Posts Tagged ‘aids denial’
Of all the tragic individual stories I’ve come across recently about the impact of AIDS denialism, this has to be among the very saddest:
From Denying Aids
Maniotis claims that Lambros was like a brother to him. With such brothers, who needs enemies? The two men became friends, and Maniotis visited Lambros often in the last few years, his influence growing stronger and stronger, ultimately convincing him that HIV did not exist. Lambros stopped taking his medication and the result was devastating. After his death, Lambros’s family and friends found his medication in his refrigerator, untouched since 2007. Instead of his life-saving doctor prescribed medicine, Lambros was convinced to consume Maniotis-promoted vitamins…
HIV ultimately landed him at Howard University Hospital under unclear circumstances. The most likely scenario is that he was found confused and disoriented and was taken to the closest emergency room. He had developed encephalitis, a common outcome of end-stage HIV infection. He was later transferred to Georgetown Hospital, where he died of encephalitis. During his more lucid moments at the hospital, Lambros told his friends he was dying of AIDS…
Charity commission says it has no powers to act against a UK charity putting out dangerous misinformation on AIDS
I recently blogged about a UK registered charity called the “Immunity Resource Foundation”, whose official objectives include:
“To advance the education of the public in the fields of medicine, health care and medical science”
“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)…”
But the information promoted on the charity’s website includes the claim that “the AIDS edifice is built upon a false hypothesis”, that AIDS “is not an infectious disease” and that “HIV cannot cause AIDS”. The charity also provides links to a range of AIDS denialist websites, including “Living Without HIV Drugs” – which urges HIV-positive patients to stop taking conventional medications.
As has been well-documented elsewhere, this kind of misinformation around HIV and AIDS has already done enormous damage, with a grim roster of HIV-positive AIDS denialists dying after refusing to take medicines that could have saved their lives, and many thousands more deaths resulting from the application of AIDS denialist ideas by the South African government.
Far from advancing the “education of the public”, any organisation which promotes these ideas is disseminating dangerous misinformation. And far from relieving sickness, the promotion of AIDS denialism under the guise of providing health information can have deadly consequences.
The Charity Commission exists to ensure that charities registered in England and Wales benefit the public interest and act in accordance with their stated objectives. However, when contacted about the activities of the Immunity Resource Foundation, the Commission stated that:
We do not have the remit or expertise to judge whether they are providing the correct advice. We can only become involved in matters where our regulatory powers permit us to intervene and unfortunately this issue falls outside of that remit.
The upshot of this seems to be that a registered charity is free to make false, misleading and dangerous scientific claims about a major public health issue – even where this runs directly contrary to the charity’s official objectives – because the government body that regulates charities does not have access to the technical expertise necessary to evaluate such claims.
This seems like quite a big loophole, and also something of a double-standard. Whereas a private business that makes false scientific claims about its products is answerable, at least in principle, to the Trading Standards Institute, it would appear that UK registered charities are currently free to disseminate pseudo-science more or less with impunity.
The Immunity Resource Foundation (UK charity 1105986) says that its aims include:
“(I) TO ADVANCE THE EDUCATION OF THE PUBLIC IN THE FIELDS OF MEDICINE, HEALTH CARE AND MEDICAL SCIENCE; AND
(II) TO RELIEVE SICKNESS AND ASSIST SICK AND DISABLED PERSONS …BY PROVIDING THEM WITH ACCESS TO INFORMATION CONCERNING DISEASES AND MEDICAL CONDITIONS (AND IN PARTICULAR AIDS) AND THE TREATMENTS, THERAPIES AND RESEARCH STUDIES RELATING THERETO, AND WITH ADVICE AND SUPPORT;”
But the scientific claims about AIDS published on the organisation’s website are dangerously inaccurate. On this page, Joan Shenton, the organisation’s “Founder and administrator”, suggests that AIDS “is not an infectious disease” and that “HIV cannot cause AIDS”.
The articles linked to on this page all lean in the same direction, and many of them are by known AIDS denialists, notably the discredited virologist Peter Duesberg and the journalists Neville Hodgkinson, Celia Farber and John Lauritsen.
A Harvard study published last year concluded that the adoption of AIDS denial in South Africa by the government of Thabo Mbeki in the early part of this decade had contributed to more than 365,000 preventable deaths. In a speech in 1999, Mbeki had cited “the huge volume of literature on this matter available on the Internet” in support of his position on HIV and AIDS.
Professor Seth Kalichman’s excellent new book, Denying AIDS, is the most comprehensive account yet of the origins and development of a toxic ideology – AIDS denialism. In this e-interview, Seth discusses the book, and the urgent issues that it seeks to address.
RW: Why does AIDS denialism matter?
AIDS denialism matters because it kills people. I know this sounds like drama and hyperbole, but it is true. AIDS denialism creates confusion about the cause of AIDS. when people who need accurate information about HIV/AIDS are exposed to AIDS denialism they might actually believe that there is a debate among doctors and scientists about the cause of HIV when there is no such debate. AIDS denialists tell people that they should avoid HIV tests because they are invalid. In fact, HIV tests are extremely accurate and only rarely misdiagnose people with HIV. Being HIV infected and not knowing your HIV status means that you may not take measures to keep from spreading the virus. In many countries the majority of HIV infected people do not know they are infected. Huge resources are dedicated to getting people at risk for HIV tested. AIDS denialists undermine these efforts. Finally, AIDS denialism matters because it persuades people who have tested HIV positive to refuse HIV treatments. Denialists say that HIV treatments are toxic poison. In fact, HIV treatments are responsible for extending the lives and improving the health of people living with HIV/AIDS. In the US and UK, entire hospital wards that were once for AIDS patients are no longer needed. People with HIV are returning to work and living healthier lives because of treatments. AIDS deniers are trying to reverse this trend and return to days when there were no treatments.
RW: What was the inspiration for “Denying AIDS”?
I have been conducting HIV/AIDS prevention and treatment research in the US since 1989 and in South Africa since 2001. I have known for years that AIDS denialists exist, but like most people I thought that ignoring them would make them just go away. I also thought that very few people were AIDS denialists and that no one would listen to them. I suppose you could say I was denial about AIDS denialism. Like many others, I was very wrong about AIDS denialism. While working in South Africa I became aware of the devastating effects that AIDS denial was having in that country. The former President Thabo Mbeki had enlisted AIDS denialists among his advisors and bought into the idea that scientists are debating the cause of AIDS. Mbeki’s misguided AIDS policies resulted in over 330,000 senseless deaths and 35,000 babies who were needlessly infected with HIV. I was aware of the failure to offer treatment for South Africans living with HIV/AIDS and I knew that AIDS denial was to blame. In 2006 I also became aware of AIDS denialists in the US and UK. I received an email correspondence from someone I knew to be a well trained social psychologist in a teaching position at a respected university. She had written a very positive review of an old AIDS denialist book by Professor Peter Duesberg in California, the most notorious AIDS denialist. This psychologist had posted the book review at the RethinkingAIDS.com website. I was absolutely dumbfounded to learn that someone who I knew to be educated and who I believed to be intelligent had not only bought into AIDS denial but was actively propagating the myths. I started to look at the AIDS denialist literature and found it disturbing and also fascinating. I wanted to learn more about how seemingly intelligent people would come to believe absolute rubbish. So I decided to write Denying AIDS.
RW: What kinds of people become AIDS denialists, and what motivates them?
All kinds of people become AIDS denialists. Most visible are the fringe scientists because they write books and have websites. They are following in the footsteps of Peter Duesberg. Still, AIDS denialists who have academic positions do considerable harm because they create an impression of credibility. There are also rogue journalists who write about conspiracy theories and other sensational pseudo-news. AIDS denialist journalists do considerable harm because they bring AIDS denialism into the public eye. AIDS denialism also has its activists, typically people who have tested HIV positive and buy into denialism as a maladaptive coping strategy. These denialists also have credibility because they appear to be living healthy with HIV and not taking medications. There are even celebrities who support AIDS denialist activism, including the popular rock band the Foo Fighters and comedian Bill Maher. Tragically, AIDS denialist activists have infected their children and others and they themselves die of AIDS earlier than they may have if they accepted treatment. Then there is a large group of people who are prone to conspiracy theorizing, anti-government sentiments, and simply wanting to make mischief. These people are typically Internet bloggers with way too much time on their hands. Many seem not to realize the harm they are causing and most others just do not seem to care.
RW: Who are the key figures in the AIDS denial movement, and what are their ideas?
In my opinion, the key figures include the following people:
Peter Duesberg is the single most important figure in HIV/AIDS denialism because he is the only credentialed scientist who has worked with retroviruses, although not having worked with HIV, to propose that HIV does not cause AIDS. The rock star of AIDS denialism, he holds fast to his flawed ideas. What makes him unique is that he was once a respected scientist and now shows utter disrespect for science by refuting facts in the service of self-promotion.
David Rasnick is Peter Duesberg’s right hand man. Quite literally, in public Rasnick appears to be Duesberg’s personal assistant. At one time, he had a visiting scholar appointment with the Department of Molecular and Cell Biology at UC Berkeley (1996-2005), where he worked with Duesberg, although the university retracted his appointment. Rasnick is a conspiracy theorist, claiming that the US government propagates the ‘myth’ that HIV causes AIDS to allow the pharmaceutical industry. Rasnick served with Duesberg on the now infamous panel of AIDS experts and denialists convened by South African President Thabo Mbeki in 2000. In fact, Rasnick is credited, or blamed, with convincing Mbeki that there is a need for a scientific debate on the cause of AIDS. He also worked with Matthias Rath in conducting what are now ruled unlawful vitamin studies in South Africa.
Kary B. Mullis was a Nobel Laureate and is now among the who’s who of AIDS pseudoscientists. In 1994, Mullis co-authored the essay “What causes AIDS? It’s an open question” and he has appeared in several interviews in which he clearly questions whether HIV causes AIDS. Mullis said, “If there is evidence that HIV causes AIDS, there should be scientific documents which either singly or collectively demonstrate that fact, at least with a high probability. There is no such document.” Mullis is widely held as an eccentric who has shared his experiences, including his abduction by extraterrestrials.
Eleni Papadopulos-Eleopulos, a medical physicist based at the Royal Perth Hospital published a paper in 1988 declaring that HIV had never been correctly isolated as a distinct ‘pure’ virus. Along with Valendar Turner and John Papadimitriou, this group proclaims that HIV does not even exist! Like Duesberg, they say that drugs, poverty, and HIV medications cause AIDS. They also broaden their view by claiming other sources of immune suppression can lead to AIDS, such as repeated exposure to semen among gay men, although seemingly not women. They propose that an oxidation process occurs in response to HIV/AIDS risk factors, such as drug use, malnutrition, and exposure to semen that causes immune suppression and ultimately AIDS.
Etienne de Harven retired from the University of Toronto and having been a Professor of Cell Biology at Sloan Kettering Institute New York from 1956 to 1981. de Harven isolated and conducted electron microscopic studies of the murine (mouse) friend leukemia virus. He was also a member of the 2000 South Africa’s Presidential AIDS Advisory Panel and is a recognized leader among AIDS Rethinkers. He worked as a scientist in his field from the 1950’s until he retired. He challenged the proof that HIV has been isolated, according to the standards laid down by him. de Harven has said, “Dominated by the media, by special pressure groups and by the interests of several pharmaceutical companies, the AIDS establishment efforts to control the disease lost contact with open-minded, peer-reviewed medical science since the unproven HIV/AIDS hypothesis received 100% of the research funds while all other hypotheses were ignored.”
Christine Maggiore was the founder of Alive & Well, and was perhaps the most visible and visited HIV/AIDS denialist website. She tested HIV positive and remained untreated. Her three-year-old daughter Eliza Jane Scovill died of complications of AIDS whereas second opinions state that the death was the result of an adverse reaction to antibiotics. Maggiore founded Alive & Well in 1995 and wrote What If Everything You Thought You Knew about AIDS Was Wrong? Her story was portrayed on the popular US television show “Law & Order SVU” in October 2008. Christine Maggiore died of AIDS just a couple months later in December 2008. She is no longer with us, but her harmful legacy lives on.
Celia Farber is a journalist who has chronicled the Peter Duesberg phenomenon since the late 1980s. She has a personal relationship with Bob Guccione the founder of Penthouse Magazine and owner of Penthouse Media Group, Inc. affording Farber considerable access to the publishing world. In 1987, Farber began writing and editing a monthly investigative feature column “Words from the Front” in SPIN Magazine, owned by Guccione. She has been featured in Discover Magazine, also owned by Guccione. These articles focused on the critiques of HIV/AIDS science. In 2006 she published an article “Out of control: AIDS and the corruption of medical science” in Harper’s magazine which stirred interest as the article represented a breakthrough of HIV/AIDS denialism into mainstream media. The article is also a chapter in her book, Serious Adverse Events: An Uncensored History of AIDS, a collection of her magazine articles, mostly from the 1980s and 1990s. Farber has taken Duesberg on as a cause and in so doing has engaged in several rather nasty exchanges with AIDS scientists, most notably Robert Gallo. Along with Duesberg, Farber received a 2008 Clean Hands Award from the Semmelweis Society for her speaking out about the truth in AIDS. She has most recently filed a libel lawsuit against an HIV treatment advocacy group in New York City.
RW: Some people say that AIDS denial is a fringe ideology, that only affects a tiny group of people. What would you say to that?
I would say that it is true that AIDS denialism is a fringe ideology and that a fairly small group of people are actively involved in propagating AIDS denial. However, there is considerable evidence that that significant numbers of people are affected by AIDS denial. We know that in the US over 40% of Gay men question whether HIV is the cause of AIDS. We know that a majority of people who should be tested for HIV refuse. We know that people turn to the Internet for AIDS information and find AIDS denialism on numerous websites. We know that people are vulnerable to confusing information, especially when it is something that anyone would want to hear, such as HIV is not the cause of AIDS. There is no telling how many people have been harmed by AIDS denialism or how many listen to them. Whether it be thousands or hundreds of thousands who listen to AIDS denialists, we know from the South African experience that if just one person with power to make decisions listens the results can be devastating.
RW: In “Denying AIDS” you make comparisons between AIDS denial and other fringe ideologies – could you tell us a bit more about that?
The similarities between AIDS denialism and cancer denialism, Holocaust Denial, 9/11 Truth Seeking, and Global Warming Denial are striking. All of these groups use the same tactics to create the impression that experts disagree and that the historical record is in dispute. They all use selective information taken out of context that supports their viewpoint. They ignore facts and propel myths. They include pseudo-experts. They rely on conspiracy theories to gain attention. They are persuasive in their rhetoric. They use books to circumvent peer-review, they create their own periodicals, and they produce documentary looking films. They also effectively use the Internet and have manipulated their way into mainstream media. In some cases, they are even the same people! I believe that there is a denialism prone personality that I discuss in Denying AIDS. People who approach the world from a suspicious stance, are anti-establishment, and somewhat grandiose are among those who are prone to denialism.
RW: What is the relationship between AIDS denial and alternative medicine?
Not all AIDS denialists sell alternative treatments, but some do. However, all AIDS denialists pave the path for fraudulent cures and snake oil treatments. AIDS denialist say that HIV does not cause AIDS, leaving open the question of what should be done to treat AIDS? Among the most notorious AIDS denialists are those who sell remedies, such as Matthias Rath and Gary Null who sell vitamins and nutritional supplements they have proclaimed treat HIV/AIDS. Ben Goldacre has written about Matthias Rath’s destructive profiteering in his book Bad Science. AIDS denialists have on occasion worked closely with these vitamin entrepreneurs, as was the case when American David Rasnick and South African Anthony Brink teamed up with Matthias Rath. Of course, many people make well informed decisions and choose to complementary treatments such as nutritional supplements and vitamins as part of their HIV-related health care. Indeed, people may even make informed decisions to forego anti-HIV mediations. I believe we should respect these decisions when they are well-informed. HIV treatments are not for everyone. The problem we have with AIDS denialism is that it misinforms people and steers them away from HIV treatments. People are therefore being deceived by denialism to make misinformed decisions, and that of course is not okay.
RW: What did you come across in the course of your research that especially surprised you?
It surprised me that the AIDS denialists truly believe what they are saying. I had thought that they must be blatant liars and scam artists. Perhaps some are. But I have come to realize that most AIDS denialists really believe that HIV does not cause AIDS. They tend to be paranoid and their suspicious cognitive style bends facts to fit their preconceived notions. I will never forget when Peter Duesberg looked me dead in the eyes and said “You know, there is no vaccine for this; it is not an infectious disease.” I have no question that he believes what he says, as mad as it is.
Seth C. Kalichman is a Professor of Psychology at the University of Connecticut, and the Editor of the journal AIDS and Behavior. His new book is “Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy”; royalties are donated to buy HIV meds in Africa. http://denyingaids.blogspot.com
Yesterday I listened, in growing disbelief, to the last episode of HIV-positive AIDS denialist Christine Maggiore’s regular podcast, “How Positive Are You?”. The programme is dated December 6th, just 3 weeks before Maggiore’s sudden death from pneumonia, although comments in the podcast itself suggest it was recorded the previous month.
The discussion is co-presented by David Crowe, who early in the programme recounts with pride some of the comments he has received via email. He’s particularly pleased about one from an HIV-positive listener who reads the “Alive and Well” website every day, and who has chosen to disregard his doctor’s advice, forgoing anti-retroviral drugs in favour of eating lots of nutritious food and breathing plenty of fresh air. “Wow, that’s beautiful”, Maggiore gushes.
Later on, Crowe and Maggiore conduct a phone interview with AIDS clinician Dr. Jocelyn Dee, who had (along with several colleagues) advised the makers of the TV drama “Law and Order SVU”. In October last year, the programme featured a fictional tragedy strikingly similar to that which hit Maggiore’s family in 2005, when her young daughter died suddenly from what a coroner later determined to be AIDS-related pneumonia. Maggiore, who was HIV positive, had refused to take medications that would have reduced the risk of transmission to her unborn child, and also declined to have her tested for HIV once she was born. Maggiore disputed the coroner’s report, and insisted that her daughter had in fact died from an allergic reaction to antibiotics. All of these details were echoed in the ostensibly-fictional TV show.
During the interview, Dr. Dee is initially unaware of Maggiore’s background, and of the final shape of the programme for which she had been an adviser; she explains that she found the show too difficult to watch because the subject matter was so close to the situations she saw every day through her work with HIV-positive people. When Maggiore finally reveals the full facts, Dee seems shocked yet sympathetic.
To hear Maggiore calmly recount the details of a programme so obviously based on her own life is chilling enough. But the most painful moment comes when she ridicules the fact that, in the fictionalised version of her life, the story ends with the denialist mother dying suddenly from an AIDS-related illness. Maggiore wonders aloud whether this might have been some kind of ‘wish fulfilment’ on the part of those who despise her refusal to accept the conventional view of HIV and AIDS.
Throughout the programme Maggiore seems lucid and eloquent. She was clearly a highly intelligent person who believed passionately that she was doing the right thing – which of course made her all the more dangerous. I’m not sure I’ve ever seen a starker illustration of how far a well-structured, well-intentioned, well-expressed, and internally consistent argument can take you, even when your basic facts are nonetheless catastrophically flawed. Tragically there are some facts that no amount of nuanced, intelligent argument can refute, or psychoanalyse away.
It’s good to question conventional wisdom, except when it isn’t. Conventional wisdom holds that a bridge designed by engineers and built by reputable builders is safer to drive across than one designed by shamans and built by hairdressers. Questioning that conventional wisdom is not really all that productive, and if anyone listens to the questioning, it’s downright lethal.
So with Christine Maggiore.
Until the end, Christine Maggiore remained defiant.On national television and in a blistering book, she denounced research showing that HIV causes AIDS. She refused to take medications to treat her own virus. She gave birth to two children and breast fed them, denying any risk to their health. And when her 3-year-old child, Eliza Jane, died of what the coroner determined to be AIDS-related pneumonia, she protested the findings and sued the county.
That’s the risky kind of questioning conventional wisdom – and it risks other people as well as oneself. That’s why Prince Charles makes me angry when he indulges his passion for denouncing non-alternative medicine, and it’s why Juliet Stevenson made me angry when she used her celebrity to denounce the conventional wisdom about the MMR vaccine and autism, and it’s why Christine Maggiore makes me angry even though she’s now dead. It makes me angry that she breast-fed her children and it makes me angry that she went on television to denounce research showing that HIV causes AIDS. People shouldn’t do that. People shouldn’t take on life and death medical issues when they have no training or expertise in the subject. People shouldn’t trust their own judgment that completely.
For years, the South African government joined with Maggiore in denying that HIV is responsible for AIDS and resisting antiretroviral treatment. According to a new analysis by a group of Harvard public health researchers, 330,000 people died as a consequence of the government’s denial and 35,000 babies were born with the disease.
It’s not a subject for hobbyists or cranks or princes or actors. Children must never play with matches.