Author: AIDSTruth

By Jeanne Bergman, Ph.D.

Achieve, Spring 2010. Reprinted with permission from Achieve.

Introduction

More is known about HIV than about any other virus. Less than three decades ago, doctors were perplexed by the appearance of Kaposi’s sarcoma and Pneumocystis pneumonia (PCP) in young gay men. Since then, scientists and doctors, spurred by the activism of people with AIDS, discovered the virus now called HIV and proved that it causes AIDS by crippling the immune system until the body can no longer resist life-threatening infections.

Scientists around the world have isolated HIV, photographed it with electron microscopes, and sequenced the genomes of its different subtypes. There are now highly accurate tests for HIV antibodies and the virus itself, and increasingly effective and tolerable antiretroviral drugs (ARVs) for its treatment. Science is a gradual process, and there is still much that is not fully understood about HIV, but the evidence that HIV exists, is transmissible by blood, semen, and vaginal fluids — and that it causes AIDS — is vast and thorough.

The Denialists and Their Cult

And yet there are thousands of people who persistently reject these facts. They believe that HIV is harmless or doesn’t exist. Some argue that AIDS has other underlying causes, such as drugs, depression, “dirty” sex, stress, malnutrition, or conventional medicine. Others say that AIDS is just an artificial clustering of familiar diseases. Those who reject HIV/AIDS science call themselves “AIDS dissidents,” but others usually refer them to as “HIV denialists” because they elevate personal denial into an ideology.

Most people are astonished by the existence of HIV denialism. “I had no idea there were ‘AIDS deniers,’ and I still don’t understand why someone would believe such a thing,” a blogger wrote upon reading of the deaths of denialist Christine Maggiore and her young daughter, both from AIDS. What is most baffling is the persistence of irrational beliefs, held firmly despite the evidence, despite the terrible deaths, and despite the absence of a coherent alternative theory. How can people ignore both scientific evidence and their own failing health? How could Maggiore do nothing to prevent HIV transmission to her children? How could she allow her child and herself to die needlessly? And how could her admirers, initially frightened, go on to rebuild the wall of denial?

HIV denialism can be understood if we view the movement as a kind of cult. Denialists refer to HIV medicine and science as “the orthodoxy,” giving the field a religious framework, and imagine themselves in an oppositional, visionary role.

The persistence of the HIV denialism can be understood if we view the movement as a kind of cult. Denialists refer to HIV medicine and science as “the orthodoxy,” giving the field a religious framework, and imagine themselves in an oppositional, visionary role. Many of the features that social scientists find typical of cults characterize the denialists. Most fundamentally, they maintain an intense “us-versus-them” worldview. Those inside belong to an exalted and secretive group — they feel superior but persecuted for knowing a hidden truth. They believe that the pharmaceutical industry, governments, researchers, clinicians, the United Nations, AIDS activists, foundations, and HIV organizations are united in an elaborate global plot, which ex-traffic cop Clark Baker calls “the most significant criminal conspiracy I have ever imagined” to kill healthy people with toxic drugs for profit.

Doctrine and Indoctrination

Many HIV denialists adopt alternative health and spiritual beliefs, including consciousness-altering practices that are typical of cults. The use of hypnosis by HEAL-New York stands out. Members believe that simply being told that they are HIV-positive makes people sicken and die. HEAL’s leader, Michael Ellner, uses hypnosis to extract people from the deadly mental “AIDS Zone” and to make them feel “at peace with testing positive.”

Ellner is not alone in thinking that words kill but viruses don’t. Cult scholars call this “mystical manipulation.” Denialist Matt Irwin developed the theory in AIDS and the Voodoo Hex: “The severe, acute psychological stress of being diagnosed ‘HIV Positive’ is quickly transformed into a severe, chronic psychological stress of living with a prediction of a horrifying decline that could start at any time. This causes a suppression of the immune system, with selective depletion of CD4 T-cells. … These factors have been studied in healthy people where they create the very same immunosuppression and immune dysregulation that may later be called ‘AIDS.'”

Denialist Michael Geiger is another proponent of “dangerous” thoughts, and even accused another dissident of helping to kill Christine Maggiore by worrying about her. “Have we as yet learned nothing … of how easy it is to plant projections of sickness and death onto our own selves, as well as our friends, acquaintances or even onto our children and thereby help to create those fears into our realities?” Ironically, Celia Farber regularly “projects” in just this way: “I feared for [Maggiore’s] 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.” Farber also blames the “AIDS orthodoxy” for long-distance mental homicide: “This is voodoo, what they are doing to [South Africa’s denialist Health Minister] Manto. It is heartbreaking. I sometimes think they killed [Maggiore’s daughter] EJ with their voodoo, too. What did EJ die of? Can anybody explain it and does it look like anything anybody has ever seen?” (EJ died of PCP.)

Cults often manipulate feelings of shame and guilt to control their members. Because both AIDS and the activities associated with HIV transmission are stigmatized, the HIV-negative denialist leadership often degrades those who have HIV, even if they are dissidents themselves. Peter Duesberg has always blamed AIDS in gay men on poppers and promiscuity; he dismisses those who say they didn’t engage in either behavior as liars. Clark Baker says that AIDS was invented because “a small group of promiscuous, addicted, nitrite-huffing, gonorrheal and syphilitic bath house veterans began to get sick” and “refused to accept blame for their self-destructive behavior.” A poster on a denialist forum attributes AIDS to “premature aging” from “snorting poppers, doing meth, drinking heavily, smoking heavily, eating poorly, not sleeping, having unprotected sex and taking the various pathogens of hundreds of sexual partners into your body.”

HIV-positive denialists who get sick are blamed for lacking commitment: “Given a choice between the opposing ideas of dying from the deadly HIV product or living a long healthy life based on the dissident belief that the HIV product is nothing more than a baseless commodity being sold by junk merchants, chosing [sic] the dissident dream is the far better choice. A pseudo dissident … will use the dissident view as a survival coping device … When ordinary illness strikes and they run to RX drugs and suffer the very types of health decline that the dissident model predicts, they attack the dissident message.”

Denialists who die from AIDS are often posthumously smeared as liars and secret addicts. When Raphael Lombardo died, Peter Duesberg wrote, “In hindsight, I think his letter was almost too good to be true. I am afraid now, he described the man he wanted to be and his Italian family expected him to be, but not the one he really was.” (Duesberg meant that Lombardo lied about drug use.) Liam Scheff rolled the reputation of Mark Griffiths down a slippery slope of innuendo into the gutter: “I knew Mark; he was cogent when I worked with him — never anything but. Almost. Sometimes he was — once or twice he’d been — a bit groggy. But he told me that it was alcohol. In fact he told me that he did consume alcohol — perhaps more than he should.” Scheff said drinking, not AIDS, killed Griffiths.

Creating Pariahs

Like those leaving a cult, former denialists are treated with extraordinary hostility. Dr. Joseph Sonnabend was one of the first physicians to treat people with AIDS. He insisted on a very high threshold of evidence that HIV causes AIDS, was cautious in prescribing unproven treatments, and recognized that co-factors, such as drug use and frequent STDs, influence an individual’s risk of infection upon exposure and how fast HIV disease progresses. Denialists have often claimed Sonnabend as one of their own. When clips of him were used in the denialist film “House of Numbers” to support the denialist perspective, Sonnabend responded with a scathing blog at Poz.com, repudiating the film’s message and affirming that HIV causes AIDS and that ARVs save lives. He wrote: “It is hard to adequately convey the feelings of a physician who was able to finally help his patients in the mid-1990s, having lost hundreds to this disease before that time. By the time these drugs became available about 400 of my patients had succumbed to AIDS, a dreadful rate of mortality. The effect of these drugs was life saving to those with advanced disease whose survival had been limited before. The portrayal of these drugs as in effect only toxic is so unfair.”

Sonnabend was immediately savaged by denialists for betraying the cult. In one forum, “Ellis” wrote: “[Y]ou’re a disgusting fraud, in my opinion, having once bravely stood apart from the racket, now pointing fingers and calling names of those who still have the decency to not be bought and sold for dollars and popularity contests. Who cares if HIV causes AIDS, or ten thousand things cause AIDS? … Are you attempting to denigrate the film because of your own outlandish, humiliating lack of composure on camera? Because you sound like the old boozy floozy you really might be, not so deep down? Because you sold out to corporate pseudo-science a long time ago, do you now pour hatred onto those who still aren’t satisfied with the one-size-fits-none industrial diagnosis? Shame on you, deep, deep, deep shame. You absurd old sell-out.”

Celia Farber similarly attacked Sonnabend on the Spectator’s website, accusing him of personal and medical treachery: “I have countless hours of tapes from the ever shifting but consistently indignant Joe Sonnabend dating as far back at 1988 … through 2001, if not longer. After that, he became impossibly sycophantic to the orthodoxy. … As for me, like everybody else under Joe’s Bus, I forgave him because he seemed so abashed. I even invited him to my wedding. But he is a weak, dishonest man without any integrity, who loves the sensation of throwing everybody under the bus.” Sonnabend’s sin was to continue to evaluate the evidence, until the proof that HIV causes AIDS and that HAART is an effective treatment was conclusive.

Controlling the Flock

Peter Duesberg has always blamed AIDS in gay men on poppers and promiscuity; he dismisses those who say they didn’t engage in either behavior as liars.

Within cults, the milieu is controlled and members are isolated. For denialists, who have no ashram, this happens online and in small groups. People worried about HIV are urged not to take the antibody test, to avoid mainstream information about AIDS, and to “stay as far away from allopathic doctors as possible.”

Robert Lifton, a scholar of cults, identified the “principle of doctrine over person” as a characteristic feature. This doctrine “is invoked when cult members sense a conflict between what they are experiencing and what dogma says they should experience. The internalized message … is that one must negate that personal experience on behalf of the truth of the dogma. Contradictions become associated with guilt: doubt indicates one’s own deficiency or evil.” Many HIV-positive denialists struggle with the reality of failing immune systems, which undermines their belief that HIV is irrelevant. The long list of denialists who have died from AIDS (posted on AIDStruth.org) contrasts with the fact that not one of the HIV-negative denialist leaders has died young, let alone with multiple strange infections that happen to be AIDS-defining illnesses.

Some HIV-positive denialists defy the prohibition on HIV treatment when they develop AIDS; they start ARVs and experience a rapid return to health. But instead of abandoning denial, many struggle to frame an alternative explanation for the success of the meds. Noreen Martin insists that her AIDS is not viral: “My own experience with AIDS was due to a lifetime of negative health issues. When extremely sick, I took the medicines, ate healthy, took over 50 supplements a day, and had a good attitude. So, within a few months I was as good as new.” She stopped ARVs for three years. “During this time,” she wrote, “my fatigue slowly came back, my CD4s dipped and my viral load increased to over 3 million. Nevertheless, I never placed much stock in either of these numbers because after extensive research, I realized that neither were [sic] related to health. It was other conditions that caused the problems and the ARVs were powerful enough to keep them at bay. … Last fall, I became extremely tired again after being anemic for almost a year and fighting lymphedema for months, I took the ARVs, as I could barely get off the couch and could not function in life.” Her health again improved.

Another denialist said, “I have seen many friends get better on ARVs, but my understanding has always been that these drugs are broad spectrum in their efficacy — that they serve to kill virtually all pathogens, but also all the ‘good stuff’ in our bodies.” Another, a thoughtful woman struggling to reconcile her recurrent illness with dogma, wrote: “All I can say is that I’m doing what seems to be working at the time. If it stops working, I’ll make a new plan. And just because they call them antiretrovirals doesn’t mean that’s what they are.” The only way they can remain alive and in the dissident camp is to pretend that ARVs, so precisely designed to target the ways that HIV infects T-cells, are a supercharged all-purpose germicide.

Deprogramming

Some denialists with HIV are unable to ignore their own experience, and are pushing back against the cult rhetoric. One weary man, positive since 1996, wrote, “Frankly, I’m sick of the questions at this point. Some of us here are experiencing strangely similar symptoms. Some well known people have died just like the orthodoxy said they would. At what point are dissidents going to start asking the important questions, rather than repeat the words ‘AIDS ZONE’ over and over? I’m not in any AIDS zone, but something is happening beyond my control. I have never been closer to taking Atripla than I am today. I hate to type that … but it’s true.”

The denialist movement is also deeply split by conflicting theories of AIDS causality, different schools of quackery, and the basic question of whether the virus exists or not. Their unity is only maintained by their ritual invocation of long-disproved claims and their refusal to engage with scientific evidence. The most successful denialist propaganda avoids making direct claims and persuades only by innuendo and inference, because clear and specific statements generate hostility within the movement and can be easily disproven by evidence.

Still, it is very difficult for believers to break free of HIV denialism. Dissidents build their worldviews, their sense of themselves as heroic and embattled, their careers in journalism and alternative medicine, and their webs of social relationships around their rejection of HIV science and medicine. They have a lot to lose if they acknowledge that they are simply wrong. But as HIV treatments get better and better, and people with HIV live long and healthy lives using them, the psychological impulse to refuse to accept what was once a terrible diagnosis is diminished. Perhaps soon the only AIDS denialists will be HIV-negative people far removed from the communities most affected by the epidemic, and their cult won’t matter at all.

Jeanne Bergman is a veteran AIDS and human rights activist in New York City.

AIDStruth.org, April 2010

AIDS denialist and U.C. Berkeley Professor Peter Duesberg has recently received media coverage following the withdrawal of a paper of his by the publisher, Elsevier, and an investigation into his conduct by the University. [1] Here, we provide some background and a timeline of events in the unfolding drama.

AIDS denialism, which Peter Duesberg has promoted tirelessly for the past quarter century, has claimed many victims from the ranks of HIV-positive people who believe in its tenets: that HIV is harmless or non-existent, antiretroviral drugs (ARVs) cause AIDS, and lifestyle choices and alternative therapies can prevent AIDS-related illness and death. [2] These deaths, caused by the fusion of ignorance and lies, are regrettable and tragic. They are dwarfed in scope, however, by what happened at the end of the millennium in South Africa. There, hundreds of thousands of people died when the apparatus of state was placed in service of Duesberg’s theories on HIV and AIDS.

The South African tragedy began in 2000, when Thabo Mbeki, the president from 1999-2008, was beguiled by denialist disinformation on the Internet and invited a number of denialists, as well as AIDS scientists and clinicians, to participate in a Presidential Advisory Panel on the causes and appropriate response to the AIDS epidemic. The denialists included Duesberg and his business associate David Rasnick, who was later found guilty in South African court of helping to conduct an illegal and fatal human trial to test vitamins as a “cure” for AIDS. [3]  The panel was irretrievably split between the scientists and the denialists, who held that AIDS is caused by poverty and malnutrition, not a virus, and that ARVs are toxic. The denialist position had a veneer of legitimacy because of Duesberg’s position at Berkeley.  Government resistance to the use of antiretrovirals for mother-to-child transmission prevention and for AIDS treatment followed, persisting even when donors were prepared to provide free or discounted drugs for these purposes. [4]

While it is impossible to quantify precisely the deaths and suffering resulting from this state-sponsored AIDS denialism, several scholars have made conservative estimates of the death toll in peer-reviewed, published studies relying on rigorous statistical methods and multiple sources of data. Nicoli Nattrass, a South African social scientist, was the first, in 2007/8. [5] In 2008, a study from Max Essex’s group at Harvard University, first-authored by Pride Chigwedere, was published in the Journal of Acquired Immune Deficiency Syndromes (JAIDS). [6] The researchers had not consulted each other, but the two studies reached remarkably similar conclusions. As a result of Mbeki’s AIDS denialist policies, between 300,000 and 400,000 South Africans died early and avoidable deaths from 2000 to 2005, and many infants were needlessly infected with the virus because their mothers were denied proper and available treatment. In addition, Nathan Geffen of the Treatment Action Campaign submitted a commentary to JAIDS that discussed the damage the Mbeki administration’s policies had caused to the South African people. [7] He called for investigations into the role played by Mbeki’s various external advisors, including Duesberg. That article was peer- reviewed and published in August, 2009.

After the Chigwedere et al. JAIDS article was published in 2008, Duesberg wrote to the editor accusing Max Essex, the senior author, of having an undisclosed financial conflict of interest. In essence, Duesberg charged that Max Essex could personally benefit from promoting the use of ARVs. The complaint was forwarded to the Harvard School of Public Health, which investigated and found the complaint to be factually inaccurate and groundless.

Subsequently, Duesberg submitted a paper to JAIDS that was critical of the Chigwedere paper and that again questioned whether HIV caused AIDS and argued that ARVs were toxic. Duesberg and his co-authors also claimed that there was no statistical evidence that HIV had caused the deaths of South Africans, or even that AIDS deaths had occurred in significant numbers in South Africa. The paper was peer-reviewed and rejected. One of the reviewers warned that Duesberg could face an official investigation by his university or by the National Institutes of Health (NIH) Office of Research Integrity for two issues.  First, Duesberg failed to disclose that his co-author David Rasnick had conducted illegal clinical trials for vitamin pill manufacturer and distributor Matthias Rath, who is infamous in South Africa for attacking antiretrovirals as toxic and promoting vitamins as an alternative treatment.  The reviewer noted that the connection between Rath and Rasnick should have been declared as a potential conflict of interest. Duesberg was clearly aware of and sensitive to the issue of conflicts of interest, as he had leveled that very charge against Essex—his omission was not the result of ignorance.

The second issue was Duesberg’s selective citation of bits from the scientific literature while ignoring contradictory evidence, his distortion of the incomplete but still formidable knowledge of how HIV affects the immune system into the basis for his claim that it does not harm people, and his blatant misrepresentation of the contents and findings of a 2006 Lancet paper by May et al. [8] The May et al. article reported success rates of ARVs at various points in time.  Duesberg misreported the results, claiming that “hundreds of American and British researchers jointly published a collaborative analysis in The Lancet in 2006 concluding that treatment of AIDS patients with anti-viral drugs has ‘not translated into a decrease in mortality.’” In fact, the article never suggests that people with HIV/AIDS who take ARVs don’t live longer than those who do not.  Rather, the sentence fragment Duesberg quoted is part of a finding that, over a period of 8 years, virological response in the first 6 months after starting ARVs improved markedly, but the number of deaths from all causes within the first year of treatment did not significantly change, decreasing only a little from 2.2% to 1.3% of the participants who started HAART that year. That is, only a small number of people on ARVs died during their first year of treatment, and even that number declined, unevenly, by almost half.  This conclusion in no way can be interpreted to mean that ARV treatment has not resulted in radically reduced rates of AIDS-related mortality. The paper is very clear, and it is most unlikely that Duesberg could have honestly misinterpreted the article as saying otherwise. The JAIDS editor, Bill Blattner, rejected the Duesberg et al. paper on the basis of all the peer reviews he received and his own editorial judgment.

Next, on June 9, 2009, Duesberg resubmitted the paper, addressing none of the key criticisms raised by the JAIDS reviewers, to Medical Hypotheses, where the editor, Bruce Charlton, accepted it two days later. [9] None of the papers MedHyp publishes are peer-reviewed; it is unclear if Charlton even read the Duesberg paper, considering the near-instantaneous acceptance, and even less likely that any fact checking was performed. Charlton has described himself as “agnostic” on HIV as the cause of AIDS, and his magazine had previously published other AIDS denialist articles, in addition to papers attributing chronic fatigue syndrome to aluminum in vaccinations, [10] investigating navel lint, [11] positing high heels as a cause of schizophrenia, [12] and asserting the “very particular twinning between a Down person and Asiatic people” in appearance. [13] The published version of the Duesberg paper contained a statement noting the previous rejection by JAIDS and offering copies of the JAIDS reviews to anyone who requested them. Although several people have since requested the reviews, Duesberg has not kept his promise to release them.

Various AIDS researchers and activists, including John Moore and Francoise Barré-Sinoussi, wrote to Elsevier (the publisher of Medical Hypotheses and some 2,000 other journals) requesting an investigation into why and how the Duesberg paper could have been accepted for publication. In addition, a multi-signatory letter was sent to the United States National Library of Medicine, requesting an assessment of whether Medical Hypothesis should remain listed on PubMed, the Library of Medicine’s database of peer-reviewed and legitimate articles. After an internal enquiry, Elsevier temporarily retracted the Duesberg paper, along with a second AIDS denialist article, pending the outcome of a more thorough investigation. That investigation, conducted by other Elsevier editors, commissioned five peer reviewers.  All five reviewers recommended rejection, and the paper was permanently retracted. In addition, Elsevier elected to reform the publishing policies of the journal, converting it to a peer-reviewed format. The editor, Bruce Charlton, has refused to accept the publisher’s instructions to date and says he will serve out his contract without changing the policy; Elsevier has indicated that in that case Charlton will be removed from his position.

Around the same time, in August 2009, two people sent formal letters of complaint to Duesberg’s institution, the University of California, Berkeley, concerning the contents of the Medical Hypotheses paper. They noted the lack of disclosure of Rasnick’s potential conflict of interest and the poor quality of scholarship throughout the work. Both letters were signed. One of the writers has since publicly disclosed himself as Nathan Geffen; the other has elected to preserve the right to confidentiality.

U.C. Berkeley began an investigation into Duesberg’s conduct, led by Public Health faculty member Art Reingold, M.D., M.P.H. Duesberg chose to announce the investigation, speaking with a ScienceInsider reporter about it [14] and also probably causing the official letters of complaint to be posted on a public website, despite their being marked as confidential. The investigation is ongoing, press coverage is increasing, and more and more of the facts are becoming known.

Scientists have long known that Duesberg has not done original work with HIV, that his denialist claims have either been falsified or are not supported by evidence, and that his scholarly practices are often slipshod and perhaps even deceitful. Descriptions of Duesberg in the popular press have concentrated on the colorful or offensive aspects of his personality, and many who find his AIDS denialism offensive have nonetheless supported his academic freedom.  But academic freedom is not license to breach the well-established rules of scholarship.  Conflicts of interest must be declared, and deliberate misrepresentation is not acceptable conduct. Duesberg may have finally exhausted the patience of the scientific community and the University of California.

References

1. See, for example, Zoe Corbyn, “Berkeley Scholar in Dock over HIV-Aids Article,” Times Higher Education, April 24, 2010.

2. See “Denialists Who Have Died of AIDS” at http://www.aidstruth.org/denialism/dead_denialists

3. See Nicoli Nattrass’s 2007 Mortal Combat: HIV Denialism and the Struggle for Antiretrovirals in South Africa (Pietermartizburg: University of Kwazulu Press) and Nathan Geffen’s 2010 Debunking Delusions (Johannesburg: Jacana) for a discussion of Mbeki and the P residential AIDS Advisory Panel. See also the Durban Declaration that affirmed in response to the South African fiasco that HIV is the cause of AIDS, and was signed by over 5,000 people at the MD or PhD level or the equivalent: http://www.nature.com/nature/journal/v406/n6791/abs/406015a0.html.

4. Presidential spokesman Parks Mankahlana made it chillingly clear that preventing mother-to-child transmission would result in large number of AIDS orphans burdening the state when the mothers of HIV-negative children died: “Who’s going to bring the child up? It’s the state, the state. That’s resources, you see.” Geffen, op cit, p. 54.

5. Nattrass, Nicoli. 2007. Mortal Combat: AIDS Denialism and the Struggle for Antiretrovirals in South Africa, Pietermaritzburg: University of KwaZulu-Natal Press.  See also Nattrass, Nicoli. 2008. “AIDS and the Scientific Governance of Medicine in Post-Apartheid South Africa.” African Affairs 107(427):157-176.

6. Chigwidere, P, Seage, G 3rd, Gruskin, S, Lee, T, Essex, M. 2008. “Estimating the Lost Benefits of Antiretroviral Drug Use in South Africa’, in Journal of Acquired Immune Deficiency Syndrome, 49: 410-415.  See also Chigwedere P, and Essex, M. 2010. “AIDS Denialism and Public Health Practice.” AIDS and Behavior 14(2):237-47.

7. Geffen, Nathan. 2009. “Justice After AIDS Denialism: Should There Be Prosecutions and Compensation?” JAIDS 51(4):454-455.

8. May MT, Sterne JA, Costagliola D, Sabin CA, Phillips AN, Justice AC, Dabis F, Gill J, Lundgren J, Hogg RS, de Wolf F, Fätkenheuer G, Staszewski S, d’Arminio Monforte A, Egger M. 2006. “Antiretroviral Therapy (ART) Cohort Collaboration. “HIV treatment response and prognosis in Europe and North America in the first decade of highly active antiretroviral therapy: a collaborative analysis.” Lancet 368(9534):451-8.

9. Duesberg PH, Nicholson, JM, Rasnick, D, Fiala, C, Bauer, H. 2009. “HIV-AIDS Hypothesis out of touch with South African AIDS – A new perspective.” Med Hypotheses (withdrawn).  On what it means to have a paper withdrawn from Medical Hypotheses, see Orac’s Respectful Insolence blog post of September 15, 2009: “Pity poor Peter Duesberg: Even Medical Hypotheses has dissed him.” http://scienceblogs.com/insolence/2009/09/pity_poor_peter_duesberg_even_….

10. Exley, C., L. Swarbrick, R. Gherardi, Authier, F-J.  2008. “A Role for the Body Burden of Aluminum in Vaccine-Associated Macrophagic Myofasciitis and Chronic Fatigue Syndrome. Medical Hypotheses 72(2):135-139.

11. Steinhauser, G. 2009. “The nature of navel fluff.” Medical Hypotheses  72(6):623-625.

12. Flensmark, J. 2004. “Is there an association between the use of heeled footwear and schizophrenia?” Medical Hypotheses 63(1), 740-747.

13. Mafrica, F, and Fodale, V.  2007. “Down Subjects and Oriental Population Share Several Specific Attitudes and Characteristics” Medical Hypotheses 69(2): 438-440.

14. Miller, Greg. “AIDS Scientist Investigated for Misconduct After Complaint.” ScienceInsider April 16, 2010: http://news.sciencemag.org/scienceinsider/2010/04/exclusive-aids-scienti…

 

by Lesley Odendal

First published by health-e. This article is republished by AIDSTruth because it deals with political support for AIDS denialism.

OPINION:Nathan Geffen’s book Debunking Delusions reminds us what can go wrong when AIDS denialists are given the time of day. The book also documents clearly how we can fight denialism in a manner that saves lives and respects science. What is clear given the resurgence of AIDS denialist propaganda is that now is not the time to sit back.

As Geffen argues in his book, underlying the Treatment Action Campaign’s success in fighting denialism and quackery was the almost unsung treatment education programme. Knowledge truly is power in this case.

AIDS denialism reached its peak in the public arena in the late nineties and early 2000s when Thabo Mbeki consulted a number of AIDS denialistson his AIDS panel to advise him on AIDS policy. The public believed that the debate was over when Mbeki ‘withdrew’ from the debate, claiming that he never stated that HIV did not cause AIDS and when in 2003 antiretroviral (ARVs) began to be rolled out at a national scale to HIV-infected people. The struggle between the many players, including Mbeki, then Minister of Health Manto Tshablala-Msimang, the Treatment Action Campaign, clinicians, the international scientific community and the many denialists benefiting from, and supporting, Mbeki’s policies such as Duesberg, Anthony Brink, the Visser family and the numerous quacks in tow, received much media attention and mass mobilization.

In 2010, one may ask, what is the significance of AIDS denialism today? For most lay people, the debate is settled and the evidence is clear: HIV causes AIDS; ARVs are the best and only treatment for HIV; Mbeki’s AIDS policies caused thousands of unnecessary deaths and HIV-infections and thousands of peer-reviewed articles have been written regarding the effects of HIV on the body.

Unfortunately, the denialists are not ready to give up. Despite the numerous rebuttals against their claims and the plethora of evidence that exists against them, there has been a recent surge in denialist material that has been circulating both in the mass media in the form of the documentary House of Numbers and the infamous AIDS denialist Peter Deusberg’s (who was also on Mbeki’s panel) article in the non-peer reviewed journal Medical Hypothesis. Medical Hypothesis as not being peer reviewed and scandals around that

AIDS denialists usually support at least one of the following hypothesis:

1. HIV does not exist
2. HIV tests do not in detect the presence of HIV
3. Following from this, HIV prevalence is highly overestimated
4. HIV does exist but it is not harmless
5. HIV is not sexually transmitted
6. AIDS is caused by other factors such as poverty, malnutrition or ARVs themselves
7. ARVs are toxic and often fatal and cannot prevent the vertical transmission of HIV
8. AIDS should be treated by an extensive range of alternative remedies such as herbal concoctions, vegetables, vitamins or bizarre treatments such as ozone rectal therapy

Pride Chigwedere of the Harvard School of Public Health eloquently and passionately refutes many of these claims and the amount of words spent on deconstructing the claims of denialists is unprecedented in academia. However, what is evident and a hallmark of AIDS denialist argument is that despite any proven evidence that is thrown against them, AIDS denialists do not take this into account for developing their arguments and instead sway the debate in another direction. For them, the evidence is incorrect and they are misunderstood as the last renegades of the truth. This makes it very difficult to engage in anti-denialist debates— academics, scientists, activists and clinicians grow tired of arguing with those who do not take reason into account and who do not respect the essential tenant of science— proven evidence—and prefer to focus on their core work which is to create and disseminate more evidence to the benefit of our understanding of HIV. As Nattrass states, “the problem [of not accepting evidence] is far more than intellectual because disregarding evidence not only undermines scientific progress, but it threatens the social basis which makes such progress possible.”

More worrying, is that where the evidence suits them, AIDS denialists misrepresent data or use the incorrect data to support their arguments. In Duesberg’s article for instance, he uses the incorrect epidemiological data that misclassifies causes of death in South Africa to support his thesis that AIDS is not killing as many people as it is widely estimated by scientists across the world. Duesberg uses the Statistics South Africa Findings from Death Notification to argue that AIDS-related deaths are much lower than that postulated by Chigwedere’s 2008 article. However, it is a common fact, that due to AIDS stigma, AIDS is rarely stated as the reason for death. Up to 60% of HIV deaths are misclassified.

Duesberg also refutes the  claim that ARVs are effective at preventing vertical transmission of HIV. He does not quote the numerous randomised control trials that prove that ARVs do decrease the vertical transmission down to between 3 and 5 % when properly administered, but instead examines the history of the production of AZT, one of he drugs used in this prevention strategy.

In the newly aired House of Numbers documentary, denialist views are supported by interviewing respected scientists and distorting their views in a clever concert of manipulation. The public is further shown as erratic sheep who merely carry mainstream HIV because that’s what ‘they’, the scientists said. The definition of HIV and AIDS is painted as unclear with the claim that there is confusion as to what the more than thirty-year old disease, AIDS is. The effectiveness of HIV rapid-tests are questioned in a most irresponsible manner. HIV counsellors in South Africa explain at length what the limitations of rapid testing are and why it is necessary to conduct follow-up testing. At no point is the practical or economic convenience of rapid testing explained, nor is there mention of the gold standard test PCR HIV test which instead of searching for HIV antibodies, identifies HIV DNA* in the person’s blood.

The causes of AIDS are debated at length as if the evidence has not been around for decades— HIV as being caused by ‘lifestyle’ drugs and choices such as Poppers, being homosexual, or by co-factors such as poverty and malnutrition. People living with HIV are depicted as highly-emotional sufferers who do not have an option to take life-saving medication and at no point are any people who are managing their lives well on ARVs interviewed. Instead, a baby who was clearly suffering from a very common ARV side effect, plural neuropathy, is depicted as being cured of the ailment once she is off the drug. Other patients are described as having died of hepatoxicity from Nevirapine. At no point is it explained that these side effects are well known and well documented and that every countries ARV guidelines takes these into account in the prescription of ARVs.

Just as Duesberg does, House of Numbers is another example of selective use of evidence. The consequences of this kind of conspiracy theory manipulation of evidence can be far reaching as can be witnessed in South Africa’s tragic AIDS policy of the past. House of Numbers is currently being screened at film festivals around the world. Like all other AIDS denialism, there are dire consequences to this kind of portrayal of evidence.

AIDS denialism allows for deadly consequences. Firstly, it allows people living with HIV an escape— a far too easy route into personal denial that facilitates a process of withholding treatment from oneself and taking the necessary steps to ensure a healthy future. Stemming from this, AIDS denialism allows for quackery in all forms to persist. This allows for unfounded treatments to be sold to people at high costs to cure them of their HIV, as has been tragically witnessed in so many individuals across the world. This is what resulted in the deaths of an immeasurable amount of people across the world, as ARVs are distrusted, as is the institution of scientific evidence. More than quackery, there is a current wave of religious leaders who are encouraging people to stop taking their ARVs as only their faith can heal them.

AIDS denialism, when lent a powerful policy ear, as was the case with the Mbeki administration, allows for the systematic erosion of the scientific governance of medicine. This has far reaching consequences— for example the Medical Control Council (MCC) is practically defunct due to Mbeki’s consistent disregard for scientific evidence. It can result in delaying life-saving treatment to entire nations.

Most importantly, denialism results in death. Unnecessary, painful death. It can be genocide. And it is for that reason that the activists and scientists should not stop fighting AIDS denialism. This should not only be on blogs and in academic journals—most importantly, it should be in the public. HIV Treatment Literacy (TL) is our most powerful tool in this. It is about making science accessible to the masses— even those who do not have any form of education. There are numerous groups who have shown the success of this approach. At any time one can walk into any clinic in Khayelitsha and hear TAC activists, many with no formal education, educating patients about their disease and its treatment. This is the power of TL and anti-denialists strongest weapon in essence given the fact that the denialists themselves are failing to listen.

At the book launch of Debunking Denialism, Andile Madondile, a TAC TL educator, who had indulged in quack remedies for his HIV when his CD 4 was only 9, spoke honestly of the effect that treatment literacy had on him “The comrades at TAC saved my life. They made me realise that ARVs were the only way that I was going to overcome this disease. It is the reason I am alive and well today.”

The denialists appear to be making a comeback. The sad and worrying truth is that they were never gone. The issue at stake here is that due to their easy access to money, resources, publicity, journals which are not peer reviewed and internet, their message will continue to be heard by the masses, who do not necessarily have an understanding of how science works or the myriad of AIDS data. It is this which needs to be stopped in its tracks. Even if governments are clear on the causes and treatment of HIV, at an individual level there is a different story, and this is where our efforts should be targeted. Nathan Geffen’s book Debunking Delusions comes at a time when we need to fight for truth again.

Lesley Odendal is currently completing her Masters in Public Health. She worked at the Treatment Action Campaign in 2008 and 2009.

* While some PCR tests are used to detect proviral DNA in blood cells, the author probably intended to refer to the more commonly-used RT-PCR tests that detect viral RNA in plasma.

This documentary was produced by the non-profit health news agency Health-e and was recently broadcast on an independent television channel in South Africa. View Part I:

(If you do not see the video above, your browser does not support HTML5 video playback. Download the video or visit this page in Firefox or Chrome.) Download Part I in ogg/theora or in mp4. Part II after the jump.

View Part II

Download Part II in ogg/theora or in mp4.

 

Fact: A small percentage of people infected with HIV do live for many years without developing AIDS. They are often known as long-term non-progressors. But such individuals are rare: without proper medical care, including antiretroviral drugs when needed, most HIV-positive people will eventually develop AIDS.

As putative evidence that HIV is harmless, some HIV/AIDS denialists point to examples of HIV-infected people who survive for many years, even decades, without receiving antiretroviral treatment. HIV denialists often claim that these people survived because they avoided antiretroviral therapy, and that diet, exercise, nutritional supplements or herbal therapies, stress reduction, hypnosis, and other interventions prevent progression to AIDS. These claims are untrue and dangerous.

<

p style=”margin-top: 0px; margin-right: 0px; margin-bottom: 10px; margin-left: 0px; font-size: 1.1em; line-height: 1.6em; padding: 0px;”>Read the full bebunking.

by George N. Pavlakis, Rockville, MD USA

What do you do about someone who claims to be an expert, serving up half-truths, twisting the facts in credible-sounding sentences and misleading a patient? There must be some rules that apply to someone who professes to be an expert and induces patients to stop their doctor-prescribed medication. These must be applied to prevent harm to more patients. And what if these actions lead to the patient’s death?

Such is the case of Lambros Papantoniou, a journalist living in Washington, a diplomatic correspondent for several Greek media institutions for more than 30 years and a man loved by all who met him. Even in the higher political echelons of Washington, he was affectionately known as “Mr Lambros”.

During a hospital stay approximately ten years ago, Lambros was diagnosed with AIDS and given anti-retroviral therapy. Following this, his interest in the AIDS problem skyrocketed, and he sought information on it. Although he was a diplomatic correspondent, he reported on AIDS issues several times.

Unfortunately, Lambros attracted the attention of Andrew Maniotis, a scientist and self-proclaimed expert on many fields, and AIDS denialist. Dr. Maniotis is not a medical doctor, nor a pathologist, as he occasionally describes himself. He is not a tenured professor, nor a tenure-track candidate for a higher academic career. At times he denies he is an “AIDS denialist,” but this term accurately describes public opinions. He does not shy away from controversy and publicizes naïve opinions that contradict the established knowledge and medical science, trying to nullify the medical gains of generations of researchers and doctors.

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.

During 2007, increasingly influenced by Maniotis, Lambros became more aggressive in interrogating scientists and government officials about AIDS. In his attempts to discredit Dr. Robert Gallo, Maniotis urged Lambros to seek an interview with Gallo, hoping to confront him with an AIDS denialist agenda and publish articles containing slander and misinformation.

Dr. Gallo took the bait and spoke with Lambros openly and frankly. To his credit, Lambros published a series of articles in which he reported on the issue ethically and to the best of his ability. Undaunted by this failure, Maniotis intensified his efforts to convince Lambros of his outlandish ideas on AIDS. Lambros was finally convinced and published an extensive interview, in which Maniotis disputes all scientific facts about HIV and AIDS, advising HIV positive people, like Lambros himself, to stop taking their doctor-prescribed medication and to rely on vitamins and other unproven methods.

Unfortunately, Lambros’ non-scientific background and his personal vulnerability as an HIV positive person got the best of him, and he became more and more a spokesperson of the AIDS denialists, putting his complete trust in Maniotis.

This trust eventually cost him his life. He simply stopped taking his medication. Already hospitalized once, Lambros’s health depended on blocking HIV through anti-retroviral drugs. Without this protection, the virus continues to damage the immune system, until the patient becomes vulnerable to a multitude of common infectious agents, which would ordinarily be blocked by a functioning immune system. With the medication, he likely would have lived a longer and healthier life.

Having finally succumbed to Maniotis’ ‘freindship’, at several White House and State Department briefings in Washington, Lambros asked hostile nonsensical questions repeating the statements of Maniotis verbatim. He asked whether anyone had actually seen the virus. He accused the medical profession of poisoning the “so-called AIDS” patients with drugs.

In retrospect, Lambros’ increasingly erratic behavior can be partially explained by his deteriorating health. 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.

In the meantime, Maniotis, having the trust of Lambros’s family, was calling both hospitals and arguing about prescribed treatments, accusing medical personnel of trying to kill Lambros, all while denying the existence of AIDS. The doctors found the situation highly distracting and asked that Maniotis does not contact them. The Greek Embassy had to intervene and tell Maniotis to back off.

During this last period of his life, Lambros was clearly very sick and confused, making several statements reflecting this confusion. To their shame, AIDS denialists are promoting these statements on the Internet in order to build up their own agenda, disrespecting the memory of a sick and confused man, and, of course, not acknowledging their part in his death.

“Nobody really knows why he’s gone,” claims Maniotis. But in the end, Lambros knew, and so do we. He died of encephalitis following the collapse of his immune system, an outcome of HIV infection. We know from millions of other cases that, had he taken his anti-retroviral medicine and prevented further damage by HIV, he could have had many more productive years.

Some of us who knew him also feel a bit guilty at times about not being able to protect him more from predators like Maniotis.

Consequently, we feel that along with celebrating his contributions, his achievements, his life of giving, of helping many people in his community, we also need to tell his true story. Lambros was a defender of our democratic ideals, a stalwart defender of the truth, a man who gave freely of himself, his time and the limited money he had, helping countless people in his neighborhood in Washington, in cities throughout the U.S. and in Greece. He is missed even by those he criticized.

We must honor him by not allowing his death to be used to hurt others. We must not be silent, as silence did not become Lambros himself.

As a generation of AIDS activists realized some time ago, Silence = Death.