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.
So let me welcome clinical psychologist Seth Kalichman, who is also a professor of social psychology at the University of Connecticut. He recently completed a fascinating book, titled Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy, in which he looked into this odd group of people. He'll try to help us understand how the AIDS denialist movement came to be and what keeps it going.
Welcome, Dr. Kalichman.
Hi, thank you for having me.
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.