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This Month in HIV: A Podcast of Critical News in HIV
  

This Month in HIV: The Truth About HIV/AIDS Denialism

An Interview With Clinical Psychologist Seth Kalichman, Ph.D.

June 2009

This podcast is a part of the series This Month in HIV. To subscribe to this series, click here.

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"The Tuskegee syphilis study is one of the great blemishes, one of the great shames, in our nation's public health history. One of the ramifications has been an element of well-deserved mistrust of the U.S. Public Health Service in African-American communities."

Let's talk about racism then, because one of the most at-risk communities for denialism is the African-American community. There are many African Americans who remain suspicious of the government, and are suspicious of "establishment" beliefs. There is a small population of infected African Americans who are not taking treatment because they feel it might be unsafe for them. They might read Gary Null, or some other person who knows nothing about HIV, and decide not to take meds.

You're right that African Americans, and to a lesser degree I think Hispanic Americans, are susceptible to denialism due to the racism they have faced. African Americans have a long history in this country of abuse. We could always point to the very infamous Tuskegee syphilis study where the U.S. Public Health Service in the '30s enrolled 600 African American men, 399 of whom they knew had syphilis. There was no treatment at the time and they wanted to do what's called a "natural history study" to observe these men who had syphilis in order to document what happens.23

That was all fine; however, they were followed for 40 years and during that time, treatment for syphilis did become available but it was withheld from them.

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The Tuskegee syphilis study is one of the great blemishes, one of the great shames, in our nation's public health history. One of the ramifications has been an element of well-deserved mistrust of the U.S. Public Health Service in African-American communities, and there are other examples as well.

These are the things in history that can fuel conspiracy thinking. It's like a kernel of truth that gets blown into things that just aren't relevant anymore. There is a history there, and so there is a susceptibility to mistrust of the medical establishment and, when that exists, it opens the door to the flakes, the flukes, the pseudoscientists and the quacks.

We see elements of racism in what the denialists are saying, some of which is more blatant than others. I'll return again now to the professor [emeritus] at Virginia Tech University who has a history of homophobia. He also says that essentially why people test HIV positive has nothing to do with a virus. It has to do with their immune systems. The test is picking up on immunities. Because they come from Africa where there are a lot of infectious diseases, African Americans have different immune systems and more different immunities that throw the test off. And, he says, that's what explains all these African Americans that are testing HIV positive. Then, he says, they're given the antiretroviral drugs and that's what causes AIDS.

What kind of professor is this guy?

He is right now one of the most visible and vocal AIDS denialists on the Internet. He wrote a book that he says indisputably proves that HIV cannot cause AIDS.22 In this book, he goes through very convoluted, tortuous gymnastics around HIV/AIDS epidemiology, the science of the disease. It's pretty crazy making. He is actually a professor emeritus of science at Virginia Tech University.

His name is Henry Bauer. He's not a biologist. He's never done any research himself. You don't have to look too carefully to see that he's also one of the world's authorities on the Loch Ness Monster. I'm not kidding. He was the editor of a journal that's called the Journal of Scientific Exploration. He was the president of a Society of Scientific Exploration, which is the main body of researchers who study UFOs, alien abductions, psychic auras, magnetic healing, etcetera. It's a pseudoscience group. So there's no question that Henry Bauer is a pseudoscientist.

His attraction to AIDS and his now being entrenched in AIDS are what have become destructive. No one ever would have heard of Henry Bauer before. And that is why he's doing what he's doing. Suddenly he's getting a lot of attention. He's found a niche for himself. He's actually pretty destructive because he's got a significant online presence.

The Internet is what has changed denialism in the past 20 years. If Duesberg had written his books before the Internet had become so popular, people might only have bought a few copies. But now, if you go to Amazon.com, where Duesberg's books are sold, the majority of the reviews are positive, five stars. They're all reviewed by people like Henry Bauer, Christine Maggiore and Celia Farber and they love his books. The Internet has changed everything. If I was just a random person, I would think, "Wow. Duesberg is a very important person in HIV. I should take his view into consideration just like my HIV specialist and just like my case manager." It's put everyone on an even plane.

That's exactly right. It's the combination of the amount of information that they have put on the Internet and the accessibility of the Internet to everyone.

"They're not just providing information. That's not what the denialists are doing. They're recruiting. So their information is packaged in a much more user-friendly manner and is well-networked amongst each other."

Our research group had done research on the digital divide in AIDS care about a decade ago and there was a digital divide among people with HIV infection back then.24 Some were using the Internet. Some were not. African Americans were less likely than Caucasians.

That's all gone now. All of our participants and our research in Atlanta are online. Everyone has Internet access, if not at home, then at a friend's house, if not at a friend's, then at a sister's house, if not at a sister's house, then at an Internet cafe.

It's extremely unusual for us to find a person with HIV infection who doesn't have access to the Internet. It's a great thing. People are meeting other people. They're getting support. They're getting good information. They're finding out about clinical trials. Unfortunately, they're also coming across Rethinking AIDS, Alive & Well, and Heal. And that's the problem. We know that when people are diagnosed with or considering getting screened for a serious health problem, they turn to the Internet.

Right. When they go to these sites and read convoluted discussions about how HIV supposedly doesn't cause AIDS, Koch's law and all this other crap that they are unfamiliar with, they just think, "It's over my head. But these people are probably very smart people so maybe I should listen to them."

That's right. They're not just providing information. That's not what the denialists are doing. They're recruiting. So their information is packaged in a much more user-friendly manner and is well-networked amongst each other. Even when they are conflicting with each other, they don't conflict.

There's one group in Australia called the Perth Group that claims that HIV doesn't even exist. Duesberg says HIV does exist, but it's harmless. They don't really fight with each other online a lot.

Recently, they've had some conflict, but it's not apparent. It's not like they're debating with each other at all. What they're doing is recruiting the susceptible person, the young person, the person with HIV, the family member. They're recruiting, so their whole approach to using the Internet is really different.

Really smart people can easily be fooled by this. I spent two years of my life enmeshed in this. I spent a lot of time online. I corresponded a lot with the leading denialists, as a journalist would. I had to use a different identity because I'm, of course, a part of the so-called "establishment." So I went undercover and essentially infiltrated. I got to know a lot of these guys pretty well. And I can tell you that it's easy to be fooled.

I think I have a pretty good working knowledge of AIDS. That's all I've done for my entire career. Some of my best friends are the world's leading AIDS scientists.

Yet there were times when I went, "I have got to check that out. That sounds just too good to not be true." I would go to my fact checkers who are some of the leading scientists in AIDS and say, "Is this right?" And they would say, "No, it's completely wrong." [Laughs.]

I was being skeptical. I was really studying them. There is no question that someone who just happens upon them could easily be fooled and are being fooled.

Yes, but don't you think that the one easy way not to be fooled is to stick to a question that matters, namely: "Is HIV a dangerous disease?"

One of the key take-home messages, for me, has everything to do with credibility, which is not the same as credentials. A lot of the denialists have the credentials. Some don't and often they will misrepresent their credentials.

"When we have a friend or a brother or a sister who is talking about conspiracies and saying that HIV is harmless, that what's being done here is a big hoax to make money for the pharmaceutical companies, that Bill Clinton and Bono are conspiring to sell more of these drugs that are really killing Africans, when we hear people saying that stuff, we can't just think that it's cute and funny. We have to really challenge them. We have to say, 'Where do you get that from?' and treat it as a mental health problem."

You have people who have never had an academic job saying that they're professors, but they're not. You've got people who are journalists, who sure are sounding a lot like scientists, but they have nothing further than a bachelor's degree. You can judge a person's credibility on many dimensions, but credentials aren't the best one. You have to really look at what they have done that is an established fact.

The good news is that on the Internet, there are just as many places to do fact checking as there are to find quackery. For example, one place to go to is the National Library of Medicine Web site. It's called PubMed. You can plug in a researcher's name and search to see what he or she has done. Has Henry Bauer ever published a paper on AIDS? No. Has he ever published a paper? Well, no.

You can see that David Rasnick, who is a self-proclaimed expert in developing protease inhibitor drugs, has published papers on protease in rats in studies on arthritis.25 So you can use the power of the Internet to check people out. But you have to know where to look. And you have to be able to know what's credible and what's not credible.

But I think that part of the problem is the mistaken belief that these scientists are underdogs. That if they were given the chance they could prove their theory. That the reason they are not given the chance is because they have an alternative point of view.

That's right. Which is why, this is where we all come in. When we have a friend or a brother or a sister who is talking about conspiracies and saying that HIV is harmless, that what's being done here is a big hoax to make money for the pharmaceutical companies, that Bill Clinton and Bono are conspiring to sell more of these drugs that are really killing Africans, when we hear people saying that stuff, we can't just think that it's cute and funny. We have to really challenge them. We have to say, "Where do you get that from?" and treat it as a mental health problem.

We can't think that conspiracy thinkers are just sort of cute and funny. We have to be able to tell our friends, our brothers and our sisters that what they're saying isn't grounded in reality.

Christine Maggiore was living with HIV a long time. She had been diagnosed in 1992. So she was probably what's known as a long-term nonprogressor. She eventually progressed, but she didn't know that there were ongoing studies on people who seem to be able to survive a very long time with HIV and not take meds.26 She wasn't aware of this, nor are a lot of people aware that there are these people who don't need to take meds, some of them maybe never, and some of them not for a long time. [To read a story about a long-term nonprogressor, click here.]

Some of these people eventually need to take meds. They're just slow progressors. They don't know that some HIV-infected people take 10 years to show a symptom, some people take 15 years and some people take three years. There's this natural variation. And contrary to what people think, these nonprogressors have little on the surface in common. Some take good care of themselves. Others abuse drugs and drink heavily. They just have this mysterious ingredient that allows them to control HIV in their body.

Christine was 52 and living in a suburb of LA when she died of pneumonia, which is very unusual if you don't have an immune disorder. Her daughter died at three, of what Christine and her denialist friends say was an antibiotic reaction, which again is very unusual in a LA suburb -- so, two incredibly unusual things happening in one family. And yet, her family, friends and other denialists are saying, "Oh no. It can't be HIV."

As a psychologist, can you explain what it is that enables people to deny reality? What's that like for her loved ones and for her group? Is her group still alive?

Yes, well, it's the nature of denial and the nature of denialism. Denial is a psychological reaction that is universal in the face of a traumatic experience. It just usually doesn't last very long. When denial lasts a long time, it becomes what psychiatrists call "malignant denial." For instance, people who feel a lump in their belly and ignore it.

"With Christine Maggiore, it's pretty clear to me that she created a world that protected her from the truth. She just couldn't handle the truth. And it's actually very sad. She ignored her HIV-positive diagnosis by listening to people like Peter Duesberg and the people around him."

Denial can last a very long time, and what happens, of course, is it just gets worse. There are people who will ignore a tumor until it kills them. There are cases of women who ignore their pregnancy until they deliver. That's a malignant kind of denial.

It becomes denialism when people propagate their views and search for information to support their views, to put themselves in a bubble in order to protect themselves from a reality that they just can't face.

With Christine Maggiore, it's pretty clear to me that she created a world that protected her from the truth. She just couldn't handle the truth. And it's actually very sad. She ignored her HIV-positive diagnosis by listening to people like Peter Duesberg and the people around him.

She ended up having a baby [a daughter] that died at the age of three. The Los Angeles coroner ruled this death a death of AIDS.27 She sued the coroner's office and had a rebuttal autopsy essentially, which was actually just a review of the records by a denialist with a degree in veterinary sciences from the University of Baghdad.28 She really did surround herself with people that were true believers.

Then Christine Maggiore herself, of course, died. What did she die of? She died of pneumonia, which is extraordinarily rare in a person with a healthy immune system. We then come to find out that she had disseminated herpes and her death certificate shows that she indisputably died of AIDS. [For more information and access to her death certificate, click here.]

So what do the people that surrounded her say? You would think that they would say, "We've been wrong. My God, we've been wrong." That's not possible. It's not possible or they wouldn't be denialists.

Instead, what they're doing is constructing a different reality, and you can see this yourself if you want to. There's a Web site called AIDS Myth Exposed. It's a news group in the MS [Microsoft] network. At AIDS Myth Exposed, you'll find several different news groups that have very active postings. What they're saying is that Christine Maggiore died of stress.



The Law & Order: Special Victims Unit episode called "Retro," which was aired by NBC on Oct. 28, seemed to tell Christine Maggiore's story.

Her immune system had collapsed. That's obvious. They don't dispute that. But what they say caused the collapse was stress. And the thing that really pushed her over the edge according to them was the Law & Order: Special Victims Unit episode called "Retro," which was aired by NBC on Oct. 28. [Video clip on the left.] It was more than apparent that the episode was portraying her, one of those ripped-from-the-headlines kind of episodes.

Her friends, her followers and her believers say that's what did her in. She should have never watched the episode. It was far too stressful for her. To try to deal with the oxidation processes that were caused by the stress, she underwent a detox procedure, and that's what ultimately killed her.

But that's a completely ridiculous story. What is the medical possibility of a "healthy" 52-year-old in a Los Angeles suburb dying of stress caused by a TV show?

Well, it doesn't matter what you think. That's what they believe happened. Their reality is such that they don't trust the medical establishment. That's all corrupted. The establishment wanted her to take pills. They've constructed a reality that's impenetrable by facts. And that is the nature of denialism. It's why you never want to debate with a denialist. You can't win.

Denialism works off of everyone's suspicion of established things and of authority. We all know that the medical profession could be better about prevention. That little kernel of truth ends up connecting to this wider other thing, right?

That's right.

Could you talk a little bit about the little kernel of truth that starts this fire?

It's not just in conspiracy theorizing and thinking that bits of truth get co-opted and distorted. In denialism you see people grabbing on to threads or kernels of truth.

  • It is true that stress does run down our immune systems, but it doesn't cause AIDS.
  • It is true that illicit drug abuse isn't good for us and that it runs down our immune systems, but it doesn't destroy T cells. It's not specific.

So there are these truths that become distorted in denialism. It's the kind of thing where we can all say, "I see where that's coming from. Yes, stress is bad for you. Stress can give you a heart attack. I see that antiretrovirals, such as AZT [Retrovir, zidovudine], have side effects; doctors talk about toxicity, that's true."

So there's a reasonable, rational base there. What happens in denialism, just like in conspiracy theorizing, is that it becomes distorted, and way disproportionate to reality. From a psychological perspective, what's interesting about it is that not everybody is prone to that way of thinking. Not everybody crosses that line. What is the difference between someone who goes over the line and someone who doesn't? It's one of the great mysteries of human beings, that we're all just so different.

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Copyright © 2009 Body Health Resources Corporation. All rights reserved. Podcast disclaimer.

This podcast is a part of the series This Month in HIV. To subscribe to this series, click here.


  

This article was provided by TheBody.com. It is a part of the publication This Month in HIV.
 
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