Archive for the ‘AIDS denialism’ Category
Debunking denialism and the fight for treatment: Campaigning for the rights of people with HIV & AIDS in South Africa.
Date: Wed 11 November 2009
Vuyiseka Dubula is General Secretary of the Treatment Action Campaign, a leading voice on HIV/AIDs campaigning in South Africa. She is a dynamic young woman leader of TAC, who lives openly with HIV, and who has been at the centre of most of their campaigns over the last 10 years.
Vuyiseka will share the story of TAC, the importance of activism in achieving their goals, the campaigning techniques that they have found to be effective and some of the challenges they have faced along the way – including debunking the myths that have been promoted about HIV and AIDS.
We hope you can join us for what promises to be a hugely informative talk followed by a question and answer session.
Entry is free but booking is essential. Please contact email@example.com or call 020 7033 1677 if you would like to attend./
In a democratic society, where compromise can be seen as tantamount to a civic duty, it is easy to assume that there are ‘two sides to every story’ – that, given any pair of opposing views, the truth will always be somewhere between them. The format of many TV, radio and newspaper reports tends to reinforce this mindset. A representative of one side will be invited to make a comment, and then an opposing view will be presented, with the reporter acting as a kind of referee. Even when a journalist isn’t explicitly reminding us that ‘the truth, as always, is somewhere in the middle’, the very fact that these two particular views have made it into the mainstream media automatically confers some degree of legitimacy on them both. And the fact that both are given equal airtime can add to the impression that they are both equally worthy of attention…
But if we take this principle too far, it can lead us into dangerous territory, and here the issue of ‘selection bias’ plays a vital role. The halfway point in a TV interview with a government minister on the issue of racism, for example, will look very different if the opposing view is from a human rights activist rather than a member of Migration Watch or the BNP. Similarly, the halfway point in an interview with the Archbishop of Canterbury will be very different if the counterpoint is from an atheist like Richard Dawkins rather than a Muslim imam. Even where the journalist conducting the discussion takes a meticulously balanced approach, the very choice of interviewees will inevitably constrain the debate and lead the audience in a particular direction…
At worst, the ‘somewhere in the middle’ mindset can be strongly biased in favour of the status quo, pushing us towards a homogenised average of the views that manage to make their way into the media, however barmy, extreme or well-funded… (From Don’t Get Fooled Again)
Gimpy has been doing some excellent work on the Riverdance Film Festival’s endorsement of the AIDS denialist film “House of Numbers”. I really hope that the producers make it available for free on the internet soon so that I can watch it, as I’m keen to find out what the fuss is about.
In the meantime, I was intrigued to see that The Spectator was organising their own showing on October 28th (£35 a ticket, for anyone who’s interested – evidently the credit crunch hasn’t yet reached Savoy Place). This will be followed by a debate between ex-UK Minister of Health Norman Fowler, Brent Leung (the film’s director) and Prof Beverly Griffin, Prof Charles Geschekter, and Dr Joe Sonnabend, who are described as “leading medical authorities”.
It seems to me that this is a really good illustration of two quite interesting nuances: Firstly, the way that a debate can be shaped and constrained from the outset, before a word has been spoken, simply through the selection of debate participants. Secondly, the way that the very existence of a debate can help to perpetuate a discredited ideology.
Beverly Griffin is an Emeritus (retired) Professor from London’s prestigious Imperial College, and a former director of the department of Virology at the Royal Postgraduate Medical School, Hammersmith Hospital. She has published widely on the Epstein-Barr virus and on Burkitt’s lymphoma, a cancer commonly associated with AIDS and believed to be caused, in part by Epstein-Barr. Griffin is quoted by the virusmyth website as suggesting, in 1991, that HIV might be “a necessary factor but not a sufficient explanation” of AIDS, or even that the virus might not cause the disease at all. The site also carries a broadly sympathetic 1989 book review by Griffin (originally published in Nature) of Jad Adams’ “AIDS; The HIV myth”.
Dr Joe Sonnabend is a New York physician (now also retired) who has been involved in treating AIDS patients since the early days of the outbreak, and was reportedly a pioneer of “community based research”, overseeing trials of new treatments for AIDS patients. Until the late 1990s, Sonnabend was among those arguing that the link between HIV and AIDS was unproven. He has reportedly since come to a different view, believing that “The evidence now strongly supports a role for HIV”, in causing AIDS, while continuing to argue that other causal factors must also be involved – and that high doses of the AIDS drug AZT “killed thousands” during the 1980s.
Charles Geschekter is a retired Professor of History from the University of Chicago, whose specialist area is African history. Geschekter has denied that there is an AIDS epidemic in Africa – describing it as “The Plague That Isn’t” – and arguing that the belief in such an epidemic was partly the product of racism and “western sexual stereotypes”. Geshekter also served on South Africa’s notorious Presidency AIDS Advisory Panel during Thabo Mbeki’s Presidency in early 2000.
Looking at the track records of the three experts listed, a number of things seem quite striking. Firstly, only Dr Sonnabend appears to have been directly involved in AIDS research – and even this research seems limited to the trialling of treatments, rather than the basic question of the link between HIV and AIDS. Prof Griffin clearly has a credible and longstanding research record, but the only entry on the list that mentions HIV is a reference to her 1989 book review in Nature. Prof Geshekter appears not to be a scientist at all, less still a “leading medical authority”.
What’s also striking is that all three ‘expert’ panelists have, at one time or another, adopted fringe views on HIV and AIDS, and been active in disputing the established scientific consensus. Of the five panel members chosen, only one, the former health minister Lord Fowler, appears unambiguously to share the view held by the overwhelming majority of scientists currently involved in AIDS research. Knowledgeable and eloquent though Norman Fowler doubtless is, he is not, himself, a clinician or researcher. It therefore seems doubtful that he will be able to represent the consensus view in a public debate as effectively as a fully qualified AIDS expert could have done – especially as he will be outnumbered four-to-one by people who take a minority view.
Perhaps one reason for this imbalance is that the real “leading medical authorities” on AIDS will generally refuse to share a platform with AIDS denialists, or engage in debate with them, largely for the same sorts of reasons that evolutionary biologists avoid Creationists, and established historians refuse to debate the Holocaust with the likes of David Irving. It’s possible for a person to be eloquent, reasonable-sounding and good at rhetorical point-scoring yet nonetheless wholly deluded and wrong. Science has arguably long passed the point where specialist questions could meaningfully be resolved through live oratory. The format of a face-to-face debate may make for good theatre, but it will usually be impossible for observers to go away and fact-check every technical claim being made. Where the scientific evidence is being distorted, mis-stated, or even made up completely on the spot, the lay audience will often be none the wiser.
But what is clear is that AIDS denialists such as Charles Geshekter and Brent Leung will benefit from being given such a high-profile platform for their views. The Spectator is, broadly speaking, a mainstream publication, and Savoy Place a prestigious central London venue. This event will, to paraphrase Richard Dawkins, look very good on their CV, and possibly open up further opportunities to spread the AIDS denial creed.
It seems to me unlikely that trying to persuade The Spectator, The Raindance Film Festival, or any other part of the establishment not to show “House of Numbers” is going to lead very far. We all know how much the pay-per-view media loves controversy – real or imagined – and the danger is that by trying to stop the film from being shown one just adds credence to the narrative about a Terrible Truth that the world is desperately trying to suppress. Personally I’d go the other way. If the makers of “House of Numbers” are right about AIDS, and the mainstream scientific community is wrong, then this is surely a message that as many people as possible need to hear. So why not make the film available for free online so that everyone can take a look, do their own fact-checking on the experts being quoted, and make up their own minds?
*Update* – BLBS comments:
It’s destined for youtube eventually anyway, no doubt. It’s cynical and manipulative but in such a dumbed-down way that you can see how some people might not get it if they’re not well informed. One example is Leung citing a Science Daily article with a headline saying something about studies suggesting that “sudden loss of T cells” doesn’t lead to AIDS. He goes right from there to say well, if sudden loss of T cells doesn’t lead to disease, then there “must” be co-factors or maybe HIV isn’t necessary at all.
He doesn’t mention that the studies are about transient CD4 T cell loss from the intestine of monkeys right after they’re infected with SIV. Specifically two monkey species, African green monkeys and sooty mangabeys, that are natural hosts of SIV and rarely develop disease. There is a recent theory that loss of intestinal CD4 T cells right after someone gets infected by HIV plays a key role in pathogenesis, and these studies do suggest that intestinal CD4 T cell depletion on its own is not be sufficient to precipitate disease progression. That’s what the Science Daily headline he’s quote-mining is trying to convey, albeit not very well.
But…the loss of CD4 T cells from the peripheral blood of human beings infected with HIV has been consistently associated with risk of disease and death in every study that’s looked the variables over the last 30 years. And unlike in SIV-infected African green monkeys and sooty mangabeys, loss of CD4 T cells from the intestine of people with HIV is not transient, but persistent.
So the studies do not in any way, shape or form suggest anything about co-factors, let alone that they “must” be required. In fact, these monkey models show the exact opposite, because when SIV from a natural host like the sooty mangabey is transferred across species into a rhesus macaque it causes progressive CD4 T cell loss, leading to opportunistic infections and death. No co-factors necessary. Same thing has happened because of the cross-species transfer of SIVcpz from chimps into humans, and there is of course ample precedent for disease resulting from cross-species transmission with many other pathogens.
Not surprisingly, out of all the people Leung interviews, he doesn’t interview the study authors or ask them about their work, because they’d have told him he’s out to lunch. It’s simply dishonest, and a typical denialist tactic.
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.
Mainstream medicine holds that “your genitals… are completely separate to the rest of your body” according to Boo Armstrong, circa 1996…
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
What follows is an extract from Ben Goldacre’s excellent book “Bad Science”, which he has made available on his website under a “Creative Commons” license, and asked people to distribute. Goldacre was unable to include the chapter in the hardback edition of the book because, at the time, Matthias Rath was suing him, and The Guardian, under the UK’s absurdly costly libel laws. I’m including the chapter here in full because I find it an outstanding account of one of the greatest scandals we’ve yet seen in this century, and the clearest possible illustration of the damage that pseudo-science can do. Many thanks to BSE for sending me the link.
This is an extract from
BAD SCIENCE by Ben Goldacre
Published by Harper Perennial 2009.
You are free to copy it, paste it, bake it, reprint it, read it aloud, as long as you don’t change it – including this bit – so that people know that they can find more ideas for free at www.badscience.net
The Doctor Will Sue You Now
This chapter did not appear in the original edition of this book, because for fifteen months leading up to September 2008 the vitamin-pill entrepreneur Matthias Rath was suing me personally, and the Guardian, for libel. This strategy brought only mixed success. For all that nutritionists may fantasise in public that any critic is somehow a pawn of big pharma, in private they would do well to remember that, like many my age who work in the public sector, I don’t own a flat. The Guardian generously paid for the lawyers, and in September 2008 Rath dropped his case, which had cost in excess of £500,000 to defend. Rath has paid £220,000 already, and the rest will hopefully follow. Nobody will ever repay me for the endless meetings, the time off work, or the days spent poring over tables filled with endlessly cross-referenced court documents.
On this last point there is, however, one small consolation, and I will spell it out as a cautionary tale: I now know more about Matthias Rath than almost any other person alive. My notes, references and witness statements, boxed up in the room where I am sitting right now, make a pile as tall as the man himself, and what I will write here is only a tiny fraction of the fuller story that is waiting to be told about him. This chapter, I should also mention, is available free online for anyone who wishes to see it.
Matthias Rath takes us rudely outside the contained, almost academic distance of this book. For the most part we’ve been interested in the intellectual and cultural consequences of bad science, the made-up facts in national newspapers, dubious academic practices in universities, some foolish pill-peddling, and so on. But what happens if we take these sleights of hand, these pill-marketing techniques, and transplant them out of our decadent Western context into a situation where things really matter?
In an ideal world this would be only a thought experiment. AIDS is the opposite of anecdote. Twenty-five million people have died from it already, three million in the last year alone, and 500,000 of those deaths were children. In South Africa it kills 300,000 people every year: that’s eight hundred people every day, or one every two minutes. This one country has 6.3 million people who are HIV positive, including 30 per cent of all pregnant women. There are 1.2 million AIDS orphans under the age of seventeen. Most chillingly of all, this disaster has appeared suddenly, and while we were watching: in 1990, just 1 per cent of adults in South Africa were HIV positive. Ten years
later, the figure had risen to 25 per cent.
It’s hard to mount an emotional response to raw numbers, but on one thing I think we would agree. If you were to walk into a situation with that much death, misery and disease, you would be very careful to make sure that you knew what you were talking about. For the reasons you are about to read, I suspect that Matthias Rath missed the mark.
This man, we should be clear, is our responsibility. Born and raised in Germany, Rath was the head of Cardiovascular Research at the Linus Pauling Institute in Palo Alto in California, and even then he had a tendency towards grand gestures, publishing a paper in the Journal of Orthomolecular Medicine in 1992 titled “A Unified Theory of Human Cardiovascular Disease Leading the Way to the Abolition of this Disease as a Cause for Human Mortality”. The unified theory was high-dose vitamins.
He first developed a power base from sales in Europe, selling his pills with tactics that will be very familiar to you from the rest of this book, albeit slightly more aggressive. In the UK, his adverts claimed that “90 per cent of patients receiving chemotherapy for cancer die within months of starting treatment”, and suggested that three million lives could be saved if cancer patients stopped being treated by conventional medicine. The pharmaceutical industry was deliberately letting people die for financial gain, he explained. Cancer treatments were “poisonous compounds” with “not even one effective treatment”.
The decision to embark on treatment for cancer can be the most difficult that an individual or a family will ever take, representing a close balance between well-documented benefits and equally well-documented side-effects. Adverts like these might play especially strongly on your conscience if your mother has just lost all her hair to chemotherapy, for example, in the hope of staying alive just long enough to see your son speak.
There was some limited regulatory response in Europe, but it was generally as weak as that faced by the other characters in this book. The Advertising Standards Authority criticised one of his adverts in the UK, but that is essentially all they are able to do. Rath was ordered by a Berlin court to stop claiming that his vitamins could cure cancer, or face a €250,000 fine.
But sales were strong, and Matthias Rath still has many supporters in Europe, as you will shortly see. He walked into South Africa with all the acclaim, self-confidence and wealth he had amassed as a successful vitamin-pill entrepreneur in Europe and America, and began to take out full-page adverts in newspapers.
˜The answer to the AIDS epidemic is here,” he proclaimed. Anti-retroviral drugs were poisonous, and a conspiracy to kill patients and make money. “Stop AIDS Genocide by the Drugs Cartel said one headline. “Why should South Africans continue to be poisoned with AZT? There is a natural answer to AIDS.” The answer came in the form of vitamin pills. “Multivitamin treatment is more effective than any toxic AIDS drug. Multivitamins cut the risk of developing AIDS in half.”
Rath’s company ran clinics reflecting these ideas, and in 2005 he decided to run a trial of his vitamins in a township near Cape Town called Khayelitsha, giving his own formulation, VitaCell, to people with advanced AIDS. In 2008 this trial was declared illegal by the Cape High Court of South Africa. Although Rath says that none of his participants had been on anti-retroviral drugs, some relatives have given statements saying that they were, and were actively told to stop using them.
Tragically,Matthias Rath had taken these ideas to exactly the right place. Thabo Mbeki, the President of South Africa at the time, was well known as an “AIDS dissident”, and to international horror, while people died at the rate of one every two minutes in his country, he gave credence and support to the claims of a small band of campaigners who variously claim that AIDS does not exist, that it is not caused by HIV, that anti-retroviral medication does more harm than good, and so on.
At various times during the peak of the AIDS epidemic in South Africa their government argued that HIV is not the cause of AIDS, and that anti-retroviral drugs are not useful for patients. They refused to roll out proper treatment programmes, they refused to accept free donations of drugs, and they refused to accept grant money from the Global Fund to buy drugs. One study estimates that if the South African national government had used anti-retroviral drugs for prevention and treatment at the same rate as the Western Cape province (which defied national policy on the issue), around 171,000 new HIV infections and 343,000 deaths could have been prevented between 1999 and 2007. Another study estimates that between 2000 and 2005 there were 330,000 unnecessary deaths, 2.2 million person years lost, and 35,000 babies unnecessarily born with HIV because of the failure to implement a cheap and simple mother-to-child-transmission prevention program. Between one and three doses of an ARV drug can reduce transmission dramatically. The cost is negligible. It was not available.
Interestingly, Matthias Rath’s colleague and employee, a South African barrister named Anthony Brink, takes the credit for introducing Thabo Mbeki to many of these ideas. Brink stumbled on the “AIDS dissident” material in the mid-1990s, and after much surfing and reading, became convinced that it must be right. In 1999 he wrote an article about AZT in a Johannesburg newspaper titled “a medicine from hell”. This led to a public exchange with a leading virologist. Brink contacted Mbeki, sending him copies of the debate, and was welcomed as an expert.
This is a chilling testament to the danger of elevating cranks by engaging with them. In his initial letter of motivation for employment to Matthias Rath, Brink described himself as “South Africa’s leading AIDS dissident, best known for my whistle-blowing exposé of the toxicity and inefficacy of AIDS drugs, and for my political activism in this regard, which caused President Mbeki and Health Minister Dr Tshabalala-Msimang to repudiate the drugs in 1999″.
In 2000, the now infamous International AIDS Conference took place in Durban. Mbeki’s presidential advisory panel beforehand was packed with “AIDS dissidents”, including Peter Duesberg and David Rasnick. On the first day, Rasnick suggested that all HIV testing should be banned on principle, and that South Africa should stop screening supplies of blood for HIV. “If I had the power to outlaw the HIV antibody test,” he said, “I would do it across the board.” When African physicians gave testimony about the drastic change AIDS had caused in their clinics and hospitals, Rasnick said he had not seen “any evidence” of an AIDS catastrophe. The media were not allowed in, but one reporter from the Village Voice was present. Peter Duesberg, he said, “gave a presentation so removed from African medical reality that it left several local doctors shaking their heads”. It wasn’t AIDS that was killing babies and children, said the dissidents: it was the anti-retroviral medication.
President Mbeki sent a letter to world leaders comparing the struggle of the “AIDS dissidents” to the struggle against apartheid. The Washington Post described the reaction at the White House: “So stunned were some officials by the letter’s tone and timing during final preparations for July’s conference in Durban that at least two of them, according to diplomatic sources, felt obliged to check whether it was genuine. Hundreds of delegates walked out of Mbeki’s address to the conference in disgust, but many more described themselves as dazed and confused. Over 5,000 researchers and activists around the world signed up to the Durban Declaration, a document that specifically addressed and repudiated the claims and concerns–at least the more moderate ones–of the “AIDS dissidents”. Specifically, it addressed the charge that people were simply dying of poverty:
The evidence that AIDS is caused by HIV-1 or HIV-2 is clearcut, exhaustive and unambiguous… As with any other chronic infection, various co-factors play a role in determining the risk of disease. Persons who are malnourished, who already suffer other infections or who are older, tend to be more susceptible to the rapid development of AIDS following HIV infection. However, none of these factors weaken the scientific evidence that HIV is the sole cause of AIDS… Mother-to-child transmission can be reduced by half or more by short courses of antiviral drugs â€¦ What works best in one country may not be appropriate in another. But to tackle the disease, everyone must first understand that HIV is the enemy. Research, not myths, will lead to the development of more effective and cheaper treatments.
It did them no good. Until 2003 the South African government refused, as a matter of principle, to roll out proper antiretroviral medication programmes, and even then the process was half-hearted. This madness was only overturned after a massive campaign by grassroots organisations such as the Treatment Action Campaign, but even after the ANC cabinet voted to allow medication to be given, there was still resistance. In mid-2005, at least 85 per cent of HIV-positive people who needed anti-retroviral drugs were still refused them. That’s around a million people.
This resistance, of course, went deeper than just one man; much of it came from Mbeki’s Health Minister, Manto Tshabalala-Msimang. An ardent critic of medical drugs for HIV, she would cheerfully go on television to talk up their dangers, talk down their benefits, and became irritable and evasive when asked how many patients were receiving effective treatment. She declared in 2005 that she would not be “pressured” into meeting the target of three million patients on anti-retroviral medication, that people had ignored the importance of nutrition, and that she would continue to warn patients of the sideeffects of anti-retrovirals, saying: “We have been vindicated in
this regard. We are what we eat.”
It’s an eerily familiar catchphrase. Tshabalala-Msimang has also gone on record to praise the work of Matthias Rath, and refused to investigate his activities. Most joyfully of all, she is a staunch advocate of the kind of weekend glossy-magazine-style nutritionism that will by now be very familiar to you. The remedies she advocates for AIDS are beetroot, garlic, lemons and African potatoes. A fairly typical quote, from the Health Minister in a country where eight hundred people die every day from AIDS, is this: “Raw garlic and a skin of the lemon–not only do they give you a beautiful face and skin but they also protect you from disease.” South Africa’s stand at the 2006 World AIDS Conference in Toronto was described by delegates as the “salad stall”. It consisted of some garlic, some beetroot, the African potato, and assorted other vegetables. Some boxes of anti-retroviral drugs were added later, but they were reportedly borrowed at the last minute from other conference delegates.
Alternative therapists like to suggest that their treatments and ideas have not been sufficiently researched. As you now know, this is often untrue, and in the case of the Health Minister’s favoured vegetables, research had indeed been done, with results that were far from promising. Interviewed on SABC about this, Tshabalala-Msimang gave the kind of responses you’d expect to hear at any North London dinner-party discussion of alternative therapies.
First she was asked about work from the University of Stellenbosch which suggested that her chosen plant, the African potato, might be actively dangerous for people on AIDS drugs. One study on African potato in HIV had to be terminated prematurely, because the patients who received the plant extract developed severe bone-marrow suppression and a drop in their CD4 cell count–which is a bad thing–after eight weeks. On top of this, when extract from the same vegetable was given to cats with Feline Immunodeficiency Virus, they succumbed to full-blown Feline AIDS faster than their non-treated controls. African potato does not look like a good bet.
Tshabalala-Msimang disagreed: the researchers should go back to the drawing board, and “investigate properly”. Why? Because HIV-positive people who used African potato had shown improvement, and they had said so themselves. If a person says he or she is feeling better, should this be disputed, she demanded to know, merely because it had not been proved scientifically? “When a person says she or he is feeling better, I must say ‘No, I don’t think you are feeling better’? I must rather go and do science on you’?” Asked whether there should be a scientific basis to her views, she replied: “Whose science?”
And there, perhaps, is a clue, if not exoneration. This is a continent that has been brutally exploited by the developed world, first by empire, and then by globalised capital. Conspiracy theories about AIDS and Western medicine are not entirely absurd in this context. The pharmaceutical industry has indeed been caught performing drug trials in Africa which would be impossible anywhere in the developed world. Many find it suspicious that black Africans seem to be the biggest victims of AIDS, and point to the biological warfare programmes set up by the apartheid governments; there have also been suspicions that the scientific discourse of HIV/AIDS might be a device, a Trojan horse for spreading even more exploitative Western political and economic agendas around a problem that is simply one of poverty.
And these are new countries, for which independence and self-rule are recent developments, which are struggling to find their commercial feet and true cultural identity after centuries of colonisation. Traditional medicine represents an important link with an autonomous past; besides which, anti-retroviral medications have been unnecessarily – offensively, absurdly – expensive, and until moves to challenge this became partially successful, many Africans were effectively denied access to medical treatment as a result.
It’s very easy for us to feel smug, and to forget that we all have our own strange cultural idiosyncrasies which prevent us from taking up sensible public-health programmes. For examples, we don’t even have to look as far as MMR. There is a good evidence base, for example, to show that needle-exchange programmes reduce the spread of HIV, but this strategy has been rejected time and again in favour of “Just say no.” Development charities funded by US Christian groups refuse to engage with birth control, and any suggestion of abortion, even in countries where being in control of your own fertility could mean the difference between success and failure in life, is met with a cold, pious stare. These impractical moral principles are so deeply entrenched that Pepfar, the US Presidential Emergency Plan for AIDS Relief, has insisted that every recipient of international aid money must sign a declaration expressly promising not to have any involvement with sex workers.
We mustn’t appear insensitive to the Christian value system, but it seems to me that engaging sex workers is almost the cornerstone of any effective AIDS policy: commercial sex is frequently the “vector of transmission”, and sex workers a very high-risk population; but there are also more subtle issues at stake. If you secure the legal rights of prostitutes to be free from violence and discrimination, you empower them to demand universal condom use, and that way you can prevent HIV from being spread into the whole community. This is where science meets culture. But perhaps even to your own friends and neighbours, in whatever suburban idyll has become your home, the moral principle of abstinence from sex and drugs is more important than people dying of AIDS; and perhaps, then, they are no less irrational than Thabo Mbeki.
So this was the situation into which the vitamin-pill entrepreneur Matthias Rath inserted himself, prominently and expensively, with the wealth he had amassed from Europe and America, exploiting anti-colonial anxieties with no sense of irony, although he was a white man offering pills made in a factory abroad. His adverts and clinics were a tremendous success. He began to tout individual patients as evidence of the benefits that could come from vitamin pills – although in reality some of his most famous success stories have died of AIDS. When asked about the deaths of Rath’s star patients, Health Minister Tshabalala-Msimang replied: “It doesn’t necessarily mean that if I am taking antibiotics and I die, that I died of antibiotics.”
She is not alone: South Africa’s politicians have consistently refused to step in, Rath claims the support of the government, and its most senior figures have refused to distance themselves from his operations or to criticise his activities. Tshabalala-Msimang has gone on the record to state that the Rath Foundation “are not undermining the government’s position. If anything, they are supporting it.”
In 2005, exasperated by government inaction, a group of 199 leading medical practitioners in South Africa signed an open letter to the health authorities of the Western Cape, pleading for action on the Rath Foundation. “Our patients are being inundated with propaganda encouraging them to stop life-saving medicine,” it said. “Many of us have had experiences with HIV infected patients who have had their health compromised by stopping their anti-retrovirals due to the activities of this Foundation.” Rath’s adverts continue unabated. He even claimed that his activities were endorsed by huge lists of sponsors and affiliates including the World Health Organization, UNICEF and UNAIDS. All have issued statements flatly denouncing his claims and activities. The man certainly has chutzpah.
His adverts are also rich with detailed scientific claims. It would be wrong of us to neglect the science in this story, so we should follow some through, specifically those which focused on a Harvard study in Tanzania. He described this research in full-page advertisements, some of which have appeared in the New York Times and the Herald Tribune. He refers to these paid adverts, I should mention, as if he had received flattering news coverage in the same papers. Anyway, this research showed that multivitamin supplements can be beneficial in a developing world population with AIDS: there’s no problem with that result, and there are plenty of reasons to think that vitamins might have some benefit for a sick and frequently malnourished population.
The researchers enrolled 1,078 HIV-positive pregnant women and randomly assigned them to have either a vitamin supplement or placebo. Notice once again, if you will, that this is another large, well-conducted, publicly funded trial of vitamins, conducted by mainstream scientists, contrary to the claims of nutritionists that such studies do not exist. The women were followed up for several years, and at the end of the study, 25 per cent of those on vitamins were severely ill or dead, compared with 31 per cent of those on placebo. There was also a statistically significant benefit in CD4 cell count (a measure of HIV activity) and viral loads. These results were in no sense dramatic – and they cannot be compared to the demonstrable life-saving benefits of anti-retrovirals – but they did show that improved diet, or cheap generic vitamin pills, could represent a simple and relatively inexpensive way to marginally delay the need to start HIV medication in some patients.
In the hands of Rath, this study became evidence that vitamin pills are superior to medication in the treatment of HIV/AIDS, that anti-retroviral therapies “severely damage all cells in the body–including white blood cells”, and worse, that they were “thereby not improving but rather worsening immune deficiencies and expanding the AIDS epidemic”. The researchers from the Harvard School of Public Health were so horrified that they put together a press release setting out their support for medication, and stating starkly, with unambiguous clarity, that Matthias Rath had misrepresented their findings.
To outsiders the story is baffling and terrifying. The United Nations has condemned Rath’s adverts as “wrong and misleading”. “This guy is killing people by luring them with unrecognised treatment without any scientific evidence,” said Eric Goemaere, head of Médecins sans Frontières SA, a man who pioneered anti-retroviral therapy in South Africa. Rath sued him.
It’s not just MSF who Rath has gone after: he has also brought time-consuming, expensive, stalled or failed cases against a professor of AIDS research, critics in the media and others.
But his most heinous campaign has been against the Treatment Action Campaign. For many years this has been the key organisation campaigning for access to anti-retroviral medication in South Africa, and it has been fighting a war on four fronts. Firstly, TAC campaigns against its own government, trying to compel it to roll out treatment programmes for the population. Secondly, it fights against the pharmaceutical industry, which claims that it needs to charge full price for its products in developing countries in order to pay for research and development of new drugs – although, as we shall see, out of its $550 billion global annual revenue, the pharmaceutical industry spends twice as much on promotion and admin as it does on research and development. Thirdly, it is a grassroots organisation, made up largely of black women from townships who do important prevention and treatment-literacy work on the ground, ensuring that people know what is available, and how to protect themselves. Lastly, it fights against people who promote the type of information peddled by Matthias Rath and his ilk.
Rath has taken it upon himself to launch a massive campaign against this group. He distributes advertising material against them, saying “Treatment Action Campaign medicines are killing you” and “Stop AIDS genocide by the drug cartel”, claiming–as you will guess by now–that there is an international conspiracy by pharmaceutical companies intent on prolonging the AIDS crisis in the interests of their own profits by giving medication that makes people worse. TAC must be a part of this, goes the reasoning, because it criticises Matthias Rath. Just like me writing on Patrick Holford or Gillian McKeith, TAC is perfectly in favour of good diet and nutrition. But in Rath’s promotional literature it is a front for the pharmaceutical industry, a “Trojan horse” and a “running dog”. TAC has made a full disclosure of its funding and activities, showing no such connection: Rath presented no evidence to the contrary, and has even lost a court case over the issue, but will not let it lie. In fact he presents the loss of this court case as if it was a victory.
The founder of TAC is a man called Zackie Achmat, and he is the closest thing I have to a hero. He is South African, and coloured, by the nomenclature of the apartheid system in which he grew up. At the age of fourteen he tried to burn down his school, and you might have done the same in similar circumstances. He has been arrested and imprisoned under South Africa’s violent, brutal white regime, with all that entailed. He is also gay, and HIV-positive, and he refused to take anti-retroviral medication until it was widely available to all on the public health system, even when he was dying of AIDS, even when he was personally implored to save himself by Nelson Mandela, a public supporter of anti-retroviral medication and Achmat’s work.
And now, at last, we come to the lowest point of this whole story, not merely for Matthias Rath’s movement, but for the alternative therapy movement around the world as a whole. In 2007, with a huge public flourish, to great media coverage, Rath’s former employee Anthony Brink filed a formal complaint against Zackie Achmat, the head of the TAC. Bizarrely, he filed this complaint with the International Criminal
Court at The Hague, accusing Achmat of genocide for successfully campaigning to get access to HIV drugs for the people of South Africa.
It’s hard to explain just how influential the “AIDS dissidents” are in South Africa. Brink is a barrister, a man with important friends, and his accusations were reported in the national news media –and in some corners of the Western gay press–as a serious news story. I do not believe that any one of those journalists who reported on it can possibly have read Brink’s indictment to the end.
The first fifty-seven pages present familiar anti-medication and “AIDS-dissident” material. But then, on page fifty-eight, this “indictment” document suddenly deteriorates into something altogether more vicious and unhinged, as Brink sets out what he believes would be an appropriate punishment for Zackie. Because I do not wish to be accused of selective editing, I will now reproduce for you that entire section, unedited, so you can see and feel it for yourself.
The document was described by the Rath Foundation as “entirely valid and long overdue”.
This story isn’t about Matthias Rath, or Anthony Brink, or Zackie Achmat, or even South Africa. It is about the culture of how ideas work, and how that can break down. Doctors criticise other doctors, academics criticise academics, politicians criticise politicians: that’s normal and healthy, it’s how ideas improve. Matthias Rath is an alternative therapist, made in Europe. He is every bit the same as the British operators that we have seen in this book. He is from their world.
Despite the extremes of this case, not one single alternative therapist or nutritionist, anywhere in the world, has stood up to criticise any single aspect of the activities of Matthias Rath and his colleagues. In fact, far from it: he continues to be fêted to this day. I have sat in true astonishment and watched leading figures of the UK’s alternative therapy movement applaud Matthias Rath at a public lecture (I have it on video, just in case there’s any doubt). Natural health organisations continue to defend Rath. Homeopaths’ mailouts continue to promote his work. The British Association of Nutritional Therapists has been invited to comment by bloggers, but declined. Most, when challenged, will dissemble.”Oh,” they say, “I don’t really know much about it.” Not one person will step forward and dissent.
The alternative therapy movement as a whole has demonstrated itself to be so dangerously, systemically incapable of critical self-appraisal that it cannot step up even in a case like that of Rath: in that count I include tens of thousands of practitioners, writers, administrators and more. This is how ideas go badly wrong. In the conclusion to this book, written before I was able to include this chapter, I will argue that the biggest dangers posed by the material we have covered are cultural and intellectual.
I may be mistaken.
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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.
Vue Weekly’s Connie Howard, who I took issue with here over her Jan 15th article urging “respect” for Christine Maggiore’s position on HIV and AIDS, has made some comments on this blog in response.
She also recently penned another article for Vue, in which she claims that:
One friend, who asked to remain nameless (for obvious reasons), tells me he has watched all but one of his HIV-positive friends die over the years—friends who did as they were told, who took their antiretroviral meds. He, also HIV-positive and so far refusing treatment, is alive and well… As my friend said, what set Christine Maggiore apart was her willingness to be unflinchingly realistic about the risks and toxicities of treatment, the unanswered questions and the potentially relatively lower risk of non-drug approaches. Does that not sound reasonable?
The implication of Howard’s piece seems to be that taking AIDS medications carries a grave health risk, while the dangers to those with HIV of refusing conventional treatment are “potentially relatively lower”. This is quite a big claim to make, as it appears to run counter to what the overwhelming majority of experts on AIDS believe, and could have serious impacts on public health if taken seriously.
Like the former Sunday Times medical correspondent Neville Hodgkinson (and the authors of Continuum Magazine), Howard’s argument centres on an HIV-positive individual who, she claims, remains in good health despite his refusal to take anti-retroviral medications, and has managed to outlive others who accepted conventional treatment. Unlike Hodgkinson, Howard declines to give any identifiable details about the case, citing “obvious reasons”.
The risks of journalists basing a serious public health claim on an un-named, unverifiable source should also be “obvious”.
Jody Wells – the seemingly-healthy HIV-positive medication refusnik presented in Hodgkinson’s article – was dead within a few years of the piece being published. So too, tragically, was Sylvie Cousseau, and many of the other cases cited in Continuum Magazine. Because these claimed counter-examples to the conventional science on AIDS and HIV were named, it was possible to verify the details, and follow what happened to them afterwards. But as the case presented by Howard is wholly anonymous, there is no way of independently checking the facts, whether Howard has reported them accurately, or even whether the person she cites actually exists.
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.
Comedian Bill Maher on Maggiore’s book “What If Everything You Thought You Knew about AIDS Was Wrong?”
One of the most striking features of the tragic life of AIDS denialist Christine Maggiore was her success in gaining high-profile support, perhaps most famously from Dave Grohl’s iconic band the Foo Fighters. Less well-publicised, if equally surprising, was the resounding endorsement given to Maggiore’s book, What If Everything You Thought You Knew about AIDS Was Wrong?, by the outspoken libertarian comedian Bill Maher.
“This is a book everyone should read, and not a moment too soon! One of the most corrosive flaws in America is our tendency toward conformity; in the quest to understand AIDS, it has been stifling. Christine Maggiore prompts the kind of questioning that is the lifeblood of scientific inquiry.”
The book has been described elsewhere as “unscholarly, misleading in its presentation of existing evidence and data”, and “based on speculation with no solid evidence to back up claims”.
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.
From the Alberta Reappraising AIDS Society
Every time an AIDS reappraiser dies, people are anxious to know whether it was AIDS. Those who support the dominant paradigm are hopeful that, if it was, it will cause all the other ‘denialists’ to smarten up and get on drug therapy right away. Dissidents, on the other hand, often still have a sense of insecurity. Every time one of their number dies of AIDS they are forced to confront the possibility that they have been living a delusion. Somehow one person dying from symptoms that would not be called AIDS in non-HIV-negative people is proof that the HIV-positive person really was killed by the virus.
Rob’s father, Bob Johnston summed it up: “The chemotherapy he had between November and January for the tumour on his cheek gave him very serious side effects which were then treated with an avalanche of drugs which we are sure put more pressure on his liver. The final straw was the reaction to codeine which he was taking for pain from his Parkinson’s disease (hardly an AIDS related disease). I hope the dissidents will not take Rob’s passing as in any way weakening their serious questioning of the now ‘traditional’ way of dealing with HIV…”
…Neither of your illnesses would have brought you down, Huw. 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. You knew the causes for your conditions and so did I. Poverty had taken its toll, and so had the no-future urban gay lifestyle you had in common with so many other gay men, especially in cities like London.
You really were too sensitive for this world, Huw, and, as you said to me one evening, ‘sensitive people die young’…
From Dean’s World
I don’t want to bring anything loud or contentious to Christine’s memory, or provide a feeding ground for those few vultures whose egos remain tied up in their insatiable death wishes, not only those they projected onto Christine, but onto all HIV positive people they wish to enslave with their cult of fear, and deprive of the fundamental human right to make their own choices.
Christine lived with a (fluctuating) positive HIV status for almost 17 years, not only healthy, but as leader for those who felt voiceless and powerless. She represented, and stood for the highest ideals of truth-seeking, life, love, health, and freedom from tyranny. She represented herself in all that she wrote, said, and enacted, each day that she lived. I defy anybody to find one instance of Christine Maggiore communicating malevolence or ill-will toward any human being, no matter what they had done to her. I also defy anybody to find one example in which her attackers chose to treat her with respect, fairness, dignity, or decency. Find one.
Our actions and words define us. We all get to draw the image of our own face, slowly, into the world around us, and by the time we die, that face will be defined, and it we’re lucky, we will be loved and missed and remembered for who we really were, and wanted to be. We live on in the memory of others. I have been deeply moved by the floods of letters and emails and calls I have been getting from people all around the world who Christine inspired and touched and helped.
I have no doubt that Maggiore suffered horribly from the grief that comes from losing a child, and I’m not unsympathetic to that. She suffered a loss that no parent should have to suffer, made all the more tragic because it was potentially preventable…. However, the clear preventability of Eliza Jane Scovill’s death is why my sympathy for her mother only goes so far. While my sympathy for Eliza Jane for having had her young life snuffed out prematurely by AIDS is enormous, my sympathy for Eliza Jane’s mother ended at the point that she allowed an antivaccine and HIV/AIDS denialist hack to try to whitewash her daughter’s autopsy report and try to spin the cause of death as being from an antibiotic reaction… My sympathy also bumps up against Maggiore’s prominent role in spreading a denialist philosophy that has arguably led to the deaths of an estimated hundreds of thousands in Africa…
HIV/AIDS denialism is a delusion that kills. It kills by encouraging HIV+ individuals not to take antiretroviral drugs, which have been shown unequivocably to prolong life and forestall progression of HIV infection to AIDS. It kills by encouraging quackery over effective antiretroviral therapy, as has happened in Africa, particularly under Thabo Mbeki’s regime in South Africa. Indeed, it has been estimated that the delay in introducing HAART therapy into Africa, which was in part due to denialist policies, resulted in the potentially preventable deaths of over 300,000. In the case of Christine Maggiore and her family, it has claimed at least one life and likely two lives, devastating a family. Unfortunately, HIV/AIDS denialists will continue to use logical fallacies, pseudoscience, and cherry picking of data and studies to argue otherwise.
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.