Archive for January 2009
People commonly referred to as “AIDS denialists” tend to prefer the description “AIDS sceptics”, “AIDS rethinkers” or “AIDS dissidents”, with some regarding “AIDS denialism” as a pejorative term, on a par with racial slurs.
Chris and Mark Hoofnagle define denialism as:
the employment of rhetorical tactics to give the appearance of argument or legitimate debate, when in actuality there is none. These false arguments are used when one has few or no facts to support one’s viewpoint against a scientific consensus or against overwhelming evidence to the contrary. They are effective in distracting from actual useful debate using emotionally appealing, but ultimately empty and illogical assertions.
If “pejorative” is defined as “having a disparaging, derogatory, or belittling effect or force”, then “AIDS denialist” would certainly seem to fit the bill – but does that mean that it’s wrong to use the term?
It seems to me that this really depends on whether or not “denialism” is an accurate description of the behaviour of the people-commonly-known-as-AIDS-denialists. There are plenty of terms in our language that have a disparaging meaning – “liar”, “alarmist”, “criminal”, “conspiracy theorist”, “bigot”, “crank” etc. – but that doesn’t necessarily mean that it’s always wrong to use them. It would clearly be unfair to describe as a”liar” someone who had lived a life of impeccable honesty. But where a person appears knowingly to have engaged in a systematic campaign of deception, an insistence on the use of a neutral, non-perjorative, term to describe them and their behaviour would actually be a watering down of the truth, and may even be seized on as a validation of their actions.
This is really the problem I have with labels like “AIDS sceptic” (or “AIDS skeptic”). The website “UK-skeptics” defines “skepticism” as “an honest search for knowledge”. To describe those who deny the evidence linking HIV and AIDS as “sceptics” seems therefore to presuppose that they are both honest, and genuinely searching for knowledge (rather than seeking to defend a particular ideological position), which many would dispute.
The term “AIDS dissident” is arguably even worse, conjuring, as it does, images of Soviet-era democracy campaigners being rounded up and imprisoned for speaking the truth to a dogmatic, authoritarian establishment. Those battling to convince the world that HIV is not the cause of AIDS may well see themselves in a similar light, but in reality there have been no jailings or show trials – and 101 badly-formatted websites testify to the unfettered freedom with which the self-described “dissidents” have been able to make their case.
“AIDS rethinker” is perhaps the least objectionable term – but again its accuracy seems questionable, as it suggests a willingness to rethink one’s ideas which many would argue is precisely what is lacking in those who deny the link between AIDS and HIV. It also seems rather broad. AIDS scientists are continually rethinking and redeveloping their ideas about the disease as new data comes along, and could therefore quite reasonably be described as “AIDS rethinkers” too. If we’re looking for an alternative term that uniquely identifies those commonly referred to as “AIDS denialists”, then “AIDS rethinker” seems to obfuscate matters rather than clarify them.
None of the commonly-used terms for describing those who deny the link between HIV and AIDS seem to me to be value-neutral. “AIDS denialist” is a term with negative connotations – but I’m not sure that this matters. If those negative connotations are justified, then the term is accurate. And when we’re dealing with a problem as serious as HIV and AIDS, accuracy is arguably more important than sparing the feelings of a group of dangerous and misguided people.
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.
Yesterday I listened, in growing disbelief, to the last episode of HIV-positive AIDS denialist Christine Maggiore’s regular podcast, “How Positive Are You?”. The programme is dated December 6th, just 3 weeks before Maggiore’s sudden death from pneumonia, although comments in the podcast itself suggest it was recorded the previous month.
The discussion is co-presented by David Crowe, who early in the programme recounts with pride some of the comments he has received via email. He’s particularly pleased about one from an HIV-positive listener who reads the “Alive and Well” website every day, and who has chosen to disregard his doctor’s advice, forgoing anti-retroviral drugs in favour of eating lots of nutritious food and breathing plenty of fresh air. “Wow, that’s beautiful”, Maggiore gushes.
Later on, Crowe and Maggiore conduct a phone interview with AIDS clinician Dr. Jocelyn Dee, who had (along with several colleagues) advised the makers of the TV drama “Law and Order SVU”. In October last year, the programme featured a fictional tragedy strikingly similar to that which hit Maggiore’s family in 2005, when her young daughter died suddenly from what a coroner later determined to be AIDS-related pneumonia. Maggiore, who was HIV positive, had refused to take medications that would have reduced the risk of transmission to her unborn child, and also declined to have her tested for HIV once she was born. Maggiore disputed the coroner’s report, and insisted that her daughter had in fact died from an allergic reaction to antibiotics. All of these details were echoed in the ostensibly-fictional TV show.
During the interview, Dr. Dee is initially unaware of Maggiore’s background, and of the final shape of the programme for which she had been an adviser; she explains that she found the show too difficult to watch because the subject matter was so close to the situations she saw every day through her work with HIV-positive people. When Maggiore finally reveals the full facts, Dee seems shocked yet sympathetic.
To hear Maggiore calmly recount the details of a programme so obviously based on her own life is chilling enough. But the most painful moment comes when she ridicules the fact that, in the fictionalised version of her life, the story ends with the denialist mother dying suddenly from an AIDS-related illness. Maggiore wonders aloud whether this might have been some kind of ‘wish fulfilment’ on the part of those who despise her refusal to accept the conventional view of HIV and AIDS.
Throughout the programme Maggiore seems lucid and eloquent. She was clearly a highly intelligent person who believed passionately that she was doing the right thing – which of course made her all the more dangerous. I’m not sure I’ve ever seen a starker illustration of how far a well-structured, well-intentioned, well-expressed, and internally consistent argument can take you, even when your basic facts are nonetheless catastrophically flawed. Tragically there are some facts that no amount of nuanced, intelligent argument can refute, or psychoanalyse away.
It’s good to question conventional wisdom, except when it isn’t. Conventional wisdom holds that a bridge designed by engineers and built by reputable builders is safer to drive across than one designed by shamans and built by hairdressers. Questioning that conventional wisdom is not really all that productive, and if anyone listens to the questioning, it’s downright lethal.
So with Christine Maggiore.
Until the end, Christine Maggiore remained defiant.On national television and in a blistering book, she denounced research showing that HIV causes AIDS. She refused to take medications to treat her own virus. She gave birth to two children and breast fed them, denying any risk to their health. And when her 3-year-old child, Eliza Jane, died of what the coroner determined to be AIDS-related pneumonia, she protested the findings and sued the county.
That’s the risky kind of questioning conventional wisdom – and it risks other people as well as oneself. That’s why Prince Charles makes me angry when he indulges his passion for denouncing non-alternative medicine, and it’s why Juliet Stevenson made me angry when she used her celebrity to denounce the conventional wisdom about the MMR vaccine and autism, and it’s why Christine Maggiore makes me angry even though she’s now dead. It makes me angry that she breast-fed her children and it makes me angry that she went on television to denounce research showing that HIV causes AIDS. People shouldn’t do that. People shouldn’t take on life and death medical issues when they have no training or expertise in the subject. People shouldn’t trust their own judgment that completely.
For years, the South African government joined with Maggiore in denying that HIV is responsible for AIDS and resisting antiretroviral treatment. According to a new analysis by a group of Harvard public health researchers, 330,000 people died as a consequence of the government’s denial and 35,000 babies were born with the disease.
It’s not a subject for hobbyists or cranks or princes or actors. Children must never play with matches.
I believe that most reporters in the media do really want to get it right. However, they are hobbled by three things. First, many, if not most, of them have little training in science or the scientific method and are not particularly valued by their employers. For example, witness how CNN shut down their science division. Second, the only medical or science stories that seem to be valued are one of three types. The first type is the new breakthrough, the cool new discovery that might result in a new treatment or cure. Of course, this type doesn’t distinguish between science-based and non-science-based “breakthroughs.” They are both treated equally, which is why “alternative medicine” stories are so popular. The second type is the human interest story, which is inherently interesting to readers, listeners, or viewers because, well, it’s full of human interest. This sort of story involves the child fighting against long odds to get a needed transplant, for example, especially if the insurance company is refusing to pay for it. The third type, unfortunately, often coopts the second type and, to a lesser extent, the first type. I’m referring to the “medical controversy” story. Unfortunately, the “controversy” is usually more of a manufactroversy. In other words, it’s a fake controversy. No scientific controversy exists, but ideologues desperately try to make it appear as though a real scientific controversy exists. Non-medical examples include creationism versus evolution and the “9/11 Truth” movement versus history. Medical examples include the so-called “complementary and alternative medicine” movement versus science-based medicine and, of course, the anti-vaccine movement.
From Dean’s World
The news has been shattering to all who loved her around the world. Speaking for myself, I can say that Christine Maggiore was one of the strongest, most ethical, compassionate, intelligent, brave, funny, and decent human beings I have ever had the honor to know. I spoke to her in great depth about all aspects of life, death, love, and this battle we both found ourselves mired in, and I will be writing about her and about those conversations here, in the future. No matter what she was going through, and it was always, frankly, sheer hell–every day of her life, since 2005, she faced, acute grief, sadistic persecution, wild injustice, relentless battle, and deep betrayal–she was always there for her friends, and she never descended to human ugliness. She always tried to take the high road. She always tried to be stronger than any human being could ever be asked to be. I feared for her life, always. I feared the battle would kill her, as I have felt it could kill me, if I couldn’t find enough beauty to offset the malevolence. This is a deeply occult battle, and Christine got caught in its darkest shadows.
She had apparently been on a radical cleansing and detox regimen that had sickened her and left her very weak, dehydrated, and unable to breathe. She was shortly thereafter diagnosed with pneumonia and placed on IV antibiotics and rehydration. But she didn’t make it.
Those who loved her, as I did, have our own interpretations of what ultimately killed her–a combination of unrelenting heartbreak and the effect of being subject to a constant, unrelenting media driven hate campaign, despite the complete legal clearing of her name in the death of her daughter Eliza Jane in 2005, who died after taking an antibiotic, and whose cause of death has been tortuously debated. Christine and her husband Robin were denied the right to adopt a child, or foster a child, due to a single article in the L.A. Times which cast her as a murderer.