The Cult of HIV Denialism
More is known about HIV than about any other virus. Less than three decades ago, doctors were perplexed by the appearance of Kaposi's sarcoma and Pneumocystis pneumonia (PCP) in young gay men. Since then, scientists and doctors, spurred by the activism of people with AIDS, discovered the virus now called HIV and proved that it causes AIDS by crippling the immune system until the body can no longer resist life-threatening infections.
Scientists around the world have isolated HIV, photographed it with electron microscopes, and sequenced the genomes of its different subtypes. There are now highly accurate tests for HIV antibodies and the virus itself, and increasingly effective and tolerable antiretroviral drugs (ARVs) for its treatment. Science is a gradual process, and there is still much that is not fully understood about HIV, but the evidence that HIV exists, is transmissible by blood, semen, and vaginal fluids -- and that it causes AIDS -- is vast and thorough.
The Denialists and Their Cult
And yet there are thousands of people who persistently reject these facts. They believe that HIV is harmless or doesn't exist. Some argue that AIDS has other underlying causes, such as drugs, depression, "dirty" sex, stress, malnutrition, or conventional medicine. Others say that AIDS is just an artificial clustering of familiar diseases. Those who reject HIV/AIDS science call themselves "AIDS dissidents," but others usually refer them to as "HIV denialists" because they elevate personal denial into an ideology.
Most people are astonished by the existence of HIV denialism. "I had no idea there were 'AIDS deniers,' and I still don't understand why someone would believe such a thing," a blogger wrote upon reading of the deaths of denialist Christine Maggiore and her young daughter, both from AIDS. What is most baffling is the persistence of irrational beliefs, held firmly despite the evidence, despite the terrible deaths, and despite the absence of a coherent alternative theory. How can people ignore both scientific evidence and their own failing health? How could Maggiore do nothing to prevent HIV transmission to her children? How could she allow her child and herself to die needlessly? And how could her admirers, initially frightened, go on to rebuild the wall of denial?
HIV denialism can be understood if we view the movement as a kind of cult. Denialists refer to HIV medicine and science as "the orthodoxy," giving the field a religious framework, and imagine themselves in an oppositional, visionary role.
The persistence of the HIV denialism can be understood if we view the movement as a kind of cult. Denialists refer to HIV medicine and science as "the orthodoxy," giving the field a religious framework, and imagine themselves in an oppositional, visionary role. Many of the features that social scientists find typical of cults characterize the denialists. Most fundamentally, they maintain an intense "us-versus-them" worldview. Those inside belong to an exalted and secretive group -- they feel superior but persecuted for knowing a hidden truth. They believe that the pharmaceutical industry, governments, researchers, clinicians, the United Nations, AIDS activists, foundations, and HIV organizations are united in an elaborate global plot, which ex-traffic cop Clark Baker calls "the most significant criminal conspiracy I have ever imagined" to kill healthy people with toxic drugs for profit.
Doctrine and Indoctrination
Many HIV denialists adopt alternative health and spiritual beliefs, including consciousness-altering practices that are typical of cults. The use of hypnosis by HEAL-New York stands out. Members believe that simply being told that they are HIV-positive makes people sicken and die. HEAL's leader, Michael Ellner, uses hypnosis to extract people from the deadly mental "AIDS Zone" and to make them feel "at peace with testing positive."
Ellner is not alone in thinking that words kill but viruses don't. Cult scholars call this "mystical manipulation." Denialist Matt Irwin developed the theory in AIDS and the Voodoo Hex: "The severe, acute psychological stress of being diagnosed 'HIV Positive' is quickly transformed into a severe, chronic psychological stress of living with a prediction of a horrifying decline that could start at any time. This causes a suppression of the immune system, with selective depletion of CD4 T-cells. ... These factors have been studied in healthy people where they create the very same immunosuppression and immune dysregulation that may later be called 'AIDS.'"
Denialist Michael Geiger is another proponent of "dangerous" thoughts, and even accused another dissident of helping to kill Christine Maggiore by worrying about her. "Have we as yet learned nothing ... of how easy it is to plant projections of sickness and death onto our own selves, as well as our friends, acquaintances or even onto our children and thereby help to create those fears into our realities?" Ironically, Celia Farber regularly "projects" in just this way: "I feared for [Maggiore's] life, always. I feared the battle would kill her, as I have felt it could kill me, if I couldn't find enough beauty to offset the malevolence. This is a deeply occult battle, and Christine got caught in its darkest shadows." Farber also blames the "AIDS orthodoxy" for long-distance mental homicide: "This is voodoo, what they are doing to [South Africa's denialist Health Minister] Manto. It is heartbreaking. I sometimes think they killed [Maggiore's daughter] EJ with their voodoo, too. What did EJ die of? Can anybody explain it and does it look like anything anybody has ever seen?" (EJ died of PCP.)
Cults often manipulate feelings of shame and guilt to control their members. Because both AIDS and the activities associated with HIV transmission are stigmatized, the HIV-negative denialist leadership often degrades those who have HIV, even if they are dissidents themselves. Peter Duesberg has always blamed AIDS in gay men on poppers and promiscuity; he dismisses those who say they didn't engage in either behavior as liars. Clark Baker says that AIDS was invented because "a small group of promiscuous, addicted, nitrite-huffing, gonorrheal and syphilitic bath house veterans began to get sick" and "refused to accept blame for their self-destructive behavior." A poster on a denialist forum attributes AIDS to "premature aging" from "snorting poppers, doing meth, drinking heavily, smoking heavily, eating poorly, not sleeping, having unprotected sex and taking the various pathogens of hundreds of sexual partners into your body."
HIV-positive denialists who get sick are blamed for lacking commitment: "Given a choice between the opposing ideas of dying from the deadly HIV product or living a long healthy life based on the dissident belief that the HIV product is nothing more than a baseless commodity being sold by junk merchants, chosing [sic] the dissident dream is the far better choice. A pseudo dissident ... will use the dissident view as a survival coping device ... When ordinary illness strikes and they run to RX drugs and suffer the very types of health decline that the dissident model predicts, they attack the dissident message."
Denialists who die from AIDS are often posthumously smeared as liars and secret addicts. When Raphael Lombardo died, Peter Duesberg wrote, "In hindsight, I think his letter was almost too good to be true. I am afraid now, he described the man he wanted to be and his Italian family expected him to be, but not the one he really was." (Duesberg meant that Lombardo lied about drug use.) Liam Scheff rolled the reputation of Mark Griffiths down a slippery slope of innuendo into the gutter: "I knew Mark; he was cogent when I worked with him -- never anything but. Almost. Sometimes he was -- once or twice he'd been -- a bit groggy. But he told me that it was alcohol. In fact he told me that he did consume alcohol -- perhaps more than he should." Scheff said drinking, not AIDS, killed Griffiths.
Like those leaving a cult, former denialists are treated with extraordinary hostility. Dr. Joseph Sonnabend was one of the first physicians to treat people with AIDS. He insisted on a very high threshold of evidence that HIV causes AIDS, was cautious in prescribing unproven treatments, and recognized that co-factors, such as drug use and frequent STDs, influence an individual's risk of infection upon exposure and how fast HIV disease progresses. Denialists have often claimed Sonnabend as one of their own. When clips of him were used in the denialist film "House of Numbers" to support the denialist perspective, Sonnabend responded with a scathing blog at Poz.com, repudiating the film's message and affirming that HIV causes AIDS and that ARVs save lives. He wrote: "It is hard to adequately convey the feelings of a physician who was able to finally help his patients in the mid-1990s, having lost hundreds to this disease before that time. By the time these drugs became available about 400 of my patients had succumbed to AIDS, a dreadful rate of mortality. The effect of these drugs was life saving to those with advanced disease whose survival had been limited before. The portrayal of these drugs as in effect only toxic is so unfair."
Sonnabend was immediately savaged by denialists for betraying the cult. In one forum, "Ellis" wrote: "[Y]ou're a disgusting fraud, in my opinion, having once bravely stood apart from the racket, now pointing fingers and calling names of those who still have the decency to not be bought and sold for dollars and popularity contests. Who cares if HIV causes AIDS, or ten thousand things cause AIDS? ... Are you attempting to denigrate the film because of your own outlandish, humiliating lack of composure on camera? Because you sound like the old boozy floozy you really might be, not so deep down? Because you sold out to corporate pseudo-science a long time ago, do you now pour hatred onto those who still aren't satisfied with the one-size-fits-none industrial diagnosis? Shame on you, deep, deep, deep shame. You absurd old sell-out."
Celia Farber similarly attacked Sonnabend on the Spectator's website, accusing him of personal and medical treachery: "I have countless hours of tapes from the ever shifting but consistently indignant Joe Sonnabend dating as far back at 1988 ... through 2001, if not longer. After that, he became impossibly sycophantic to the orthodoxy. ... As for me, like everybody else under Joe's Bus, I forgave him because he seemed so abashed. I even invited him to my wedding. But he is a weak, dishonest man without any integrity, who loves the sensation of throwing everybody under the bus." Sonnabend's sin was to continue to evaluate the evidence, until the proof that HIV causes AIDS and that HAART is an effective treatment was conclusive.
Controlling the Flock
Peter Duesberg has always blamed AIDS in gay men on poppers and promiscuity; he dismisses those who say they didn't engage in either behavior as liars.
Within cults, the milieu is controlled and members are isolated. For denialists, who have no ashram, this happens online and in small groups. People worried about HIV are urged not to take the antibody test, to avoid mainstream information about AIDS, and to "stay as far away from allopathic doctors as possible."
Robert Lifton, a scholar of cults, identified the "principle of doctrine over person" as a characteristic feature. This doctrine "is invoked when cult members sense a conflict between what they are experiencing and what dogma says they should experience. The internalized message ... is that one must negate that personal experience on behalf of the truth of the dogma. Contradictions become associated with guilt: doubt indicates one's own deficiency or evil." Many HIV-positive denialists struggle with the reality of failing immune systems, which undermines their belief that HIV is irrelevant. The long list of denialists who have died from AIDS (posted on AIDStruth.org) contrasts with the fact that not one of the HIV-negative denialist leaders has died young, let alone with multiple strange infections that happen to be AIDS-defining illnesses.
Some HIV-positive denialists defy the prohibition on HIV treatment when they develop AIDS; they start ARVs and experience a rapid return to health. But instead of abandoning denial, many struggle to frame an alternative explanation for the success of the meds. Noreen Martin insists that her AIDS is not viral: "My own experience with AIDS was due to a lifetime of negative health issues. When extremely sick, I took the medicines, ate healthy, took over 50 supplements a day, and had a good attitude. So, within a few months I was as good as new." She stopped ARVs for three years. "During this time," she wrote, "my fatigue slowly came back, my CD4s dipped and my viral load increased to over 3 million. Nevertheless, I never placed much stock in either of these numbers because after extensive research, I realized that neither were [sic] related to health. It was other conditions that caused the problems and the ARVs were powerful enough to keep them at bay. ... Last fall, I became extremely tired again after being anemic for almost a year and fighting lymphedema for months, I took the ARVs, as I could barely get off the couch and could not function in life." Her health again improved.
Another denialist said, "I have seen many friends get better on ARVs, but my understanding has always been that these drugs are broad spectrum in their efficacy -- that they serve to kill virtually all pathogens, but also all the 'good stuff' in our bodies." Another, a thoughtful woman struggling to reconcile her recurrent illness with dogma, wrote: "All I can say is that I'm doing what seems to be working at the time. If it stops working, I'll make a new plan. And just because they call them antiretrovirals doesn't mean that's what they are." The only way they can remain alive and in the dissident camp is to pretend that ARVs, so precisely designed to target the ways that HIV infects T-cells, are a supercharged all-purpose germicide.
Some denialists with HIV are unable to ignore their own experience, and are pushing back against the cult rhetoric. One weary man, positive since 1996, wrote, "Frankly, I'm sick of the questions at this point. Some of us here are experiencing strangely similar symptoms. Some well known people have died just like the orthodoxy said they would. At what point are dissidents going to start asking the important questions, rather than repeat the words 'AIDS ZONE' over and over? I'm not in any AIDS zone, but something is happening beyond my control. I have never been closer to taking Atripla than I am today. I hate to type that ... but it's true."
The denialist movement is also deeply split by conflicting theories of AIDS causality, different schools of quackery, and the basic question of whether the virus exists or not. Their unity is only maintained by their ritual invocation of long-disproved claims and their refusal to engage with scientific evidence. The most successful denialist propaganda avoids making direct claims and persuades only by innuendo and inference, because clear and specific statements generate hostility within the movement and can be easily disproven by evidence.
Still, it is very difficult for believers to break free of HIV denialism. Dissidents build their worldviews, their sense of themselves as heroic and embattled, their careers in journalism and alternative medicine, and their webs of social relationships around their rejection of HIV science and medicine. They have a lot to lose if they acknowledge that they are simply wrong. But as HIV treatments get better and better, and people with HIV live long and healthy lives using them, the psychological impulse to refuse to accept what was once a terrible diagnosis is diminished. Perhaps soon the only AIDS denialists will be HIV-negative people far removed from the communities most affected by the epidemic, and their cult won't matter at all.
Jeanne Bergman is a veteran AIDS and human rights activist in New York City.
This article was provided by ACRIA and GMHC. It is a part of the publication Achieve. Visit ACRIA's website and GMHC's website to find out more about their activities, publications and services.
Comment by: Mark Milano
Fri., Jan. 16, 2015 at 6:22 pm EST
I'm sad to say that we just lost another HIV denialist. Victor Pond, who used to work at ACRIA, died of AIDS yesterday. I'm so angry.
Comment by: marissa
Tue., Nov. 8, 2011 at 12:31 pm EST
Will the denialists please answer this question.
What about a baby who has HIV antibodies? What if he starts getting sick early in his life? A baby has never drugs or poppers.
Comment by: stanley
Thu., Sep. 2, 2010 at 7:09 am EDT
Thanks all for the education.
The moderator is right to spoof out some outerageous comments but not just on the basis that they disagree with the over 30yrs held notion which notion has yielded say only 5% result (ARVs) because it is true ARVs will not get you out of HIV. I have a few quetions for the writer or any Streamline MED?
I want to agree that the dinialists are wrong and that the mainstreamers are right: Well:
1) How many dinial HIVers have died as compared to non-dinial HIVers?
2) What explains the increasing number of discoddant couples.
3) What was the estimated or projected world number of deaths without the existence of HIV as compared to the projected numbers with the effect of HIV deaths?
4) Is there any evidence that a specific group of HIVers say 100 on HIV Meds and another same size group with HIV but not on HIV Meds but on general health management; that the former were found to be experiencing less deaths?
5) Is there any evidence that convinces me that if I was not positive I was expected to live to age X and that after HIV I have lived to age X?
My questions are basic and lay but I would love and respect the one who gives me an answer.
We have lived long enough trusting the mainstream but have gotten nothing the reason why those leblled dissident or denialist or cult will for now and surprisingly increasingly will offer us solace. We all know the billion dollars involved and the level of corruption and moral decay allover the world that it will take a selfless/near to abnormal research to announce the discovery of a cure or vaccine.
Comment by: Olivia from TheBody.com
Mon., Aug. 30, 2010 at 12:02 pm EDT
@John R.: It's interesting that you used these videos as 'proof that ARVs are toxic.' The fellow in the videos engages in a lucid, self-aware conversation with viewers about his day-to-day experience taking meds, starting at day one; the side effects they entailed; and what he did to cope with them. These videos represent a self-portrait of an empowered HIVer, and the final video update a year and a half later is filled with honest, affirmative commentary on the subject's new-found wellness since starting meds. While I absolutely do not agree that those dubbed 'denialists' in the above article should instead be called 'truth-tellers,' I do agree with John R. that these videos (shot from mid-2006 through late 2008) are worth viewing if you're starting meds! Thanks, John R., for the links.
Comment by: Richard J.
(New York, NY)
Mon., Aug. 30, 2010 at 11:42 am EDT
The questions asked by denialists are neither, they are rhetorical. Answering questions is pointless if the person asking the question refuses to listen to the answer. Both Avert in the UK and NIAID have taken time to address common denialist rhetoric, in both cases denialists find excuses to ignore the answers to their supposed "questions."
"what about testing poz and neg in diff countries"
That's a pretty good example. Ever asked yourself why it is that after 25 years, denialists have not provided a single documented case of this happening? They spent all that money on the film House of Numbers, yet neither Christine Maggiore or Kim Bannon was able to show that they'd traveled to another country and tested negative.
Comment by: Sean
Mon., Aug. 30, 2010 at 10:38 am EDT
Jeanne - in your article you do nothing to combat the questions that deniers ask...your entire artile is just basically saying that deniers arent true...
why dont you dedicate an article to answering the questions that deniers are asking...you clearly know them so i wont list any.
its kinda sad that the orthodoxy cant just answer basic questions that a lot of 'questioners' are asking.
1) kochs postulates, what about testing poz and neg in diff countries, etc. etc.. the valid questions go on and on... you guys do nothing to tackle them -- simply saying nuh-uh..isnt going to have an impact..
Comment by: John R.
Mon., Aug. 30, 2010 at 5:26 am EDT
Why using the word denialist?..when you want to simply be "a truth finder" instead..
A little follow up on what drugs do and thank god I don't have to be the one to say it, just watch the videos.This videos should be shared and used as a living proof that ARV's are toxic.
Could't stop thinking about this men courageous enough to post the effects of taking toxic ARV's meds... Look how well he was on his first day!
First day taking Truvada e Sustiva
Further videos are tre weeks later, 1 year and 2 years later ...
I just wish more people can see the terrible side effects
Comment by: Richard J.
(New York, NY)
Wed., Aug. 25, 2010 at 10:02 pm EDT
David, you can read it on the GMHC website: http://www.gmhc.org/files/editor/file/r_a_spring10.pdf
Comment by: David C.
Wed., Aug. 25, 2010 at 5:11 pm EDT
I tried reading this article but the pop-up windows advertising AIDS drugs were so many that I gave up...
Comment by: Noreen Martin
Fri., Aug. 20, 2010 at 7:55 am EDT
Since I was quoted in this article, I feel obliged to answer. I still hold true to my beliefs that HIV has nothing to do with AIDS, although, we all will acknowledge that it ruins one's life just the same. Since I did have an abnorminate amount of health issues and long before HIV came on the scene, I wanted to know why and since no one else was going to find the answers for me, I set out to do so. Luckily, I found a PA who would work with me. I did some research and told him what tests to order and eliminated some issues such as mycoplasma and HHV6A, which both have been asssociated with AIDS but in my case were negative. However, I did find out that I was positive for XMRV the "mouse" virus, which explained my chronic fatigue and also fibromyalgia and also why the HAART would help with these issues. At times of fatigue, etc. it never had anything to do with HIV. I also tested positive for Rnase-L Dysfunction, which means that I have no natural anti-viral defense in my body, which explains why I had been subjected to so many viruses. Remember, Montagnier, stated that anyone with a healthy immune sytem could elimante HIV within weeks. Mine couldn't elimiante most viruses. Not forgetting, that the experts claim that "CO-FACTORS" are involved with HIV. Unfortunately, not much research is devoted to finding them. Finally, I had high Elastase, which is related to the Rnase-L Dysfunction. So take from this what you may, when it comes to AIDS, one shoe does not fit all, I don't totally buy into the drug theory causing AIDS or anything else. Like cancer, there can be many causes, yet we are to believe that HIV is 100% the cause of AIDS. Time will reveal the truth, to paraphase Ghandhi, If only one man believes in the truth, doesn't change the truth. History has proven this to be true time and time again, and especially in medicine.
Replies to this comment:
Comment by: Tess
Wed., Mar. 23, 2011 at 7:09 pm EDT
I am intrigued by your "beliefs that HIV has nothing to do with AIDS" and your "At times of fatigue, etc. it never had anything to do with HIV." yet you seem so readily willing to accept that your positive test for XMRV, the mouse virus, as that "which explained my chronic fatigue and also fibromyalgia."
So the scientific and medical research and methods used to discovered and defined the existence of, and the health problems related to, the mouse virus are valid and acceptable to you but essentially the same research methodology used for HIV and AIDS is NOT? And, taking HAART improved your health because of its effect on the mouse virus but not HIV? Really?
It doesn't really matter what denialist want to believe about HIV and AIDS. After all, its your health and your life. Just do the rest of us a favor and practice safe sex and body fluid precautions while you wait for time to reveal the truth.
Comment by: Richard J
(New York, NY)
Thu., Aug. 19, 2010 at 12:16 pm EDT
The word "voodoo" is not used by the author of this article. It is quoted three times, once from the title of an article by AIDS denialist Matt Irwin, and twice from a quote by AIDS denialist Celia Farber.
Comment by: T. Vega
(Los Angeles, Ca)
Thu., Aug. 19, 2010 at 2:28 am EDT
it is offensive to those who practice Vodou which is a religion to be grouped with HIV denialists as a cult or to use the term "voodoo" to demonize them. AIDS denialists are wrong in their argument but using Voodoo in your article to argue their position is equally irresponsible.
Comment by: Pariedolius
Sun., Aug. 15, 2010 at 6:46 pm EDT
Outstanding article, and that's from a former denialist.
Comment by: Tim
Sun., Aug. 15, 2010 at 9:31 am EDT
well, people are going to do things we dont like. all this policing what people can do and say is just posturing. i have friends who just don't want to know about the science at all and they pick and choose what advice they take from their doctor. i don't see aids dissidents doing anything different. we all pick and choose. you guys try to control or persuade, maybe so do they. what's the difference? i decide where the line is, not you guys. anyway this guy from toronto just seems like an independant thinker. how's that bad? it's his life. unles you think we're all just stupid sheep.
Comment by: Snout
Fri., Aug. 13, 2010 at 7:02 pm EDT
The health choices you have described sound sensible and entirely consistent with a mainstream view of HIV/AIDS. Avoiding HIV, using a condom, eating well and looking after yourself generally are not exactly radical health choices. Nor is making an informed decision about if and when to use antiretroviral therapy. Your choice to purchase and take micronutrient supplements as a complementary approach to looking after your health is your own, and no-one here would criticise you for this - in fact it would be highly recommended under some circumstances.
However, this has nothing at all do do with HIV/AIDS denialism. HIV/AIDS denialists comprise a semi-organised group or groups who claim that HIV is not the cause of AIDS. Most of them have a variety of other claims, such as that HIV/AIDS is not sexually transmissible, and that antiretroviral therapy is of no value in the treatment of the disease. They falsely claim that HIV testing is useless and harmful. Some HIV/AIDS denialists campaign actively against proven measures to prevent mother to child transmission of HIV - with horrible and tragic results. Many of them try to claim that HIV does not even exist.
You can't defend the ideology of HIV/AIDS denialism by pretending it is some kind of health freedom movement.
Furthermore, HIV/AIDS denialists are involved in very actively promoting these beliefs to others who can be harmed by them. They specifically target the most vulnerable. When they are successful they do not promote autonomy and informed decision making - they cripple it.
And that's what all cults do, while pretending to do the opposite. It's the very definition of a cult.
Comment by: Carl
Fri., Aug. 13, 2010 at 11:44 am EDT
Bren said: "You want people to question that HIV is the sole cause of catastrophic CD4 depletion"
Actually Bren, unlike you apparently, I don't pretend to know what questions OTHER people should ask. Yes, I would encourage each of us not to be intimidated by the science, but I also recognize that we must each decide for ourselves what our level of interest is. I maintain that we do, in fact, have a right to come to different conclusions than people around us. I also maintain that it's perfectly within our rights to take science at face value, and accept broadly-held conclusions. Either way, it remains a matter of choice.
My reading of dissenting literature has led me to:
Always wear a condom; Avoid HIV or whatever it is; Eat a diet high in fresh, unprocessed foods; Get tested regularly for Syphilis; avoid recreational drugs; Avoid exposure to too many different semens anally – again, always insist on a condom.
After I tested positive, I chose to: Continue same measures as above; Consider carefully the risks and benefits of some of the newer treatments and make an informed choice about when to start HAART; began taking vitamin and mineral supplementation; began a regimen of antioxidents; began taking extra care to get enough sleep; took measures to reduce stress in my life; began fighting actively for patient rights.
I admit to having been very blunt about the risks of high dosage AZT, but I have never counseled anyone away from HAART. I always encourage my friends to take a poz diagnosis VERY seriously, and to have an active relationship with a trusted MD.
So, if this is Denial, then so be it.
However, the idea that I should censor myself because YOU feel you know which questions are the right ones for the rest of us is insulting to everyone with this diagnosis.
Why respond here? - Because the article takes a real phenomenon - Denial - and applies it with a broad brush. Those of us who question HIV theory are not, in fact, so easily defined.
Comment by: Peter
Fri., Aug. 13, 2010 at 7:48 am EDT
"The irony of saying you're standing up for patient rights while trying to undermine the very science that saves their lives is breathtaking."
Bren, I take my hat off to you. The above action, performed by almost all AIDS-denialists IS, indeed, as you say, "breathtaking". And isn't it extraordinary that their mindset does not allow them to see it as such.
And, Bren, reading all your posts in this thread has been a real pleasure. It's little wonder that in the face of your sustained logical responses Carl sought to quit the discussion by offering you the "deal" of "simply [having] to agree to disagree and save the moderators a whole lot of time".
In my experience AIDS-denialists wish above all to continue to live with their delusion and their fantasy, and so when they meet sustained rational disagreement they either quit and flee the discussion or they become intensely abusive. They cannot sustain rational debate because their premises are, of course, flawed and appear so, even to themselves.
Comment by: Bren
Thu., Aug. 12, 2010 at 8:05 pm EDT
Carl, you're making it sound like I don’t know there are other aspects of disease beyond the infecting pathogen. Nothing I’ve previously said would refute anything you've said about patients being empowered, seeking information, being critical and looking after themselves.
All those scenarios you’ve just presented are valid. But they are to do with the social aspects of managing disease. We all need support from our doctors, patient advocacy groups, and our families and friends – for both mental and physical reasons (including working out what to do about medications) – whether it’s HIV related or standard health. But why point those things out in the thread to this particular article? They’re well-known aspects of managing HIV. Why here?
I think the answer is that you’re trying to sound reasonable and concerned as a cover for a less altruistic agenda. You want people to question that HIV is the sole cause of catastrophic CD4 depletion. Of course, you have a right to do so (you even probably believe your premise). And I'm not going to argue the science with you - the science is valid according to all standard scientific tests (a point I constantly make and you consistently ignore). But I have the right to point out to you the potential damage you might be doing.
The irony of saying you’re standing up for patient rights while trying to undermine the very science that saves their lives is breathtaking.
“HIV brings with it enough … uncertainty”. See? Irony. You point out there’s uncertainty while simultaneously contributing to uncertainty without an ounce of authority for doing so.
Comment by: Carl
Thu., Aug. 12, 2010 at 8:36 am EDT
Bren, I also agree that some people want to be persuaded. But that too, goes both ways. Some people want to be persuaded that HAART will make them non-infectious. They read that they can have a low viral load, and ignoring the clarifications of their MD about it, go about barebacking like madmen, feeling invicible. They believe what they want to believe. OR Poz guyz taking the view that because HIV is the culprit, and taking HAART deals with it, they don't have to do anything else for their health, like good nutrition, or getting enough sleep. All of which flies in the face of commonly accepted facts about infection and re-infection, and immune health. Should we then, not talk publicly about how HAART lowers Viral Load? Because we're afraid people will take that notion and run with it? What about people who become obsessed with their numbers, going from test to test in a state of high anxiety because they have an unhealthy relationship to it all? Should we not talk about how Low Viral load can be correlated with renewed health to protect such people from themselves? I think not.
It's not a perfect analogy, but my point is that efforts to control what people do with information and what information may be made public will always fail. People take information and do what they're going to do, and we can't control that.
I've watched friends who accept the science at face value make decisions I don't think are in their own best interest. I've also watched dissident friends do the same.
Welcome to life. It ain't always pretty. But censorship of ideas we don't agree with will never solve anything.
Comment by: Carl
Wed., Aug. 11, 2010 at 10:03 pm EDT
Well Bren, I will take you at your word when you say you are concerned about patients. I believe you. However, I would argue it is misplaced. In the end there is nothing any of us can do to control the choices people make. Nor should there be.
I agree that at some point we all have to trust, but we each decide where that line is - For ourselves. No one else has the right to tell us how much or how little we may learn, what we choose to do with the information, or which areas of science we may question.
However, HIV brings with it enough potential shame, isolation and uncertainty without people wagging their fingers at me because I dare to decide for myself what I make of it all. I have absolutely no tolerance for it.
Sorry, I just don't.
Comment by: Bren
Wed., Aug. 11, 2010 at 7:53 pm EDT
Tim, you make a good point. There's a very fine line between being willfully misguided and genuinely believing that you're right in the face of overwhelming evidence (e.g. PhD astrophysicists who believe the universe is 6,000 years old…yes, at least one exists!).
Carl may not be immoral but his action is, because he should know better (unless he’s like the aforementioned astrophysicist). My accusation was born from a reaction to someone who is obviously informed, probably well-meaning, but who reacts like a conspiracy theorist to a specific area of science that concerns him personally, yet doesn’t see the contradiction in not doing the same for any other area of science. (As I suggested earlier, no amount of reading on a topic makes one a scientist). Carl, you can question the science of bridges and car brakes etc as much as you like. But if you’re going to, then why stop there? Why not go on to nuclear physics? Or the laws of mechanics? Or psychology? At some point, no matter how much reading we do, we, the public, have to trust. Our power comes if we demand results. HIV science gave us results in 1996. We can complain about the side-effects of the drugs and demand improvement, but we can’t complain about the fundamental science because it’s already met the criteria of a valid theory.
My reaction is born out of fear for those who aren’t as informed, and are already doubtful. Those who could be persuaded by what they read, because they *want* to be persuaded. They don’t want to believe they have a life-threatening virus and so they will look for any way to get out of it. And Carl offers them that way out. He argues logically well (it’s just his premise, and some facts, that are faulty) and he is therefore convincing. It is possible he could tip some people into full-on denialism.
Comment by: Carl
Wed., Aug. 11, 2010 at 6:24 pm EDT
If I am to be labeled immoral for publicly questioning HIV science, then I should also really be called immoral for publicly questioning the science of bridge construction, or the science behind a particular kind of vehicle brake, or the science behind the nutritional recommendations of my government, all of which have the potential to affect my health, for better or worse. And all of which are paid for, wholly, or in part, by my tax dollars.
In thinking about it, I would actually like to see society go much further than simply allowing me the freedom to ask questions publicly: I would encourage hard-hitting consumer reports on all science that affects public safety, or health policy. We are, after all, paying money for the products science is bequeathing us. All of these products are purchased by us. Just like a car or a house, or a package holiday. We are, in fact, consumers of medical technology and treatments. WE PAY with our hard-earned dollars. As such, we have the right to scrutinize what we are buying. We have the right to look at it all very closely indeed. Medical consumer reports could ask: How solid is the science behind the product or procedure? Were there conflicts of interest in its development? Are we tax payers getting the best bang for our buck? Are there data that contradict or undermine the science? What alternatives are being looked at?
Medical Consumer Reporting could hold Public Debates featuring opposing ideas, just like the political debates so many of us use to make an informed choice about our democracies. After all, all this science actually affects our democracies in terms of policy, and tax allocation.
Then we consumers of medicine could finally make a truly informed choice about our treatments and procedures.
Here's a thought: When Scientists start giving their ideas, and the medicines and procedures their research generates, away to the world and the public for free, I will give up my right to question them or their work.
Comment by: Carl
Wed., Aug. 11, 2010 at 11:02 am EDT
Exactly - I'm glad you get it.
As much as I have read, I don't pretend to know what's right for anyone else. Frankly, for what it's worth, whenever freinds have come to me asking for advice about treatment, I always encouraged them to do whatever feels right for them and strongly encouraged them to maintain a good relationship with a health provider.
Yes, I think AIDS is more complicated than HIV has explained, but that's my opinion. I don't pretend to be a world authority on anything other than me, my choices and my relationship to - and understanding of - HIV science.
Yes there are cultish tendencies among some AIDS dissidents, but there are also cultish tendencies among defenders of HIV theory: The idea that we must submit, uncritically, to medical and scientific authority is absolutely one of the most cultish concepts imaginable.
Maybe it's a Canadian thing, but here we respect individual autonomy and the right to medical self-determination, informed choice and consent. I believe it is commonly known as "Freedom".
Comment by: Tim
Wed., Aug. 11, 2010 at 7:18 am EDT
oh and one more thing, do you guys, bren and richard j, actually really think its immoral share certain opinions? who are you to tell me what to think or what to read? what - you think we're all so bloody dumb we'd make health decisions about hiv based on the online comments of some guy in toronto we've never met? give us some credit. do you really view people with that much contempt? i don't agree what everything he's saying, but there's nothing imorral about sharing opinions. c'mon - i read alot too and ask my doctor lot's of questions. nobody tells me what to think or what to do!
Comment by: Tim
Wed., Aug. 11, 2010 at 6:05 am EDT
I don't know... my dr says that all human diseases are basically multifactorial...we're not petri dishes. Lots of things influence outcomes so i'm with carl on that one.
Comment by: Carl
Tue., Aug. 10, 2010 at 9:08 pm EDT
I appreciate the passion and candour shown here, but I think we will simply have to agree to disagree and save the moderators a whole lot of time.
Comment by: Bren
Tue., Aug. 10, 2010 at 7:34 pm EDT
"anyone can become [a scientist], and many of the greatest discoveries have been made by lay-scientist." That might have been true in 1850. The breadth and depth of knowledge is now so vast that even within a single field of research there are specialisations that separate one scientist's knowledge from another. And that's true even for HIV science. E.g. virologists know things that molecular chemists and immunologists don't.
I like to think I am an empowered patient, but there's no way on earth I'd claim to be a lay-HIV scientist.
In making this assertion you seem to misapprehend the scientific method. You may have been reading about HIV since 1992, but that does *not* make you a scientist. (Richard has already pointed out some of your fallacies). Discoveries and knowledge are only attained by the application of a rigorous process that demands hard work and dedication on a full-time basis. And even then it's possible to be misled. But the real state of affairs eventually reveals itself. In HIV science, that happened on two milestone occasions: 1) when the cause of AIDS was found to be the depletion of CD4 cells and 2) when the virus was identified that was causing the depletion.
The discovery was predictive, and ultimately completely validated soon after 1996 when doctors' patients stopped dying by the hundreds.
That the medicine to control the virus still needs improvement, doesn't invalidate the science. If a scientist came up to you tomorrow and offered you a 1 month course of medication that had been shown to completely and permanently eradicate HIV from your body, I know you would not question the science (side effects or not). You would take the medication and to hang with thoughts of "co-factors".
Patients should be empowered, of course. But your dissembling worm tongue is confusing, not empowering.
Comment by: Richard J.
(New York, NY)
Tue., Aug. 10, 2010 at 1:24 pm EDT
"Richard, statements like: “Carl is not familiar with the current data, which shows unequivocally that HIV is the sole cause of AIDS.” Fly in the face of the groundbreaking research into co-factors by numerous HIV researchers, not the least of whom is HIV discoverer Luc Montagnier himself, who has stated unequivocally that: “I think we should put the same weight now on the co-factors as we have on HIV.""
Not true, none of the co-factor research contradicts that HIV is the sole cause of AIDS and neither does the quote from Montagnier. It would be enlightening if you cited the "groundbreaking research" that led to this misunderstanding.
Carl also wrote:
"the most current and up-to-date view of AIDS is that a whole host of other factors, in combination with HIV, determine if and when a patient will develop AIDS."
There is no evidence that addressing any factor other than HIV can determine "if" a person develops AIDS. There are factors that affect the speed at which HIV causes an attrition of the immune system. One of the most significant is age, because levels of naive immune cells decline as people get older (the thymus which produces naive T cells shrinks) so the immune activation caused by HIV depletes naive cells faster in older people. Suppression of HIV does not just mitigate the immune dysregulation caused by the virus, it reverses it - naive cell numbers increase, memory immune responses to opportunistic pathogens increase in magnitude and function, the T cell repertoire becomes more diverse. The literature showing that people can safely stop opportunistic infection prophylaxis after immune reconstitution is voluminous. All of this results from addressing one thing: HIV.
The person who received the CCR5-negative bone marrow transplant who is now free of detectable HIV and off antiretroviral treatment for 3+ years has seen their CD4 count increase into the normal range, the highest it has been since their original diagnosis.
Comment by: Carl
Tue., Aug. 10, 2010 at 1:00 pm EDT
Bren said: "Scientists should be questioning the science. Not the untrained who think they know better."
Well, an informed patient is an empowered one, in my opinion, and in the opinion of my HIV specialist, and while some of us choose to let scientists and doctors do the thinking for us, some of us find it better to be educated about the science. Contrary to your assertion, science IS open to anyone with enough time and dedication to learn. Indeed, anyone can become one, and many of the greatest discoveries have been made by lay-scientists. HIV science is no different: it's not a club for the anointed few. My HIV specialist often jokes that I know more about AIDS than she does. I don't think that's true, but I do have more time to devote to reading than she does, and I am an avid reader. I've been studying AIDS science since 1992.
You may not think Duesberg is a scientist and you may disagree with his position on AIDS causation - I certainly do - but his continuing work on aneuploidy in cancer is cutting edge and widely acknowledged as such, so you are right that I think that he is, indeed, still a scientist, albeit one with opinions I don't share. (In my view recreational drug use does not explain AIDS.)
I don't agree that sharing my choices and views is immoral. You and I will have to agree to disagree on that point.
If you talk to any disease specialist, you will find that the patients with the most knowledge often do better, because they understand a great deal about what is going on and aren't afraid to be active participants, and ask critical questions. HIV science and treatment are no different. We all have the right to ask critical questions of the science behind our healthcare. You may well be happy being a vessel for received wisdom, but encouraging others to accept, uncritically, the science behind their healthcare is morally questionable indeed.
Comment by: Carl
Tue., Aug. 10, 2010 at 6:13 am EDT
Richard, statements like: “Carl is not familiar with the current data, which shows unequivocally that HIV is the sole cause of AIDS.” Fly in the face of the groundbreaking research into co-factors by numerous HIV researchers, not the least of whom is HIV discoverer Luc Montagnier himself, who has stated unequivocally that: “I think we should put the same weight now on the co-factors as we have on HIV.” With all due respect, I think he knows more about the current state of HIV science than all of us here put together.
Clearly, behaviour, genes, other infections and pre-existing conditions dramatically affect how HIV behaves in each individual. So, let me assure you that I am quite familiar with the current data, and may I humbly suggest that when you claim that my thoughts are “not based on an accurate understanding of the science”, you might want to look in the mirror.
Science used to assert simply that smoking “caused cancer”. Period. Now we know a whole host of other factors decide if and when exposure to cigarette smoke will result in cancer. Similarly, the most current and up-to-date view of AIDS is that a whole host of other factors, in combination with HIV, determine if and when a patient will develop AIDS.
Comment by: Bren
Mon., Aug. 9, 2010 at 9:36 pm EDT
Oh, Carl, one more thing. I predict you will point out to me that Duesberg et al are scientists. They're not. They long ago devolved their capacity to think critically. No one can be truly objective, but their personal bias and beliefs have severely crippled any objective powers they may once have had.
When it comes to thousands of scientists vs a handful, I will believe the majority - particularly when the efforts of those thousands result in the sudden absence of friends dying around me.
Comment by: Bren
Mon., Aug. 9, 2010 at 9:20 pm EDT
Carl, to correct your interpretation of my comment, I said *you're* being immoral, not those weighing up treatment options. So, you admit that drugs mitigate the affect of HIV. Sounds good. But the content of your previous comments belies your intent. When you say that there is "no one approach”, that "dissidents have a point", and that “AIDS is more complex than infection with one kind of retrovirus” you are encouraging denialism - not healthy, scientific scepticism. Science seeks to understand and solve problems by following certain tests and rules. As I said before, HIV science is no different from any other science. And yet, you insist on asserting that it somehow *is* different. There’s no “Cult of Consensus”. There’s a paradigm built around a theory that has the predictive power necessary for an acceptable theory.
Of course, patients need to be at the centre of their care. They need to tell their physician if they're feeling bad from the drugs, and encourage monitoring of key measurements of the possible impact of the drug. The patient is the most knowledgeable about how they feel. But they do not have the knowledge to question the science. Something you are immorally encouraging. Scientists should be questioning the science. Not the untrained who think they know better.
"People have died under more modern treatment because their immune systems were too compromised to recover after not getting treatment early enough”, this seems arrogant, and unscientific to me..." I don't understand what you mean. It's something I have personally observed and, in addition, have been told stories from hospitals of those presenting with advanced AIDS who never got tested before.
"And please don't pretend to know me. You don't." I'm not pretending to know you. I'm simply reacting to the dangerous ideas you present to the world.
Comment by: Richard J.
(New York, NY)
Mon., Aug. 9, 2010 at 5:19 pm EDT
"We are thoughtful, open to new data" (not sure exactly who he meant by "we").
Carl also wrote:
"I think the evidence shows that AIDS is more complicated that HIV alone can explain"
"I have no investment in whether AIDS turns out to have single or multiple causes."
I don't believe Carl is "open to new data" for the simple reason that the latter two statements make it clear that Carl is not familiar with the current data, which shows unequivocally that HIV is the sole cause of AIDS. Whatever thoughts on the subject Carl is offering to his friends (or in his comments here) are thus not based on an accurate understanding of the science.
Comment by: Carl
Mon., Aug. 9, 2010 at 2:31 pm EDT
Bren, with all due respect, my point is that choices around how to deal with medical issues of any kind will never be a simple as: “follow your doctors advice” or: “take your meds”. A Doctors job is not to dictate a course of action nor is it a patients job to follow obediently. Doctors rightly suggest the best course of action, according to the best information they have, while patients wisely weigh the risks and benefits against their own subjective feelings and needs, and decide how best to proceed - for themselves. Personal choices never fit neatly into a scientific box. They just don’t. One size does not fit all. Sorry. It just doesn't.
For example, one of my friends is a recovering drug addict, and taking pills is a huge trigger for his addiction. He listened to his HIV specialists advice, and made a choice to postpone treatments because of his relationship to taking pills. Is he immoral because he made a public, thoughtful and informed choice to defer treatment? I think not. Some of my friends have such a bad go with side-effects, their quality of life is too compromised and they opt out. Are they immoral because they made such a choice? I think not. “Take your pills”? - It’s just never that simple.
I will decide what my relationship to HIV treatments are. No you. Not my Doctor. I am responsible for my own health. Not you. Not my Doctor.
As far as your statement: “People have died under more modern treatment because their immune systems were too compromised to recover after not getting treatment early enough”, this seems arrogant, and unscientific to me, and suggests that you have no friends who’ve been treated early on after their diagnosis, and died anyway. I have. These drugs do not cure AIDS, they can mitigate the effects of it. Period. But they come with a price. So does doing nothing. And it is up to each of us to decide - for ourselves - if and when we choose act on our Doctors advice.
And please don't pretend to know me. You don't.
Comment by: Bren
Sun., Aug. 8, 2010 at 8:23 pm EDT
Carl, your reasonable tone muffles an insidious agenda. The person whom you quote was simply exhorting those who need to, but are hesitating, to follow their doctor’s advice. There is not just “some truth” in HIV science. It accurately predicts immune system degradation from an identified pathogen.
That there is a variety of responses to the virus does not indicate ambiguity in understanding. It simply conforms with our knowledge that biological organisms are complex and varied.
That early attempts at treatment was a contributor to deaths is not denied and is understandable considering the challenges this highly mutable and flexible virus poses. We now know much more about this virus and others. People have died under more modern treatment because their immune systems were too compromised to recover after not getting treatment early enough.
You are not a “dissident”, you are a “denier” because, when you say that there is “no one approach” you are falsely asserting there is an alternative to HIV science that can explain, and treat, the syndrome known as AIDS. To imply that a CD4 count of 350 doesn’t necessarily mean “take your meds”, is to immediately place yourself outside of science. Do that if you wish. But consider the morality of doing so publicly.
Comment by: Carl
Sun., Aug. 8, 2010 at 11:49 am EDT
Statements like: "If you're questioning at all, I have one word of advice: take your meds!" is every bit as cultish as some of the more extreme messages from AIDS dissidents. Telling everyone to get on the treatment bandwagon is just as irresponsible as telling everyone AIDS drugs never have benefits.
Yes, the newer drugs have helped some of my friends, but they have harmed others. There is no one approach that works for all HIV positive people. Read. Be skeptical always. Make choices that feel right for you.
The idea that a list of dead dissidents has any bearing on how we should view dissenting ideas is absurd. The list of people who died while being treated for HIV is a whole hell of a lot longer than any list of dead dissidents, and I don't see anyone here using their deaths as justification for throwing ALL HIV science in the garbage. AIDS is the problem people, NOT the choices we make trying to deal with it.
Some of my friends follow their HIV specialists suggestions exactly and die of drug toxicities or side effects. Some of my friends go into complete avoidance about their health and die doing nothing about it. Some accept HIV theory, and some don't. Some live long taking nothing and some live long taking HIV drugs. And everything in-between. So if anyone here really thinks they know what's right for everyone, I suggest you look a little deeper and find some humility.
There is some truth in what HIV science is telling us about the state of our immune systems. There is also some truth in what dissidents say as well. And everything in-between. Our job is to find the path the works for us, and to respect the choices of others. Not to judge them. One size DOES NOT fit all. 'Take your meds' indeed. What is this, Nursery School?
Comment by: Dominic
Sat., Aug. 7, 2010 at 6:13 am EDT
Jeanne Bergman, well done! Your article is comprehensive and extremely well written. Over the last ten years I have met AIDS denialists online on a number of occasions and have been deeply hurt by their savagery in argument, their complete refusal to abide by the rules of rational discussion. They have all struck me as being rather like hell-fire cultists, aflame with "the truth", ready to kill and die for it, and certainly ready to insult and refute. I have bookmarked your article for future skirmishes with these deluded people. I wonder, please, if you could post another article soon simply featuring a number of clearly labelled and explained photographs of the HIV virus, and perhaps also, if possible, photographs of ARVs in action. These too would help people when debating with AIDS-denialists. So often have they thrown out the line that the virus "has never even been photographed!" Once again, thank you, and well done!
Comment by: julianna k.
(atlantic ocean west side)
Fri., Aug. 6, 2010 at 11:32 am EDT
within the conventional understandings of hiv and aids there are as many dissenters from my experience and they are dissenting because they do not trust the information they are given on a whole range of issues. they are not happy with medical are , follow up with the attention to detail - toxicity is a problem , it is why people fail meds, fast and straight. toxicity that causes as many of the aids defining conditions it is supposed to protect against. in fact we dont even make the claim that they will protect . so what do they do ? im reading Heinrich Kremers book The Silent Revolution on Cancer and AIDS and I really dont think I have the same immunodeficiency as a person who has consumed repeatedly , hard drugs , nitrates, antibiotics , had multiple sexual partners and multiple treatments for infections or preventatives for same. Nor do I believe all people test the same . i dont think the dissidents use the best language sometimes and i would not demonise mainstream hiv aids movements - which is what they were from the onset carried along like a great tidal wave from the era of AZT . maybe if you are used to popping all kinds of antibiotics pills and recreational drugs you dont find the idea of more so bad but i dont think women and children feel the same. sorry. i dont think they are the ONLY route for immunodeficiency and to consider them so is dictatorial , and in blind disregard for the many many other systems of medicine that have been part of human intelligence for far longer than pharmaceuticals ever were. But so many people abuse medicine , so little education. we know already that misuse of antibiotics has led to a situation where west world hospitals have some of the worst outbreaks of MRSA . We know they are over used . there is enough data outside of AIDS literature to support many of the concerns that dissident s have .as someone with a royal headache from indifferent patient engagement and over simplified nonsense where i live , i sympathise .
Comment by: John-Manuel Andriote
Thu., Aug. 5, 2010 at 11:17 pm EDT
Very interesting article. I just interviewed Dr. Joe Sonnabend last week for a revised edition of my AIDS history Victory Deferred. I'm sorry to say I had not interviewed him in the mid-90s when I was writing the original book.
Everything Dr. Sonnabend said made complete sense. His "multifactorial" understanding of health and illness are taken directly from the Greeks, who believed that harmony was the mark of good health and disharmony--upsetting balances--would lead to, and marked, illness. Sonnabend was already onto one of the most important things that others missed at the start of the epidemic: gay men (or anyone) practicing receptive anal sex need to protect themselves against infection by requiring their partner to use a condom. Whether it was CMV, an early suspected culprit before HIV was described in 1984, or one of the other infectious agents suspected of causing AIDS--condoms would be, still are, very effective in preventing transmission. Beyond that, Sonnabend's focus was to keep men as healthy and disease-free as possible figuring, correctly, that a healthy immune system would be necessary to fight whatever was causing the new disease.
Dr. Sonnabend is still correct--as the ancient Greeks were--that overall health, nutrition and exercise, all factor into making a healthy human being. He does, however, speak strongly against the push to get everyone with HIV onto HAART as a way of preventing transmission of the virus to others. As he put it, it is considered unethical to treat someone (at all, let alone with expensive, toxic medications that must be taken the rest of one's life) for the benefit (i.e., protection) of someone else rather than with the individual's own health benefit as the foremost consideration.
I was expecting to speak with an HIV denialist. Dr. Sonnabend is not that. He is a skeptic--with good reason--of the "orthodoxy" (if you will) that relies too much on individual doctors' opinions and not enough on evidence.
Comment by: Bren
Thu., Aug. 5, 2010 at 7:08 pm EDT
In her penultimate paragraph Bergman mentions what is to me the most significant fact about the denialist movement. That is that the movement has different theories and schools (note the plurals). Science can only work if its practitioners have a paradigm to work within. HIV science has a paradigm and the theory of HIV passes all the tests (including medicine-specific tests) of what is a valid theory. The paradigm came about in the same manner as other paradigms. There is nothing to distinguish HIV science from any other type of science.
Of course, controversies occur like they do in all other fields (e.g. the science of anthropogenic global warming to name an extreme example). But, importantly, the controversies occur within the paradigm, not outside. An example of this in the HIV field is Dr Sonnabend who seems to have been a strong skeptic, but still a scientist, still working within the paradigm. Outside of HIV science, a striking example is the discovery that a bacterium causes stomach ulcers. Many specialists refused to accept the evidence, but they argued on scientific grounds and eventually gave way under a mountain of evidence.
And that's the difference with the denialists. They don't have a paradigm they're working within, and they certainly don't have a theory to link them together. For anyone who wonders if the denialists have a point, consider this diversity and lack of consensus most seriously of all. Would you trust an advocate in any other field who did not represent a consensus view or did not seem to have reached conclusions based on the accumulation of linking evidence?
Comment by: Raven Anthony
Thu., Aug. 5, 2010 at 3:55 pm EDT
As an ex "questioner of dominant AIDS theory", and one-time patient of Matt Irwin (can I get a refund?) - I appreciate this article and think we can't talk about this issue enough, if only to save the poor folks who stray into the fold of AIDS dissident thought. This ideology endangers smart people who ask questions. I was one of them. But before I ever took meds, my health declined even though I "did everything right", and when I was suckered into stopping meds once I had started, my health again declined. It was very clear to me that meds saved my life, and continue to do so, 20 years later. When Christine's daughter died, the rationalizations were believable. When Christine died, they were not. The site that most influenced my decision to feel good about taking meds was this one, which identifies AIDS dissidents who have passed away: http://www.aidstruth.org/denialism/dead_denialists. Death is a truth that cannot be denied. If you're questioning at all, I have one word of advice: take your meds!
Peace to all.
Comment by: Richard J.
(New York, NY)
Wed., Aug. 4, 2010 at 10:23 am EDT
A main component of the immune dysregulation caused by HIV is the accumulation of dysfunctional HIV-specific T cell responses, such that by the time someone has progressed to immune deficiency more than 20% of their CD8 T cells are HIV-specific. The only other virus that comes close to inducing CD8 T cell expansions of this magnitude is CMV. Immune activation caused by HIV depletes naive CD8 T cells as well as naive CD4 T cells and B cells. All arms of the adaptive immune system mount a response to HIV, meaning that the accuracy of antibody testing is confirmed by HIV-specific CD4 and CD8 T cells targeting protein epitopes that are unique to the virus. And not just one epitope, which could conceivably cross-react, but multiple epitopes encoded by all nine HIV genes (Gag, Pol, Env, Nef, Tat, Rev, Vif, Vpr, Vpu). There's no tautology involved in saying the HIV is central to the immune deficiency named AIDS, the immune system itself clearly shows that it is. Other forms of immune deficiency do not involve the accumulation of HIV-specific T cell responses.
People with a genetic propensity to develop highly functional HIV-specific CD8 T cell responses have a greatly increased likelihood of becoming non-progressors - google "HLA B*57" and HIV and you'll see this is a consistent finding across all populations.The immunological changes caused by HIV are also exactly the same everywhere, in every infected person from every demographic: persistent immune activation, naive cell depletion, memory cell exhaustion, dysfunction and senescence and constriction of the T cell repertoire (meaning that the T cell pool becomes dominated by a limited number of responses, reducing the ability of the immune system to respond to a diverse array of pathogens). When HIV replication is suppressed, all these changes go into reverse although naive T cell production depends on the thymus so these cells come back only slowly in adults.
Comment by: David P aka bigolpoofter
(College Park, MD)
Wed., Aug. 4, 2010 at 9:38 am EDT
The denialist mindset and the ensuing rounds of recriminations that beset any discussion of these gnostics is my most compelling reason for switching the conversation around the virus and its human impacts from "AIDS" to "HIV disease." After all, the definition of AIDS was politically driven, not clinical. Feds gave us criteria for tagging those in greatest need of care, and we've carried AIDS forward in the lexicon, even as we often claim that most American diagnosed today will never develop AIDS. They will however, barring great breakthroughs, never be cured of HIV disease.
Still, most of us living with HIV have gone through some measure of denial, at least about health status. My seroconversion illness came in late 1982 through 1983, and I pushed the likeness of my condition to that of others into the back of my mind for over 15 years. Only through the genetic luck was I successful with denial as a treatment option.
Not developing AIDS following HIV infection and without treatment is the exception, not the rule. Clinging to these outliers as "proof" that HIV does not cause AIDS implies some divine knowledge, hidden or seen, which denialists might access, an article of faith, as with their gnostic forerunners in many religion. That humans are complex beings with many drivers for crappy immune systems, many of their own making, isn't reason to herald denialists, either: it's a face of our evolution, and the evidence is a product of scientific inquiry, not gnostic faith. Denialism, like a grizzly roadside wreck, diverts our attention from where it should be. Keep your eyes on the road ahead towards a cure, not off in ditch of junk science!
Comment by: Carl
Tue., Aug. 3, 2010 at 10:54 am EDT
Snout: I am quite clear on the difference between Skepticism and Denial, and have encountered both in my years reading about these issues. However, you write, “No credible scientist disputes that HIV is central to this dysregulation”
Given that, in order to appear credible on the issue of AIDS causation in scientific and media circles, HIV must always be central, said credibility has become a tautology itself. If we, at the stoke of a pen, label all scientists who differ on that central issue ‘denialists’, or ‘not credible’, what possible meaning does the word ‘credibility’ have anymore?
I agree that denial exists and have seen it myself, it just doesn’t describe the majority of people I know who argue that AIDS is more complex than infection with one kind of retrovirus. How can there be subtlety in arguments about AIDS causation when the existence of a broad consensus is used to demean those who don’t agree with it? That phenomena strikes me as being every bit as cultish as the fervent chanting of some AIDS dissidents… it’s “The Cult of Consensus”.
Science should not be a popularity contest. Personally, I have no investment in whether AIDS turns out to have single or multiple causes. My interest is in a cure. Period. If scientists with novel ideas come to the table they should be welcomed. HIV isn’t sacred; the lives of AIDS patients are. And we need all the help we can get.
Comment by: Jason E.
Mon., Aug. 2, 2010 at 8:51 pm EDT
Quoth Jeanne Bergman: "More is known about HIV than about any other virus." More than measles, mumps and rubella? Then where's a vaccine?
Dr. David Ho made the same claim in a 1993 interview with Charlie Rose. In 2006, the Journal of the American Medical Association admitted that the cause of 90% of immune cell depletion in those with "HIV" remains a mystery.
Comment by: Snout
Mon., Aug. 2, 2010 at 7:50 am EDT
This is an insightful and well-argued article.
The cognitive distortions, factual misrepresentations, rhetorical strategies and techniques of propagation used by many HIV/AIDS "dissidents" are well characterised, and are strikingly similar to those used by cults. If we fail to recognise this and treat such self described "dissident" arguments as if they were bona fide skeptical positions by honest brokers in scientific debate then we miss the point of the phenomenon.
@Carl: Skepticism means the careful weighing of evidence before accepting a scientific or other proposition. Denialism means the deployment of rhetorical strategies to advance an ideological position. The fact that both can refer to minority positions does not mean they are the same. Understanding the difference is vital.
HIV/AIDS denialism refers to the specific ideological position that HIV is not the cause of AIDS. Conflating this with skeptical or other "dissident" positions is a rhetorical strategy designed to obscure and confuse its intent.
No one disputes that the mechanisms that result in in immune dysregulation in HIV/AIDS are complex and incompletely understood. No credible scientist disputes that HIV is central to this dysregulation, including Montagnier.
@Kent: there is nothing wrong with treating the claims, motivations and behaviour of pharmaceutical companies with healthy skepticism (see above). In fact, I reckon it's essential to keep them honest.
Antibody tests are used for HIV because they are often more practicable and have higher sensitivity and specificity in diagnostic settings than most available virus tests. There is nothing unusual about HIV in this respect compared to many other viruses.
Antiviral drugs are used to treat HIV/AIDS because so far they are the most effective treatment we have for this viral disease. A therapeutic vaccine would be great, and an effective preventative vaccine would be even better. Unfortunately, we don't have either yet.
Comment by: Jonathan B.
(Kansas City MO)
Sun., Aug. 1, 2010 at 7:04 pm EDT
When Bergman wrote: "There are now increasingly effective and tolerable antiretroviral drugs (ARVs) for its treatment,"did she know her words would be sandwiched between scrolling ads extolling the numerous dangerous and even lethal effects of ARV drugs?
Comment by: Myles Helfand
Sun., Aug. 1, 2010 at 2:06 pm EDT
@Neil: They're here, we're just not approving them. :) For us, moderating comments on an article like this is a difficult balance: We want to encourage thoughtful discussion, but we also don't want this to become yet another posting ground for the same, tired old regurgitation of long-invalidated arguments that insist HIV does not cause AIDS; assert that HIV medications do more harm than good; or claim there is no such thing as HIV at all. (This is also discussed in our official comment policy, which is linked from the comment section of every page on our site that allows comments.)
So we're deleting all of those pointless, counterproductive comments. But we are allowing comments from within the dissident/denialist community (or those who are skeptical but don't consider themselves part of that group) that portray a cooler head and a more mature point of view. Kent's comment, for instance, was approved largely because it narrowly met the criteria I just mentioned (though it was a close call owing to his/her "test is goofy" statement, which ignores the fact that a great number of infections are reliably spotted using antibody tests).
I should note, btw, that this is the only time in this comment thread that a member of our team will get involved in this conversation. It just felt appropriate to take a minute to clarify how we're thinking about comments for this particular article.
Comment by: Kent Z
Sun., Aug. 1, 2010 at 12:13 pm EDT
This is a poor article for several reasons. Demonizing one's "opponents" always strikes me as a huge red flag. Historically, Blacks have been demonized for being black; gays for being gay; and liberals for being liberal.
Does anyone here remember Joe McCarthy?
AIDS has become a big industry, where pharmaceutical companies make multi-billions in profits. They care way more about selling drugs, then curing AIDS patients.
Also, the test is goofy. Why are we looking for antibodies, not the actual virus? Why are we taking Antivirals, rather than a vaccine?
We need to discard our dogmatic approach to AIDS and embrace people who challenge our ideas. Dissent is a good thing. We should have dissented much more vigorously when Bush invaded Iraq; likewise, we should have dissented much more vigorously when the FDA pushed AZT on us for 10 years. People should be free to choose, whether or not to take the drugs. If they work for you, great. But, sometimes they don't work.
Comment by: Neil
Sat., Jul. 31, 2010 at 5:09 pm EDT
Amazingly there aren't many comments here. Usually the Cult descend en masse and spam sensible articles like this with their crackpot beliefs (see above comment for a typical example). Celia and friends, where are you ?
Comment by: Carl
Sat., Jul. 31, 2010 at 11:07 am EDT
The word ‘denialism’ is being used more and more to describe people who would previously have simply been viewed as skeptical thinkers. Somewhere along the way we have forgotten that skepticism has always been at the root of scientific progress. As often as not, it is those who poke holes in prevailing scientific views who lead the way forward. I’m really not sure what the use of the word ‘denialist’ to describe people like me accomplishes, other than to diminish, and demean. I admit I deny that science is static and unchanging. I also deny anyone else’s right to determine what choices I must make for my own health. If this is denial, then I highly recommend it.
Although, I must admit that I have known those who used AIDS dissidence to avoid facing the possible consequences to their health of being HIV positive. However, people who are simply running away from their own mortality and use dissenting views in AIDS to cocoon them from reality are very few in my experience. Most of us are avid readers who watched high dosage AZT hasten our friends deaths and we are justifiably cautious about the fruits of HIV theory. We are thoughtful, open to new data, and understand the pros and cons of self-determination.
Personally, I think the evidence shows that AIDS is more complicated that HIV alone can explain. I am in good company: many front-line HIV researchers now agree with this idea - including HIV co-discoverer Luc Montagnier. Clearly, other factors contribute to the dysregulation of the immune system seen in so many HIV positive people. This isn’t denial, and it isn’t a cult: it’s reality. Yet it was so called ‘denialists’ who first pointed-out this seemingly ‘new’ truth - over 25 years ago. Let’s not forget that.
In the end, we all want safe treatments and a cure for AIDS. Isn’t that what really matters?
Comment by: Oigen
Sat., Jul. 31, 2010 at 8:11 am EDT
Anyone like Bergman who obviously reads the dissident literature and still cannot engender at least a smidgen of skepticism about the HIV equals AIDS hypothesis reveals a lot about their mentality.
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