Bringing It Home
issue 250 - December 1993
photo by TIMOTHY NUNN
Bringing it home
Drug companies sell pricey treatments. Charlatans hawk magical cures.
Meanwhile, Sunanda Ray tries to provide relief for her Aids patients in Zimbabwe.
Fadzai is seventeen. She came to see me because she had developed large lumps in her neck. Her inflamed lymph glands together with her other symptoms suggested HIV infection. We talked. She had run away with a soldier who bought her presents. He promised she could carry on at school to do her exams; he would pay her fees, she would cook and clean for him in return. When he was bored with her he sent her back to her parents – but by then she was already infected.
The lumps were obvious and needed some explanation. She was afraid to tell her parents when her HIV result came back positive. The community sister went with her and spent a very long time talking with them, that day and for several days afterwards. They feared she would infect the younger children because she slept in a bed with her two sisters. They were adamant they wanted her to leave. They owed her nothing. She had spoiled the good name of the family. This was going to spoil the chances of the younger girls to get married and who was going to look after her when she got sicker?
I had very little to offer her. The best I could do was to find out if the lumps were due to tuberculosis which could be treated. We had hundreds of tins of the mainstay drug in the Third World for treating tuberculosis – thiacetazone and isoniazid. But it was giving people with HIV such terrible skin reactions that many died of these before even being classified as having Aids. So I stopped using it.
There is an alternative. In richer countries they use rifampicin. But in Zimbabwe supplies of this drug are erratic and, anyway, it’s too expensive to give to everyone. In richer countries people with HIV who might develop tuberculosis get preventative medicines. In Zimbabwe, because the tuberculosis is considered a public health problem, patients get free treatment and care. But with 10 per cent of the population thought to be HIV positive, prevention is a luxury we can’t afford. Often we don’t have the drugs to treat all those who already have tuberculosis with or without HIV, let alone those who are still healthy. And because we can only treat some patients we are missing out on all the preventative work we could be doing with people who are HIV positive. This in turn affects people who are not carrying HIV, who are now exposed to a new tuberculosis epidemic.
The price of pain
If Fadzai’s lumps were not from tuberculosis she would be stuck with them – and a visible sign of being HIV positive. There would follow stigma and whispers behind her back. If we could not persuade her parents to look after her, to let her rejoin the family, she would be on the streets fending for herself. That could mean selling herself for a place to sleep or for the next meal.
The realities of Fadzai’s situation were very much in my mind on the way to last year’s international Aids conference in Amsterdam. The conference was a bizarre and painful experience. We know that the majority of people living and dying with Aids are in the Third World. Yet the conference centre was full of exhibitors from the health (or disease) industry advertising products that we would never be able to afford. HIV test kits, treatments, potential ‘cures’; all glossy and expensive. I thought of Fadzai when Western clinicians told us about how life expectancy could be extended by preventative drugs for four or more conditions, including tuberculosis. They had intensive investigations, anything that could be treated was treated quickly.
It seemed clear that Aids would soon be another ‘tropical illness’ that foreign clinicians would visit us to write more papers about. Aids would join the ranks of malaria, cholera, typhoid; of diseases that have been eradicated in the North but still kill millions across the rest of the world because of poor living conditions and little access to health care. The élites in the Third World would still manage somehow to get what they needed – the way even now they buy the anti-HIV drug AZT on the black market or have it sent to them by friends abroad.
Activists demonstrating at the conference demanded the right to be included in drug trials and called for less delay and red tape in making drugs available. I appreciated their efforts but noted how few demands were made in solidarity with people living with HIV and Aids in the South; for existing drugs to be made cheaper so that patients could at least have some relief from the diseases that we do know how to fight.
Today a course of treatment for thrush costs the equivalent of a month’s take home pay for a government clerk, or four months’ pay for a gardener or domestic worker. Drug companies are only really interested in us as a potential market and though our need is great we don’t count as consumers because we can’t afford to pay their prices.
Many clinicians feel that scarce resources should go towards treatment of curable conditions, so that workers can return to employment. Care for those dying of Aids has low priority in the struggle for resources. A quarter of pregnant women are found to be HIV positive on antenatal screening but even providing disposable gloves for midwives to protect themselves from possible HIV risk during deliveries would be a major drain on resources.
Ritual and reality
When I looked into Fadzai’s story again I found a welcome change. She was living at home with her family who had finally accepted her. She was doing the cooking and looking after the young children. Her mother explained to me that they had taken her to a traditional healer who had performed the necessary rituals to appease the ancestral spirits who caused her illness. In most African cultures disease is believed to be caused by some disharmony between the spirits and the living as a result of something that has happened in the family. It may have nothing to do with Fadzai; it may be something that happened before her birth, for instance if someone did not pay the lobola (bride-price) in a family marriage. Fadzai, for some unknown reason, may have been chosen to warn the family that they must do their duty. By performing the right rituals the family felt that the ancestors were on their side and they could deal with the problem and compensate for bad spirits. Even though the traditional healer had not cured her and she still had lumps on her neck, the family felt that they had done everything in their power and were therefore able to accept her illness and care for her in the family.
Aids is highly stigmatized, leaving people isolated and scared. Being HIV positive is often kept secret for fear of losing a job, home and friends. Traditional healers have an important role to play. Many of their herbal remedies give relief for loss of appetite, diarrhoea and vomiting. They also give hope when conventional therapists say there are no cures. Early ‘education’ campaigns gave the message ‘Aids Kills’ and had the effect of frightening people without giving them the support or motivation to change the behaviour which put them at risk. But since traditional concepts of disease do not emphasize individual responsibility, it is more difficult to persuade people that they can help stop the epidemic by changing sexual behaviour.
Traditional healers feel threatened by foreign scientists and drug companies. They fear that their herbs and remedies will be taken and analyzed for active ingredients which will then be processed and sold back to us at a vast profit for the drug companies. Traditional healers who originally identified these remedies would get neither the credit they deserve nor a share of the profits. This means that potentially useful treatments are kept secret and are not accessible to the wider public. Some healers, claiming to have ‘Aids cures’ charge exorbitant fees – up to $200. They have no vested interest in making these treatments more widely available but perhaps there could be progress for patients if the credit and profit from effective treatments could be shared.
But it is important not to be romantic about all healers. People have blown all their savings on remedies advertised on the grapevine as cures for Aids. In the markets multicoloured tablets are sold for prices as high as expensive Western drugs like AZT. There is a growing black market in these drugs sold two at a time to people desperate for relief.
Any hint that a drug might be promising as with Kermon (a drug developed in Kenya) and people with HIV sell up everything to buy those few tablets that may give a chance to defeat the virus. This is fertile ground for corruption. Whether it is individuals or drug companies there are big profits being made out of the Aids epidemic and those trying to live with Aids are caught in the middle.
What will it take?
So where does this leave us? There is no cure as yet for Aids. Early treatment of infections can delay the progression from HIV to Aids which gives people more time in good health. Time to plan for their children, to make arrangements about school fees, to negotiate who will look after them. Treatment of symptoms can also reduce pain and suffering. Without the right drugs, none of this is possible. There has to be some way that co-ordinated action around the world can demand fairer access to treatment for the majority of people living with Aids, here in the South.
What is clear to us in the South is that there is nothing special about Aids. As a doctor it is hard for me to know that my patients may die of treatable diseases because our community cannot afford the medication. Imagine the pain a mother feels watching her child die of pneumonia, knowing that if she lived another life, if she had transport to the nearest clinic, if she could buy the drugs herself, her child might survive. What people at the Amsterdam conference were angry about – the feeling that they are being denied access to drugs – is our daily reality. The drugs exist, somewhere in the world – what more will it take before we are allowed to use them?
Sunanda Ray is a doctor and women’s health activist. She is a founder member and chair of the Women and Aids Support Network, Zimbabwe and co-author with Marge Berer of Women and Aids (see Worth Reading).