Published
by Vice
Mark Wilding
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.
