Wednesday, December 2, 2015
Published by Vice
On the maternity ward of California's Kaiser Permanente hospital, John and Jessica Strangis found themselves facing a terrible decision. It was the 1st of June, 2014, and the couple were expecting their first child. Jessica had begun feeling contractions at around 4AM that morning, so John called an ambulance, waiting for it to arrive before getting in his car to make the 20-minute drive from their home to the hospital.
Jessica had gone into labour five weeks early, but there was another complication: John and Jessica were both HIV positive. They knew the doctors would want to give her drugs to prevent the virus being transmitted to their child, but this presented a problem, because both John and Jessica believed those drugs would kill her.
John and Jessica Strangis were HIV denialists, part of a small community that, despite the overwhelming evidence to the contrary, questions the link between HIV and AIDS. The theories espoused by denialists vary, but typically come down to a few key beliefs: that HIV does not exist or is benign, and that AIDS is directly caused by recreational drug use or lifestyle choices and is not sexually transmitted. As for the vast numbers of people who have died as a result of the disease? It's the HIV treatment that has killed them.
John's introduction to HIV denialism came in 2011, shortly after he received a positive diagnosis. Like many, he stumbled across denialist ideas while searching for information about his condition online. John decided to reject treatment. A few months later, Jessica did the same. John became a vocal spokesman for the movement, making YouTube videos about denialist ideas. When the couple discovered they were expecting a baby, John discussed various options with denialists online – anything that might allow Jessica to avoid taking HIV drugs. Some suggested travelling abroad. Others recommended a home birth. In the end, the baby's premature arrival meant they had no time to carry out these plans.
At the maternity ward, John argued with one of the doctors. The hospital had carried out a blood test and discovered that Jessica could be HIV positive. As a precaution, they recommended using drugs to prevent any harm to the child. John argued with the doctor for half an hour, but he was gradually worn down. The couple became worried about what might happen if they refused. "It came to the point where I'm like, 'If we decide against the treatment, are you going to send someone at gunpoint to take my kid away?'" says John. "The doctor said, 'Not me, but I don't know if someone else might.'"
And so, reluctantly, the couple accepted the drugs.
The roots of the denialist movement can be traced back to a paper published in Cancer Research in 1987, three years after HIV was discovered to be the cause of AIDS. Authored by Peter Duesberg, a biology professor at the University of Berkeley, the paper argued that HIV was harmless and did not cause illness. Duesberg has expanded on this theory in numerous papers in the years since, but his ideas have never gained traction among the scientific community. Nevertheless, they are still used by committed HIV sceptics to lend validity to arguments which occasionally breach the boundaries of mainstream culture.
In 2000, the Foo Fighters played a benefit gig for an organisation that denied the link between HIV and AIDS. In 2007, the president of Gambia claimed he could cure HIV with herbs. But the most damaging impact of the HIV denialism movement was seen in South Africa in the years between, when president Thabo Mbeki refused to provide antiretroviral treatment to HIV patients. Harvard researchers have since concluded that the policy caused more than 330,000 premature deaths.
However, even now, the arguments persist. In 2009, The Spectator organised a screening of denialist documentary House of Numbers, only for it to be cancelled after protests. In February of 2015, denialist campaigner Joan Shenton held a screening of her film Positive Hell in London.
Much like climate change deniers, HIV denialists claim they represent one side of an unresolved debate. But among the scientific community, there is no serious doubt that HIV causes AIDS. Professor Brian Gazzard is chair of the Expert Advisory Group on AIDS and of the St Stephen's AIDS Trust. He tells me: "The consensus is totally overwhelming." After decades of arguing against the existence of HIV, denialists have found only a small handful of scientists prepared to lend credibility to their cause – most of them working in fields unrelated to virology. As Gazzard says: "Brilliant people can have bizarre ideas."
In 2000, the HIV crisis in South Africa prompted a letter to be published in Nature, dubbed the Durban Declaration, which declared unequivocally that HIV was the cause of AIDS. It was signed by 5,000 leading researchers in the field. To avoid accusations of bias, scientists working for commercial companies were asked not to sign.
The letter described the evidence that HIV causes AIDS as "clear-cut, exhaustive and unambiguous", adding: "HIV causes AIDS. It is unfortunate that a few vocal people continue to deny the evidence. This position will cost countless lives."
Mike Hersee is a UK-based denialist campaigner. In 2006 he founded Heal London, a website "for people who have questions about their HIV positive diagnoses and the whole HIV/AIDS paradigm". He tells me he has accompanied patients to medical appointments on around 20 occasions, to "challenge the doctor with a few things". These encounters do not always go smoothly. Hersee recalls the first time: "The doctor, who was initially very keen, within a couple of minutes was very agitated. Eventually when he backed himself into a corner and said something stupid, he stood up and screamed, 'Look, he'll die in a year if he doesn't take these drugs.' We were in shock because you don't expect a doctor to do that."
Hersee acknowledges that his medical expertise is self-taught, "but self-taught reading things like quite intense debates between medical specialists". At first, his interest in HIV and AIDS was purely academic. But in 2000, he began a relationship with a young man named Cornelius. Against Hersee's advice, Cornelius took an HIV test and was diagnosed positive. Hersee tells me that Cornelius was given drugs to treat his condition, but decided not to take them after being shown documents which suggested they were dangerous. Hersee continued having unprotected sex with Cornelius and sees his failure to develop the condition as proof of denialist theory. Later in our conversation, I ask Hersee what happened to Cornelius. "He died of heart failure when he was 23," he tells me. "But he had two faulty heart valves. His mother told me he wasn't expected to live until he was 25."
Early deaths are sadly not uncommon in the denialist community. The website AIDSTruth has a list of 25 denialist campaigners who have died. Many denialists, like John and Jessica Strangis, are drawn to the movement just after being diagnosed with HIV. As John puts it: "Especially if you're first diagnosed, it sounds pretty good to look at some information that says this condition doesn't exist."
Gus Cairns is a journalist and AIDS activist who tells me: "All the denialists I've known have been driven by a conviction that it's such an appalling thought that it has to be denied and there has to be an escape somehow. Yet, of course there is an escape, and the escape is treatment."
But there are also campaigners without the disease who have nevertheless dedicated their lives to exposing what they believe is an HIV conspiracy. In 2009, psychology professor and AIDS researcher Seth Kalichman published a book, Denying AIDS, in which he explored the roots of the movement. When I ask him about the denialists' motivation, he tells me: "My experience has not been that they are lying or trying to intentionally deceive. The motivating factor for these rogue scientists and journalists, the common thread, is conspiracy thinking around science, the government, industry and, basically, the establishment."
This view is confirmed by David Crowe, a Canadian journalist who, since 2008, has been president of the denialist group Rethinking AIDS. "There's huge amounts of money, and people's careers rely on this," he tells me. "If you started doing AIDS research in the 1980s or early-90s, that's all you are. These people have a lot of money and status and that would all go away."
After our conversation, it strikes me that the same could be said of the denialists. Their reputations are irreversibly tied to their claims. How many people, once diagnosed with HIV, will have been influenced by their arguments and stopped taking their medication? With so much at stake, could you ever begin to contemplate that you might be wrong?
Five months after the birth of her son, Jessica Strangis fell ill. The birth had gone smoothly and the baby was doing well. The experience had planted seeds of doubt with John about denialist ideas, and he began extricating himself from the movement. But the couple hesitated before resuming treatment. In December of 2014, Jessica developed pneumonia. "I've never seen anyone get sick like that in my life," says John. "I was telling her, 'Forget about all the stuff that we read. Let's just go with what the doctors say. Let them treat you, not argue. Let's try a different route.' Because I didn't want her to die."
After two weeks in intensive care, Jessica Strangis recovered from pneumonia and returned home just before Christmas. Shortly afterwards, she and John resumed their HIV treatment. Their son, Dominic, is now 18 months old. In June this year, the couple gave birth to a daughter, Annabelle. Both children have tested negative for HIV.
Posted by Seth Kalichman at 10:19 PM