Skip Navigation

[Transcript] Listening to Shadows: Part IV. Disease and Denial

[00:00:00]
The moment when South Africa became a democratic society in 1994 and Nelson Mandela became president, it was a moment of extraordinary joy, if you can imagine that. That sort of freedom at last. 

[Archival news clip]: Nelson Mandela: The time for the healing of the wounds has come. The moment to bridge the chasms that divides us has come. The time to build is upon us. 

And at the very moment of democratic achievement, South Africa was hit by the AIDS, the HIV epidemic. The first cases were in the early 80s and then it started exploding. And so, Nelson Mandela was faced with this epidemic at this very moment that we became free. 

Mandela didn’t know how to respond to HIV. He was a Victorian gentleman. He didn’t really want to speak about sex, armed with very few tools in terms of how to deal with it. I mean, it was new. We went to see him. This is a group of us from the University of Cape Town, we went to see him and asked him to declare an emergency, and he said he’d asked his [00:01:36] Minister of Health to do so. She never did. 

Mandela was then succeeded by Thabo Mbeki, who was his deputy president. He was essentially the well-known leader in exile who helped negotiate the African Nationals Congress as an exile movement. He became really well-known as somebody who is capable of modernizing the economy and getting growth going, but it turned out that he was a denialist for reasons that we still don’t entirely understand.

What he started saying in public and making claims that went against the conventional scientific understanding of what HIV is, that it’s a virus, it causes AIDS, and it is something that is spread sexually or through blood. It is passed on from mother to child and there is no vaccine for it. At the time there were therapies to deal with it, antiretroviral therapies. He denied all of that. He said HIV does not cause AIDS. He focused on the [00:02:46] immune side of things. That is to say, he said that what needs to be done is to strengthen people’s immunity by changing their diets, by eating better and so on. He said that it was an attack against black men, that it was racially motivated, and in the course of time, he just became a conspiracy theorist, that this is a plot by the West to undermine his country, this is a campaign on the part of companies to make more money, that it was a plot by whites against blacks to get a smaller black population and so on. He just went off the deep end. 

Thabo Mbeki then prevented the rollout of antiretrovirals. He entertained quack remedies, and in fact he had two pseudoscientists present a case for a particular cure that was the equivalent of a chemical bleach. He appointed a council, an AIDS council, half of whom were denialists, 

[Archival news clip]: We do not know what is the cause of AIDS. And the conventional view has not produced anything. 

and he started spreading misinformation [00:03:54] on a wide scale. 

[Archival news clip]: Thabo Mbeki: You see when you ask the question, “does HIV cause AIDS?”, the question is, “does a virus cause a syndrome?” It can’t.

So here you’ve got actually a good leader of a country in relation to one of his tasks, which is to make the economy grow, but it was absolutely terrible when it came to leadership on the health front. He got his information off the internet, largely, and produced documents that, if you read it today, would just make your blood boil for the misinformation that’s contained in it. And if this was an ordinary citizen doing this, who cares, right? But he was a president of a country, and it had consequences.

A citizens’ movement arose led by an individual called Zackie Achmat. It was called the Treatment Action Campaign. Zackie was a very courageous man. He had HIV. He refused to take any antiretrovirals, which you could buy privately at great costs until antiretrovirals were made available to everybody in the country. So he became a hero. 

[Archival news clip]: Zackie Achmat: We’re going to court because we’re saying the government must provide nevirapine to pregnant women. That the government must give us a plan to reduce mother to child transmission across our country.

The main thing that was really quite amazing was that he established a relationship between citizens and the [00:05:20] scientists in the country. And our science community was very strong.

Zackie Achmat and his leaders systematically went about setting up partnerships with South Africa’s good scientists. Had them speak, had them collaborate in a way that attracted major support from the populace, and that became durable. That collaboration between scientists matters enormously because then you trust your nurses and your doctors and your scientists, and that is a very good thing, obviously. 

I tell you the one consequence of that was when it came to COVID-19 vaccines, we didn’t have the trouble other countries had because of people’s faith in their science not in their politicians. Tony Fauci would not have suffered the same fate in South Africa as he did in the U.S. So South Africa never experienced a kind of political partisanship of whether you take a vaccine or not, or whether you mask or not. That was not an issue. Some people complained, but it was never a political, partisan issue.

In our constitution it says very clearly that citizens have a right to health. They have the right to life and the right to health, and they have a progressive right towards education. And on the basis of that, Zackie Achmat and the Treatment [00:06:45] Action Campaign took the government to court. The court decided to compel government to provide antiretrovirals and paid for through the public purse. So the high court compelled the government to behave, and this was in 2002, 2003.

The South African legal system was a real blessing to the country because it actually held our leaders to account. In the meantime, we were left with a legacy, and the legacy was measured by Harvard University, who estimated that 350,000 South Africans died who should not have died, and a million orphans were a result of this misinformation. Thabo Mbeki remained unaccountable for that to this day. In fact, he has never actually been contrite on this issue, ever. He hasn’t.

So, the [00:07:45] lesson for the U.S. is strengthen your science entities. It is very, very important to build up partnerships between citizens and the scientific community, and with the medical and public health community, because that’s where the resilience lies. If anybody tries to degrade it, you have to hold him accountable for that. You have to resist it and fight it as best you can. You have to build up a citizen’s alliance with the science community and the medical community. You have 50 states with their own laws, and you can do it on a state-by-state level using the legal machinery that exists in every state. It won’t be easy. But those instruments are there, so there has to be a different sense of strategy, a different sense of tactics.

The lesson for me is everything possibly must be done to stop political leaders doing the wrong thing. So I joined parliament in 2009. I became the ranking member of our health committee from the opposition side. And every year, our committee was presented with a budget that would fund the antiretroviral supplies. [00:08:51] It was something like six million South Africans should have been on antiretrovirals, but four million were, so we needed to increase that figure. And antiretrovirals cost quite a bit of money, and so we had to vote to support it. PEPFAR was a major contributor to that, a huge contribution from the United States. So, when I used to visit clinics, the HIV clinics, there would be a caravan at the back of clinics and it said, “With courtesy of the American people.” 

It was a moral obligation to fund putting people onto antiretrovirals as a public responsibility, but it’s a lot of money, and that money could have been spent on improving hospitals, it could have been spent on essentially what the real health burden was, but every year since then, that’s what happens in terms of the health budget. That’s the consequence, the main consequence is lives lost. The secondary consequences are what it meant for the public purse, in terms of what we had to pay. That was the legacy.

So that’s what happens when leaders spread [00:09:55] misinformation. When they don’t have policies based on science. And you know, science is not perfect. Science is an ongoing experiment. So you can never be certain, but you have to make good judgments. 

Thabo Mbeki tried to explain himself to the world, and I know that Bill Clinton received one of his letters, and he was completely flummoxed by this letter. Because a responsible leader would, faced with such an emergency, turn to his national entities in health, so that’s the NIH or the U.S. CDC, and ask them, “give us some advice.” Thabo Mbeki didn’t do that, and in fact, he bullied the head of our equivalent CDC, the Medical Research Council, a very good scientist at the time. And would call him at two in the morning, and essentially bullied him, and tried to subdue him so that he would become a supporter. He was looking for loyalists. So he was behaving in a way that Donald Trump behaves. That is, you don’t appoint your best people, necessarily. But you’re essentially doing it on the basis of loyalty. Not competence, and [00:11:12] not a sense of national responsibility. I mean, the best leader would create an environment where well-appointed experts do their job, and when they step out of line, you correct them, but you don’t interfere as long as they’re doing their job properly. 

The lesson from that experience is that misinformation, disinformation, not having science-based policies has consequences, and the consequences are serious. Compromising human lives, people dying. Imagine dealing with a million orphans. What about those poor kids, right? The orphan population has actually declined in the course of time, but there’s still close to just under a million orphans in South Africa as a result of these policies. And they become whose responsibility? Who takes care of them? Opportunities lost, lives lost, futures compromised. That’s the consequence.

There’s one part of that story I just told you that I need to finish, which is about Mandela. So, Nelson Mandela was one of my heroes, but like everybody else, he wasn’t [00:10:00] perfect. Mandela believed that he didn’t do enough to, in fact, deal with HIV while he was president.

His own son died, his eldest son died of AIDS, Mandela’s, and so it was also partly personal. So after he left office, he felt responsible for what happened afterwards. He decided to devote his foundation, the Nelson Mandela Foundation, to countering misinformation on HIV, which he did to the point where he annoyed his successor Thabo Mbeki, who wouldn’t take Mandela’s phone calls after a while. Just imagine that. Right? Everybody would take Mandela’s phone calls. And he wanted somebody to give a lecture, somebody who was really world class, very senior scientist to give a lecture on the origin of AIDS, and I thought of David Baltimore, who is a Nobel laureate. David at the time was president of the California Institute of Technology. Before that, he founded the Whitehead Institute, which is now called the Broad [00:13:33] Institute at MIT and Harvard. He was based at Rockefeller University for a while, and he got a Nobel Prize for discovering essentially reverse genetic writing, RNA scripting called reverse transcriptase. So he won the prize with Howard Temin from the University of Wisconsin. The virus classification system today is called the Baltimore Classification System. So a man of great, great esteem scientifically.

So Mandela asked me to organize the Nelson Mandela Science Lecture on the origin of AIDS and I asked David, I mean, he was the specialist. So David agreed to give the lecture, and he came to South Africa to do so in 2007. [00:14:15]

So I took him to meet with Mandela in Johannesburg at the Nelson Mandela Foundation. Madiba was sitting in his chair, it was a wheelchair, he had a blanket over his lap. He was in his 80s already and his assistant’s name was Zelda la Grange, and she would cue our behavior. She would signal to me when to start, when to stop. He was old and he was still sharp. His brain was functioning fine, but I mean, his attention span was just short.

We spent 10, 15 minutes with him, and David gave an outline of what’s required to deal with HIV, communicating both the science of it and what needs to be done as a public campaign. I had the great pleasure of listening to David Baltimore in five minutes describe to somebody who’s not a scientist what had to happen in terms of public policy with HIV. Requires a discipline of words that only David Baltimore can master. [00:15:14] 

There is still no vaccine for HIV and every time I speak to David, he says it’s 10 years away. They just haven’t been able to crack the science on that. So the only thing you can do, which is what he communicated to Mandela, the only real thing that anybody can do is modify their behavior and to develop an open language around sex, which is very difficult for people, and to create incentives to behave accordingly. So you’re touching a very raw nerve here. That was David’s message to Mandela, and he understood that.   

Mandela listened. His assistant Zelda la Grange then signaled to me to stop and so we then got up to leave. As we left, Mandela said to us, David Baltimore and I, “When government doesn’t do the right thing, you take the fight to them.” Ok, so old man, still the fighter, still the activist, still the model champion, including against his own government, right? Those are [00:16:34] words that we should also just remember. 

That was the last time I saw him. 

I still have a photograph of that meeting. That’s how he behaved, and that’s how good leaders ought to behave. He was kind of morally driven. He recognized his own shortcomings. Look at the number of political leaders today who just wouldn’t do that. They’re not contrite. They don’t have the self-consciousness and self-awareness to know where they are weak, including in science and so on. 

I wanted to return to the consequences of misinformation and disinformation, especially when it comes to matters of health and life. I thought about Mandela when I thought about the required leadership to counter disinformation and misinformation about life-saving medicines in particular. I thought of him when I saw this resistance emerging against the taking of vaccines. There’s so much disinformation floating around COVID-19, its origins, disinformation about vaccines, [00:18:00] and it has major consequences. Lives will be lost because of it.  

I shared the story about misinformation about HIV by the president of South Africa at the time, Thabo Mbeki, because the fact is that presidents and ministers are leaders. They set priorities, they define agendas, and it matters enormously what their commitments and values are. The more I listen to politicians speak today, both in the U.S. and elsewhere, the more alarmed I get, frustrated I become, and discouraged. Disinformation is spreading. It’s disheartening to see what’s happening. It’s very important for leaders to talk the truth about life-saving medicines based on a long history of good science in this area. [00:18:54]

SUGGESTED ARTICLES