Is it wrong to highlight the deaths of HIV-positive AIDS denialists who reject medications and urge others to do the same?
In “Don’t Get Fooled Again”, I look at the role played by the media in promoting dangerous pseudo-scientific ideas under the guise of “balance” in reporting. From the mid-1950s onwards, there was a clear consensus among scientists, based on very strong epidemiological evidence, that smoking caused lung cancer. Yet for several decades, many journalists insisted on “balancing” their reports on each new piece of research with a quote from an industry-funded scientist insisting that the case remained “unproven”.
The tobacco industry’s strategy from an early stage was not to deny outright that smoking was harmful, but to maintain that there were “two sides to the story”. In January 1954, the industry issued its now-famous “Frank Statement to Cigarette Smokers” – a full-page advertisement published in 50 major newspapers across the US.
“Recent reports on experiments with mice have given wide publicity to a theory that cigarette smoking is in some way linked with lung cancer in human beings”
the industry noted.
“Although conducted by doctors of professional standing, these experiments are not regarded as conclusive in the field of cancer research… we feel it is in the public interest to call attention to the fact that eminent doctors and research scientists have publicly questioned the claimed significance of these experiments.”
The strategy played cleverly to the media’s penchant for “controversy”, and proved remarkably successful. Long after the matter had been decisively settled among scientists, public uncertainty around the effects of smoking endured.
US cigarette sales continued rising until the mid-1970s – and it was only in the 1990s – four decades after the scientific case had been clearly established – that lung cancer rates began to tail off. Harvard Medical Historian Allan M Brandt has described the tobacco industry’s public deception – in which many mainstream journalists were complicit – as “the crime of the century”:
It is now estimated that more that 100 million people worldwide died of tobacco-related diseases over the last hundred years. Although it could be argued that for the first half of the century the industry was not fully aware of the health effects of cigarettes, by the 1950s there was categorical scientific evidence of the harms of smoking.
The motivations of the AIDS denialists may be very different, but their rhetoric and tactics are strikingly similar. During the early 1990s, Sunday Times medical correspondent Neville Hodgkinson was bamboozled into running a series of articles – over a period of two years – claiming that:
“a growing number of senior scientists are challenging the idea that the human immunodeficiency virus (HIV) causes AIDS”…
“This sensational possibility, now being contemplated by numerous doctors, scientists and others intimately concerned with the fight against the disease, deserves the widest possible examination and debate.”
Hodgkinson declared in December 1993.
“Yet it has been largely ignored by the British media and suppressed almost entirely in the United States… The science establishment considers itself on high moral ground, defending a theory that has enormous public health implications against the ‘irresponsible’ questioning of a handful of journalists. Their concern is human and understandable, even if we might expect our leading scientists to retain more concern for the truth while pursuing public health objectives.”
As with the tobacco industry’s “scepticism” over the link between smoking and cancer, the views promoted by Hodgkinson tended to focus on gaps in the established explanation (many of which have since been filled) rather than on any empirical research showing an alternative cause. But he did use one of the recurrent rhetorical motifs of the AIDS denial movement – highlighting the case of an HIV-positive “AIDS dissident” who refused to take anti-retroviral drugs but remained healthy.
Jody Wells has been HIV-positive since 1984. He was diagnosed as having AIDS in 1986. Today, seven years on, he says he feels fine with energy levels that belie his 52 years. He does not take the anti-HIV drug AZT…
He feels so strongly about the issue that he works up to 18 hours a day establishing a fledgling charity called Continuum, “an organisation for long-term survivors of HIV and AIDS and people who want to be”. Founded late last year, the group already has 600 members.
Continuum emphasises nutritional and lifestyle approaches to combating AIDS, arguing that these factors have been grossly neglected in the 10 years since Dr. Robert Gallo declared HIV to be the cause of AIDS.
Tragically – if predictably – Jody Wells was dead within three years of the article being written.
Although Hodgkinson left the Sunday Times in 1994, his articles on the “AIDS controversy” continued to be disseminated online, lending valuable credibility to the denialist cause – and have been credited with influencing Thabo Mbeki’s embrace of AIDS denial in the early part of this decade.
When, in 2000, President Mbeki invited several leading denialists to join his advisory panel on HIV and AIDS, Hodgkinson was one among a number who published articles in the South African media praising the decision. Writing in the New African, Hodgkinson called for “a humble, open, inquiring approach on all sides of this debate” – whilst simultaneously declaring that “AZT is a poison” and denouncing “the bankruptcy of AIDS science”.
Hodgkinson also wrote for Continuum’s magazine, which, following Jody Wells’ death was edited by HIV-positive medication refusnik Huw Christie. Christie defiantly launched the “Jody Wells Memorial Prize” (recently satirised here by Seth Kalichman) offering £1,000 to anyone who could prove to his satisfaction that HIV was real.
The magazine finally folded in 2001, with the Jody Wells Memorial Prize still on offer, after Huw Christie died from a disease which fellow denialists insisted was not AIDS-related. “Neither of your illnesses would have brought you down, Huw”, wrote Christie’s friend Michael Baumgartner in 2001. “You simply ran out of time to change gear. We both knew it did not need some ill-identified virus to explain your several symptoms”.
“Huw’s devotion to life has no doubt contributed to a better understanding of AIDS and he saved many who, without hearing a skeptical voice, would have been stampeded down the path of pharmaceutical destruction”
wrote HIV-positive San Francisco AIDS “dissident” David Pasquarelli.
“I readily acknowledge that if it wasn’t for the work of Huw and handful of other AIDS dissidents, I would not be alive today”.
Pasquarelli died at the age of 36 three years later.
The same document includes a tribute from Christine Maggiore, another HIV-positive AIDS “sceptic” who famously rejected medication, and publicly urged others to do the same. As has been widely reported, Maggiore died last month of an illness commonly associated with AIDS.
Connie Howard, writing in today’s edition of VUE Weekly, finds the reaction to Maggiore’s passing distasteful, claiming that: “some AIDS activists are celebrating—not her death exactly, but celebrating a point for their team nonetheless”.
Howard suggests, echoing Hodgkinson, that “Many HIV-positive people who choose an alternative holistic health route defy all odds and stay well and symptom-free for decades”, and that she has “talked to HIV-positive people living well—really well—without drugs.”
According to Howard:
“it’s time that choice and discussion become possible without hate instantly becoming the most potent ingredient in the mix… The vitriol delivered the way of both dissidents and the reporters telling the stories of the dissidents is a crime… Christine Maggiore deserves to have chosen her own path and to be respected for it.”
AIDS denialists and their sympathisers often accuse mainstream AIDS researchers of not being open to “discussion” or “debate”. Yet meaningful discussion is only possible when both sides are operating in good faith. The problem with AIDS and HIV is that the evidence linking the two is so overwhelmingly strong that the only way to maintain a consistently denialist position is to engage in “bogus scepticism” – arbitrarily dismissing good evidence that undermines one’s favoured viewpoint, misrepresenting genuine research in order to create the appearance of controversy where there is none, seeking to give unpublished amateur research equal status with peer-reviewed studies by professional scientists, and treating minor uncertainties in the established theory as if they were knock-down refutations. In such circumstances, reasoned debate simply becomes impossible.
Howard doesn’t specify which AIDS activists she believes “view the death of an AIDS dissident as a victory” or have celebrated Maggiore’s passing, so it’s difficult to evaluate the truth of that particular claim.
But the notion that everyone is duty bound to “respect” Christine Maggiore’s decision to embrace AIDS denial – and counsel others to do the same – does seem a tad problematic.
What Howard chooses not to tell her readers is that Maggiore’s denial extended not only to refusing medical treatment for herself – she also declined to take measures to mitigate the risk of transmission to her young daughter, Eliza Jane, and refused to have her tested or treated for HIV. When Eliza Jane died in 2005 of what a public coroner concluded was AIDS-related pneumonia, Maggiore refused to accept the result, attacked the coroner’s credibility, and claimed that the verdict was biased.
Missing too, is any reference to South Africa, where Maggiore travelled in 2000 to promote her ideas on AIDS and HIV. Maggiore is said to have personally influenced Thabo Mbeki’s decision to block the provision of anti-retroviral drugs to HIV-positive pregnant women. A Harvard study recently concluded that this decision alone resulted in 35,000 more babies being infected with HIV than would otherwise have been the case. Overall, the study concluded, Mbeki’s denialist policies had led to more than 300,000 preventable deaths.
If the Harvard researchers are correct, then AIDS denialism – of which Christine Maggiore was a vocal proponent – has already caused many more deaths than did the war in Bosnia during the early 1990s. Yet the only “crime” that Connie Howard seems prepared to acknowledge in relation to AIDS and HIV is the ill-feeling directed towards Christine Maggiore, her fellow “dissidents”, and the journalists who give space to their denialist views – views which have repeatedly been shown to be based not on science, but on “selective reading of the scientific literature, dismissing evidence… requiring impossibly definitive proof, and dismissing outright studies marked by inconsequential weaknesses”.
Should we “respect” a person’s decision to refuse medical treatment, even if that leads to their own premature death? Arguably we should. But should we also respect that same person’s decision, on ideological grounds, to deny medical treatment to a young child, with fatal consequences? Should we respect their decision to support a pseudo-scientific campaign denying the established facts about a serious public health issue, when that campaign results in hundreds of thousands of deaths?
It is surely possible to agree that Christine Maggiore’s premature death was an appalling human tragedy, whilst pointing out that she was nonetheless dangerously misguided – and that the manner of her passing makes the tragedy all the more poignant.
Christine Maggiore, Jody Wells, Huw Christie, and David Pasquarelli form part of a grim roll-call of HIV-positive medication refusniks who chose to argue publicly that the state of their health cast doubt on the established science around AIDS and HIV, and then went on to die from the disease. For AIDS activists to remain silent in such circumstances would be a dereliction of duty. Publicly highlighting the human cost of AIDS denial, so that similar deaths may be prevented in future, must surely take precedence over showing “respect” to dangerously misguided people, however tragic the circumstances of their demise.