Dealing with Aids: A work in progress

Summary - The scale of the HIV/Aids epidemic predicted by actuarial models is so appalling that it is not surprising that many people, notably president Mbeki and Rian Malan, have responded with scepticism or denial. A major problem is that early models were based primarily on data compiled on pregnant women, who had by definition practised ‘unsafe’ sex. Recently, however, mortality statistics have provided stark additional evidence of the epidemic’s rising toll. Between 1998 and 2003, adult deaths increased by 68 per cent. Allowing for population growth and improved registration practices, this still indicates a real increase of more than 40 per cent. For women aged 20-49 the increase was 190 per cent (more than 150 per cent in real terms). Clearly, the need for massive treatment programmes has become increasingly urgent. Thus the government’s ‘Operational plan for HIV and Aids care and treatment’, announced in November 2003, was greeted with enthusiasm. Frustration set in, however, when tenders for the supply of antiretrovirals (ARVs) were called for only three months later. The Treatment Action Campaign threatened once again to take the health minister to court. She averted a legal confrontation by agreeing to accredit some facilities and provide them with ARVs as a matter of urgency. Within days the department named 27 facilities that could begin enrolling patients. This involves medical examinations, the provision of nutritional supplements, complementary and traditional medicines, and an education programme to ensure that those who ‘prefer antiretroviral therapy’ adhere to treatment. The wording raises the question: How will patients decide they ‘prefer’ ARVs – and to what? Meanwhile, the Western Cape began offering treatment at 16 sites without waiting for approval. While it is probably better prepared than other provinces, there are problems. Newspaper articles reported recently that Cape Town clinics were running out of drugs and sending patients with drug-dependent conditions like hypertension home with IOU slips for the missing medicines. For a disease like HIV/Aids, where inconsistent adherence to a medication regimen is a sure recipe for the development of drug-resistant viral strains, such reports are extremely alarming. KZN’s health minister Zweli Mkhize also warned that his province’s treatment capacity is threatened by a shortage of 8 000 doctors and nurses. In Gauteng, which has an estimated 1,6 million infected people and 160 000 in urgent need of ARVs, the planned rollout of 500 new patients a week in five hospitals barely scratches the surface, yet here too, resources are strained, with facilities struggling to cope with staff and capital shortages. Suspicions about the commitment of the president and the health minister remain, says the TAC’s Mark Heywood, and vigilance remains critical, especially now that the pressure to perform for election purposes has ended.

The arrival of a new, lethal, sexually transmitted infectious disease in the closing decades of the twentieth century was as unexpected as it was alarming. The conflict between those who saw it as a public health problem, and those who conceived of it in human rights terms, catapulted it immediately into the realm of the political, and there it has remained. In South Africa, where its arrival coincided with a turbulent political transition, and social circumstances likely to provoke racial and sexual stereotyping, dealing rationally with HIV/Aids was never going to be easy.

Even the basic statistical facts are matters for dispute. While actuaries and demographers have worked to refine their models over the years as data have accumulated, the scale of the epidemic they depict still invites disbelief. For those who reject the prevailing Afro-pessimism, or indeed have faith in an African renaissance, the implications of the epidemic are appalling, so it is not surprising that they should question, or even deny, the figures.

Actuaries would be the first to admit that their models are estimates based on the best data available, and not cast in stone. Some South Africans, from president Thabo Mbeki to author Rian Malan, have maintained that the statistics are exaggerated. Well-known 'scenario guru' Clem Sunter, in an interview with Chris Barron, responds, "Are the stats overcooked? My answer is we don't know. But we do know that there are some very nasty things happening on the ground." (Sunday Times Business Times, 4 April 2004.)

These 'nasty things' are increasingly appearing in hard data from state sources. Up until recently, the most comprehensive statistical models and estimates we had were based on the annual antenatal HIV survey, conducted in public health facilities since 1990. Since the surveys sampled pregnant women - by definition only women of childbearing age, who had practised 'unsafe' sex - they could not claim to reflect the entire adult population, but these statistics remain the basis for our most reliable model of HIV prevalence.

In the last three years, however, mortality statistics, looking at changing profiles of the number of deaths and the age groups affected, and at the causes of death, have provided stark additional evidence of the rising toll of the Aids epidemic. The most recent example, by Debbie Bradshaw, of the Medical Research Council, Rob Dorrington, of the Centre for Actuarial Research at the University of Cape Town, and others, analyses the data on actual adult deaths registered in South Africa from 1998 until 2003. (www.mrc.ac.az/bod/AIDSdeathsSAMJ.pdf)

The number of adult deaths over this period increased by 68 per cent. This could be partly attributed to population growth, partly to better registration practices, but even once these elements had been factored in, the authors believe there was a real increase of more than 40 per cent. In the case of women aged 20-49 years the increase in registered deaths was 190 per cent, which the authors calculate represents a real increase in mortality of more than 150 per cent. They conclude that whatever the precise numbers of Aids deaths might be, the massive rise in adult deaths over the period 1998-2003, and the age at which the additional deaths occurred, means "they can largely be attributed to HIV/Aids". The authors contend further that the rises in the mortality rate "should renew government's resolve to implement the comprehensive plan to prevent and treat HIV/Aids as rapidly as possible".

While prevention - keeping the uninfected majority virus-free - is obviously the first prize, there is little evidence that these efforts are about to turn the tide, apart from slight declines in HIV rates in women under 20. If the social, healthcare and economic consequences of the epidemic are to be mitigated, the need for massive treatment programmes, including the provision of antiretroviral drugs, or ARVs as they are popularly known, has become increasingly urgent. So when the government announced its Operational Plan for HIV and Aids Care and Treatment for South Africa on 19 November 2003, it was greeted with enthusiasm. (For details see www.gov.za/reports/2003/aidsoperationalplan.pdf)

The plan sets out a detailed budget for the programme to cover everything from new staff and laboratory testing, to capital investments, nutrition and antiretroviral (ARV) drugs. It also specified a timetable for patient numbers on ARV treatment - from 53 000 in financial year 2003/04, to 1 470 510 in 2008/09.

Enthusiasm, however, turned to frustration and anger (and even suspicion that the whole thing was simply a government ploy aimed at winning support during the national election on 14 April 2004), as the process dragged on. Tenders for the supply of ARV drugs, critical to the treatment rollout, were only called for in February, with the department of health indicating that the drugs would probably only be available in July.

The Western Cape had already begun treating patients in public health facilities, using its own funds and working with aid groups, while facilities in some other provinces were ready to go - all they needed were the drugs. The Treatment Action Campaign (TAC), an activist group which had waged a relentless battle to get the government to provide access to ARVs, first for the prevention of mother-to-child transmission of HIV, but then for more general access, threatened once again to take the minister of health, Dr Manto Tshabalala-Msimang, to court.

The minister averted a court confrontation by announcing that she and the provincial health MECs had decided that there should be urgent accreditation of facilities that met the requirements set out in the operational plan. On the provision of ARVs, it was decided that "interim measures should be explored and used in situations where sites were fully accredited (though) the national drug tender was still in process". Funding for all elements of the operational plan via conditional grants to provincial health departments would become available from April 2004. (See www.gov.za statements, 24 March 2004.)

While some fretted that the phrase 'should be explored' seemed to leave a loophole for yet further procrastination, the TAC welcomed the announcement. But they also pointed out that thousands of lives could have been saved if this decision had been taken in November when the cabinet accepted the plan. The TAC newsletter of 25 March noted too that the minister had still not responded to their request of 20 February to release details of the implementation timetable contained in the operational plan; they warned that if she failed to do so, they would be forced to use the provision of the Access to Information Act to compel her to make it available. It is unfortunate that the minister appears to need this kind of threat to goad her into what passes for action, not least because every time it becomes necessary, it drives a further wedge between her and an organization which could be her most useful ally.

As a result, there is an understandable wariness in the TAC's response to the minister's decision. They have been jilted at the altar of common cause too often in the past. What looked like agreements have turned out to be riddled with delaying tactics, hidden agendas and plain bad faith. In a BBC news interview, Jonathan Berger of the Aids Law Project, the TAC's legal representatives, said that while plans to take the minister to court have been put on hold, they would be "watching very carefully, and if she doesn't follow through on this commitment, we will reassess".

Within days of the minister's response to the TAC, the department of health announced the names of 27 accredited HIV and Aids service points which met the basic requirements of the Operational Plan, and could begin enrolling patients. (See www.gov.za statements 31 March 2004.) This would require clinical testing and medical examination, the provision of "nutritional and micronutrient supplementations," and "complementary and traditional medicines" to delay the progression of the disease, and "ensuring that patients who qualify and prefer antiretroviral therapy are prepared for treatment, which means undergoing a treatment literacy programme to ensure that when they commence treatment, they will adhere to treatment requirements". (Again, the wording of this raises questions. How will patients decide that they 'prefer' antiretroviral therapy - and to what?)

Western Cape facilities were to be assessed for accreditation in the second week in April, but the province did not wait for the minister's say-so. According to Dr Fareed Abdullah, head of the Western Cape Aids Programme, there are currently 16 sites where treatment is available, and a further four will be operational shortly. While the majority are in the Cape Town metropolitan area, there are also sites at Paarl, Worcester, George and Beaufort West, and a Knysna site will be opened soon. With an estimated 2 700 people on ARVs, and the prospect of substantial donor funding, including R465 million spread over five years from the Global Aids Fund, the Western Cape is probably better prepared to deliver on the promise of treatment than other provinces.

Yet even there, health delivery faces problems. A recent press report, for instance, talked of clinics across Cape Town running out of drugs and sending patients with drug-dependent, life-threatening conditions, like asthma, diabetes and hypertension, home without drugs, often with IOU slips for the missing medicines. It is a recurrent problem which in the past had been blamed on fraud, corruption and theft syndicates - indeed some felt that stringent checks that had since been built into the system were now delaying drug delivery - but Vonita Thompson, responsible for the provincial health departments' pharmacy services, said delays in tenders for national drug supplies were also to blame. (Cape Times, 7 April 2004) For a disease like HIV/Aids, where inconsistent adherence to a medication regimen is the surest recipe for the development of drug-resistant viral strains, such reports set alarm bells ringing.

KwaZulu-Natal health MEC Zweli Mkhize, addressing a gathering in Durban on 2 April, also issued warnings about the province's treatment capacity. Seven hospitals in KZN had been dispensing HIV/AIDS drugs since the beginning of March, largely thanks to funds from the Global Aids Fund and the Church of Scotland Hospital, and 18 more centres were expected to be accredited to provide treatment by June. But Mkhize warns that with public health facilities short of 6000 nurses and 2000 doctors, there were problems ahead. Recruiting staff is difficult. "If you don't have the staff, [the programme] will start sagging," he said. (Sunday Tribune, 4 April 2004)

The November cabinet decision, even though it has seen precious few people actually receiving ARVs, did serve to draw the sting from HIV/Aids as an election issue. Voters challenging the government stance could be reassured that treatment was on the way. In the two provinces where the ANC's grip was least secure, the Western Cape and KwaZulu-Natal, health authority initiatives have pre-empted the minister's glacial rollout delivery.

Only Gauteng seems to have used the rollout as a positive election ploy. Gauteng premier Mbhazima Shilowa and his health MEC, Dr Gwen Ramokgopa, made well-publicised visits to three of Gauteng's five sites on 1 April. With the number of infected in the province estimated at up to 1,6 million, and 160 000 in urgent need of ARVs, the planned rollout to perhaps 500 new patients a week in the five hospitals which began treatment on that day, hardly scratches the surface of the problem.

Yet even at this level, the programme will strain resources. In a series of interviews before the rollout began, Health-e news service's Khopotso Bodibe spoke to doctors at Chris Hani Baragwanath and Johannesburg General hospitals. In health facilities already under stress with staff and capital shortages, they were excited, but apprehensive, about taking on the rollout. As Dr Tammy Meyers of the Harriet Shezi Children's Clinic at Baragwanath said: "We're looking at a problematic health service and we're trying to start this programme at the same time."

Dr Francois Venter of the Johannesburg General hospital told Bodibe: "Nobody's ever done it on this scale before, so we're pretty much winging it. We're not sure what's going to happen, we will see."

On the first day of Gauteng's programme, just 41 patients including 22 children, received treatment. Drug availability was only one aspect of getting people on to treatment. As Professor Jeffrey Wing of Johannesburg General hospital pointed out, the protocol at the Gauteng sites would be almost as strict as for clinical studies, given the fears that poor adherence would quickly lead to the development of drug-resistant HIV. Gauteng aims to be treating 10 000 patients at 23 sites by April 2005.

Although it got off to a slow start, Popo Maja, Gauteng's health department spokesman, spoke of the festive atmosphere at hospitals he visited. "It was quite overwhelming," he said. "There was a lot of excitement, a lot of enthusiasm by clinicians and nurses working there, and also counsellors. It was really, really great."

An ideal pre-election photo opportunity, in fact. One that makes it all the odder that neither the minister of health nor president Mbeki were at the Gauteng launch. Mbeki has said little on the issue. At a Kimberley election campaign meeting, though, he justified the government's foot-dragging around implementing the ARV programme, saying it would have been "thoroughly irresponsible" to rush the rollout - just as it was irresponsible to build false hopes around ARVs. "We give people hope that ARVs kill the HI virus. Well, they do not. Why do we tell them that? Why do we do this?" (Cape Times, 31 March 2004)

It is speeches like this - and the unconscionable delays in ARV rollout - that worry the TAC's Mark Heywood. "All we can do is read the signals, and unfortunately the signals still cast suspicion on the commitment of the minister and the president."

So vigilance will remain critical - especially once the pressure to perform for election purposes ends after 14 April.