August 3, 2009
Debunking the “Beehive” of AIDS Denialism
by James Wortman
One of the “Most Talked About” stories recently on POZ.com is a brief article on a new book titled Denying AIDS: Conspiracy Theories, Pseudoscience and Human Tragedy, originally from the June 2009 issue of POZ magazine. Here is our complete interview with the book’s author, Seth Kalichman, PhD, a social psychology professor at the University of Connecticut.
What inspired you to examine AIDS denialism in your book?
I’d been working in South Africa for years, and I’ve been aware of this crazy stuff that was going on with the president there, former President [Thabo] Mbeki. But I pretty much ignored it because we’re not going to change the president and, you know, we just have to do our work with preventing and getting treatment to people.
Like most AIDS scientists, I really ignored it even when it was in my face for quite some time. But about a year and a half ago, I came across some work from Nicoli Nattrass, who really laid out the depth of denialism and its impact on what is going on in South Africa. The way she laid it out was extremely difficult to ignore the number of people that have been essentially held back from getting treated, the number of people that had died, the number of veritable HIV infections that had happened, really, senselessly, because the president believes HIV may not cause AIDS and that antiretrovirals are poison. So the South Africa situation was glaring at that point.
And then the other thing that happened was I serendipitously stumbled upon someone here in the northeast in New York. I learned that a psychologist whose work I was very familiar with, who was trained by some of the best social scientists in the world, is an AIDS denialist. That she really believes that HIV may not cause AIDS, that [noted AIDS denialist] Peter Duesberg has not been given his due and that he, in fact, may very well be right—that HIV is harmless and that AIDS is really the result of drug abuse and antiretroviral therapy.
And I was totally blown away by this. It just absolutely enraged me. And my anger surprised me. Why would this make me so angry? And I started to look at it, and I was able to connect her denialism with the South Africa situation. I thought that this was something worth studying, and that our denialism problem needs a careful look like Nicoli Nattrass had given the South Africa denialism problem. And I was not surprised that no one had ever done that. Denialism has been completely ignored; it has been completely under researchers’ radar screen, and I think part of that is because scientists have believed that if you ignore them, they’ll go away. And, in fact, they’ve just really strengthened.
What do you make of the recent and apparently AIDS-related death of well-known AIDS denialist Christine Maggiore?
We know that her life was worsened because of her denialism. And we know that because of the success of antiretroviral therapy for most people, she probably could have had a longer, healthier life. But my feeling is that this woman is both a victim and a perpetrator. And it’s very difficult to sort those feelings out. Both the suffering that she went through and the suffering she caused. But it’s come to that, where people have actually requested the death certificate of this person from California and posted it online. Which is actually fairly obscene. But it’s really come to that.
If you talk to people who believe that there’s a scientific debate that HIV may not cause AIDS and that antiretroviral therapy is toxic poison, it’s hard for them. They have about a gazillion reasons why Christine Maggiore died that have nothing to do with her HIV infection. And it is that level of denialism where any little hole is made into this big opening for questioning the science of medicine of HIV. It’s driven AIDS scientists to such extremes as digging up death certificates and posting them online. I think it’s a real testament to how bad this is.
What is very clear among these people is that they believe she actually died of stress, that she was actually killed by people like me who questioned her convictions, who kept bringing up the [AIDS-related] death of her daughter—the real tragedy of her life. And it was really that stress that did her in. And they really believe that. Here’s a woman who tested HIV positive in 1992, and we can now see [on] her death certificate that she died of AIDS. The pneumonia was actually secondary. The primary diagnosis was disseminated herpes infection, which you really don’t see in anyone except people who have very depleted CD4 cell counts. It’s really a very specific opportunistic infection. Some of these denialists are so intractable that it just doesn’t matter. They’re not really the target of the book Denying AIDS. And I don’t think that [they are the] target of the education programs of people like Martin Delaney and John Mohr, people who are really trying to do something about denialism. Their real targets and my real targets are those people, for example, who just test HIV positive and get online looking for answers and stumble upon this stuff.
And what do you think draws people to AIDS denialism?
I think that there’s comfort for some; I think that there’s fascination or anger for others. This is not a monolithic group. It’s a very diverse group. Some people are drawn to AIDS denialism out of their own psychological issues that they’re dealing with. Like the person who has recently tested positive and can’t accept it. Or someone in their life has. Or the person who wants to get tested but wants a reason not to. But there’s a big audience in this among the antigovernment, antiestablishment types. And they’re into everything.
And there are others who really ascribe to homeopathy and alternative treatments. A lot of them, not all of them, are also gravitating toward the AIDS denialists because the AIDS denialists have used that as a hook—that AIDS should be treated naturally because the causes are natural. Like stress. So that’s a big part of the audience. But what I wouldn’t want to say is that people who are into alternative treatments are denialists. Most denialists, though, do push alternative treatments.
Would you say some of it also stems from distrust of pharmaceutical companies?
Absolutely. And that’s sort of the conspiracy-theory minded people, whom I call in the book “suspicious thinkers.” The suspicious minds. And some of the denialists, the people who are really propagating this, are very clearly paranoid. But I don’t think that the people who get online, read this stuff, buy the books and are sort of hooked into it are necessarily paranoid. But a lot of them are definitely suspicious people. They’re suspicious of government, suspicious of science and medicine and big pharma. And they do see a conspiracy. And it’s remarkable to me, how many of those people there are.
In the book you compare AIDS denialism to a beehive. Could you explain that?
What I was trying to convey is that if you take a look at all the different denialist websites and the blogs and the magazine articles, a lot of it looks fairly chaotic from a distance. You’ve got people saying HIV doesn’t even exist and no one can prove it. Then you’ve got Peter Duesberg who’s saying HIV does exist but it’s harmless. Then you’ve got other people who say HIV isn’t harmless, but it’s not sexually transmitted. And from a distance it looks like it’s a very uncoordinated, sort of swarm. Like a beehive does from a distance. But as you get closer, you see that it’s very well organized. And actually there is a centralized group, and it is the Rethinking AIDS group. And there are three or four people who are very involved in that.
To write this book I actually went undercover. I never misrepresented myself. I posed as a student of public health, which of course I am. But I had to be able to talk to these guys without barriers. I wanted to get to know what was really going on with them. And as I did that, I saw they’re very well connected with each other. In fact, there’s a vetting process that I went through to be listed as an AIDS dissident on the Rethinking AIDS website. Christine Maggiore herself vetted me, and I was posted. And once I was listed on there, the door was open to me. They would all talk to me. And it was actually very well organized. And, in that way, like a beehive.
And the other part of the swarm thing is, I do expect to get stung by this. The hate mail has already started. The online assault has started—which I fully expect. For the book to be successful, they’ve got to come after me. If they don’t then I think the book was probably a waste of time.
What do you hope readers take away from the book?
I hope there’s a couple things that they take away. One thing I hope they take away is that they can’t believe everything they read online and in books. They really need to think critically about the information that they’re getting; they need to think hard about the doctor they are seeing and be really good consumers of health care. Not to be close-minded, but be critically thinking. If a new idea comes out or if they hear something different that their doctor didn’t tell them, they should listen and attend to it.
One thing I really hope that folks with HIV will look at carefully is the credibility of who’s saying what they’re listening to. Not the credentials, but the credibility. You have professors saying HIV doesn’t cause AIDS and that you don’t have to worry about it. And those same professors say that the Loch Ness Monster exists. That should mean something.
That’s something that I’d hope the readers of POZ walk away with. That they really have a role in combating this misinformation. They have a role to become informed and to not be silent when they see misinformation. If they see something on a blog that they know to be garbage, comment on it. People who are buying into it are very vocal and very visible. And everyone else is ignoring them. So it looks like everybody’s buying into this.
All royalties from Denying AIDS will help the Family Treatment Fund provide antiretroviral medication for people living with HIV/AIDS in Africa.
Search: denialism, Seth Kalichman, Christine Maggiore, Peter Duesberg
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comments 1 - 15 (of 25 total) next
Jahn S, Left Coast, 2009-08-25 20:13:23
While I comend the exhortation to take charge of ones health with care I am frightened of the sweeping generalizations made. Paranoid is a mental health diagnosis why make it for a population? We have to live with a social stigma that is undeserved. With the blatant corruption of government and industry officials is it hard to see there is plenty of questions to warrant cognitive dissonance? I contacted HIV from my partner who was a non-progressor 12 years. I told Christine how she screwed me up
Poodle Stomper, , 2009-08-24 00:14:43
whereistheproof, can you cite evidence for your claim that "drugs, poverty, war and corruption" cause AIDS? And I mean real evidence. I say this because numerous studies have shown, for example, that drugs have NO significant effect on CD4 count (see Chao et. al). What lead to Maggiore's death with disseminated herpes? She didn't do drugs, wasn't poor and lead a healthy lifestyle. Science recognized long term nonprogressors and not just for HIV. Many diseases have these. Study up a bit.
Emanuel Ortiz, nyc, 2009-08-22 22:09:05
Most of society goes to doctors to cure their ills the way we used to go to church, not taking into consideration that they are part of a profit driven industry that absolutely benefits more from your being ill. Many denialists at least go the extra step and question information, drug safety, validity of tests, etc. They are part of the soul of the HIV experience and deserve more than to be treated like dangerous crackpots.
Oigen, , 2009-08-22 11:56:41
There is no "beehive" of denial-ism. There are however, skeptics. And their numbers are legion.
And now from the skeptics. From UCLA...Pre-exposure prophylaxis (PrEP) is a revolutionary - and some would say controversial - new strategy for combating HIV. Entire planet of HIV negatives to be pumped with chemotherapy.See..tinyurl (dot) com/kmvd4p
Why should HIV positives be the only ones suffering abject misery, eh what? If there ever was a need to define desperation then this has to be it.
whereistheproof, nyc, 2009-08-21 16:27:33
I have been hiv+ for over 22 years now. and only survived because i got off arv's (concored trial) and took peter duesbergs advise to heart. i am alive because of him. hiv does not cause aids. drugs, poverty, war and corruption does. i am as healthy as can be and there are thousands like me and even more that are unaware of their status. where is the aids epidemic? the biggest killer in the US is heart disease - aids follows under 'others'!
Seth Kalichman, Connecticut, 2009-08-13 13:53:03
AIDS Deniers have actually claimed that the Law and Order SVU ‘Retro’ episode which told the Maggiore story produced the stress that killed her. Yep, death by Law and Order. I can understand that. Lately America’s Got Talent has been killing me. Links to the Deniers claim and a link to the 2 min episode replay at NBC is at denyingaids.blogspot.com
Poodle Stomper, , 2009-08-12 08:09:40
"How can you declare with such certainly that Maggiore didn't die from the initial aids treatments or that indeed stress killed?" James, people don't get disemminated herpes from stress. If you want to claim that stress or "initial treatment" did her in then it is on you to provide the evidence. Do you have any? Maggiore died with very typical AIDS symptoms; disemminated herpes, recurrent pneumonia, and oral candidiasis. You don't get these from stress.
Kevin, West Hollywood, 2009-08-12 05:21:31
AIDS Denialism thrives on suspicions raised by what to the ordinary person seems to be enormous profits earned by the pharmaceutical industry from the sale and manufacture of AIDS drugs. The fact is. The people who create treatments for HIV infection and offer us medical care are talented people who don't need to lie to us about HIV to be wealthy and would probably rather be doing something else than taking care of our problems. I for one am grateful for their help.
J Todd DeShong, Fort Worth, 2009-08-11 16:22:45
Also to James,
Maggiore could not have died from her "initial AIDS treatment" as she claims she never took any HIV meds.
Get your facts straight. Also, stress did not kill her. Many more people have experienced as much and more stress than Maggiore.
Oigen, , 2009-08-11 11:18:01
From Kalichman, the wannabe Mother Theresa of Africa... If they see something on a blog that they know to be garbage, comment on it.....
OK. Comment... Kalichman to save South Africa, nay, the world, from evil deniers. LOL
Seth Kalichman, Connecticut, 2009-08-08 02:33:42
You are missing the point. This is not about choosing to take meds or to not take meds. I agree that Christine Maggiore had the right to refuse treatment. This is about lying, defrauding, and convincing others to not trust their doctor, ignore their HIV test result as well as avoid treatment. AIDS Denialism is a misinformation campaign that is absolutely killing people.
NM, New York, 2009-08-07 12:54:47
As mentioned in the article, Christine Maggiore exercised her right not to take antiretrovirals, and made the same decision for her daughter, Eliza Jane.
Derick, san diego, 2009-08-07 00:59:00
How tragic. Seth is receiving hate mail. That's nothing compared to the psych ops employed by the AIDS bandwagon. Regardless of the truth or falsity of HIV people have a right to manage their own health without being forced to gulp down toxicocktails.
Seth Kalichman, Connecticut, 2009-08-07 00:15:34
A couple corrections…
I have never said that HIV meds are for everyone. I am all for people making informed health decisions, including refusing meds. What we are talking about is the spread of myths, lies, and fraud. I am against misinformed health decisions and misinformation is what AIDS denialism is all about.
All of the royalties from my book Denying AIDS are donated to buy HIV meds in Africa to counter the harm perpetrated by AIDS Denialists. For info denyingaids.blogspot.com
Charley, Glendale, AZ, 2009-08-05 13:27:07
comments 1 - 15 (of 25 total) next
How can ANYONE, believe this nonsense from the likes of Christine Maggiore! Do they really believe that the labs, Dr's and drug companies are all conspiring to alter lab results?!? I caught my infection very early, less than 3 mo's after infection, my viral load and CD4 both reacted admirably to HIV medications. As one who has volunteered in many aspects of the Cause for 24 years, I have seen the devastation and shortened lives of those who are noncompliant or just plain don't take meds.
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