Archive for the ‘AIDS denialism’ Category
The Immunity Resource Foundation (UK charity 1105986) says that its aims include:
“(I) TO ADVANCE THE EDUCATION OF THE PUBLIC IN THE FIELDS OF MEDICINE, HEALTH CARE AND MEDICAL SCIENCE; AND
(II) TO RELIEVE SICKNESS AND ASSIST SICK AND DISABLED PERSONS …BY PROVIDING THEM WITH ACCESS TO INFORMATION CONCERNING DISEASES AND MEDICAL CONDITIONS (AND IN PARTICULAR AIDS) AND THE TREATMENTS, THERAPIES AND RESEARCH STUDIES RELATING THERETO, AND WITH ADVICE AND SUPPORT;”
But the scientific claims about AIDS published on the organisation’s website are dangerously inaccurate. On this page, Joan Shenton, the organisation’s “Founder and administrator”, suggests that AIDS “is not an infectious disease” and that “HIV cannot cause AIDS”.
The articles linked to on this page all lean in the same direction, and many of them are by known AIDS denialists, notably the discredited virologist Peter Duesberg and the journalists Neville Hodgkinson, Celia Farber and John Lauritsen.
A Harvard study published last year concluded that the adoption of AIDS denial in South Africa by the government of Thabo Mbeki in the early part of this decade had contributed to more than 365,000 preventable deaths. In a speech in 1999, Mbeki had cited “the huge volume of literature on this matter available on the Internet” in support of his position on HIV and AIDS.
Professor Seth Kalichman’s excellent new book, Denying AIDS, is the most comprehensive account yet of the origins and development of a toxic ideology – AIDS denialism. In this e-interview, Seth discusses the book, and the urgent issues that it seeks to address.
RW: Why does AIDS denialism matter?
AIDS denialism matters because it kills people. I know this sounds like drama and hyperbole, but it is true. AIDS denialism creates confusion about the cause of AIDS. when people who need accurate information about HIV/AIDS are exposed to AIDS denialism they might actually believe that there is a debate among doctors and scientists about the cause of HIV when there is no such debate. AIDS denialists tell people that they should avoid HIV tests because they are invalid. In fact, HIV tests are extremely accurate and only rarely misdiagnose people with HIV. Being HIV infected and not knowing your HIV status means that you may not take measures to keep from spreading the virus. In many countries the majority of HIV infected people do not know they are infected. Huge resources are dedicated to getting people at risk for HIV tested. AIDS denialists undermine these efforts. Finally, AIDS denialism matters because it persuades people who have tested HIV positive to refuse HIV treatments. Denialists say that HIV treatments are toxic poison. In fact, HIV treatments are responsible for extending the lives and improving the health of people living with HIV/AIDS. In the US and UK, entire hospital wards that were once for AIDS patients are no longer needed. People with HIV are returning to work and living healthier lives because of treatments. AIDS deniers are trying to reverse this trend and return to days when there were no treatments.
RW: What was the inspiration for “Denying AIDS”?
I have been conducting HIV/AIDS prevention and treatment research in the US since 1989 and in South Africa since 2001. I have known for years that AIDS denialists exist, but like most people I thought that ignoring them would make them just go away. I also thought that very few people were AIDS denialists and that no one would listen to them. I suppose you could say I was denial about AIDS denialism. Like many others, I was very wrong about AIDS denialism. While working in South Africa I became aware of the devastating effects that AIDS denial was having in that country. The former President Thabo Mbeki had enlisted AIDS denialists among his advisors and bought into the idea that scientists are debating the cause of AIDS. Mbeki’s misguided AIDS policies resulted in over 330,000 senseless deaths and 35,000 babies who were needlessly infected with HIV. I was aware of the failure to offer treatment for South Africans living with HIV/AIDS and I knew that AIDS denial was to blame. In 2006 I also became aware of AIDS denialists in the US and UK. I received an email correspondence from someone I knew to be a well trained social psychologist in a teaching position at a respected university. She had written a very positive review of an old AIDS denialist book by Professor Peter Duesberg in California, the most notorious AIDS denialist. This psychologist had posted the book review at the RethinkingAIDS.com website. I was absolutely dumbfounded to learn that someone who I knew to be educated and who I believed to be intelligent had not only bought into AIDS denial but was actively propagating the myths. I started to look at the AIDS denialist literature and found it disturbing and also fascinating. I wanted to learn more about how seemingly intelligent people would come to believe absolute rubbish. So I decided to write Denying AIDS.
RW: What kinds of people become AIDS denialists, and what motivates them?
All kinds of people become AIDS denialists. Most visible are the fringe scientists because they write books and have websites. They are following in the footsteps of Peter Duesberg. Still, AIDS denialists who have academic positions do considerable harm because they create an impression of credibility. There are also rogue journalists who write about conspiracy theories and other sensational pseudo-news. AIDS denialist journalists do considerable harm because they bring AIDS denialism into the public eye. AIDS denialism also has its activists, typically people who have tested HIV positive and buy into denialism as a maladaptive coping strategy. These denialists also have credibility because they appear to be living healthy with HIV and not taking medications. There are even celebrities who support AIDS denialist activism, including the popular rock band the Foo Fighters and comedian Bill Maher. Tragically, AIDS denialist activists have infected their children and others and they themselves die of AIDS earlier than they may have if they accepted treatment. Then there is a large group of people who are prone to conspiracy theorizing, anti-government sentiments, and simply wanting to make mischief. These people are typically Internet bloggers with way too much time on their hands. Many seem not to realize the harm they are causing and most others just do not seem to care.
RW: Who are the key figures in the AIDS denial movement, and what are their ideas?
In my opinion, the key figures include the following people:
Peter Duesberg is the single most important figure in HIV/AIDS denialism because he is the only credentialed scientist who has worked with retroviruses, although not having worked with HIV, to propose that HIV does not cause AIDS. The rock star of AIDS denialism, he holds fast to his flawed ideas. What makes him unique is that he was once a respected scientist and now shows utter disrespect for science by refuting facts in the service of self-promotion.
David Rasnick is Peter Duesberg’s right hand man. Quite literally, in public Rasnick appears to be Duesberg’s personal assistant. At one time, he had a visiting scholar appointment with the Department of Molecular and Cell Biology at UC Berkeley (1996-2005), where he worked with Duesberg, although the university retracted his appointment. Rasnick is a conspiracy theorist, claiming that the US government propagates the ‘myth’ that HIV causes AIDS to allow the pharmaceutical industry. Rasnick served with Duesberg on the now infamous panel of AIDS experts and denialists convened by South African President Thabo Mbeki in 2000. In fact, Rasnick is credited, or blamed, with convincing Mbeki that there is a need for a scientific debate on the cause of AIDS. He also worked with Matthias Rath in conducting what are now ruled unlawful vitamin studies in South Africa.
Kary B. Mullis was a Nobel Laureate and is now among the who’s who of AIDS pseudoscientists. In 1994, Mullis co-authored the essay “What causes AIDS? It’s an open question” and he has appeared in several interviews in which he clearly questions whether HIV causes AIDS. Mullis said, “If there is evidence that HIV causes AIDS, there should be scientific documents which either singly or collectively demonstrate that fact, at least with a high probability. There is no such document.” Mullis is widely held as an eccentric who has shared his experiences, including his abduction by extraterrestrials.
Eleni Papadopulos-Eleopulos, a medical physicist based at the Royal Perth Hospital published a paper in 1988 declaring that HIV had never been correctly isolated as a distinct ‘pure’ virus. Along with Valendar Turner and John Papadimitriou, this group proclaims that HIV does not even exist! Like Duesberg, they say that drugs, poverty, and HIV medications cause AIDS. They also broaden their view by claiming other sources of immune suppression can lead to AIDS, such as repeated exposure to semen among gay men, although seemingly not women. They propose that an oxidation process occurs in response to HIV/AIDS risk factors, such as drug use, malnutrition, and exposure to semen that causes immune suppression and ultimately AIDS.
Etienne de Harven retired from the University of Toronto and having been a Professor of Cell Biology at Sloan Kettering Institute New York from 1956 to 1981. de Harven isolated and conducted electron microscopic studies of the murine (mouse) friend leukemia virus. He was also a member of the 2000 South Africa’s Presidential AIDS Advisory Panel and is a recognized leader among AIDS Rethinkers. He worked as a scientist in his field from the 1950’s until he retired. He challenged the proof that HIV has been isolated, according to the standards laid down by him. de Harven has said, “Dominated by the media, by special pressure groups and by the interests of several pharmaceutical companies, the AIDS establishment efforts to control the disease lost contact with open-minded, peer-reviewed medical science since the unproven HIV/AIDS hypothesis received 100% of the research funds while all other hypotheses were ignored.”
Christine Maggiore was the founder of Alive & Well, and was perhaps the most visible and visited HIV/AIDS denialist website. She tested HIV positive and remained untreated. Her three-year-old daughter Eliza Jane Scovill died of complications of AIDS whereas second opinions state that the death was the result of an adverse reaction to antibiotics. Maggiore founded Alive & Well in 1995 and wrote What If Everything You Thought You Knew about AIDS Was Wrong? Her story was portrayed on the popular US television show “Law & Order SVU” in October 2008. Christine Maggiore died of AIDS just a couple months later in December 2008. She is no longer with us, but her harmful legacy lives on.
Celia Farber is a journalist who has chronicled the Peter Duesberg phenomenon since the late 1980s. She has a personal relationship with Bob Guccione the founder of Penthouse Magazine and owner of Penthouse Media Group, Inc. affording Farber considerable access to the publishing world. In 1987, Farber began writing and editing a monthly investigative feature column “Words from the Front” in SPIN Magazine, owned by Guccione. She has been featured in Discover Magazine, also owned by Guccione. These articles focused on the critiques of HIV/AIDS science. In 2006 she published an article “Out of control: AIDS and the corruption of medical science” in Harper’s magazine which stirred interest as the article represented a breakthrough of HIV/AIDS denialism into mainstream media. The article is also a chapter in her book, Serious Adverse Events: An Uncensored History of AIDS, a collection of her magazine articles, mostly from the 1980s and 1990s. Farber has taken Duesberg on as a cause and in so doing has engaged in several rather nasty exchanges with AIDS scientists, most notably Robert Gallo. Along with Duesberg, Farber received a 2008 Clean Hands Award from the Semmelweis Society for her speaking out about the truth in AIDS. She has most recently filed a libel lawsuit against an HIV treatment advocacy group in New York City.
RW: Some people say that AIDS denial is a fringe ideology, that only affects a tiny group of people. What would you say to that?
I would say that it is true that AIDS denialism is a fringe ideology and that a fairly small group of people are actively involved in propagating AIDS denial. However, there is considerable evidence that that significant numbers of people are affected by AIDS denial. We know that in the US over 40% of Gay men question whether HIV is the cause of AIDS. We know that a majority of people who should be tested for HIV refuse. We know that people turn to the Internet for AIDS information and find AIDS denialism on numerous websites. We know that people are vulnerable to confusing information, especially when it is something that anyone would want to hear, such as HIV is not the cause of AIDS. There is no telling how many people have been harmed by AIDS denialism or how many listen to them. Whether it be thousands or hundreds of thousands who listen to AIDS denialists, we know from the South African experience that if just one person with power to make decisions listens the results can be devastating.
RW: In “Denying AIDS” you make comparisons between AIDS denial and other fringe ideologies – could you tell us a bit more about that?
The similarities between AIDS denialism and cancer denialism, Holocaust Denial, 9/11 Truth Seeking, and Global Warming Denial are striking. All of these groups use the same tactics to create the impression that experts disagree and that the historical record is in dispute. They all use selective information taken out of context that supports their viewpoint. They ignore facts and propel myths. They include pseudo-experts. They rely on conspiracy theories to gain attention. They are persuasive in their rhetoric. They use books to circumvent peer-review, they create their own periodicals, and they produce documentary looking films. They also effectively use the Internet and have manipulated their way into mainstream media. In some cases, they are even the same people! I believe that there is a denialism prone personality that I discuss in Denying AIDS. People who approach the world from a suspicious stance, are anti-establishment, and somewhat grandiose are among those who are prone to denialism.
RW: What is the relationship between AIDS denial and alternative medicine?
Not all AIDS denialists sell alternative treatments, but some do. However, all AIDS denialists pave the path for fraudulent cures and snake oil treatments. AIDS denialist say that HIV does not cause AIDS, leaving open the question of what should be done to treat AIDS? Among the most notorious AIDS denialists are those who sell remedies, such as Matthias Rath and Gary Null who sell vitamins and nutritional supplements they have proclaimed treat HIV/AIDS. Ben Goldacre has written about Matthias Rath’s destructive profiteering in his book Bad Science. AIDS denialists have on occasion worked closely with these vitamin entrepreneurs, as was the case when American David Rasnick and South African Anthony Brink teamed up with Matthias Rath. Of course, many people make well informed decisions and choose to complementary treatments such as nutritional supplements and vitamins as part of their HIV-related health care. Indeed, people may even make informed decisions to forego anti-HIV mediations. I believe we should respect these decisions when they are well-informed. HIV treatments are not for everyone. The problem we have with AIDS denialism is that it misinforms people and steers them away from HIV treatments. People are therefore being deceived by denialism to make misinformed decisions, and that of course is not okay.
RW: What did you come across in the course of your research that especially surprised you?
It surprised me that the AIDS denialists truly believe what they are saying. I had thought that they must be blatant liars and scam artists. Perhaps some are. But I have come to realize that most AIDS denialists really believe that HIV does not cause AIDS. They tend to be paranoid and their suspicious cognitive style bends facts to fit their preconceived notions. I will never forget when Peter Duesberg looked me dead in the eyes and said “You know, there is no vaccine for this; it is not an infectious disease.” I have no question that he believes what he says, as mad as it is.
Seth C. Kalichman is a Professor of Psychology at the University of Connecticut, and the Editor of the journal AIDS and Behavior. His new book is “Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy”; royalties are donated to buy HIV meds in Africa. http://denyingaids.blogspot.com
African Union sends man who oversaw 300,000 deaths in South Africa to investigate reports of 300,000 deaths in Darfur – assisted by the man who oversaw 300,000 deaths in Burundi
Hot on the heels of its anguished denunciation of the international indictment of Sudanese President Omar Bashir over war crimes and crimes against humanity in Darfur, the African Union has further cemented its global credibility by appointing ex-South African President Thabo Mbeki to look into the charges.
Mbeki is certainly an interesting choice for a mission whose ostensible aim is to establish the truth about a life-or-death humanitarian issue.
As President of South Africa, Mbeki famously bought into the claims of internet conspiracy theorists who say that HIV does not cause AIDS, and that the illness is actually caused by the medications used to treat the disease. A Harvard study recently concluded that the Mbeki government’s steadfast refusal to make AIDS medicines available to those with HIV may have led to over 330,000 preventable deaths.
To add further gravitas, Mbeki will be assisted, according to Voice of America (who give a slightly different account of the purpose of the mission), by the former President of Burundi, Major General Pierre Buyoya.
Buyoya is widely suspected of orchestrating the 1993 assassination of the man who had defeated him at the ballot box earlier that year, the country’s first democratically-elected Hutu President, Melchior Ndadaye. The killing triggered a brutal, decade-long ethnic war in which more than 300,000 people, mostly civilians, are believed to have died.
For most of this period, Buyoya was in charge, having seized the Presidency in a coup in 1996. During Buyoya’s reign, forces under his command carried out a series of brutal massacres against the Hutu civilian population – but as the International Criminal Court can only investigate crimes committed after 2003 – the year Buyoya’s rule ended, it’s unlikely that he will face justice any time soon. A long promised UN-aided “special court” for Burundi has yet to materialise.
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.