Has upcoming poll yielded full roll-out?

Virginia van der Vliet traces the history of ANC denial and procrastination on HIV/Aids.

Summary - In the jubilation that followed the 1994 election, many were optimistic that the new government would take decisive action against HIV-Aids. A national plan had been drawn up in 1992 by a team that included Dr Nkosazana Dlamini-Zuma and Dr Manto Tshabalala-Msimang. Most of it could have been implemented within two years. Instead, the plan was largely ignored. HIV infection in antenatal clinics increased from 2,2 per cent in 1992 to 26,5 per cent in 2002, and an estimated 5,3 million South Africans are now HIV-positive. With no cure in sight, their only hope is treatment with antiretroviral (ARV) drugs. Yet these drugs have become highly contentious. Influenced by dissident Aids theorists, president Mbeki and health minister Dr Tshabala-Msimang believe that Aids is caused by poverty and malnutrition, not by the HI virus, and that antiretroviral drugs are toxic. As a result, they have repeatedly delayed the implementation of ARV programmes. Government inaction has led to increasing despair among health professionals and Aids activists, and to growing dissatisfaction within ANC ranks. In 2003 an HSRC poll showed that 95 per cent of South Africans believed ARVs should be provided, and ANC and Cosatu members began to urge a different approach. That year the government released the report of a task team established to investigate ARV provision. The report advocated a cautious, incremental approach to implementation with “six to nine months of preparatory activities”. But while this fine-tuning is going on, over 600 people are dying daily. Aids activists are impatient for action, and some believe that Tshabalala-Msimang will do everything in her power to delay it. She refuses to say when roll-out will begin, but states that it must occur simultaneously throughout the country. However, this is impossible. Treatment must begin wherever capacity exists. The longer implementation is delayed, the greater the risk that our health services will be unable to cope with it: already, 46 per cent of patients and 16 per cent of health workers in public hospitals are HIV-positive. Nevertheless, our health system is more robust than those of other African countries that have started to offer ARVs. Patients on ARVs are easier to treat than those with recurrent opportunistic infections. Also, as ARV treatment turns HIV-Aids into a manageable disease rather than a death sentence, demoralised health workers will be reinvigorated. Providing ARVs is not without risks. Bad implementation could lead to poor adherence to drug regimens and create drug-resistant HIV strains. But the alternative to a controlled public-sector programme is ‘therapeutic anarchy’ in which desperate people grab whatever drugs they can. One major problem is the shortage of health personnel. The ARV programme will therefore have to depend to a large extent on volunteers; the TAC has already offered the assistance of its 7000 volunteer workers. Stephen Lewis, UN Special Envoy on HIV-Aids in Africa, believes that if the government decides to provide ARVs, the “response of the world would be overwhelming”. Whether it embraces the moment or backs away yet again depends in large part on the health minister and the president.

South Africa’s transition to democracy in 1994 was greeted with general jubilation. Among those concerned with the country’s HIV/Aids epidemic, there was also relief that a credible, legitimate government would now be able to tackle the growing problem.

A comprehensive national Aids plan had been drawn up in 1992 by a team representing a wide spectrum of Aids interests, from government and political parties to trade unions, business, civic organizations and medical professionals. Two of the seven-member drafting team — Dr Nkosazana Dlamini-Zuma and Dr Manto Tshabalala-Msimang — would go on to become consecutive health ministers in a changed South Africa. Mary Crewe, a key player in the drafting process, wrote that the plan was “a reflection of years of experience” and that the bulk of the plan “could have been effectively implemented in less than two years”. Many, she said, eagerly anticipated that South Africa would again “astonish the world”, this time with its successful handling of Aids.

Instead, the plan went largely unimplemented, and South Africa has seen HIV prevalence in annual antenatal clinic surveys climb from 2,2 per cent in 1992 to 26,5 per cent in 2002, with no real sign that it is about to turn around. The department of health estimates that 5,3 million of the country’s 45 million people are now infected. With no cure in sight, their only hope is treatment with antiretroviral (ARV) drugs. Without such treatment, hundreds of thousands of young adults will continue to die each year, with intolerable costs to our economy, our health system, indeed the very texture of our society.

Antiretroviral drugs have been a constant source of contention in South Africa. In October 1998, Zuma, then Minister of Health, announced that it had been decided not to make AZT (zidovudine), a drug used to cut the rate of mother-to-child transmission of HIV, available to pregnant women in state clinics. The drug, plus the testing, counselling, technical support and formula feed that the initiative required, were, she said, too expensive to contemplate. In the anger and frustration that followed this decision, the Treatment Action Campaign (TAC) was born. Calling for stepped up prevention, and access to treatment for all, it has been a thorn in the government’s side ever since.

With the 1999 election, Thabo Mbeki became president, made Zuma minister of foreign affairs, and appointed Tshabalala-Msimang minister of health. After the growing controversies surrounding Zuma, Msimang’s initial open and robust approach to tackling the Aids issue was greeted with enthusiasm by anti-Aids activists. Then, in October 1999, Mbeki, in an address to the National Council of Provinces, informed members that his internet research had revealed that AZT was toxic. Within weeks, Tshabalala-Msimang was saying that AZT weakened the immune system and could lead to disabling ‘mutations’ in babies.

Such beliefs were fuelled by dissident Aids theorists, appointed by Mbeki to his Presidential Advisory Panel, set up in early 2000, which questioned everything about the epidemic — whether HIV existed, whether it caused Aids, whether Aids was actually just another name for Africa’s poverty-driven disease burden. In this climate, ARVs were dismissed as at best worthless quackery enriching drug manufacturers, at worst, lethal substances designed to poison black people. Those advocating the use of such drugs, whether medical professionals or TAC activists, were likely to be accused of operating as “salespersons” for the pharmaceutical industry. Needless to say, the gap between those holding such views and those dealing with the reality of Aids grew daily wider.

It narrowed briefly in April 2001, when the TAC helped government win a court case against the pharmaceutical industry. The industry, concerned about intellectual property rights, had challenged government legislation, drawn up in 1997, which would allow it to use parallel imports and compulsory licensing to access cheaper drugs. Originally a case about the dry legal issues surrounding patent rights, Aids activists, led by the TAC, dramatically transformed it into a parallel moral and ethical case about access to lifesaving drugs. Under the glare of the international spotlight, the industry withdrew its case. Elation, however, was short-lived. At a press conference after the case, Tshabalala-Msimang announced that Aids drugs remained unaffordable, the infrastructure to distribute them was lacking, and there were still concerns about their safety.

Even the most basic provision of ARVs, the single dose of nevirapine to mother and infant, believed to cut mother-to-child transmission by about 50 per cent, had to be wrung out of the government in an acrimonious court case, which went all the way up to the Constitutional Court, led by the TAC.

Hopes for a change in government thinking flared again in April 2002 with a cabinet statement on expanding the nevirapine programme, providing ARV prophylaxis against HIV for rape survivors, and conceding that ARVs could “improve the quality of life” in certain circumstances. Despite the general enthusiastic welcome this “turnaround” received, little came of it, and there were those who wondered whether it was not just a careful refurbishing of government’s battered image. If Mbeki was to appear as a credible leader on the international stage, he had to avoid the situation where, for instance, journalists at press conferences ignored his views on Nepad and Africa’s recovery plan, and went straight for the Aids jugular.

Increasingly, his ANC and Cosatu constituencies were also urging a different approach. The Nelson Mandela/Human Sciences Research Council (HSRC) survey of households countrywide in 2002 showed that 95 per cent agreed that ARVs should be provided.

In October 2002, the government announced that it had set up a task team, comprising department of health and national treasury officials to investigate “the conditions that would make it feasible and effective to use ARVs in the public sector”.

The team was deliberating against a rising tide of protest from Aids activists at government’s failure to develop a treatment plan. The task team report, expected in April 2002, had still not been made public by August, when a major Aids conference took place in Durban. Some irrepressible optimists had hoped that Tshabalala-Msimang, who opened the conference, might use the spotlight to pull an antiretroviral rabbit out of the hat; instead she talked of the difficulties of implementing ARV treatment.

Just two days later, on the 8th of August, after a special cabinet meeting, The Report of the Joint Health and Treasury Task Team was released. It is a mystery why the minister did not release it at the conference. It would have drawn some of the sting out of the many attacks government faced in Durban, and taken the edge off some of the gloomy facts presented to the over 2000 delegates.

The report explored the annual cost of four different treatment scenarios between 2003 and 2010 — providing no ARVs, or ARVs for 20 per cent, 50 per cent or 100 per cent of those who needed them. For 2003, 100 per cent cover would cost R5,6 to R5,7 billion. By 2010, this would rise to R16,9 to R21,4 billion, and defer the 1 721 000 deaths of those who would otherwise have died prior to 2010. It would also defer orphanhood for 860 000 children (see www.gov.za under reports for details).

The report was cautious on when the implementation of ARV treatment would begin. While the cabinet meeting in August 2003 stressed the urgency of the issue, and expected a detailed operational plan from the health department by the end of September, the task team talked of incremental implementation, with the numbers of patients growing “fairly slowly” in the early years. Once the decision to introduce ARVs was made the team foresaw “six to nine months of preparatory activities” being required before the first patients would actually be treated. In its conclusions, the report cautioned against creating “false expectations’ or “engaging in mutually debilitating contestation about what can be achieved by when”.

The patience the task team advocates is unlikely to be forthcoming, considering the years of delays in treatment they have faced. The TAC estimates that between 400 000 and 500 000 people are currently in need of ARVs. If they must wait nine months for treatment, hundreds of thousands could be dead. The TAC has suggested a goal of 200 000 on treatment by March 2005.

Despite a complex brief from the department of health, the planning task team, under the chairmanship of Dr Anthony Mbewu, executive director of South Africa’s Medical Research Council, and assisted by a team of experts from the Clinton Foundation Aids Initiative, founded by former US president Bill Clinton, managed to present a report to the minister of health by the 30th September deadline.

No details of the planning report had been made public by mid-October. The health department, in discussing the report with the team, identified areas it felt needed strengthening and improvement. Health spokesperson, Sibani Mngadi, said these areas “relate to, amongst others, human resource requirements, capacity in different provinces, and ensuring that the proposed antiretroviral programme becomes part of the current health services, not a vertical programme”. He added that this critical project was regarded as “a work in progress that will improve with the inputs received through government policy formulation processes”.

Again, there is frustration that while all this fine-tuning is going on, over 600 people are dying each day. There are fears that a similar lack of urgency will obstruct the implementation of ARV treatment. If the plan is to work, it will require dedication, even passion, from whoever is in the driver’s seat. Given Tshabalala-Msimang’s track record, many doubt that she is the right person for the job. After the cabinet meeting at which the instruction to set up an implementation planning team was given, she was said to have been despondent, and at a Women’s Day gathering repeatedly said: “I am not the one making the decisions; the cabinet decides collectively.” (Mail and Guardian 15th to 21st August 2003.)

Cynics — and the government stance on Aids has been a fertile breeding ground for the species — have suggested that the prospect of an election, which must be held before the beginning of September next year, has concentrated politicians’ minds. While issues like the lack of jobs, houses and land can be dealt with in debate, there is no way the government can explain away its failures on the Aids front. Voters, unlike the President, know many people close to them who are dying of Aids.

So when can we realistically expect the roll-out of ARVs to begin? The operational planning task team is once again hard at work making the changes the minister asked for. The minister has refused to speculate about when the roll-out might begin, but Mngadi has said he did not see it happening before the end of the year. Some, like Mike Waters, spokesperson for the Democratic Alliance, believe the minister will do everything in her power to delay it.

She will face increasingly powerful opposition to such a stance. Ira Magaziner, chairman of the Clinton Foundation Aids Initiative and advisor to the government implementation task team, believes the roll-out could begin almost immediately. Although it could not “all happen on day one”, a week by week roll-out plan would be outlined, he said — a position contrary to that of the minister, who has said that if drugs are to be provided, it must happen “simultaneously” throughout the country.

This will not be possible, and hopefully she will not use this perverse egalitarianism to delay drug provision. Any treatment plan must start where capacity exists. Economics professor Nicoli Nattress writes: “Ensuring more equitable access to Aids treatment is a longer term goal and one that can only be achieved through the steady expansion and improvement of the health service.”

If treatment is further delayed, the health service, already groaning under the additional burden Aids creates, will grow increasingly less able to contemplate introducing it. At the Durban conference, Olive Shisana, the HSRC Aids chief, presented a picture of a health system under siege. Research showed 46 per cent of patients in public hospitals were infected with HIV, and edging out non-HIV patients. 400 000 new AIDS patients would be seeking treatment next year. In public hospitals, 16 per cent of health workers were themselves infected. While ARVs would not cure those infected, it would keep them healthier, out of hospital, back at work, and able to look after their families, as drug provision in Brazil has demonstrated. As treatment turns HIV/Aids into a manageable disease, people will become more amenable to testing, and the stigma surrounding the disease will diminish. Despite the difficulties of ARV use, many medical professionals say it is easier to manage a patient on antiretrovirals, than to cope with the ‘revolving door’ of clearing up one opportunistic infection, just to be faced with another. Whatever drug treatment costs must be set off against these gains.

For health workers who have faced the relentless assignment of shepherding young people to an early grave, the gift of ARVs might be just the morale boost they need. Kerry Cullinan of Health e-News, quotes Dr Douglas Wilson, of Greys Hospital in Pietermaritzburg: “This is a once in a lifetime opportunity. What is happening in South Africa has never happened anywhere else in the world. In the future, health workers should look back on this roll-out as the highlight of their professional careers.”

Whatever the limitations of South Africa’s health system it is immensely more robust than many other African states such as Malawi, Uganda, Cameroon, Mozambique and Rwanda, which are starting to offer ARVs in their public health facilities. The ARV programmes will in turn hopefully help upgrade the systems in general. South Africa, with its large market will be in a position to negotiate good drug deals, or, as generic manufacturing gets underway, provide cheaper alternatives for our own needs and, if the recent negotiations at the World Trade Organisation meetings bear fruit, for those countries which cannot manufacture for themselves. Already, triple therapy combinations are available for just over $200 a year. Good communications networks promise that doctors away from main centres will be able to get information on drugs and side-effects by e-mail or off the internet, and patients with cell phones can be reminded to take their medication. Cheaper tests for HIV, viral load and other monitoring are in the pipeline.

While it offers enormous opportunities to revitalize the health sector, and to unleash innovative responses to treatment demands, providing ARVs is not without risks. The most commonly cited is that badly implemented, it could lead to poor adherence to drug regimens, and create drug resistant HIV strains, as has happened with tuberculosis. To date, pilot projects in South Africa, run by, for instance, Medicins sans Frontieres, have produced excellent results with very high treatment adherence, even with patients living under appalling conditions. Whether these results can be scaled up to hundreds of thousands of patients, not carefully selected for drug compliance or supportive networks, with a fair chance they will face poorly controlled drug supplies, and inadequate monitoring and treatment for side effects, remains to be seen.

But to have a situation where desperate people will grab whatever drugs they can lay their hands on is also no solution. They become prey to illegal and untrained vendors, to peddlers of fake and stolen drugs. They use private providers, charging exorbitant amounts, often taking inadequate doses, or resorting to useless monotherapy, because they cannot afford more, or they use ‘mix and match’ therapy, because erratic drug supplies make consistent regimens impossible — the kind of situation Dr Paul Farmer, professor of social medicine at Harvard University has called ‘therapeutic anarchy’. As drugs become more available, if we are to avoid such anarchy, a controlled public sector programme is imperative.

One of the biggest challenges will undoubtedly be the shortage of health personnel, and, critically, those trained to administer ARV treatment. In the years of bickering over the drugs themselves, little has been done to train staff for the day when ARVs, inevitably, would come. Answering a question in Parliament recently, the minister of health said South Africa had 31 000 nursing posts vacant, many in under-served areas that find it difficult to attract staff. Only 9183 nurses completed training in 2002, and South Africa continually loses staff to overseas poaching, where salaries and working conditions are better. The August task team report devotes a lot of attention to training staff. Sister Sue Roberts, head nurse of the Helen Joseph HIV/Aids Clinic in Johannesburg, told a journalist of the UN’s and Irin News that her overburdened clinic would not have time to take advantage of such training. The clinic has just three staff members, supported by volunteers. Roberts acknowledged that a treatment plan would demand “a lot of extra work” for nursing staff. “We will just have to make more use of volunteers,” she said. “We have no shortage of those.”

If the ARV programme is to blossom, rather than wither on some bureaucratic vine, the minister would be well advised to take advantage of the huge reservoirs of experience, expertise and goodwill such a development could tap, here and abroad. Her old enemy, the TAC, for instance, has offered the assistance of its 7000 active volunteers in rural and urban areas. In addition, their links into trade unions, faith-based organisations, the health professions and NGOs/CBOs, and to international organizations that have offered practical assistance, could be a valuable resource. If government is serious about an all out effort to provide treatment, everyone, from the corporate world to traditional healers, could have a part to play. Stephen Lewis, the UN Special Envoy on HIV/Aids to Africa, believes that if South Africa decides to provide antiretrovirals, “the response of the world would be overwhelming”.

Whether government will embrace the moment, or once more back away, procrastinate, and face increasing anger and bitterness, depends in large part on the minister of health — and the president.