The government will face legal action following its failure to introduce measures to prevent mother-to-child transmission of HIV
Timothy Trengove-Jones The Aids Treatment Action Campaign (Atac) has announced that it plans to proceed with legal action against the government. The campaign’s case will challenge the government’s refusal to imple- ment programmes to prevent the transmission of HIV from HIV- positive mothers to their children. For those who believe that this latest and most extreme evidence of the growing rift between HIV/Aids organisations and the government is a sign of undue belligerence, think again. In our contemporary culture we are enjoined to remember our histories and to relish our new-found democratic citizenship. An appreciation of Atac’s decision demands that we recall key aspects of our recent history and affirm the rights and duties that inhere in this history. Atac’s raison d’^tre is the provision of affordable and accessible treatments for those with HIV/Aids. In March last year, in one of its first public demonstrations, supporters lay down in the streets outside Chris Hani Baragwanath hospital to promote these claims. Most specifically, the organisation called for the introduction of preventive measures to contain mother-to- child transmission. Between January and March a petition garnered 50 000 signatures in support of this intervention. In this brief period, and in conditions where open discussion of HIV/Aids is still far from easy, this represents a considerable index of support. Shortly afterwards, on April 20, Atac met with minister of health Nkosazana Dlamini- Zuma to discuss the matter. It was agreed that there would be a joint platform to campaign for the reduction of the costs of drugs. More recently Atac has had meetings with Minister of Health Manto Tshabalala- Msimang and has been assured that the government intends implementing mother-to- child-transmission therapies but wants more information.
Atac took all these assurances in good faith. There was the government delegation to Uganda in July 1999 where, inter alia, the successful use of Nevirapine for mother-to-child-transmission prophylaxis was confirmed. Then the waters were muddied with the still-bewildering remarks by President Thabo Mbeki about the toxicity of AZT and decisions which seemed to call in question the relationship between HIV and Aids. Increasingly, the government rhetoric insisted on toxicity, unaffordability and the need for further research. Amid mounting controversy, the Nevirapine trials at Baragwanath went ahead with the promise that the results would be released at the Aids 2000 conference in July this year. Out of an often exasperating convention, one ray of hope was the encouraging news from Dr Glenda Gray and her research team. Nevirapine worked and cost only R21 a patient. In the same week the drug’s manufacturers agreed to provide it free for the next five years. The government’s response is shameful. There was whingeing about not being informed of the drug company’s decision in advance. Predictably enough, there was the call for more research. Then the issue of resistance was raised. It was and remains hard not to feel that there is massive intransigence and obstructionism. The decision to proceed against the government stems from this history. And, given the facts, it’s hard not to agree with Mark Heyward of Atac and the Wits Aids Law Project that this move is “all that’s left to us”. Heyward stresses that had there been significant evidence of “a willingness to tackle implementation issues”, then things could be different. However, he believes that “reasons [to resist implementation] are being invented now”. This impatience can be further contextualised by turning to Gray and the Nevirapine trials at Chris Hani Baragwanath. Speaking at Wits on July 14 – the week of the Aids 2000 conference – she announced “good news for South Africa and the world”. “We have,” she said, “a vaccine to prevent mother-to-child transmission.” She was also justifiably proud – and strategic – in insisting that the treatment was confirmed by “studies run in Africa by African scientists”. This euphoria has been short-lived, with the government agreeing only to extend pilot projects on the drug. Speaking this week Gray confirmed that “the data is clear, both from the South African and Uganda trials: Nevirapine is safe and effective”. On the matter of resistance, she insisted that “by 12 months there was no resistance seen”. Virologists she has consulted report that the question of resistance is, in this context, “irrelevant”. “The people who make policy need to see this,” says Gray. One way of getting them to is, it’s hoped, the proposed legal action. Heyward says the case will rely on a number of arguments based on human rights, the best interests of the child, equality and dignity (“It is not dignified to look after a dying child with a preventable illness.”). Currently the government refuses to implement a national Nevirapine programme because the drug is not yet registered with the Medicines Control Council. Once the drug is registered, this objection would fall away. However, one notes that two weeks back, Tshabalala-Msimang advised the council not to feel pressured in making its decision. Given recent histories it’s difficult not to read this cynically as being itself a form of pressure. On the one hand it is lamentable that we should reach a position where the government should be charged with neglecting the interests of its citizens. On the other, the proposed legal action will be a further test of the practical efficacy of our much-praised Constitution and testimony to the true vitality of our democracy. Crucially, we have a test case for measuring how committed the government really is to promoting the interests, rights and equality of women. One begins to feel a yawning gap between the values enshrined in the Constitution and the lived realities of citizens’ lives. As this latest saga unfolds, we should have a dramatic instance of constitutionalism in action. Section 9 of the Bill of Rights accords pregnant women “the full and equal enjoyment of all rights and freedoms”. Section 12 includes the “right to make decisions concerning reproduction” in “the right to freedom and security of the person”. Furthermore, section 27 provides “the right to access health-care services including reproductive health”. This last right is “subject to available resources”. Nevirapine is available free of charge for the next five years. Issues of cost effectiveness and affordability are now more than ever exposed as red herrings. Given the already much-rehearsed evidence on cost-effectiveness and affordability any government defence based on “available resources” is unlikely to succeed. Yet still the government stalls. Ask any informed person why and the words that recur are “unintelligible,” “irrational,” “incomprehensible”. As Gray put it: “I just don’t know any more.” The president has recently begun to apply Disraeli’s “two nations” idiom to South Africa. Given current HIV/Aids statistics, it seems likely that a good number of government members will be living with the virus. It is also likely that they will be privately availing themselves of the very medications that, in the president’s words, are “harmful to health”. If this is the case, it is scandalous and puts a grotesque spin on arguments about anti-retrovirals and the two nations debate. In their recent book on HIV/Aids in South Africa, Clem Sunter and Alan Whiteside claim that one reason for the high transmission rates of HIV in South Africa is the virtual absence of civil society. Atac’s action shows civil society recon- figuring itself across the lines of class, race, gender and even political affiliations. Shift the lens slightly, and what might appear to be highly divisive is, in fact, evidence of a new and concerned synthesis. If this case goes ahead, we might have the opportunity of seeing the law serving the interests of not only the country, but most particularly the poor and disempowered.
In the bleak days of intensifying crisis, Atac’s courageous move is early evidence of the development of a concerned population willing to tell this country that if the government won’t take the lead in addressing what the government itself sees as our pre-eminent emergency, there are the skills and the means to force our leaders to realise their obligations. Seen in this light the spectacle is more than edifying. Timothy Trengove-Jones is an Aids researcher and academic