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Beetroot for AIDS: Fighting denialism in Mbeki’s South Africa

HIV researcher and doctor Glenda Gray worked through the dark days of Thabo Mbeki's AIDS denialism. In an era of fake news and climate scepticism, her story has lessons for us all
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While protesters took to the streets (above) during Thabo Mbeki’s presidency, Glenda Gray (in green, below) cared for mothers with HIV and their babies
Anna Zieminski/Getty

THE 1990s brought democracy to South Africa – but also an explosion in HIV infections. More than 1.5 million of my country’s 38-million population were infected with HIV when apartheid ended and Nelson Mandela came to power in 1994. By 2000, 1 in 5 pregnant women were HIV-positive, with about 70,000 infected babies born each year.

Under Mandela, I had been on the side of the government. I was drafting South Africa’s plan to tackle HIV and AIDS, including the roll-out of nationwide treatment. But in 1999 the political landscape shifted. A new president, Thabo Mbeki, had prejudices about science. Mbeki’s line was that poor nutrition, rather than HIV, was the cause of AIDS. I was stunned. Suddenly I found myself at loggerheads with the very officials I had been working well with for years – except now they were advocating beetroot and garlic to prevent AIDS! It was a nightmare.

Around then, in Chris Hani Baragwanath Hospital – one of the largest in the world, in Soweto, a township of Johannesburg – virtually all the cribs were filled with terminally ill infants. AIDS was the biggest cause of death in children at the hospital. Most of them died before they turned 1. In adult wards, I watched young people waste away, their skin stretching across their skeletons before they died. As a doctor, I’d been trained to deal with death, but it was tough seeing such suffering every day, no hope in sight.

A huge problem was the transmission of HIV from mother to baby during childbirth or breastfeeding, which is preventable by giving the mother antiretroviral drugs (ARVs). But Mbeki’s government would not provide ARVs. I saw the effects of this firsthand, alongside James McIntyre, when we ran the University of Witwatersrand’s Perinatal HIV Research Unit at Baragwanath. We were counting the dead bodies, many of them babies.

The lack of drugs stemmed from Mbeki’s AIDS plan, announced early in his presidency, which focused on prevention and not also on treatment of HIV for adults, and didn’t mention mother-to-child transmission. At the event where the plan was announced, I got into a big argument in the bathrooms with the outgoing health minister Nkosazana Dlamini-Zuma, as I couldn’t understand the government’s stance. If you want to look good, you save babies, but here was a government that didn’t want to.

Scientifically, mother-to-child transmission of HIV, and its prevention, weren’t contentious. Why would anyone object to giving AZT or nevirapine – internationally approved drugs that reduce HIV’s ability to replicate – to a pregnant woman to prevent her infecting her baby? Yet suddenly something unequivocal was being contested. Some so-called “AIDS dissidents” in government and society were even saying that AZT was toxic and that we were killing black women by using it.

Glenda Gray

Fortunately, because James and I were researchers as well as doctors, we didn’t have to rely on the South African government for funding. Independent grants and money from the French government’s International Therapeutic Solidarity Fund meant we could carry out research into how to scale up the provision of ARVs. But despite this, we still struggled to get permission from the new health minister Manto Tshabalala-Msimang to demonstrate the use of ARV treatment in Soweto.

Administrators and civil servants kowtowed to Mbeki whether they believed in AIDS denialism or not, and so toed the party line at whatever cost. For example, I once had a call from a doctor at another hospital, who said, “I have an HIV-pregnant woman in labour. I hear you have the drugs to prevent mother-to-child transmission during childbirth. Can I send an ambulance to fetch them?” The ambulance rushed to our unit, and I gave the driver the package. When he got there, the hospital boss confiscated the drugs and phoned me, saying, “How dare you send that medicine!”

Those of us who did stand up against AIDS denialism were marginalised. But as a scientist, I didn’t get to choose a side: I could only show the evidence and advocate on that basis.

In 2001, a civil society group called the , and the court reinforced what we had been saying all along: healthcare facilities had to provide pregnant women with ARVs. But the several years between the court judgment and the wide-scale roll-out of ARV drugs to pregnant women felt very long. I was trying to keep my patients as healthy as possible, while we waited for the drugs that would keep them alive.

The Lazarus effect

When the ARVs were finally rolled out it was like Lazarus syndrome. My patients went from needing wheelchairs and oxygen tanks, from lying on stretchers, to healthy. Children I was treating went back to school. It was beautiful to see people claim back their lives. ARVs were the most amazing thing to happen to South Africa.

In 2008, the political winds changed again. Mbeki resigned and interim president Kgalema Motlanthe, on his first day in office, appointed a new health minister. It was like waking up from a nightmare. Mbeki’s stance on HIV was ultimately his undoing, and with him gone South Africa began making ARVs available in all its clinics, to anyone who needed them.

We cannot bring back the , but . The mortality rate for children under 5 plummeted. We now have the largest ARV roll-out in the world.

But, sadly, HIV is still rampant in South Africa, with around 1000 new infections every day. We estimate that about 1 in 5 people are HIV-positive. And while we can prolong their lives, we can’t yet stop the stigma they face. South Africa is an oddly conservative country: even if you were born with HIV, you are considered dirty and shameful. It’s hard to tell a pregnant woman she is HIV-positive, which I have often had to do. At what should be a precious time, she is wondering if her partner gave it to her, and how to tell her family.

Back in the “bad days”, people were dying and were embarrassed about their illness, so they kept quiet. It is better now there is treatment, but the stigma is still there. And that is why we need a vaccine – to stop people getting infected in the first place.

I am now part of a team beginning a vaccine trial that holds great promise for our country and the world. In November, we enrolled 5400 adults in a trial called HVTN 702 – the largest and most advanced of its kind in South Africa. It builds on a smaller clinical trial in Thailand. In that earlier trial – the most successful to date – participants who were vaccinated were 31 per cent less likely to contract HIV over a three-year follow-up than participants who didn’t receive the vaccine. We aim to get the first results from our trial, using a new vaccine formulation, in 2020.

We need a vaccine that works in adults before we can give it to babies. Once we find a vaccine and give it to infants, I will have completed my journey.

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Glenda Gray is the president and CEO of the South African Medical Research Council, a research professor of paediatrics at the University of the Witwatersrand, and a director at the Perinatal HIV Research Unit in Soweto

This article appeared in print under the headline “Fighting for life in a time of AIDS denial”

Topics: HIV and AIDS / Politics