This is a guest post by British doctor DeeTee. See more by DeeTee here.
The Myspace picture albums seem to capture a wonderful moment in time. The scene is idyllic. Sun-kissed palm trees are set against an azure Caribbean sky, and a happy couple delight in their holiday trip to the Florida Keys. Elsewhere, we can see photos of them with their children, a wholesome, all-American family enjoying everything life has to offer and dreaming of good times yet to come. But despite the glowing vitality that is projected in the photos, things are not what they seem. The woman you see is Karri Stokely, a 43 year old who was diagnosed with HIV infection when she was 29 years old. She is keen to share her story, and does so on several other websites and blogs. It should be a story of courage and hope, but I fear it will not turn out that way. For Karri has decided to completely ignore medical advice and forgo her HIV medication.
Despite the severity of her initial diagnosis, Karri’s chances for a fairly long and healthy life might have been excellent. Her HIV was diagnosed in 1996, luckily just when new combinations of HIV drugs were emerging and having a major impact on the progress of the disease. I know from my own patients that this was a time of near-miraculous recovery for many of them, since for the first time there were drugs that could successfully control HIV replication and allow the body’s immune system to recover its vigour. For patients diagnosed with HIV before that time, the best we could hope to do was to treat its complications when they arose, a strategy that had until then merely delayed the inevitable.
Karri started HIV meds, and over the next 11 years she did well. Her HIV load (58,000/ml) became undetectable, and her immunity improved as her CD4 (helper T lymphocyte count) rose from 29 to a reasonably respectable 200-300 level. Then, just over 2 years ago, Karri’s husband came across a film on the Internet produced by the husband of the AIDS denialists Christine Maggiore. “The other Side of AIDS” is a film that promotes the view that HIV does not cause AIDS. Courtesy of the University of Google, Karri feverishly set about learning all she could about the alternative views of AIDS. Suckered into the idea that her only problem was the “toxic” drugs she was taking, she quit her meds.
She became ill, reasoning that this was only because “those toxic drugs are bound to be very hard to the body after 11 straight years”. Not unexpectedly, her CD4 count had dropped to 96, and her virus levels rose to 135,000/ml. But Karri seems happy, and without the drugs she claims to feel well, and is determined to continue without them. Not content with getting on with what life she may have left, she has become evangelical in her efforts to promote her newfound beliefs about AIDS and persuade others to think HIV is harmless, appearing on radio shows and publicising her views through Myspace and Facebook. She explains:
I have business-type cards printed up that say HIV does not equal AIDS, an upside down ribbon, and a few of the websites that continue to help me every day. I leave these cards everywhere I go. Every public restroom, every restaurant, on the table, in multiple places in the library, anywhere.
How has this affected me? Shock, sadness, despair, fear, suspicious, robbed, angry, outraged, collective, reflective, triumphant!
I am an overcomer!
I will tell my story.
I will not go quietly.
Karri is currently planning to give a presentation at the “Rethinking AIDS” meeting, a repository of AIDS denialism masquerading as a scientific conference. Karri’s talk is entitled “How I fell victim to the AIDS machine”. I doubt if Karri’s talk will focus on the revelation that her inspiration, Christine Maggiore, herself died of AIDS in December 2008.
Christine was, like Karri, diagnosed out of the blue, a wholly unexpected finding in someone who didn’t fit the usual mould of an AIDS patient. Christine was seduced by the idea that HIV didn’t have anything to do with AIDS back in the 1980s, when perhaps she can be forgiven for having some doubts (and a few scientists at that time expressed similar uncertainties). But although science has subsequently demonstrated HIV is unquestionably the cause of AIDS, and overwhelming evidence has accumulated to confirm this, Christine became ensnared in her own world of AIDS denialism.
Pictures of Christine’s family look distressingly similar to those of Karri; a vibrant young woman with a loving family around her and everything to live for. But Christine chose not to take HIV drugs in her pregnancy, resulting in her second child, Elisa-Jane, becoming infected with HIV.
Tragically, Elisa-Jane died of AIDS before she reached the age of four, having not only been denied the drugs that would have stopped her being infected in the first place (whilst in utero), but also the drugs needed to save her life once she was infected. Her death merely seemed to intensify Christine’s obsessive AIDS denialism rather than to make her re-evaluate her beliefs about AIDS. Her cognitive dissonance about the subject became so all-consuming that when she started to become seriously unwell with AIDS, she failed to seek appropriate medical attention, eventually dying in December last year.
Like many others, I had hoped that Christine’s death would nail the lie about HIV not causing AIDS. But it has not done so. Unfortunately there are too many charlatans who have invested too much in the AIDS denial industry to back down now. They must know the harm they do, as more people like Karri fall under their spell and risk dying as a result, but they promote their lies regardless.
Tales like Christine’s and Karri’s represent a tiny drop in the ocean of similar tragedies. AIDS denialism does not just kill people in the West, but wherever HIV is a problem. In South Africa, the deliberate denial of life-saving antiretroviral drugs to pregnant women and those with AIDS is estimated to have caused the premature deaths of 330,000 people. The promotion of “vitamins” as AIDS treatments by unscrupulous charlatans like Matthias Rath has cost untold others their lives. Each of these victims will have their own tragic stories of family destruction and the legacy of lingering infection and death among loved their ones.
I only hope that Karri comes to her sense before it’s too late, and that she doesn’t follow in Christine’s footsteps. This disease has already claimed too many lives, and every unnecessary death is a tragedy. She is not a “victim of the AIDS machine”, but a victim of AIDS denialism.
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This is a guest post by British doctor DeeTee.
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The HIV/AIDS denialist movement, particularly the "Rethinking AIDS" group, has a long history of setting up "alive and well" HIV+ poster children to promote their cause. Unfortunately, unlike the main (HIV-)denialists themselves like Duesberg, Bauer, Crowe, Rasnick, Turner et al, HIV+ denialists tend to have a short shelf life in the PR game.
Karri Stokely did not just accidentally stumble into becoming a denialist spokesperson. She was actively recruited over the net. Previously she had provided a web testimonial to a wheelchair bound quack who advocates (I'm not kidding) manipulation of the atlas, and who supposedly restored her to health. She was a sitter for the manipulative denialist cult:
http://www.zwire.com/site/news.cfm?
She will be discarded and forgotten when she either gets sick and dies (or more hopefully comes to her senses), like all the others. Then the denialist PR machine will move on to the next poster child - they have several more waiting in the wings, all heterosexual women with no scientific background.
It's deeply nasty stuff, that exploits the short attention span and memory of your average web surfer.
The cultist group-think that afflicts these victims is frustrating. Once they go down the path of denial they are unsalvageable, and the denialists-in-chief deliberately nurture this attitude which is reinforced at every turn.
As you say, the actions of those in the forefront of the denialist machine are despicable and very revealing. The way in which Duesberg has behaved in the past (with his accusations that patients who became ill and died have lied) and how he is behaving at present (trying to absolve himself from resposibility for the deaths in South Africa) is quite sickening. Not only do they deny the facts about HIV, they deny their own part in creating this awful mess. The list of speakers for the Rethinking AIDS meeting reads like a litany of the criminally culpable, but they all pretend they are innocent of any wrongdoing.
They needed people like Maggiore, and with her passing they are scrabbling around to maintain the supply of credulous (but credible) people to be the face of the denialist movement. A young, attractive woman is so much better than the gnarled old faces of Crow and Duesberg. Do they mention Christine any more? Less than a year later and Stalin's airbrush seems to have erased her from their collective memory (well they do mention her occasionally, but only as someone who they should remember purely as a brave victim of the orthodox AIDS establishment). These people seem to have absolutely no conscience, no morals, no ethics, no compassion, no sense of duty or responsibility and no humility.
Honestly, this smells of astroturf, and the rate at which it has been pushed to the top of google is making me think it's a PR agency playing the "viral marketing" game. Has anybody (that you know is an actual person and not a PR sockpuppet) verified that she exists and has HIV?
Viral marketing? To what aim?
Can't say I've seen that much about Karri on the net.
She seems a genuinely deluded person, to judge from the videos of her.
These comments are insensitive, ignorant and sad. Karri Stokely is a real person, with real feelings, and very real HIV, and yes, so am I. Her prognosis on those supposedly life-saving AIDS meds was not good anymore; she was wasting and on death’s doorstep when she quit them.
That's because AIDS meds are extremely toxic and, like other chemo therapies, they can and do cause immune collapse and death. They help many for a period of time, true—and then they too often fail. And for Karri, they were failing fast. Their absence in her body gave her a fighting chance. Combined with essential nutrition and other life-enhancing support, she regained vibrant health.
AIDS physician Dr. Julianne Sacher of a large and busy practice in Germany compared AIDS meds with alternative treatments in her patients in the late 1980s. Alternative treatments far outshone conventional ones. A year into the research, T-cell counts in those treated with AZT were down by 70 percent, while T-cell counts in those treated alternatively were down by only 7.5 percent.
I don't know what motive so-called denialists would have to fabricate stories such as Karri’s. And it's a bloody waste of time to defend the causation of AIDS with such vehemence (though it is good for the billion dollar AIDS industry). Whether AIDS is caused by HIV or not, the bottom line is that people who use AIDS meds are still dying of AIDS. And when what we’re doing isn’t working, it is, as the saying goes, insanity to keep doing it.
Karri Stokely would, had she not changed course, likely no longer be with us. And that she has her life back right now is something to be celebrated. To deny that, or dismiss it as lucky, or worse, predict and celebrate that it could be a short-lived victory is cruel and Neanderthal. To use a human life as a weapon to win an argument is as juvenile as it gets.
Those who have followed the reality and science of our progress on treatments, those who work in the trenches and speak honestly of our failures with AIDS treatment, those who have followed rare reporters such as Celia Farber who reported AIDS conventions honestly and fully for close to two decades, those who have read the work of honest scientists such as Henry Bauer who have analyzed the official data—these are deserving of respect. Bloggers and others who still don’t know just how incomplete our current understanding is, how woefully inadequate our current medical approach is, and how sadly corrupt the medical machine is—these are not deserving of our respect.
Connie, as someone who does work in the trenches (as a jobbing NHS clinican who has never seen a private patient in his life) I can tell you the realities of HIV, AIDS and its treatments are far removed from the impression given by many the so-called denialists.
If you like anecdotal evidence of personal case histories, I could relate you hundreds, primarily successes (long term) and also failures (a few, and getting ever fewer as the meds improve). But don't just rely on my anecdotes, the scientific literature attests to the continued improvement in quality and duration of life for those on meds.
Contrary to your opinion, what we are doing IS working, which is exactly why I despair when I hear of people who make decisions that may well cost them their lives and destroy the families they have.
Much could be said about the scientific literature attesting to successful treatment. I won’t get into it beyond this: I’m well aware that treatments have improved and are less toxic than they were in the 80s. I’m also well aware that new treatments need only be an improvement over older ones to be approved, and that improved is still not good enough for many.
I’m also aware of how unpleasant side-realities like carcinomas and osteoporosis are downplayed. I’m aware of how the successes of those using alternative treatments when drugs have failed them are repressed. I know how competitive research publication is, and how effectively that deters scientists from pursuing anything but consensus views. I know about media censorship.
I know of HIV positive groups who have rejected ARVs volunteering to have their outcomes compared to those choosing ARVs, and that they have been refused on the grounds that it would be unethical (which makes little sense when these groups are already by their own choice forgoing treatment.)
I’m always happy about success, no matter which approach deserves the credit. The bottom line with people like Karri is that the drugs failed her miserably, and that the path she chose has given her beautiful quality of life. And I will always, when I bump into the kind of senseless and dehumanizing conversation around someone’s life I did on this blog, speak up.
We might actually make some progress on the AIDS front if we stopped seeing it as a war against so-called denialists.
Sorry, Connie, you can't have it both ways.
People have a right to make their own decisions about their health and for that to be a private matter.
But when you use your own health decisions to publicly and contentiously promote disinformation that can be harmful to others, you forgo that right to immunity from scrutiny and criticism.
Those putting information out there are always subject to scrutiny, absolutely, but scrutiny is different from abuse. And the discussion taking place among those trying to discredit those for whom the medical route has failed, or those who challenge current theory most often goes way beyond scrutiny to degenerate into abuse. It's not necessary...and as facts that challenge the views represented here are clearly not welcome, I won't be continuing this discussion any further.
Connie, this is the internet, the very same medium that Karri has used to accuse medical doctors, scientists and particular individuals of "fraud" and "genocide". She claims that HIV is a "phantom" and that HIV/AIDS is nothing but but a "murderous" "political construct".
Of course such wild, ill-informed and frankly nutty claims are nothing unusual on the web. What is different about Karri, though, is that she is not just an unfortunate deluded individual sounding off at her keyboard - she is part of a well-coordinated PR campaign of disinformation run by a cult-like organisation called "Rethinking AIDS", centred on Peter Duesberg and his followers (mainly based in North America). She is being used by them, just as they have used a string of other people, the most notable being Christine Maggiore. They have a long history of similar behaviour, and the internet has been the main medium they use for propagating their lethal disinformation (although they are also using film, as attested by their recent production).
Although you might find it distasteful, highlighting the activities, methods, manipulations and frank dishonesty of the denialist machine is essential to countering their harmful and profoundly unethical project.
I know, I said I was quitting this dialogue, and I’ll renew my resolve after I make this not-AIDS-related comment. It speaks to nutty claims, cult-like thinking, manipulation, and dishonesty of a different sort, and is relevant to the point of misplaced faith and speed with which science corrects itself: We’ve come to believe chemotherapy will cure our cancers, but in the words of Harold Varmus, president of the Memorial Sloan-Kettering Cancer Center, writing in a 2006 paper published in Science and not brought to the general public in the media: "Despite large federal and industrial investments in cancer research and a wealth of discoveries about [it] ... cancer is commonly viewed as, at best, minimally controlled by modern medicine ... Indeed, the age-adjusted mortality rate for cancer is about the same in the 21st century as it was 50 years ago."
We’ve also come to believe that the cervical cancer vaccine will prevent cervical cancer, but in the words of vaccine developer Diane Harper: “All this jab will do is prevent girls getting some abnormalities associated with cervical cancer which can be treated. It will not decrease cervical cancer rates at all.”
These things should make us want to place our bodies in the hands of AIDS meds?
Connie, I think you should have quit when you first said you would.
If you want to divert this discussion into an vague, ill informed generalised rant about cancer treatment and vaccinations, and about science in general... well I think you might be trolling in the wrong section of the internet.
But nice try.