When Living Is A Luxury
issue 250 - December 1993
When living is a luxury
The World Bank says that care for the dying is a luxury in poor countries.
Maggie Black finds more humanity on the ground than in the boardroom.
The outline of a patient’s form under the grubby cloth can just be detected. He is lying on a blue plastic mattress with a hole cut out around the anus through which the endless diarrhoea can fall out and trickle down a drain. Apart from the iron bedsteads there is no furniture in the room except for metal sentinels dripping saline solution into emaciated arms.
At the foot of a bed stands his sister swathed in red. A gaudy galleon becalmed amidst the stillness of the dying.
This is the infectious diseases ward of Treichville Hospital in Abidjan, Ivory Coast. The director Dr Agness Justine, says that two thirds of her patients have Aids. ‘Their families desert them. They cannot afford to pay for the cheapest bed or treatment and they’re terrified,’ she says. ‘The Ministry of Health has been asked to let Aids patients pay reduced fees, but they haven’t agreed and there’s no money to improve our hospital care.’
In Ivory Coast, as elsewhere in Africa, social budgets are under severe pressure due to economic crisis and structural adjustment. In Uganda, health budget cuts run up to 60 per cent. In clinics up and down the continent, drugs are short, buildings in disrepair, staff are poorly paid and demoralized. Meanwhile Aids cases are inexorably mounting.
No-one who has visited an Aids ward would suggest that patients should be denied medical care. Refusing care is not an option in Africa, any more than it would be in Europe or North America. As Susan Foster, a medical researcher in Zambia points out: ‘When a patient turns up in bad shape, he or she will be looked after. So we had better get used to the idea that care will be provided, and stop frightening ourselves by counting the cost.’
Yet there is a marked reluctance among donors to Aids programmes in Africa to ‘waste’ money on Aids patients. The World Bank, for example, says that treatment is not cost-effective and prevention is the answer. ‘We must protect health systems against being overloaded by people who cannot be helped,’ says Edward Jaycox, Vice-President for Africa. ‘This sounds cruel, but it’s absolutely necessary that someone has enough cool in these situations to be able to make these decisions.’ Dr Terence Stamp, Minister of Health in Zimbabwe, disagrees. He sees this attitude as the equivalent of telling Africa to go jump in the lake.
Those who live or work in situations where they confront whole families devastated by Aids daily could be forgiven for jumping in the lake. But Aids has stimulated selflessness, as well as stigma. Agness Justine, for example, has set up a charity called Espoir Cote d’Ivoire. Her volunteers raise money to pay patients’ hospital fees, buy sheets and food and visit the sick to feed and comfort them in hospital and at home. This is what donor agencies call ‘community response’.
The best known and longest established voluntary group – TASO in Uganda – was set up by Noerine Kaleeba after her husband died of Aids in 1986. She was so appalled by the rejection they experienced when he was dying that she determined to do something for others living with HIV. She wanted to help people with HIV look after themselves, set up businesses and support each other to overcome the terror and economic ruin that often accompany HIV and Aids.
In Masaka and the neighbouring Rakai districts of Uganda, the social and economic effects of Aids are palpable. An overgrown banana plantation here, a derelict hut there, an elderly woman out in the fields feebly wielding a machete at a time of life when she should be sitting peacefully. Why? Because all the children of her dead sons and daughters – 14, 16, even 30 altogether – are now dependent on her. A tractor may be lent for planting, or some money to help keep the children in school. But the number of orphans in the area is around 40,000 and without welfare support, the famous African extended family cannot extend itself to manage.
Like Agness Justine in Abidjan, Ursula Sharpe of St Joseph’s hospital in Masaka is frustrated by the donor agencies’ lack of interest in patient care. ‘If, with patient care, I can keep an Aids patient alive for six months, I prevent the children being orphaned sooner than necessary and gain time for parents to make provision. Let children see their parents die in dignity. That will help them,’ she says. But no. Counselling, condoms, radio jingles and street theatre are fashionable; prevention is great. But the patient in a village hut whose 12-year-old daughter nurses her alone and unaided for months on end – she can be forgotten.
So how is Aids prevention, that the donors are happy to fund, going to come about? ‘Behavioural change’ is the formula they recommend. They host expensive meetings in the Novotel and Sheraton Hotels, and discuss ‘social marketing’ for getting condoms onto African penises. Prevention campaigns usually consist of billboard and TV exhortations. They exhort away, and condom sales have risen from zero to some, but ‘behavioural change’ does not come easy.
So far, in Aids prevention, there is very little proof of behavioural change where dying has not yet begun. In Africa where it has begun, there is still no sign that behavioural change is reducing HIV’s spread. And where the dying has begun in earnest, health facilities are already overwhelmed. What do the donors recommend for this? Ah yes, the ‘community response’. They invite Kaleeba and Justine and other outstanding individuals to the Novotel to describe what they are doing, and they applaud enthusiastically. They wax lyrical about the ‘mobilization of community resources’. What resources? And they don’t give them money for patient care. Yet patient care – with its intimate contact with partners of the sick and with those most affected – may be the best preventative of all.
Donor agencies – for all their good intentions – seem to have an ivory tower relationship with HIV. They produce elaborate schemes of ‘objectives’ and ‘inputs’, which have a make-believe quality when viewed from offices in the Ministry of Health, let alone from the bedside of an HIV patient. They study epidemiological trends, attractively transformed by computerized graphics. They talk about sex education, and maintain that their interest in African sexual practices is purely scientific. And they talk constantly about ‘the community’ – the word seems to have a mantra-like appeal – and seem to think that whatever it is, it is providing an ‘enabling environment’ to help combat Aids.
In Treichville and in many HIV-affected homes an ‘enabling environment’ is a piece of unsewn cloth for a sheet; a volunteer with a kind word and a tin plate of mushy food; a woman in a confection of red silk visiting her brother; a home visit to persuade a girl in terminal decline not to fulfil her heart’s desire and get pregnant. The ‘enabling environment’ does not include proper patient care, liveable wages for nursing and medical staff, income support for the wife rocking on her haunches over the inert body of her husband, about to be widowed and with three small mouths to feed.
Over eight million people have HIV in Africa. No vaccine or treatment will be produced in time or at an affordable cost to tend these patients-in-the-making. Are the donors really suggesting that voluntary groups are the answer?
Instead of talking up ‘community responses’, officials meeting in the Novotels and Sheratons would be well advised to provide a significant injection of funds, training and equipment into Africa’s foundering health care services. If they could bring themselves to visit somewhere like Treichville Hospital, perhaps reality would intrude.
The problem with Aids is that reality is very hard to bear. ‘Objectives’ and ‘inputs’ are infinitely easier to face than the skeletal form of the person whose life is visibly ebbing away through a hole in a plastic mattress. ‘I don’t know where this is going to end,’ says Agness Justine. ‘We can’t go on like this forever.’
Former NI editor Maggie Black went on to work at the UN for several years. She is now an independent writer and editor, who has written extensively on HIV, Aids and the developing world.