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Denying AIDS

Conspiracy Theories, Pseudoscience and Human Tragedy

2009

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An excerpt from Denying AIDS, published by Copernicus Books, an imprint of Springer Science & Business Media (2009).

To purchase this book, click here.

Denying AIDS


Preface

My strange journey into HIV/AIDS denialism started with a seemingly random event. As the editor of the behavioral science research journal AIDS and Behavior I sent an email to everyone who had ever been asked to provide peer reviews for papers submitted to the journal requesting that they update their contact information. Psychologist Kelly Brennan-Jones at the State University of New York in Brockport replied to my email and said that she had no idea who I was, why I sent her the request, and asked me to remove her from the journal database. How she got my email was simply that I had asked her to review a paper some time back to which she had declined. As an expert in the study of relationships, I knew her work dating back to my years in graduate school. I knew Kelly Brennan-Jones was trained at a superlative university by some of the best social psychologists in the country. When I reminded her of the request to review for the journal and asked if she would consider reviewing in the future, she promptly directed me to an internet link telling me to read the information there if I was interested in knowing what she thought of AIDS. The link was to the David Crowe's Alberta Reappraising AIDS Society website which posted her August 2007 article "The HIV/AIDS Myth: A Review of [Peter] Duesberg's Inventing the AIDS Virus". My reaction was one of absolute outrage. I mean I was really angry. I was in an emotional upheaval. I surprised everyone around me, including myself, by my seemingly irrational reaction. How could someone I knew to be intelligent, well-trained as a scientist at a respectable university and in a position of influence over college students endorse a book that everyone surely knows is outdated, biased, and of little more value than that worthy of a doorstop?

Having dedicated my entire adult life to preventing the suffering caused by HIV/AIDS, I realize that HIV disease is very complex. People who test HIV positive as well as those who care for them will gladly grasp at the idea that HIV does not cause AIDS. Who wouldn't? Peter Duesberg, and all the denialists who have followed him, offers that very false hope. Repackaged by what has become a movement of denialism and propped up by a pseudoscientific enterprise, the idea that HIV does not cause AIDS has floated around for nearly 20 years. It just does not go away. In fact, the movement grows stronger in every country that is suffering a significant AIDS problem. For some, like many of us in the United States, it is easy to ignore HIV/AIDS denialism because its followers are invisible to us. For others, like my friends in South Africa, it is impossible to ignore. People living with HIV/AIDS in every country are vulnerable to the confusion and disinformation propagated by a small group of denialists whether by their books, brochures, or Internet postings. Reading that HIV does not cause AIDS can dissuade people from getting tested for HIV, lead HIV infected people to ignore their HIV positive test result, and persuade some to reject antiretroviral therapies in place of vitamins and nutritional supplements. These are not hypothetical situations. Real people are facing a life threatening disease that can be effectively treated. Realizing that all AIDS scientists should take action to counter the claims of HIV/AIDS denialism, I decided to write this book.

To understand HIV/AIDS denialism, I had to start from scratch. Like nearly every AIDS scientist, I have ignored denialism. I suppose you could say I was in denial about denialism. I knew it was out there, but I pushed it to the back of my mind. To begin my journey into the world of HIV/AIDS denialism I dived into books, magazines, and most of all, the Internet to learn all angles. Still, it seemed insufficient. Getting to know the denialists not just their papers seemed essential. So I started corresponding, conversing, and visiting the insiders of HIV/AIDS denialism. I posed questions and gained insight into the inner workings of denialism. Most of those I contacted responded to me. Not really knowing who I am, they took me under their wing to enlighten me about the truth about AIDS. I have been left with no doubt that the AIDS Rethinkers really truly believe that HIV does not cause AIDS. In their minds, the propagation of the HIV=AIDS myth is the product of a government conspiracy in cahoots with a multibillion dollar pharmaceutical scam. They actually believe that antiretroviral medications are toxic poison. In their minds, they have not been duped like everyone else into thinking that HIV causes AIDS and one day the AIDS orthodoxy will crumble on its own lies. I looked one denialist in her eyes and asked her if she really believes these things about AIDS and she said without any hesitation "yes I do". It is through these cordial and inquisitive exchanges that I learned most about this problem.

My relationships with denialists created some complicated arrangements that allowed me to experience denialism face-to-face. I often felt more like a journalist than a scientist, giving me a glimpse of how it must feel when denialist journalists delve into science. Still, it is important that I say that the denialists who interacted with me did not seem evil. They are deeply skeptical of science and untrusting of government and big business. Some are surely misguided and others seem to foolishly believe that they understand everything there was to know about AIDS. But I did not find them evil in the sense they were intent on harming people, even though their actions surely are. Of course, those I have come to see as malevolent -- the vitamin pushers, con men, and angry academics are the ones who did not respond to may attempts to contact them.

I gained as much of an inside view of HIV/AIDS denialism as I could. Obviously, at times I have felt quite sympathetic to some of the denialists. I am not sure if these feelings reflected something of a Stockholm syndrome, where I was identifying with those who seemed to become my psychological captures. In retrospect, I think I was just struggling to understand them as best I could, an understanding I have tried to convey in this book.

Writing this book posed some rather unique challenges. I have tried to remain objective and balanced in my examination of what the denialists are saying and who they are. Difficult as it may be, I have tried to take these guys seriously; even if not what they are saying then why they are saying it. I have also tried to avoid ad homonym attacks by focusing more on what the denialists are saying than who they are. But that too was difficult. This book is a psychological perspective on denialism, so the denialists themselves are central to the story. In this case, the messengers may be as important as the messages. I also struggled with what to consider science vs. pseudoscience. Including someone and their work under the rubric of pseudoscience was never taken lightly. As a guide, I used standard definitions of pseudoscience and I spoke with colleagues and collaborators of those in question. I know that no one included in the discussion of pseudoscience, and denialist journalism for that matter, will appreciate these labels. Nevertheless, I believe that the categorization is valid and meaningful. In a related matter, I spend considerable time discussing peer review, for all its value and deficiencies. When considering work as scientific and pseudoscientific, I considered whether articles had been peer reviewed. For this, I also relied on co-authors as well as the authors themselves to tell me if their work had been peer reviewed. Although some of the articles I discuss as pseudoscience did appear in peer reviewed journals, it is my understanding that the specific articles did not undergo peer review.

Another element of this book that I particularly grappled with was managing its citations and sources. I found myself wanting to cite numerous studies that support the facts that HIV causes AIDS and that antiretrovirals extend lives and prevent babies from becoming infected to debunk denialist claims. In doing so, I would have lost my footing and the very point of this book. This is not a book about AIDS and how it is caused by HIV. Rather, this is a book about HIV/AIDS denialism. I did not write this book to answer the denialist claims, but rather to offer insight into their wacky and destructive world. I have maintained an electronic library of all my sources that I used to write this book should any of the websites be terminated. Given the nature of the topic, a lot of my sources are from Internet websites. Knowing that websites come and go, especially those on the fringe, I printed all of my sources as portable documents. I am happy to share these sources. In the chapter notes, I do not always indicate dates of websites accessed because I verified downloaded websites on a single day, February 13, 2008, unless otherwise noted. To request my sources and to learn more about my experiences infiltrating the world of AIDS denialism visit the Denying AIDS blog at http://denyingaids.blogspot.com/

Personally, I have come to view this book as just one straw on the back of HIV/AIDS denialism. A back that will not break until the public is educated to differentiate science from pseudoscience, facts from fraud. Denialism is defeated when credible science is effectively communicated to a trusting and critically minded public. My goal has been to offer a psychological perspective on what is essentially a psychological and social phenomenon. I do not view myself as an anti-denialist waging war against denialism. To the contrary, I am trying to understand what the denialists are saying and why anyone would believe them. As my South African friend Nicoli Nattrass suggested, in writing this book I am offering a psychological autopsy of HIV/AIDS denialism. Although I find the problem of HIV/AIDS denialism fascinating, it is not my aspiration to immerse myself in the world of denialism any longer. I will now return to the less glamorous and mundane world of AIDS prevention and treatment research, where there are far fewer dramas and conspiracies to contend with.

Odd as it is, I find myself drawing this project to a close sitting and writing these words on the steps of Peter Duesberg's laboratory at the Donner Building in the shade of the beautiful trees on the lovely UC Berkeley campus. I suppose stranger things have happened, just not to me.

Seth Kalichman
Storrs, CT

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This article was provided by Copernicus Books.
 
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Reader Comments:

Comment by: okorie (cairo egypt) Sun., May. 23, 2010 at 2:01 am EDT
yeah,i quite agree with u that it is either that HIV doesn't or it doesn't cause aids,because i have seen a lot of people who tested positive living a healthy life for so many years without the anti virus drugs.
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Comment by: George M. Carter (Brooklyn, NY) Fri., Jul. 3, 2009 at 9:17 am EDT
I have been fighting denialist nonsense since the early 90s. I had joined ACT UP/New York in 1989 and wound up with the Pathogenesis Working Group of the Treatment & Data Committee. This effort was designed to help elucidate HOW HIV causes AIDS. That has led me to a deeper understanding of therapeutic implications, including nutrition, ARV, some botanicals, exercise, stress reduction, etc. The body is an ecology.

So I was delighted to see this book, though sad that so many die buying the denialist nonsense. The one caveat in reading this chapter I would make is referencing "quackwatch." I find their brand of "denialism" of any and all CAM therapy to be as pernicious and revolting as the denialists of HIV.

Managing ARV side effects indeed is one arena where some CAM therapies have proven helpful. Slowing disease progression with a multi suggests this should be standard of care, albeit clearly a MVM is not a substitute for ARV!!

Sadly, we live in a world riven with cheap polemics--and the consequences can be deadly. So I reject quackwatch as profoundly as HIV denialists.
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Comment by: Arthur Gittleman (Bella Vista, AR) Thu., Jul. 2, 2009 at 7:59 am EDT
Didn't read the book. It assumes that conventional medicine is not in denial. It would surprise many people to find this is not so. I do clinical research on FIV and veterinarians are in denial. They don't treat this disease. And they are in denial when it comes to treating it. Not that HIV drugs don't exist or that herbs that are anti-FIV don't exist. Simply that they never learned to use them. They don't teach herbs in medical school, so they are at a loss on how to use them. And HIV drugs are expensive which limits there use on a cat and on poor people. What they claim is treat the secondary infection with antibiotics which they learned to use from medical school and from sales representatives from drug companies. Unless a sales rep is pushing something they learn to use what they did in school. And since medical school never learned much about FIV the students become denialist in not treating a disease similar to HIV. So here we have conventional doctors in denial and not just HIV denialists. When one sees this it is an eye opener to the problem of denial. A self-defense mechanism to cover different things. It seems that people lie to themselves to cover different problems. So a book on HIV denialist is much too limited in its outlook and does not take in people in the medical field that are in denial that have gone via conventional training. Yes! Your doctor is also in denial.
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Comment by: Stan M (Portland, OR) Thu., Jul. 2, 2009 at 12:48 am EDT
In 2002 I stopped taking all my HIV medications because of the information I was reading on the internet about how HIV doesn't cause aids, etc, it was all very convincing. I was infected with HIV in 1987 and had always been on some kind of mono therapy. Since I had survived for so long, "probably as a result of taking medication" I was easily convince that HIV couldn't cause aids or I should have been dead. I also stopped going to my doctor as all the blood test were also suppose to be meaningless. It took 18 months before I came down with PCP and a T-cell count of 20. I have been back on antiviral medication for 3 years and now have a T-cell count of 385 and non-detectable viral load. I am now a 20-year survivor thanks to going back on medication. All I know is, if HIV doesn't cause aids, the medication sure does work! I want to thank the entire main stream scientist, researchers, HIV doctors and even the Drug Company’s you all saved my life! And to the denialist out there, you are doing nothing but contributing to illness, death and destruction. You might even cause your own demise some day. You might want to stop and think twice, as to if you are really qualified to advise other people as what to do concerning their health.
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Comment by: David (San Francisco, CA) Wed., Jul. 1, 2009 at 10:23 pm EDT
AIDS denialism is dangerous and its propagation is tantamount to murder. Just like holocaust denial is criminalized is some countries, the dissemination of HIV denialist claims which completely dispute proven science should be illegal.

If individuals want to believe this stuff and base their own medical decisions on such malarky, that's their right. But working to convince others to believe lies that will probably kill them is indeed EVIL, even if the perpetrators don't realize it.
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