When researchers identified the human immunodeficiency virus as the reason why young, previously healthy people were developing rare cancers and wasting away, it was a triumph of medical science. But, writes author Charlie Jane Anders in a Gizmodo report, even as the medical community reached a consensus that HIV caused Aids, a counter-movement was emerging, claiming that HIV didn’t exist, or that the virus existed but was harmless.
The symptoms of Aids, according to some of these people, were actually caused by HIV therapies themselves. And, says Anders, to this day, some people continue to believe that HIV is a hoax. She says the story of the HIV denialist movement demonstrates that scientific agreement is not necessarily enough – thousands of people died because the conspiracy theory was able to outrun the facts, thriving in the climate of fear and suspicion around a grisly disease that had struck a vulnerable population.
She says in the US, the HIV denial movement led individual patients to reject medication until it was too late. In South Africa, denialists managed to win influence with the country’s president, Thabo Mbeki, and his public-health policies led to an estimated 330,000 deaths that would otherwise have been preventable.
Elsewhere, she says, we may never fully know how much impact HIV denialism had—but conversations with more than a dozen HIV activists, educators, doctors, and former denialists, suggest that the denialists significantly hindered efforts at educating people about HIV and how to protect themselves.
In the early 1980s, there was legitimate disagreement and debate over the causes of Aids. At that point, “any theory of what was causing young people to die from these rare diseases was fair game,” said University of Connecticut social psychology professor Seth Kalichman, author of the book Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy.
But even before the virus causing Aids was identified, the US Centres for Disease Control (CDC) put out prevention recommendations that were compatible with the idea that it was spread by a virus, said Jim Curran, who coordinated the CDC’s Aids taskforce beginning in 1981. “We did that because we thought it would be very important,” and he said, there was already enough agreement that the condition was spreading like a virus.
And when scientists did identify HIV as the cause of Aids, “it was obviously true from the very beginning,” said Curran, who is now the dean of the Rollins School of Public Health at Emory University. This was a new virus, which was shown to kill immune cells, or lymphocytes, in a petri dish. “Basically, everyone who has Aids has the virus,” Curran said, “and people who didn’t have Aids didn’t have the virus.”
But, says Anders, some people refused to accept the consensus. “After the virus was proven to cause Aids, these guys came out of the woodwork,” Curran said. “They had no credibility. It was so counter-intuitive.”
From early on, the HIV skeptics took two tacks, according to George Carter, director of the Foundation for Integrative Aids Research. Either they said that HIV was harmless and had little or nothing to do with Aids (as Peter Duesberg at UC, Berkeley argued), or they claimed that the virus actually didn’t exist (or had “never been isolated”), and all we could point to were antibodies, not a virus. There was also the pervasive claim that “drugs cause Aids,” Carter said, including heroin, amphetamines and cocaine. “Sorry, but if recreational drugs cause Aids, there should be a helluva lot of dead straight people.”
Meanwhile, says Anders, former KGB and Stasi operatives have since admitted that there was a coordinated misinformation campaign on the part of the USSR and East Germany in the 1980s, aimed at spreading the idea that Aids was a bio-weapon created by the US – which was successful at getting stories into the London Sunday Express and the CBS Evening News. In the 1990s, this gave rise to widespread beliefs that Aids had been specifically designed to target black people, writes Nicoli Nattrass, the director of the Aids and Society Research Unit at the University of Cape Town in South Africa.
“All their ideas are arguable nonsense,” said Carter of the denialists. This is, Carter said, “sadly proven by every HIV-positive denialist with whom I had these arguments, dying of Aids.”
Meanwhile, South Africa’s HIV-denialist nightmare also began with a focus on alternative treatments. In 1997, then-vice president Thabo Mbeki and other top ANC officials championed a “cure” for Aids called Virodene – which turned out to contain an industrial solvent called dimethylformamide that causes irreversible (and often fatal) liver damage. The creators of Virodene, University of Pretoria scientists Olga Visser and her husband Jacques Siegfried “Zigi” Visser, were invited to speak at a cabinet meeting, where Olga Visser told ANC leaders that Virodene “destroyed” Aids. They were greeted with a standing ovation. “With hindsight, Virodene was the start” of South African denialism, said Nathan Geffen, a long-time South African HIV activist and author of the book Debunking Delusions. At the time, activists just saw the Virodene incident as a “temporary aberration.”
South Africa’s HIV denialism was home-grown, but it gained strength from the denialist community in the US. When Mbeki became president, he held an Aids conference, in which he flew in overseas “experts” like Duesberg. “The remarkable thing about Mbeki’s presidential panel was that it was really divided evenly between credible scientists and discredited denialists,” Kalichman said. “And the people he seemed to listen to were the discredited denialists. And remarkably, they’re all white Western European and American men. His scientists were primarily South African. They were racially diverse, and they were from his country. Some of the really most renowned Aidds scientists in the world were on that panel. And they were South African.”
“Denialism has been an epidemic within an epidemic,” said HIV educator Ntando Yola, who works with the Desmond Tutu HIV Foundation. When former President Nelson Mandela tried to question Mbeki’s Aids policies at a 2002 ANC meeting, Mandela was publicly humiliated by top ANC officials, who were keen to show loyalty to Mbeki. After this, Mandela paid a visit to HIV-positive activist Zackie Achmat, a leader of the Treatment Action Campaign (TAC), who was challenging Mbeki’s policies in court. Mandela was photographed with Achmat, wearing a shirt Achmat had given him that read “HIV-positive,” in an attempt to fight the stigma around HIV.
Anders writes that the TAC succeeded in winning a 2002 court order that forced the government to provide anti-retroviral (ARV) drugs to prevent mother-to-child transmission of HIV. But the Mbeki government still resisted providing ARVs to the general population, so the TAC embarked on a “civil disobedience” programme, including a 14,000-person protest at Parliament and protests at police stations.
“Survey after survey showed there wasn’t much support for these Aids-denialist views,” said Geffen. “People went along with it because it suited them politically.” After the civil disobedience campaign, the government agreed to provide ARVs to everyone with HIV – but this was followed by “years of ‘malicious compliance’ from the government,” said Marcus Low, the TAC’s head of policy communications and research.
By all accounts, Anders says, South Africa now has one of the best treatment programs in the world, with an estimated 3m people receiving ARVs. South Africa’s long history of “achieving freedom through civil action” was what allowed the TAC to turn the tide against denialism, said Yola: “People believed that standing up against a resistant force for what is possible will eventually yield results.”
Anders writes that denialism still gets articles in reputable scientific journals, and is still influencing people, to this day. In 2010, Kalichman did a survey of 266 men and 77 women living with HIV/Aids, and and found that one out of five of them agreed with statements like “there is no proof that HIV causes Aids” or “HIV treatments do more harm than good.” The more frequently someone used the internet, the readier they were to believe that there was no proof that HIV causes Aids. “We have to remember that there’s still a lot of harm that comes from Aids denialism,” said Kalichman.
And in South Africa, the government is still dragging its feet on providing Pre-Exposure Prophylaxis (PrEP) to HIV-negative people, based partly on bad science about HIV transmission, said Brian Kanyemba, a key populations community engagement officer with the Desmond Tutu HIV Foundation in Cape Town.
Nor are “miracle cures” for HIV a thing of the past. Anders says: “Kanyemba told me that his sister was born with HIV, and she had been doing well on ARVs. Then she went to a Pentecostal church, where they gave her ‘special water’ to drink and told her that she was cured of HIV. She stopped taking her medications, and died last summer.” Since then, Kanyemba has been campaigning for the South African Health Ministry to crack down on churches, and their supposed cures for the virus.Full Gizmodo report