opportunistic infections, and we can promote concepts of positive living. Let us do what we can.”