Global Policy Forum

South Africa's Aids Apartheid

By Philippe Riviere

When their visitor asked them about Aids, the children of Dr Mary Malahlela's primary school in Dobsonville, Soweto, were quick to reply. "It's a virus," said one. "People get thin, then they die," said another. "You have to use a condom," chimed in a third, blushing.

For several months now a mural on the school wall has shown the red ribbon and a condom flanking the ubiquitous prevention campaign slogans: "Aids is there. It's a reality," "Abstain - Be faithful - Condomise," "My friend with Aids is still my friend," or, more enigmatically, "Love them enough to talk about it." Although the children have been bombarded with these messages since they were very young, they are amazed when Mercy Makhalemele tells them she has been HIV positive for 10 years. She is so beautiful, and she danced so well when they were singing a few moments ago. How could she be ill?

Her story is all too common. "I was a resource manager for a big retail company. When I was pregnant the second time, I tested positive for HIV. After I told my husband, the whole thing was blamed on me. He beat me up and I needed 14 stitches. I was thrown out of the house with our son, Thaban. The next day he came to find me at work and told me to collect my things. He said he couldn't live with someone who was HIV positive. Someone at work must have telephoned my employer because that evening I was fired."

Homeless and without a job, her story then took a different turn: "My father taught me that thousands of others experience the same things as you." Now she devotes herself to making this silent virus visible in schools, international meetings and the media.

At the Chris Hani Baragwanath hospital, Makhalemele was counselled by a young pediatrician, Glenda Gray, and an obstetrician, James McIntyre, who had just started a small perinatal HIV/Aids research department. Nine years on, it has around 40 researchers - "I spend my time recruiting," Gray sighs - and last year it monitored 13,313 pregnant women and their babies. It is also the centre of the nevirapine scandal that has shaken South Africa. Housed on the top floor of Soweto's tallest building, it overlooks White City with its concrete roofs that used to protect the families of white policemen from Molotov cocktails. Behind the hills stretch the "matchbox" houses of the township's 1-1.5m inhabitants. Screening of pregnant women suggests that 30% of young adults there are infected with HIV.

Nevirapine - a second generation antiretroviral - offers pregnant women a chance of avoiding passing the virus on to their babies if it is administered six hours before they give birth. The risk of congenital infection is halved from 30% to 15%. "When we explain the risks of passing on the virus during childbirth," says Agní¨s Fiamma, a public health researcher, "nearly all women agree to be screened so they can be given nevirapine if necessary." But until 5 July this year the South African government systematically opposed what doctors and expectant mothers take for granted (see box). Apart from nevirapine, the public sector cannot supply any antiretroviral drug other than for emergency prophylactic treatment for accidental injuries to medical staff and, more recently, for rape survivors.

An unsigned 120-page document circulated among leading members of the ruling African National Congress (ANC) this March shows the scale of paranoia among the leaders most opposed to such treatment. It accuses researchers of murder and activists of being in the pay of the pharmaceutical manufacturers. Twisted logic attributes the death of presidential spokesman Parks Mankahlana at 36 to the toxicity of AZT; he was a fierce opponent of antiretrovirals. "Without question some politicians are infected just because of the numbers," Gail Johnson stresses. She is the adoptive mother of Nkosi, the nine-year-old boy who touched people's hearts at the Durban Conference in July 2000. "Aids is rumoured whenever one of them dies. It might be true, but so what?" she continues. "It becomes an obsession in this country because no one is talking openly."

Five million South Africans are infected - but only 10% of them know it. This means that the continued flirtation of President Thabo Mbeki and other top-ranking ANC members with "dissident scientists" who deny the link between the virus (HIV) and the syndrome (Aids) has inevitable consequences. At the end of April pressure from the international community and growing internal criticism, from Nelson Mandela in particular, forced the president to distance himself from the "dissidents ".

Edwin Cameron is a law professor and a former judge at the Constitutional Court and was one of the first public figures to declare openly that he had HIV. "The tragedy of denial is that it set us back for two and a half years because it increased the shame about Aids," he says. "We were just at the point when people might have been prepared to speak. I expected that like myself there would be cabinet ministers, members of parliament, members of provincial governments, entertainers, pop stars, soccer players, and it hasn't happened. The president's open questioning of the link between HIV and Aids recreated all the inhibitions. By denying the simple facts about Aids we recreated the mystique, the horror, and the shame and stigma. The struggle against silence about Aids is essentially a struggle for basic human rights."

Celebrities get their health care in the private sector and are afraid of being accused of racism or betrayal; so they keep silent, leaving the population in confusion and ignorance. Freedom Day, 27 April, is the eighth anniversary of the first democratic election. On television, Mbeki is speaking by telephone with millionaire Mark Shuttleworth on board the international space station. He boasts that the new South Africa has opened up opportunities for all, including the possibility of space flight.

'We are so ignorant'

Meanwhile, down below, the schoolchildren of Soweto are preparing to celebrate the event in dance. Gandhi Mahlamvu is sitting under one of the township's few trees. She survives in Kliptown, where she was born 28 years ago, thanks to her grandmother's tiny pension. "People don't go to information meetings. They think it's a waste of time. You've got flu, you've got Aids, what's the difference? At Zion church they say they can cure it by prayer. Some people also say the sangomas (traditional healers) know of herbs that will cure it." Doctors? "I hope they'll find something one day. I did hear of something. AZT I think." The nevirapine trial? Antiretrovirals? "I don't know. We are so ignorant."

In these deprived districts confusion reigns. But Gandhi does social work, searching the shacks for Aids victims hiding and waiting to die. "If you say you're HIV positive they treat you worse than an animal. You can't even go out of the house. Many commit suicide. Some claim it's diabetes that's making them lose weight." Gandhi quotes the Bible and explains: "It's materialist thinking that's killing us. Girls like boys who have cars. That's how poverty drives us into HIV. At home we have nothing. Then a boy comes along promising everything."

Many South African sociologists and doctors describe a panorama of "transactional" sexual relations. Without an income, girls cannot afford taxis (there is no public transport) and are tempted to resort to what they call a "minister of transport". They may also have their own "minister of finance" or "minister of leisure". Sugar daddies wait outside schools with presents - designer clothes or mobile phones. Apartheid carried machismo and sexual violence to overwhelming levels. For a population of 43,8m, journalist Charlene Smith quotes a figure of 1m rapes every year. This violence goes some way to explaining the speed with which the epidemic has spread in the country (1).

Although the Aids explosion came later than elsewhere, it has also been more violent. There are hundreds of thousands of orphans; projections show there will be 1m in 2005 and 2.5m in 2010 (2). That is just in South Africa. Newspapers are already writing of gangs of street children turning to violence and asking how the country will cope with such a disaster. But such threats mask the reality in which those most affected have to live. Most children have problems simply obtaining their parents' death certificates or even their own birth certificates, according to Linda Aadnesgaard. She runs a programme to help orphans in Pietermaritzburg, the small capital of KwaZulu-Natal. "Forty-nine per cent of South African children don't have birth certificates. That means they don't officially exist and can't access social grants or get school fees exemption."

Housing problems, hospital waiting times, shortage of medicines, police who refuse to take complaints of rape, the need to take the state to court to get necessary papers, lost social security files: these urgent, ridiculous problems consume energy and resources. People who are HIV positive are therefore beginning to raise demands far beyond the question of medical treatment: the rebuilding of public services, access to an unconditional basic income of 100 rand (10 euros) a month, workers' rights. They are in the vanguard of all these struggles.

'Dying like fleas'

"In 1990 only 1% of pregnant women in KwaZulu-Natal were HIV positive," says Dr Paul Kocheleff, who runs the HIV clinics at Pietermaritzburg's city and township hospitals. "Today it's 36%. About half the hospital beds are occupied by people with Aids." After passing through the fertile fields of the big white farms of Natal, the road winds through the Valley of a Thousand Hills to the coast. Not one of the households living in the small family shacks that dot the landscape is untouched by Aids. Probably 80% of young adults are infected. Here, the South Africans say, "people are dying like flies". But the death rate, which lags five to 10 years behind the rate of infection, is still rising.

Kocheleff says there is an urgent need to rethink the health care system because it will be unable to cope with the hundreds of thousands of sick people there will be in the future. "Hospitals, health centres and dispensaries aren't using their resources properly. The most seriously ill patients aren't landing in specialist services, and these are overwhelmed with patients who only want a prescription. The scale of the epidemic calls for novel solutions. We want local communities to take responsibility for preventing the most common opportunist diseases and to monitor the basic clinical indicators. They would then send us the difficult cases." Basically, what is needed is to "build a network capable of reaching the greater part of the population when antiretrovirals finally arrive."

Too expensive for the poorest countries, these drugs are at the heart of the debate on globalisation. Can patents take precedence over the right to life? What are the criteria for a "health emergency" that will allow generic medicines to be manufactured or imported? (That would bring about competition between manufacturers and force down costs.) At the trial in Pretoria in April last year, the government inflicted a humiliating defeat on the South African Pharmaceutical Manufacturers' Association (PMA). Backed by the Treatment Action Campaign (TAC), it was defending a draft law on the use of generics. But the law has still not been promulgated a year after the multinationals were routed. The PMA is even threatening to take Medscheme, one of the largest private insurance funds, to the competition commission; Medscheme has tried to anticipate the law by encouraging the use of generics instead of "branded" drugs.

Zackie Achmat is fuming as he explains how the health ministry has just announced in a two-line communiqué that parliament will have to examine the law again. "That will lose us another two years!" he says. Achmat has led the TAC since its formation nearly four years ago (3). It is a grassroots social movement that is sweeping the country. "We're sometimes described as a little group of former Trotskyites," he smiles, "and some of us are (4). But this campaign is really a popular movement backed by the churches, trade unions, health workers and quite a number of ANC members. We've thousands of members in Cape Province as well as in Gauteng (the province where Johannesburg and Pretoria are located) and KwaZulu-Natal. In Gugulethu, a township suburb of Cape Town, our meetings are chaired by the pastor's daughter and start with prayers."

During the Mandela years (1994-99) Mbeki's liberal strategy (privatisation, budget discipline, the free market) prevailed in the ANC over a more interventionist trend that called for nationalisation and more ambitious social investment. Although the country's wealth increased, unemployment soared. "The epidemic is going to increase the differences in revenue," according to Paul Hartdegen from the South African branch of the investment bank J P Morgan, the author of a detailed presentation on the impact Aids has on the economy. "A household on a moderate income will have to keep sacrificing more and more of their disposable income on their health charges. On the other hand, for the employers, the cost of medical insurance, including treatment, is handled perfectly well. For example, the cost per ounce of production in the goldmines will be no more than 0.5% of the current price." Aids is known to flourish where there is inequality; the study shows it is also one of the main causes of inequality.

Are the poor entitled to the same medicines as the rich? This simple question from the TAC has a particular resonance in the country of apartheid. When treatments exist and are available in private clinics, why are they not provided in public hospitals? How can a public health system be built that is capable of coping with this health disaster?

"Another unknown aspect of our work is scientific literacy for patients," says Nathan Geffen, the campaign's national coordinator. "When people who've had contact with TAC go to hospital they're more demanding and know which drugs they need. They're also better able to cope with the disease." Most TAC members have joined since August 1999 when Médecins sans frontií¨res (MSF) set up its mother-child transmission prevention programme in Khayelitsha.

This vast shantytown surrounded by dunes is where the regime "rehoused" the residents of several Cape townships in the 1980s. Its 500,000 inhabitants are cut off, and the only infrastructure is a small supermarket, a service station and a clinic in the "town centre". That is where TAC and MSF share offices in the only two-storey building.

Dr Eric Goemaere says that when he came to the TB (tuberculosis) prefab behind the clinic three years ago, the population "was in complete denial. They didn't know the difference between HIV and Aids. 'If I'm not ill, I'm not infected'." The Belgian MSF doctor took over a programme to prevent mother-child transmission that had been abandoned by medical staff with no faith in antiretrovirals; following trials, he was able to offer treatment to the most seriously ill patients. "Two hundred and twenty people are now receiving treatment. Every month a committee of doctors and local people enrols about 15 'clients' after assessing their state of health, their attendance record at the clinic and their family responsibilities, etc."

Goemaere shows us two boxes of tablets - nevirapine 200 mg and a lamivudine 150 mg-zidovudine 300 mg mixture. The label carries the Far-Manguinhos brand name: these are the generics that TAC activists import from Brazil. "Some patients have come back from hell. Their CD4 rate had fallen to 15 (the critical threshold is 200). Their viral load can't be detected now. This week we're celebrating a year's treatment. Without it they'd all be dead. If it works here it can work anywhere!" the doctor says with satisfaction. "But the most important thing is its impact on the community. The HIV Positive T-shirt has become a fashion accessory in Khayelitsha. People are talking more openly and there are 22 support groups." Aware that they are breaking new ground, most of Khayelitsha's "clients" are involved in prevention work in schools and factories or on television.

Will economic and health apartheid result in another popular uprising in South Africa? Many believe it has already begun and that the TAC experience will serve as a catalyst for the country's social reconstruction. Epidemiologist Quarraisha Abdool Karim coordinated the fight against Aids when Nelson Mandela was president. Speaking at the Durban school of medicine, she said she was now optimistic for the first time. "You don't get used to seeing the people you've fought for dying. But treatments now have fewer side effects and are much cheaper. We're training a lot of students and a vaccine is down the road." Sooner or later, maybe in 10 years' time, we will enter the post-Aids era.

(1) On the links between rape and HIV see Charlene Smith's courageous story, Proud of Me, Penguin Books, Johannesburg, 2001.

(2) Projections of the consequences of the epidemic, see Impending Catastrophe Revisited, a 36-page document published by loveLife - Henry J Kaiser Family Foundation, Johannesburg, 2001.

(3) See the interview with Zackie Achmat published in Vacarme, Paris, April 2002.

(4) Belinda Beresford, "The Heart of the Aids Protest", The Mail and Guardian, Johannesburg, 12-18 April 2002.

Translated by Malcolm Greenwood

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