South Africa’s response to HIV/AIDS illustrates all too well how government policy is seldom evidence based. For World AIDS Day, Agulhas Director Nigel Thornton reflects on the response to HIV/AIDS over the last three decades.
Thirty years ago, in what was then called Pietersburg in the Northern Transvaal, I was only just holding onto the speaker’s Afrikaans. “This is a result of their own sin”, the leader of the largest Dutch Reformed Church in town declaimed. “And this has made them sick”. His voice rose to its Sunday morning crescendo “It is THEIR OWN SIN THAT HAS DONE THIS!”. It was 1989 at a meeting of church groups working with young people. I was there as a youth worker and assistant to the Anglican Bishop.
Although AIDS had been on the (Apartheid) South African government’s list of communicable diseases since 1987, in 1989 it was still an abstraction. Cases had been identified among Johannesburg’s (perceived to be mainly white) gay community since 1982. But they weren’t ‘ons mense’ (our people), neither for the ruling Afrikaans elite nor for the majority population. Technicians did their best. In 1988 officials had set up a small AIDS Unit and Advisory Group, but few knew it existed. And it had no money from the national budget. A disease of a few ‘moffies’ (a derogatory term for homosexual men) was not the Nationalist government’s priority.
HIV and AIDS was not confined to any one part of society, of course. By 1989 reports were coming in of the impact of the disease, most notably from Uganda. But to the people of the Northern Transvaal, that was ‘up Africa’. South Africa had yet to experience a significant number of deaths. It was other people’s problem. And so, in the divided community of Pietersburg (now Polokwane), it had been hard to even get all the town’s church leaders together for a discussion.
There was a dreadful symmetry to South Africa’s racialized politics and society. Some Comrades with impeccable struggle credentials laughed at the idea that HIV/AIDS was relevant to them. As prevalence rates rose, I sat in community and church meetings where Young Lions from the townships derided behaviour change; “It’s not only the right of a man to sleep with many women, its necessary!”. I heard how a condom was “unmanly” and, “un-African”. For many in the Struggle, HIV was a white man’s invention to ‘stop the Blacks breeding’. Trying to change behaviour was linked to oppression, rules and control. Health activists had to frame their arguments carefully to avoid being branded racist or authoritarian. At the same time, until the transfer of power in 1994, the ruling Afrikaner political elite continued to see HIV/AIDS as a result of morally deviant behavior, with the wages of sin being death. They were, on the whole, uninterested.
When in February 1990 the ANC was unbanned and Nelson Mandela walked free, the country’s health system did not focus on the needs of the majority. South Africa’s specialist care was excellent; the world’s first heart transplant had taken place in Cape Town. But the health system served the white population. When they took power in 1994, the new ANC-led government faced a monumental challenge to overcome the legacy of Apartheid. 14 parallel health services, based on race and ethnicity, had to be integrated into a rational, primary-care based system across nine new provinces. After two years back in the UK getting a professional training in the NHS, I found myself on a five-person Strategic Management Team tasked by the new ANC government to begin the transformation of health service delivery in the vast but sparsely populated Northern Cape province. We had a relatively easy time of it with only three sets of staff, budgets and institutions to merge. In other parts of the country the story was much more complicated. In Kimberly, we knew that the half-empty old TB hospital would eventually be turned into an AIDS care unit. But even in 1994, although prevalence rates were rising (often with TB as an indicator of AIDS status) we didn’t have the resources to prepare effectively; the first provincial budget was overstretched as it was.
Funding for HIV/AIDS was a site of struggle at national level. Health activists had costed the first National AIDS Plan in the run up to the ANC taking power in April 1994, but the vast majority of that budget focused on treating those with the disease rather than preventing transmission. At a fraught meeting of officials and technicians in Pretoria to help prepare the new government’s first health budget, the competing claims of experts exploded. Information was used liberally to justify a range of points of view on whether prevention was more appropriate for funding than treatment. Many therapies were in their early days and were, for many, unproven. This being South Africa, it became an argument infused with identity and the Struggle credentials of those giving their opinion. What was to be done? Who was right? The Treasury was demanding the numbers by the end of the day so they could be put in front of Parliament. To break the deadlock, two of the best and trusted minds from the new dispensation were mandated by the group to come up with a compromise. I was told to wield the spreadsheet on their behalf. In the end the first National AIDS Budget was done in an hour on my laptop, cutting here, adding there, reallocating cash with some semblance of rationality; but the dominant driver was ensuring that final allocations across the country could obtain sufficient consensus in the divided room. It was certainly not evidence-based decision making.
Although the country now recognized it needed to fund a balanced response, in 1995 the new government made a monumentally stupid decision. Against the advice of the government’s own communications services that cheaper, more effective mechanisms were available, the bulk of its HIV/AIDS awareness budget was given to a friend of Nkosana Dlamini-Zuma, the new Minister for Health and wife of future President Jacob Zuma, for a touring musical ‘Sarafina II’. It became a scandal of huge political proportions, setting, in the words of the Rand Daily Mail, the template for so much graft to follow. The debacle drew in the EU delegation (who Zuma wrongly claimed provided funding), other donors, and the international community. It discredited not only the response to HIV/AIDS but Mandela’s government.
What was worse, just like the Young Lions I’d heard in the townships years earlier, many political leaders just didn’t believe the evidence. Six years after the ANC had taken control, President Thabo Mbeki denied that HIV caused AIDS. And he made his officials do bizarre things, like telling them to champion the industrial solvent Virodene as a wonder cure for AIDS (which was a toxic poison that didn’t work). He supported herbal remedies, saying he knew the cause of AIDS to be social ills such as poverty. In October 2000, Mbeki told a closed meeting of parliamentarians that the CIA was behind the claim that AIDS was caused by HIV. The US government, he said, was being sponsored by Big Pharma so US companies could sell un-needed cures to Africans. Being called “off his rocker” by historian R W Johnson didn’t really change the fact that Mbeki was President and could and did direct his administration away from evidence-based responses. By the year 2000, 10% of the South African population was living with HIV.
Nelson Mandela appears to have regretted that he had not done more while President. In 2000 at the thirteenth International AIDS Conference in Durban he made a critical intervention. Thabo Mbeki’s opening speech had been widely criticized. In contrast, the increasingly frail 83 year-old Mandela’s closing address was lauded. The fight against AIDS was a war, he said, “In the face of the grave threat posed by HIV/AIDS, we have to rise above our differences and combine our efforts to save our people. History will judge us harshly if we fail to do so now, and right now”. Mandela talked about the impact of meeting Nkosi Johnson, a 12 year old boy living with AIDS, calling him ‘an icon of the struggle for life’. The Durban conference moved the global response to HIV/AIDS forward and was where the Global Fund was first proposed.
Mandela became a key (if subtle) advocate, challenging government policy alongside activists. He associated himself with Zackie Achmat and the Treatment Action Campaign (TAC). Founded 1998, TAC initially focused attention on preventable mother to child transmission of HIV/AIDS. This could be blocked by the anti-retroviral drug Nevirapine. The government refused to make the drug available nationally. In 2002, TAC launched a legal challenge, alleging a violation of the right to access health care services that had been written into the 1994 Constitution. They demanded that Nevirapine be made available to infected mothers giving birth in state institutions. The court agreed, ordering the government to present its plan to extend provision across the country. TAC did not stop there, and led a campaign of civil disobedience to force the government to increase access to treatment.
Despite such activism, the years between 1999 and 2008 (those of Mbeki’s presidency) have been called the period of HIV/AIDS denialism. By 2005, almost 900 people a day were dying as a result of AIDS. One was Nelson Mandela’s son, Makgatho. In 2006, Health Minister Manto Tshabalala-Msimang was still suggesting eating garlic, lemon and olive oil as a cure for HIV. In 2007, she dismissed her deputy who had publicly challenged her views on HIV/AIDS. In a 2008 paper, Harvard academics concluded “Access to appropriate public health practice is often determined by a small number of political leaders. In the case of South Africa, many lives were lost because of a failure to accept the use of available ARVs to prevent and treat HIV/AIDS in a timely manner”. The paper put the number of avoidable deaths as more than 330,000.
When Mbeki himself was pushed out in 2008 and Jacob Zuma took office, Barbara Hogan became Minister for Health; “rarely has a South African Cabinet reshuffle been greeted with such enthusiasm and expectation” heralded the Lancet. There was immediate change to the country’s response and suddenly decisions became more rational and based on sound science. In 2008, the World Health Organisation reported that 36.6% of South African infants exposed to HIV were tested for the virus at the age of two months, 9.6% of those being HIV positive. By 2011, 70.4% were being tested and of those only 2.8% were found to be HIV positive. Aaron Motsoaledi, Hogan’s successor, had been a rural doctor from Limpopo Province (the old Northern Transvaal) and continued necessary reform and action.
Yet he might have been stopped from doing so. In 2009, President Jacob Zuma was accused of raping 31-year-old family friend and AIDS Activist Fezekile Kuzwayo. Asserting that their sex had been consensual, the President (who was chair of the National AIDS Council) told a court that he had not used a condom because he believed the risk of contracting HIV/AIDS was “minimal for a man”. And, he said, he had taken a shower after sex because “it was one of the things that would minimise contact with the disease.” Zuma controversially won the case, after which his accuser was granted asylum in the Netherlands to escape abuse. She died back home in South Africa in 2016 having lived with HIV for many years.
Thankfully (for the response to HIV/AIDS at least) Zuma’s attention was elsewhere during his Presidency. He did not impose his beliefs on the Department of Health as Mbeki had done. Zuma was publicly derided for his stance on AIDS (with the cartoonist Zapiro notably caricaturing him with a shower head permanently afixed to the top of his head). By 2009 attitudes were changing across South African society. HIV/AIDS was no longer an abstraction. Fifteen years after the ANC came to power, most families had been touched by the disease. According to the WHO, by 2010 200,000 were dying annually as a result of AIDS in South Africa. Politicians could deny all they wanted, but lived experience gave people the necessary evidence that a response was needed.
Since then, a level of rationality in policy making has been arrived at. Denial is no longer possible. Testing rates have increased and by 2018 90% of South Africans knew their status. 62% of people living with HIV were on treatment that same year. AIDS related deaths are down from their annual peak in 2010 to around 71,000 per year. However, more rationality in the system does not reduce the awful statistic that around 7.7 million South Africans (roughly one in five) live with HIV, 63% of whom are women.
In November 1989, at the same time as I was in Pietersburg, the UK’s Prime Minister Margaret Thatcher was in New York speaking to the United Nations on another global challenge, climate change. A chemist by training, she had been convinced by the evidence. “It is mankind and his activities that are changing the environment of our planet in damaging and dangerous ways. The result is that change in future is likely to be more fundamental and more widespread than anything we have known hitherto”, she said. “Every country will be affected and no one can opt out. Those countries who are industrialised must contribute more to help those who are not.”
Over the last 30 years South Africa’s response to HIV/AIDS wasn’t hampered by a lack of information any more than the global response to climate change has been hampered by a lack of information. The evidence was out there. Decision makers had options that would have reduced impacts. Cape Town’s water crisis of 2017-18 echoes the response to HIV/AIDs in the country. Both were predictable and predicted.
The knowledge that individuals use to make decisions is not necessarily, and not usually, based on full information and evidence. And policy making is not a rational process (as current UK politics illustrates equally well). As the story of HIV/AIDS in South Africa shows, it arises out of a complex interaction of social values, contested ideas, political short-termism, personal opinions, and the raw political economy affecting those who have power. We need to work with that reality. Engaging in the policy space should be about the art of the possible. Of course, we need to push for evidence-based policy. But what is going to enable change may, itself, not necessarily be rational.
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 Chigwedere, P., Seage III, G.R., Gruskin, S., Lee, T.H. and Essex, M., 2008. Estimating the lost benefits of antiretroviral drug use in South Africa. JAIDS Journal of Acquired Immune Deficiency Syndromes, 49(4), pp.410-415.