Does HIV really exist? And if it does exist, can it cause harm?
They're ridiculous questions, of course. If you're reading this, there's a 99.9 percent chance you agree that HIV does exist and it can cause harm. After all, the virus has been isolated in laboratories.1,2 We have blood tests that can determine how much of the virus lives inside a person's body.3-5 Scientists have even taken pictures and videos of it.6
And, of course, there is also the terrible, mind-numbing, physical proof of what HIV can do. Globally, more than 25 million people have died from the virus in the past 30 years, and 33 million people are estimated to be living with HIV right now.7
Just 12 years ago, being diagnosed with HIV was almost invariably a death sentence in the developed world.
But then, right around 1996, the skies cleared, hope spread and men and women started regaining weight and strength. Thanks to focused research, amazing scientific discoveries and the tireless work of activists, combination antiretroviral therapy brought new life to HIV-positive people who thought they had none left. Within a few years the AIDS floors in AIDS-designed hospitals throughout the U.S. emptied out.
Many HIV-positive people who took these new antiretroviral medications shook off death and slowly regained their energy.8 Some even grew strong enough to return to work and some HIV-positive women felt confident enough to fulfill their dream of having a child. This transformation was one of the most amazing success stories of modern medicine.
Speak to a person living with HIV who survived the early years of the epidemic, and you can still hear the wonder in his or her voice, as well as sense the mourning and even disbelief with respect to the hundreds of thousands of people who suffered a nightmarish litany of illnesses and died and couldn't partake in the miracle.
Yet there exists a small group of people oblivious to these remarkable successes. And it's not a world of people with any actual hands-on experience: None work in HIV medicine providing care or conducting HIV research. None seem to have witnessed the miraculous rebound of so many HIV-positive people after their initiation of HAART [highly active antiretroviral therapy]. None of them volunteer or work for any of the hundreds of HIV/AIDS organizations across the U.S. catering mostly to poor and underinsured people living with HIV. None are AIDS activists who have transformed HIV care and policy.
No, these people scoff from afar at the successes against HIV. They call themselves "AIDS dissidents." We in the HIV community call them "denialists." They are led somewhat indirectly by a tenured professor named Peter Duesberg, who is not a medical doctor. Together, this small but vocal group of people write and theorize and blog. It's like a hobby for them.
And even though they have no hands-on experience -- remember they have no medical training and no first-hand experience with patient care -- they claim to know more about HIV than all the HIV physicians, nurses and activists in the world. Among their claims is that HIV does not cause AIDS, because either HIV does not exist9 or, if it does exist, it is harmless.10 Other denialists claim that HIV tests aren't accurate.11
Denying AIDS by Seth Kalichman, Ph.D. To view an excerpt from Denying AIDS,click here.
In the denialists' conspiratorial worldview, we've all been bought off -- I've been bought off, all the HIV specialists, all the HIV nurses, all the HIV organizations in the entire world have been bought off. Anyone who doesn't agree with them they imply is corrupt, has no integrity, has no humanity and is in cahoots with the pharmaceutical industry.
It's an impossible scenario, if you think about it. No one can control that many people. But they believe it and they are looking for willing recruits who'll buy into their theories.
Every now and again, this group wins a dollop of attention from the media. But this attention is always short-lived and the denialist movement retreats back into well-deserved obscurity.
So why am I talking about them? Because even though they're irrelevant, they can still do damage. Each HIV-positive person who is pulled in by their misinformation and ends up not starting life-saving HIV treatment is one life that may be lost. Denialists can only be ignored to a certain extent. It's our responsibility to inform the world about HIV, and that includes informing the world about the harmful information that denialists dish out.
The question is: Why do these people do what they do? Why do they continue to deny the truth about HIV and AIDS? Why do they persist in the face of overwhelming evidence? We'll be looking at this subject in this, as well as the next, episode of This Month in HIV. First, we'll meet someone who went underground and learned how this group works. In our next episode, we'll talk to patients who have been duped by them and well-known activists who have dealt with them.
Thank you for joining us. So how did you get involved with the denialists?
I've been an AIDS behavioral researcher my entire career, dating back to 1989. I've dedicated all of my time to AIDS prevention and care related research. I've pretty much been absorbed in AIDS since that time. I knew about Peter Duesberg and I knew about people in the '80s, and maybe even in the early '90s, who said that HIV did not cause AIDS. It was clear to me that they were irrelevant and had gone away. I had not attended to them at all until a couple of years ago.
There were a few things that had happened at around the same time for me back then. One was that I had been doing research in South Africa and the South African president at the time (Thabo Mbeki) was well-known around the world for having surrounded himself with people who were saying such things.12 And they clearly had influenced policy in South Africa.
I was watching as antiretroviral therapies were being held back by the South African government and I got to know some people who were very actively involved as activists against the government and trying to move antiretrovirals forward.13
As I said, that was all a couple of years ago. At that same time, as the editor of a leading behavioral journal in the field of AIDS called AIDS and Behavior, I stumbled upon a person who I know to have been trained as a psychologist. I know that she had done good research early in her career and that she was trained by some of the best people in the country. I knew her to be a good scientist. In corresponding with her, she told me that she is basically an AIDS denialist and that she had recently written a book review of Peter Duesberg's ancient book, and she directed me to read that.
It was posted at a Web site that I had never seen before called Rethinking AIDS. At Rethinking AIDS, I read her book review of Peter Duesberg's book and I was amazed. I was absolutely dumbfounded that someone who I knew to be an intelligent person, who had been trained as a behavioral scientist, would actually believe this.
I corresponded with her some more to find out where this was coming from. She was just a very suspicious person. She was very skeptical. She said that she would have coffee with her friends and they would spend time -- as a hobby essentially -- deconstructing different theories and they saw political motivation in this instance. She said, "Don't you think that there's something strange about the first President George Bush and his warming up to the gay community and buying into this whole thing?" It sounded like conspiracy thinking to me. And that's what got me interested.
I thought that this was a real psychological phenomenon that warranted looking at. Connecting what she said to what I saw at Rethinking AIDS -- which is a very large Web site that is linked to numerous other Web sites all around the world -- it became apparent to me that this is a real phenomenon, a real problem.
"It's mind-boggling actually, to refute what is well-known in medicine and science for the sake of essentially a hobby. I think some of these people really _don't_ know how destructive they're being."
The third thing that happened at that same time was that the International AIDS Society was paying attention to these people. In particular, Dr. Mark Wainberg and Dr. John Moore were writing quite a bit about the destructiveness of the AIDS denialists and what they have been saying and who has been listening to them.14
Those three things came together for me and got me very interested. I saw that no one had done any research on AIDS denialism, and there were no books at the time on AIDS denialism. That's when I decided to do something.
It's mind-boggling actually, to refute what is well-known in medicine and science for the sake of essentially a hobby. I think some of these people really don't know how destructive they're being. It's sort of fun and games for some of them. Some of them are profiteering and some of them just want attention. They want attention that they would have never been able to get as a journalist or as an academic. There are all kinds of people involved in this.
What makes AIDS denialism different from other types of denialism (like Holocaust denial, 9/11 truth-seeking and all these other conspiracy theories), and what is particularly destructive about AIDS denialism, is exactly what you said. Where we turn to now for information is on the Internet. The AIDS denialists are so prevalent on the Internet that the odds are that, if you search for "AIDS treatment," "AIDS cure" or "HIV/AIDS," the hits that you're going to get will be the National Institutes of Health [NIH] and Johns Hopkins University, and right under them is going to be Rethinking AIDS, the Alberta Reappraising AIDS Society and AIDS VirusMyth, the Web sites for AIDS denialists groups literally around the world.
How one can distinguish the science from the non-science is not obvious. They're very slick. They have created scientific-looking publications. They write books and self-publish them. To the average person, it's indistinguishable. What they have done is very successfully created confusion. As a result, people are following the denialists' train of thinking and are:
Not getting tested for HIV because they think the test is unreliable and invalid.
Ignoring their test result if they have tested positive because they think the test is unreliable and invalid and there's really no such thing as HIV.
Avoiding antiretroviral therapy if they have tested positive and want to treat their HIV because they believe it's toxic poison and instead turn to herbal remedies [which have never been proven to work against HIV].
So people are making misinformed decisions even though what we've worked so hard to do is provide good, solid information, so that people can make good, informed decisions. What the denialists are doing is confusing information with misinformation and that's resulting in misinformed decisions.
Let's go over terminology. As if HIV wasn't complicated enough, we have these people who we call denialists, but who call themselves dissidents. They also say that people who believe in HIV science are orthodox and they are not. Could you explain the terminology a little bit?
"What's particularly destructive in AIDS denialism is the bending and the distorting of medically established facts for self-indulging purposes. ... For example, to protect one's self from information about one's own diagnosis or prognosis that one just cannot accept."
It can be confusing. In science, there are mainstream scientists and mainstream theories, and there are often people who are dissidents. Dissidents actually often make major contributions. What a dissident does is breaks away from the mainstream thinking and proposes a different idea. Then the dissident does research or other people do research, and it either supports or refutes the dissident's perspective and science moves on.
For example, in 1987, Peter Duesberg, at the University of California, Berkeley -- a very well-known and, at the time, renowned biologist -- was a dissident scientist in AIDS. He proposed an alternative theory that AIDS is not caused by a virus. He said that HIV is a harmless passenger virus and that AIDS is actually caused by drug abuse, poverty and antiretrovirals themselves.15
In 1987, when we knew much less about AIDS, he was a dissident. And in the history of science, we would say there's nothing wrong with that. However, the facts did not bear out what he was saying. The research didn't support that alternative view. But some people -- including Peter Duesberg -- just hung onto those views and never moved on with the science. That's when someone turns from a dissident into a denialist.
What's particularly destructive in AIDS denialism is the bending and the distorting of medically established facts for self-indulging purposes. Denialism is always coming from a self-indulging place. For example, to protect one's self from information about one's own diagnosis or prognosis that one just cannot accept.
Another place is from people who don't have HIV, but are looking for attention or notoriety. We see that in academics and journalists, like Celia Farber, who have become involved in denialism. You don't ever hear denialists expressing great concern about AIDS or about people with HIV.
Right, so let's go back to Duesberg. He had a different theory about the cause of AIDS a long time ago. Since then, thousands of clinical trials have disproven him.16 It sounds completely ridiculous that, as a scientist, he would still believe the same thing he believed in '84 when so much has been discovered about HIV since then.
"I met Peter Duesberg and I don't have any question that he really _believes_ that HIV is harmless and that AIDS is not caused by an infectious disease."
Yes. I met Peter Duesberg and I don't have any question that he really believes that HIV is harmless and that AIDS is not caused by an infectious disease. He looked me dead in the eye and -- it was completely spontaneous -- he said to me, "This is not an infectious disease. There's no vaccine after all these years. This is not infectious." That moment was so valuable to me because I walked away saying, he really believes this. It fits his whole worldview.
Peter Duesberg doesn't talk much about AIDS anymore and he doesn't write anything about AIDS. What he's actively involved in now is cancer. What he's saying about cancer is essentially the same thing.17,18 He doesn't believe that there's a genetic basis for any cancers, none. He believes that cancer doesn't run in families because of their genetics. It runs in families because of what they're exposed to. It's all about the environment. Chemicals, drugs, chemotherapy, these are the things that cause cancer for Peter Duesberg. It's exactly what he says about AIDS. In fact, AIDS is incidental for him. It's how he sees the world, and it's impenetrable by scientific fact. It's mind-boggling because he's a trained scientist.
This is particularly sad since lots of people without advanced degrees think that someone with an advanced degree is somehow smarter. Yet some of the most prominent people who support Duesberg are people with advanced degrees. They continue to support him. Duesberg continues to hold his position in Berkeley even though he's acting irresponsibly. Isn't this sort of behavior an argument against tenure -- where a professor, like Duesberg, has a job for life? They can keep their job, no matter what kind of nutty thing they say -- even when what they say has no scientific basis, even though clearly it's against established fact.
There have been people who have written about Peter Duesberg.19 They have referred to him as an extreme narcissist, just completely self-indulged. I think that there's some accuracy to that. There's no question that he enjoys attention.
I spent a couple of days at a conference that he held on cancer. I was able to watch him interact with people and he's a very intellectually alive human being, but it's all very self-directed. He questions what people are saying. He really challenges what people are thinking, but it's all directed back at himself with his ideas and what he has to say. You can have an entire room basically yell at him, "It isn't that way. Yes, there is a genetic basis for cervical cancer." And he basically brushes them off.
So it's all very self-indulging, which is narcissistic. But he's a complicated character because there's, I think, much more to it than that. I think he's an angry man. I think he's bitter. He really does feel that he's been done wrong. He is definitely a believer in conspiracies against him. He talks a lot about peer review being completely biased in science. That the research community is all corrupt because of money from the government and money from pharmaceutical companies, and that there's dishonesty in all of this. He believes he's a victim of all of this.
"Duesberg provided what Maggiore wanted. That's what a lot of people are getting from the denialists; they're hearing what _everyone wants_ to hear. Don't _you_ want to know that HIV is a myth? Don't _you_ wish that it didn't cause this disease? Don't _you_ wish that people didn't have to take antiretrovirals? Who wouldn't want that?"
How did Duesberg get so many followers in terms of journalists, such as Celia Farber and David Crowe? What is it that he's inspired in them? His books seem incomprehensible.
Again, I think there are multiple factors in play here. One thing about Duesberg is that he's a very engaging human being.
Another following comes from people that have known him and worked with him at the University of Berkeley. A lot of the AIDS denialists that are very active had gone through Berkeley. Another factor is his German heritage. There's a huge following for him among people from Germany and among German Americans. There seems to be this nationalistic pride because there is an enormous number of denialists that are German/German American. That seems to be the only explanation for that. Duesberg identifies himself as an American, but he spends every summer in Germany and he's got a lot of ties there.
Christine Maggiore, who recently died of AIDS, was probably the most vocal denialist/activist.20 Christine was hearing from Peter Duesberg what she wanted to hear -- that she tested HIV positive and it didn't mean anything; that her baby died, but couldn't have died of AIDS because AIDS isn't caused by HIV, and it's not a virus that she has; all that crazy, convoluted stuff that she was believing and saying protected her.
It's pretty easy to understand why people might want to believe Duesberg. It's really hard to accept that you have this virus. It's really hard to accept that you may have passed this virus onto your child. It's really hard to accept that your child has died.
Duesberg provided what Maggiore wanted. That's what a lot of people are getting from the denialists; they're hearing what everyone wants to hear. Don't you want to know that HIV is a myth? Don't you wish that it didn't cause this disease? Don't you wish that people didn't have to take antiretrovirals? Who wouldn't want that?
So you think Duesberg fulfills the psychological need that people have to deny a frightening reality?
I do. I say that because of my interactions with him. It's hard to believe, but I do believe it. I think that it's psychologically based. I think that he's entrenched in his beliefs to the point where they completely distort what he should be able to objectively see as reality.
We see it in the few times over the last few years that Duesberg has done presentations on AIDS -- I haven't been there, but he posts his slides and the presentations on the Internet for anyone to see. [Click here to view some samples.] It's very clear what he's doing. He's picking and choosing research findings to suit his needs, violating every principle of science in doing so to make his point. It's really all about making his point, though I believe that he believes he's doing the right thing.
Is he the intellectual leader of this movement?
Yes. It's fair to say that he's certainly the most credible scientist that has signed onto AIDS denialism. Most every other scientist that has signed on is easily rebuked as a quack, a fluke, fringe or a pseudoscientist. But he is difficult to do that with because of his early career accomplishments.
The other one that's difficult to do that with is Kary Mullis. Kary Mullis won the Nobel Prize for inventing the PCR [polymerase chain reaction] test. He's easier to discredit though because he admits that while he was developing his PCR test, he was taking LSD, and he also swears that he was abducted by aliens.21 So when he says that HIV can't cause AIDS, it's more apparent that he's not very credible.
Peter Duesberg, on the other hand though, plays the victim. It's much more difficult to call him not credible. What has damaged his credibility are his views on AIDS. He's not taken seriously in his cancer work because he's an AIDS denialist.
Is there an element of being anti-gay in Duesberg's worldview?
It's more apparent in some denialists than in others. Duesberg has a history of saying homophobic things. He has a history of saying that not all gays get AIDS, that it's only those that are involved in drugs, those guys that are wearing -- and this is a quote -- "leather jackets." By the way, he wears a leather jacket in some pictures that I've seen of him. But he has a history of referring to gay men as homos. This is all in press interviews with him.
Others have been even more blatant. There's a professor [emeritus of] Virginia Tech University now who's getting a lot of attention. He wrote in a book of his, "I may be old fashioned, but it's pretty obvious to me that homosexuality is a disease."22 He has since apologized for that and says he's in recovery, essentially as a homophobe.
The homophobic connection to AIDS denialism is another one of those threads. It's not what it's all about, but racism and homophobia are threads that connect some denialists to AIDS denialism.
"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.
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 denial_ism_ 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?
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.
Could you talk a little bit about some of the people who are financing AIDS denialism? Who are these people and why would they finance such a thing?
Those are questions that a lot of people are asking and for which there aren't a lot of answers. It does cost money to do some of these things. Rethinking AIDS has employed a publicist. They travel. There's money that's involved in some of these things. It doesn't cost any money to set up a Web site. I did it over Christmas break, though it does take time to maintain a Web site. You don't see a lot of young, productive people in AIDS denialism. You see them blogging, but a lot of the people that are most visible are pretty old. A lot of them are retired or academic emeriti. You don't see non-tenured faculty at universities too involved in this. And when you do, they're not there for very long.
Where is the money coming from? It's pretty clear that there are people that make donations. At the Alberta Reappraising AIDS Society and at Rethinking AIDS, you can donate. How much anyone donates, I've no idea. We know that there have been venture capitalists, particularly with political bents, interestingly enough from the libertarian party, who have financed some things.
For example, we know that the San Francisco-based venture capitalist Robert Leppo co-produced what was essentially a major motion picture [The Other Side of AIDS] directed by Christine Maggiore's husband, Robin Scovill, about basically her story. That's public knowledge. We know that because it's on there.
It's also true that Robert Leppo is financing Peter Duesberg's cancer lab. Now how do we know that? Well, because it's well-disclosed in the program for Peter Duesberg's cancer conference that I went to. And he was there. This didn't require any undercover investigative work.
There is money that is flowing through venture capitalists who have bought into this and who see maybe a way to make some money by selling, perhaps, herbal remedies or other products in place of antiretrovirals, or by selling books that are published by fringe publishers.
"Another thing that's happening in terms of money is that denialists are very involved in undermining charities and programs, particularly the (RED) campaign. They're very active in trying to get people to _not_ buy (RED) products (Bono's venture that involves the Gap, etcetera), part of the proceeds of which go to The Global Fund to Fight AIDS, Tuberculosis and Malaria."
Venture capitalists by definition want to make money. They don't just want to give money away. They're sort of betting on things. But that's all I know. And again, I only know that because it's in the public domain. You don't have to look very far to find this.
Another thing that's happening in terms of money is that denialists are very involved in undermining charities and programs, particularly the (RED) campaign. They're very active in trying to get people to not buy (RED) products (Bono's venture that involves the Gap, etcetera), part of the proceeds of which go to The Global Fund to Fight AIDS, Tuberculosis and Malaria.
The other thing that they're very involved in right now are lawsuits. They're trying to get individuals who were administered post-exposure prophylaxis (i.e., someone who was exposed to HIV and then given antiretrovirals to try to prevent the infection from happening) to sue those hospitals and doctors, as well as the pharmaceutical companies that produce the antiretrovirals, for supposedly exposing them to toxic drugs to prevent an infection that supposedly no one can prove would even happen.
They haven't won any cases that I know of. But among them are lawyers who are dedicating time to doing this. The testimony is provided by these "world-renowned" scientists like Peter Duesberg and David Rasnick.
The good news is, as far as I can tell, they haven't gotten any traction. I'm not even aware of cases being settled, but I know that there are still cases pending.
They're also pretty involved in creating defenses for people who are being prosecuted for exposing others to HIV, saying that their exposing people to HIV is harmless because there's no proof that HIV even causes AIDS. They're serving as expert witnesses in these cases, so there's money involved there.
There was a case like that in Australia that they lost.
That's right. The Parenzee case was the most celebrated case.29 American scientists flew out to Australia to rebut the denialists' testimonies, particularly that of the Perth Group, which was very involved in the case. You had the whole array of denialists testifying on Parenzee's behalf, and then you had some of the world's greatest AIDS scientists rebutting them.
The good news is the judge didn't accept most of the denialists as legitimate authorities, as legitimate scientists, and didn't accept their testimony.30 The bad news is they're distracting. They're spending a lot of people's time. They're wasting a lot of our resources. They're distracting a lot of scientists from their work. They're doing a lot of damage.
However, they aren't making great traction in places where it could count. They've been trying to persuade Congress; they've targeted specific Congressmen and women, trying to gain their attention and their time. They've done a lot of damage, but they don't have the credibility to really take a big leap.
A lot of people are aware that they were successful in stopping antiretroviral clinical trials with children in New York City.31,32 That's probably one of the most destructive things that they've actually been able to achieve in a long time.
So I don't want to say that they're not doing damage, that no one's paying attention to them. That wouldn't be true. But in terms of big policy issues and infiltrating the criminal justice system and having cases overturned, they haven't made that traction yet.
Let's talk about pharmaceutical company money. Did you receive money from pharmaceutical companies to write the book and to speak about this issue?
In the book, I disclose all of my potential involvement in "conspiracies" in the very front. I've never had any funding from pharmaceutical companies, but I do accept pens and notepads from them when I go to conferences. I've never been funded by the Gates Foundation, but I do use Microsoft products. I am funded by the NIH. All of my research is funded by the NIH and I suspect that makes me corrupt in the eyes of the denialists.
Pharmaceutical companies have no involvement in anything that I do. I've never taken money from them. The really cool thing about my book Denying AIDS is that all of the royalties are being donated to buy antiretroviral therapies in Africa. There's an organization called the Family Treatment Fund and they will get all of the royalties for the book.
Let's talk about the people who aren't able to make decisions from an educated point of view. I knew a young man who couldn't understand the discussion about HIV. He decided to listen to Gary Null who's a vitamin salesman in New York. Gary Null has a book and a movie about AIDS and he says that you shouldn't take HIV medications because they're toxic.
So this young man stopped his medications and he started seeing a healer for $60 a week who would lay hands on him and within two years, he was dead. What do we do about people like that, who can't make heads or tails about all of this noise and all this argument?
"'What mattered to me as \[a\] person living with HIV was to be told that HIV did not cause AIDS. That was nice. Of course, it was like printing money when the economy is not doing well. Or pissing in your pants when the weather is too cold. Comforting for a while but disastrous in the long run.'"
Winstone Zulu, a Zambian AIDS activist and former denialist
I'm very familiar with Gary Null. His book is impossible to read. It's not written in a known language. It's what psychiatrists would call a word salad. It's as if you took a bunch of words, put them in a blender and poured them on a page. It's an unreadable book. That's what makes it so criminal, because it's completely uninterpretable and looks scientific, and really persuades people to purchase his vitamins and foods. There aren't a whole lot of people that are profiting off of this, but Gary Null is one.
It's pretty destructive. He's another one of these charismatic, convincing people. So how do we take better care of the people that these guys, particularly people like Gary Null, get their hooks into? The best thing we can do for these people is to be supportive of them and direct them to good information to try to balance it out.
I think fighting with people, arguing with them, debating and going back and forth is not productive when they've really gotten involved in the denialism, and they go to the Rethinking AIDS site, and they've read Henry Bauer's book, which is almost readable, and they've read Celia Farber's articles.
When someone has really gotten into this, it's extremely easy to argue and debate; it'll just never get you anywhere. The best thing to do is to say that that's one perspective.
But if they're really serious about "rethinking," if they're really serious about being critical and not just accepting what's being spoon-fed to them from the medical establishment and the "orthodoxy," they shouldn't be doing that with Alive & Well either.
We need to present alternatives to broaden their thinking and have a conversation, not a debate, about all perspectives.
What we would really like is for someone to go to a doctor, not to give up their acupuncturist and their homeopathy, but to go to a doctor as well; to think about complementary treatment, as well as adjunct treatment, as well as alternative treatment.
That's what I think is most helpful. We would like for people to be proactive. We'd like for them to take antiretrovirals, but for a lot of people it's just not going to happen. What Elisabeth Kübler-Ross says is that, sometimes, you just have to be there for people, be able to be supportive of them, when they are shaken from their denial. Sometimes that's just the best that we can do.
You have an amazing quote at the beginning of Denying AIDS. It's from Winstone Zulu, a Zambian AIDS activist and former denialist. He says, "What mattered to me as [a] person living with HIV was to be told that HIV did not cause AIDS. That was nice. Of course, it was like printing money when the economy is not doing well. Or pissing in your pants when the weather is too cold. Comforting for a while but disastrous in the long run."
Yes, I think it really says it all. I have an author's blog for the book and I put it at the top. Whenever I go to the blog, I think about using that space for something different, but I won't remove it. I think it just says it all.
He was on President Mbeki's infamous 2000 AIDS panel as a consumer. He really was a denialist. He was a very vocal activist in Africa.
He got really sick. He got a number of fungal infections and it sort of shook him. He said, "What the hell am I doing? People are saying there are medications that can help me. This is going to kill me." Shaken, he completely reversed course and now he's one of the great vocal advocates for expanding HIV treatments in Africa.
Yes, it's a great quote. I think it says it all.
Yes. Thank you so much, Seth, for taking the time to talk with me. This is such a huge subject. There's so much to talk about. Hopefully people will get inspired to buy your book, to read the excerpt, to look at your Web site and to go to AIDSTruth.org in order to find out more about this. Thank you so much.
If you were once a "dissident," or if you know someone who used to be one, please contact Seth Kalichman. E-mail him at email@example.com.
This transcript has been lightly edited for clarity.
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Resources: Countering AIDS Denialism
AIDStruth.org In 2006, a group of activists and scientists launched a Web site to address some of the denialists' claims. AIDStruth.org receives no pharmaceutical company funding and is maintained through the hard work and volunteer efforts of dedicated researchers and activists.
AIDS Denialists: How to Respond (May 5, 2000) This article was written by John James, a dedicated, early HIV/AIDS activist and one of the earliest disseminators of trustworthy HIV/AIDS research. From AIDS Treatment News
Quack Record: Best-Selling Health and Fitness Guru Gary Null Weighs in on AIDS (May 21, 2002) Longtime HIV survivor Peter Kurth says that almost all of what Gary Null says is useless, dangerous and just plain wrong. From Salon.com
AIDS Denialists Who Have Died Tragically, there have been many men and women caught in the denialists' web of confusion. Most of their deaths are not documented; here are some that AIDStruth.org has documented. From AIDStruth.org
Study Cites Toll of AIDS Policy in South Africa (November 25, 2008) A Harvard study estimates that the S. African government could have prevented the premature deaths of 365,000 people if it had provided HIV medications. The former president of South Africa Thabo Mbeki was an AIDS denialist. From The New York Times
Gorski D. Christine Maggiore and Eliza Jane Scovill: living and dying with HIV/AIDS denialism [Science-Based Medicine Web site]. January 5, 2009. Available at: http://www.sciencebasedmedicine.org/?p=328. Accessed June 8, 2009.
Mogul F, Rodriguez C. Report: city foster-care children weren't 'guinea pigs,' but weren't well-protected, either [WNYC Radio Web site]. January 28, 2009. Available at: http://www.wnyc.org/news/articles/122225. Accessed June 8, 2009.
Ross T, Lifflander A, Trued S, et al. The experiences of New York City foster children in HIV/AIDS clinical trials [Vera Institute for Justice Web site]. January 1, 2009. Available at: http://www.vera.org/content/experiences-new-york-city-foster-children-hivaids-clinical-trials. Accessed June 8, 2009.