Is it wrong to highlight the deaths of HIV-positive AIDS denialists who reject medications and urge others to do the same?
In “Don’t Get Fooled Again”, I look at the role played by the media in promoting dangerous pseudo-scientific ideas under the guise of “balance” in reporting. From the mid-1950s onwards, there was a clear consensus among scientists, based on very strong epidemiological evidence, that smoking caused lung cancer. Yet for several decades, many journalists insisted on “balancing” their reports on each new piece of research with a quote from an industry-funded scientist insisting that the case remained “unproven”.
The tobacco industry’s strategy from an early stage was not to deny outright that smoking was harmful, but to maintain that there were “two sides to the story”. In January 1954, the industry issued its now-famous “Frank Statement to Cigarette Smokers” – a full-page advertisement published in 50 major newspapers across the US.
“Recent reports on experiments with mice have given wide publicity to a theory that cigarette smoking is in some way linked with lung cancer in human beings”
the industry noted.
“Although conducted by doctors of professional standing, these experiments are not regarded as conclusive in the field of cancer research… we feel it is in the public interest to call attention to the fact that eminent doctors and research scientists have publicly questioned the claimed significance of these experiments.”
The strategy played cleverly to the media’s penchant for “controversy”, and proved remarkably successful. Long after the matter had been decisively settled among scientists, public uncertainty around the effects of smoking endured.
US cigarette sales continued rising until the mid-1970s – and it was only in the 1990s – four decades after the scientific case had been clearly established – that lung cancer rates began to tail off. Harvard Medical Historian Allan M Brandt has described the tobacco industry’s public deception – in which many mainstream journalists were complicit – as “the crime of the century”:
It is now estimated that more that 100 million people worldwide died of tobacco-related diseases over the last hundred years. Although it could be argued that for the first half of the century the industry was not fully aware of the health effects of cigarettes, by the 1950s there was categorical scientific evidence of the harms of smoking.
The motivations of the AIDS denialists may be very different, but their rhetoric and tactics are strikingly similar. During the early 1990s, Sunday Times medical correspondent Neville Hodgkinson was bamboozled into running a series of articles – over a period of two years – claiming that:
“a growing number of senior scientists are challenging the idea that the human immunodeficiency virus (HIV) causes AIDS”…
“This sensational possibility, now being contemplated by numerous doctors, scientists and others intimately concerned with the fight against the disease, deserves the widest possible examination and debate.”
Hodgkinson declared in December 1993.
“Yet it has been largely ignored by the British media and suppressed almost entirely in the United States… The science establishment considers itself on high moral ground, defending a theory that has enormous public health implications against the ‘irresponsible’ questioning of a handful of journalists. Their concern is human and understandable, even if we might expect our leading scientists to retain more concern for the truth while pursuing public health objectives.”
As with the tobacco industry’s “scepticism” over the link between smoking and cancer, the views promoted by Hodgkinson tended to focus on gaps in the established explanation (many of which have since been filled) rather than on any empirical research showing an alternative cause. But he did use one of the recurrent rhetorical motifs of the AIDS denial movement – highlighting the case of an HIV-positive “AIDS dissident” who refused to take anti-retroviral drugs but remained healthy.
Jody Wells has been HIV-positive since 1984. He was diagnosed as having AIDS in 1986. Today, seven years on, he says he feels fine with energy levels that belie his 52 years. He does not take the anti-HIV drug AZT…
He feels so strongly about the issue that he works up to 18 hours a day establishing a fledgling charity called Continuum, “an organisation for long-term survivors of HIV and AIDS and people who want to be”. Founded late last year, the group already has 600 members.
Continuum emphasises nutritional and lifestyle approaches to combating AIDS, arguing that these factors have been grossly neglected in the 10 years since Dr. Robert Gallo declared HIV to be the cause of AIDS.
Tragically – if predictably – Jody Wells was dead within three years of the article being written.
Although Hodgkinson left the Sunday Times in 1994, his articles on the “AIDS controversy” continued to be disseminated online, lending valuable credibility to the denialist cause – and have been credited with influencing Thabo Mbeki’s embrace of AIDS denial in the early part of this decade.
When, in 2000, President Mbeki invited several leading denialists to join his advisory panel on HIV and AIDS, Hodgkinson was one among a number who published articles in the South African media praising the decision. Writing in the New African, Hodgkinson called for “a humble, open, inquiring approach on all sides of this debate” – whilst simultaneously declaring that “AZT is a poison” and denouncing “the bankruptcy of AIDS science”.
Hodgkinson also wrote for Continuum’s magazine, which, following Jody Wells’ death was edited by HIV-positive medication refusnik Huw Christie. Christie defiantly launched the “Jody Wells Memorial Prize” (recently satirised here by Seth Kalichman) offering £1,000 to anyone who could prove to his satisfaction that HIV was real.
The magazine finally folded in 2001, with the Jody Wells Memorial Prize still on offer, after Huw Christie died from a disease which fellow denialists insisted was not AIDS-related. “Neither of your illnesses would have brought you down, Huw”, wrote Christie’s friend Michael Baumgartner in 2001. “You simply ran out of time to change gear. We both knew it did not need some ill-identified virus to explain your several symptoms”.
“Huw’s devotion to life has no doubt contributed to a better understanding of AIDS and he saved many who, without hearing a skeptical voice, would have been stampeded down the path of pharmaceutical destruction”
wrote HIV-positive San Francisco AIDS “dissident” David Pasquarelli.
“I readily acknowledge that if it wasn’t for the work of Huw and handful of other AIDS dissidents, I would not be alive today”.
Pasquarelli died at the age of 36 three years later.
The same document includes a tribute from Christine Maggiore, another HIV-positive AIDS “sceptic” who famously rejected medication, and publicly urged others to do the same. As has been widely reported, Maggiore died last month of an illness commonly associated with AIDS.
Connie Howard, writing in today’s edition of VUE Weekly, finds the reaction to Maggiore’s passing distasteful, claiming that: “some AIDS activists are celebrating—not her death exactly, but celebrating a point for their team nonetheless”.
Howard suggests, echoing Hodgkinson, that “Many HIV-positive people who choose an alternative holistic health route defy all odds and stay well and symptom-free for decades”, and that she has “talked to HIV-positive people living well—really well—without drugs.”
According to Howard:
“it’s time that choice and discussion become possible without hate instantly becoming the most potent ingredient in the mix… The vitriol delivered the way of both dissidents and the reporters telling the stories of the dissidents is a crime… Christine Maggiore deserves to have chosen her own path and to be respected for it.”
AIDS denialists and their sympathisers often accuse mainstream AIDS researchers of not being open to “discussion” or “debate”. Yet meaningful discussion is only possible when both sides are operating in good faith. The problem with AIDS and HIV is that the evidence linking the two is so overwhelmingly strong that the only way to maintain a consistently denialist position is to engage in “bogus scepticism” – arbitrarily dismissing good evidence that undermines one’s favoured viewpoint, misrepresenting genuine research in order to create the appearance of controversy where there is none, seeking to give unpublished amateur research equal status with peer-reviewed studies by professional scientists, and treating minor uncertainties in the established theory as if they were knock-down refutations. In such circumstances, reasoned debate simply becomes impossible.
Howard doesn’t specify which AIDS activists she believes “view the death of an AIDS dissident as a victory” or have celebrated Maggiore’s passing, so it’s difficult to evaluate the truth of that particular claim.
But the notion that everyone is duty bound to “respect” Christine Maggiore’s decision to embrace AIDS denial – and counsel others to do the same – does seem a tad problematic.
What Howard chooses not to tell her readers is that Maggiore’s denial extended not only to refusing medical treatment for herself – she also declined to take measures to mitigate the risk of transmission to her young daughter, Eliza Jane, and refused to have her tested or treated for HIV. When Eliza Jane died in 2005 of what a public coroner concluded was AIDS-related pneumonia, Maggiore refused to accept the result, attacked the coroner’s credibility, and claimed that the verdict was biased.
Missing too, is any reference to South Africa, where Maggiore travelled in 2000 to promote her ideas on AIDS and HIV. Maggiore is said to have personally influenced Thabo Mbeki’s decision to block the provision of anti-retroviral drugs to HIV-positive pregnant women. A Harvard study recently concluded that this decision alone resulted in 35,000 more babies being infected with HIV than would otherwise have been the case. Overall, the study concluded, Mbeki’s denialist policies had led to more than 300,000 preventable deaths.
If the Harvard researchers are correct, then AIDS denialism – of which Christine Maggiore was a vocal proponent – has already caused many more deaths than did the war in Bosnia during the early 1990s. Yet the only “crime” that Connie Howard seems prepared to acknowledge in relation to AIDS and HIV is the ill-feeling directed towards Christine Maggiore, her fellow “dissidents”, and the journalists who give space to their denialist views – views which have repeatedly been shown to be based not on science, but on “selective reading of the scientific literature, dismissing evidence… requiring impossibly definitive proof, and dismissing outright studies marked by inconsequential weaknesses”.
Should we “respect” a person’s decision to refuse medical treatment, even if that leads to their own premature death? Arguably we should. But should we also respect that same person’s decision, on ideological grounds, to deny medical treatment to a young child, with fatal consequences? Should we respect their decision to support a pseudo-scientific campaign denying the established facts about a serious public health issue, when that campaign results in hundreds of thousands of deaths?
It is surely possible to agree that Christine Maggiore’s premature death was an appalling human tragedy, whilst pointing out that she was nonetheless dangerously misguided – and that the manner of her passing makes the tragedy all the more poignant.
Christine Maggiore, Jody Wells, Huw Christie, and David Pasquarelli form part of a grim roll-call of HIV-positive medication refusniks who chose to argue publicly that the state of their health cast doubt on the established science around AIDS and HIV, and then went on to die from the disease. For AIDS activists to remain silent in such circumstances would be a dereliction of duty. Publicly highlighting the human cost of AIDS denial, so that similar deaths may be prevented in future, must surely take precedence over showing “respect” to dangerously misguided people, however tragic the circumstances of their demise.
See also: The parallels between AIDS denial and Holocaust negationism
Richard Wilson's blog 
Bravo! Excellent post, Richard.
“But the notion that everyone is duty bound to ‘respect’ Christine Maggiore’s decision to embrace AIDS denial – and counsel others to do the same – does seem a tad problematic.”
I would say more than problematic, a point you make quite clear by the conclusion of this piece.
Tyson Koska
January 17, 2009 at 10:17 pm
I completely acknowledge that many HIV positive dissidents have died and seem to have been in a state of denial of what was going on in their bodies. But to be fair to Christine, I have to ask, and please answer honestly, “Can you absolutely know that Christine Maggiore would be alive today if she had followed doctors orders and taken the recommended treatments?” Your post assumes the answer of this to be a resounding “Yes” but we all know this is impossible to know. In my opinion, Christine as many others who were treated early on in the epidemic would most likely have died ten years ago if she had been treated with among other unproven treatments – AZT monotherapy. Although I am not a “dissident” or a “denialist” as you like to refer to these people, I think Connie’s article brings a valid persepective from the middle ground on this still unresolved public health issue. Thanks – Liam
Liam
January 25, 2009 at 12:48 am
Liam,
Thanks for your question – I appreciate your cordial tone! I’m not sure there’s anything in life that it’s possible to know with absolute certainty – and neither am I a doctor or medical researcher. So I definitely wouldn’t want to claim absolute knowledge about what might have happened had circumstances been different in Christine Maggiore’s case.
When we’re looking at health outcomes for any disease, it seems that we’re generally dealing with probabilities – and even a 90% probability of a particular outcome is not the same as an absolute certainty.
Equally, although very little is certain, we still live in a world where making the wrong decision can cost hundreds of thousands of lives, so I do think it’s important that decisions are made on the basis of the best available information – and that disinformation of the kind disseminated by Connie Howard and Christine Maggiore is robustly challenged.
I will say that the AIDS denialist claims about AZT being toxic, and being more likely to damage health than help it, seem to have been seriously overblown. The evidence from the NIH suggests that even though AZT as a monotherapy had limited effectiveness, most patients who took it, even in the early days, still fared better than those that didn’t: http://www3.niaid.nih.gov/topics/HIVAIDS/Understanding/AZTandAIDS.htm
There’s more on the issue from AIDStruth here: http://www.aidstruth.org/new/denialism/myths
I’m afraid I can’t agree with you about Connie’s article. It’s one of the worst pieces of mainstream journalism that I’ve seen on this issue for a very long time. She affects to be putting forward a “balanced” view of the issue – yet chooses to withhold from her readers key facts about the central case that she cites.
The primary reason Maggiore caused such outrage was not (as Connie Howard’s account of the story seems to suggest) that she chose to ignore medical advice in her own case. That was, after all, her choice. It was the fact that a) she chose to withhold medical treatment from her child, resulting in the child’s death b) she counselled other HIV positive people to forgo medications that could have saved their lives c) she was among a group of campaigners who influenced the South African government to take public health decisions that have cost more than 300,000 lives.
Connie Howard chose to omit all of these facts. I can understand that she may feel strongly about the need to promote what she calls “holistic” medical treatments. But the fact that she would choose to do so by perpetuating disinformation under the guise of “balance” seems very unfortunate.
Richard Wilson
January 25, 2009 at 10:27 am
Okay this is good – thanks for your cordial tone in return. I get what you’re saying about Christine – in that it was her advocacy and not her own personal choices that were causing outrage. Thanks for clarifying. But again I have to counter to your a) and b) – She did not withhold medical treatment from her child – she took her daughter to 3 different doctors 2 of whom were aware of Christine’s Positive Status. The last prescribed amoxicillin and Christine treated her daughter with this. None of these three doctors diagnosed pneumonia – a disease which doesn’t kill silently nor suddenly. EJ died 1.5 days after seeing the last doctor. To date there is no evidence showing that EJ tested positive on an HIV test. However, I do acknowledge and I can hear where you’ll go with this – that she should have had her child tested for HIV knowing that there was a good possibility that it was transmitted at birth. Fair enough. However, I do find it suspicious that pneumonia was found to be the cause of her death and only after four months – and furthermore that the coroner notified the LA times of their declaration before the parents. That’s really lame. and b) – she never counselled people to forgo medications – not once. She only shared information that called into question certain treatments – and she shared the irrefutable fact that some people do not progress to disease even when they forgo such medication. You make really valid points, but I think what bothers me the most about attacks on Christine is that she is portrayed as some kind of whack job loony – many of her detractors have not even read her book – and when you take the time to listen to what she’s saying, agree or disagree, she raises some difficult questions. Of course, if HIV had been totally solved, its pathogenesis completely understood, and truly effective treatment discovered then we would not need to be questioning anything. Until we reach this point, however, I think healthy questioning should prevail. Thanks again – Liam
Liam
January 25, 2009 at 6:52 pm
It’s so easy to be simplistic and say that David Pasquarelli was HIV positive and he died, so it “must have been an AIDS death.” Did you know that when he was in the hospital for meningitis he was given an antibiotic at three times the normal strength? Anyone would have gotten sick and died from this. His kidneys never recovered, and, yes, he died. You may call that AIDS, but it doesn’t really tell you what happened. Huw Christie was never shy about talking about his cancer, yet because he was “HIV positive,” it was called an AIDS death. I think you will find that each person’s life, illnesses and death are quite different is every case.
Tammy
February 10, 2009 at 9:35 pm
Liam – sorry for the delayed reply – I just don’t buy the idea that there was some kind of LA Coroner’s conspiracy to pervert the truth about the cause of death in this appallingly tragic case. To an outsider – and that’s all one can say from this distance – it’s impossible to avoid the impression that the family were just unable to face the reality as determined by an independent coroner, and were prepared to do anything – even commission a report by an unqualified friend of theirs to try to come up with a different answer. As for whether Maggiore counseled others to reject mainstream medications, I guess one can argue the toss, but I think her message was pretty clear in describing anti-retrovirals as “toxic”, and in the way she promoted herself as living perfectly healthily without medications.
Tammy – I don’t think I explicitly stated that David’s death was due to AIDS – though this would seem to be the obvious inference to draw for anyone who isn’t a self-described “AIDS dissident”. I’m not a coroner or a doctor and I don’t have access to anyone’s medical records so I’m in no position to make a scientific assessment of what caused the grim succession of deaths I’ve outlined above. But given the numbers involved – and unfortunately I think there will probably be more such premature deaths over the next few years – it really seems to stretch credulity to breaking point to suggest that these were all just freak occurrences among people who were essentially healthy.
Richard Wilson
February 10, 2009 at 10:02 pm
I’m not a scientist either, and am familiar with just the basics of both orthodox and dissident approaches to HIV/AIDS. But as a health writer and familiar with orthodox and alternative medicine I do know this: AIDS meds, like chemo therapies, are toxic, and to assume untreated HIV deaths are premature is to make a false assumption. I’ve talked to too many HIV-positives refusing treatment who have watched their medication-compliant friends die over the years. They alone, the untreated, are still well. The truth is that we simply can’t assume either Christine or her daughter would still be alive had they gone with recommended drug treatments. We desperately need studies comparing outcomes of those who choose antiretroviral drugs with those who refuse or choose alternative treatments. And those studies, even though those refusing treatment have volunteered to take part, aren’t happening.
Connie
February 11, 2009 at 4:59 pm
Connie,
Many thanks for your comment. I used the word “premature” in the sense that when people are dying at age 36 (as did David P) – or indeed 52, that’s tragically young whatever the cause.
Your Jan 15th article raised a lot of questions. I’d be interested in knowing more about your views on this issue.
*In the article, you suggested that some AIDS activists had been “celebrating a point for their team” in the aftermath of Christine Maggiore’s tragic death. This would seem like quite a mean thing for anyone to do. Which AIDS activists were you referring to?
*When you say that AIDS medications are “toxic”, do you mean that they are “toxic” in the sense that, say, paracetamol is toxic (ie. dangerous beyond a certain dose)? Or do you mean that they are prone to causing life-threatening side-effects at the doses commonly prescribed? If so, on what evidence?
*Do you believe that there is evidence of a systemic failure by the medical profession to give patients full and accurate information about the AIDS medications they are prescribing?
*You argue that “we desperately need studies comparing outcomes of those who choose antiretroviral drugs with those who refuse or choose alternative treatments”. Yet data is already available on the medical outcomes of those living with HIV prior to the availability of ARVs (average life expectancy was fairly short), and research has also more recently been done on the outcomes of those with HIV who take ARVs (average life expectancy is now much longer – albeit still less than the mainstream population). What additional information do you think that further studies might be able to yield?
*The overwhelming majority of AIDS/HIV experts believe, based on the available evidence, that HIV causes AIDS and that ARVs significantly increase the life-expectancy of those living with HIV, and that failure to take those drugs will likely lead to a premature death. Given this, do you really think that it would be ethical for the scientific community to sanction a comparative study which entailed one group of patients forgoing ARVs for an extended period of time?
Richard Wilson
February 11, 2009 at 10:08 pm
Though I’m a little surprised you’re asking me, the author of “one of the worst pieces of mainstream journalism” on the topic you’ve seen (smiley), I’ll answer your questions from my point of view as best I can.
About the toxicity of AIDS medications: The official HIV/AIDS Fact Sheet states that “the use of antiretroviral therapy is now associated with a series of serious side effects and long-term complications that may have a negative impact on mortality rates.”
It’s a matter of fact that an alarming number of deaths due to liver failure, kidney disease, and cardiovascular complications are happening in those choosing AIDS drugs. The largest study published to date in 2006 found, among those treated with ARVs, “a negative impact on mortality rates.”
AIDS medications (and many other medications) are both dangerous beyond a certain dose, and capable of causing life-threatening side-effects at doses commonly prescribed. AZT is a failed cancer chemotherapy. Its toxicity is well-known, and is the reason it is now no longer used as monotherapy. The toxicity of nevirapine, used to prevent mother-child transmission, is also well-known. It can cause symptoms of severe illness within days of beginning treatment where none were present prior to treatment, and comes with warnings about toxic and fatal skin-blistering, liver and kidney reactions (toxic epidermal necrolysis). A single dose of nevirapine can kill. I don’t know the particulars of all the drugs used in cocktails, but the fact that liver failure is a leading cause of death among HIV-positive Americans is telling.
Do I believe there is evidence of systemic failure by the medical profession to give patients full and accurate information about AIDS medications? Information the medical profession is giving their patients about ARVs isn’t something I’ve investigated, but I do believe there has been some serious whitewashing of risk on the part of drug companies, and I do know where physicians and regulatory bodies get most of their information on drugs.
What new information might studies comparing outcomes of those who choose ARVs with those who refuse or choose alternative treatments yield? They would tell us which group fares better, both with respect to quality of life and to life expectancy. It’s true that average life expectancy has gone up since the arrival of ARV cocktails, which is why I advocate choice—many do well on them. Others however, get very, very ill and die quickly, of complications of the drugs rather than of AIDS. And others still live long and well without any drug intervention at all.
Do I think it would be ethical for the scientific community to sanction a comparative study which entailed one group of patients forgoing ARVs for an extended period of time? According to Mark Gabrish Conlan of Zenger’s Newsmagazine, many within dissident groups have offered to provide control groups from among those already determined not to take drugs—and they are consistently refused. I don’t see how it would unethical to compare outcomes when the control groups already exist.
And despite the truth of quick deaths in the early years, it’s an assumption, not a fact, to state that failure to take ARV drugs would lead to premature death. For one, we don’t actually know how long the early AIDS victims had been living with HIV prior to their death. And then came AZT, which arguably shortened life-expectancy, not lengthened it—this by the admission of many AIDS physicians. The longer life-expectancy currently being achieve may be as much a reflection of the course HIV would take naturally as of the success of ARVs.
I don’t know, but it does appear to me that, despite the best of motives to help, our absolute faith in the power of pharmaceuticals is misplaced. And to answer your first question last, who was I referring to, celebrating a point for their team? I won’t name names, but I saw enough smug self-righteousness and unimaginable name-calling directed at Christine to last me a lifetime.
Connie
February 12, 2009 at 3:25 am
OK, that wasn’t a very nice thing to say about your article. What I found particularly troubling was precisely that you weren’t prepared to name names, or give specific, verifiable details on many of the other claims that you put forward (eg. about ARV toxicity). Making those sorts of claims about this particular issue without giving people the opportunity to check the details out for themselves seems quite irresponsible, IMHO.
On the claim that AIDS activists were “celebrating a point for their team”: If you want to make an allegation of that gravity, which inevitably casts “AIDS activists” in a generally bad light, it seems reasonable that you might specify who, exactly, you are referring to, and on what basis. Otherwise it just comes across as a generalized smear.
The article claimed – again without giving verifiable details – that Christine Maggiore had been subjected to “hate”, apparently on the basis of her choice not to take anti-retroviral drugs. But this seems quite misleading. Lots of people choose to forgo medical treatment for all sorts of different reasons. Not all of them provoke such an emotive reaction.
What what you omit to tell your readers is that Maggiore’s choice went far beyond forgoing treatment for herself – that she promoted her views on HIV and AIDS in South Africa, where more than 300,000 people are believed to have died as a result of the government’s delay – under AIDS denialist influence – in making ARVs available: http://www.hsph.harvard.edu/news/press-releases/2008-releases/researchers-estimate-lives-lost-delay-arv-drug-use-hivaids-south-africa.html. You also leave out the fact that, tragically, Maggiore’s own daughter died of what an LA Coroner concluded was an AIDS-related illness, having never been tested or treated for HIV.
On the general claims about the side-effects of ARVs, I’d be interested in seeing some references. Clearly there have been cases in the past when unsafe medicines have made it onto the market – or where patients have not been fully-informed about potential negative side-effects. But if this truly is the case (or even a likely possibility) with ARVs, surely it’s important to be as clear and specific about it as possible, so that something can be done about it?
Richard Wilson
February 12, 2009 at 8:29 am
[…] a comment » VUE magazine’s Connie Howard, who I took to task here over her Jan 15th article urging “respect” for Christine Maggiore’s position on […]
AIDS and HIV: Connie Howard follows in Neville Hodgkinson’s footsteps « Don’t Get Fooled Again
February 12, 2009 at 10:25 am
Thanks. Regarding the withholding of names, most of the medication-free individuals I’ve spoken with who tell me stories about their experiences watching friends on meds die, or about a doctor’s confession that those treated with AZT monotherapy might still be alive had the medical community not overreacted, have shared those in confidence; I’m not about to betray that. You can see why these kinds of stories might want to remain underground?
Regarding generalized smears, they’re unproductive, I agree. I have, simply because I’m not convinced that pharmaceuticals are the answer, been, by some, put into the dissident camp, and you can’t tell me that camp hasn’t been the subject of countless generalized smears. But I don’t believe focusing on the nasty comments of individuals is, even with names, any more productive. Information is what will move this discussion forward.
Regarding the hate Christine and her family have suffered, and why my piece didn’t include Christine’s promotion of her views in Africa (aside from the fact that I had a 650 word limit): I am (obviously) not fully convinced that ARVs to Africa (or to Christine or Eliza Jane) would’ve given us a better outcome.
You asked for references on claims about side-effects of ARVs:
1) The official National Institutes of Health HIV/AIDS Fact Sheet, updated October 2006, is available at: http://www.nih.gov/about/researchresultsforthepublic/HIV-AIDS.pdf.
“However, the use of antiretroviral therapy is now associated with a series of serious side effects and long-term complications that may have a negative impact on mortality rates. More deaths occurring from liver failure, kidney disease, and cardiovascular complications are being observed in this patient population. About one quarter of the HIV-infected population in the United States is also coinfected with hepatitis C virus (HCV). The appearance of multi-drug resistant strains of HIV presents an additional serious public health concern.”
2) The largest study published to date in 2006 found, among those treated with ARVs, “a negative impact on mortality rates.” Antiretroviral Therapy Cohort Collaboration. HIV treatment response and prognosis in Europe and North America in the first decade of highly active antiretroviral therapy: a collaborative analysis. Lancet 2006; 368:451-458.
3) I don’t have any references handy on nevirapine, and frankly don’t have time at the moment to search, but information about toxic epidermal necrolysis in response to nevirapine shouldn’t be hard to find, if you’re interested.
Connie
February 12, 2009 at 3:21 pm
Cheers – will check those references.
“Regarding the withholding of names, most of the medication-free individuals I’ve spoken with who tell me stories about their experiences watching friends on meds die, or about a doctor’s confession that those treated with AZT monotherapy might still be alive had the medical community not overreacted, have shared those in confidence; I’m not about to betray that. You can see why these kinds of stories might want to remain underground?”
Sure – but I hope you can then see why people might then doubt either the veracity of what your sources are telling you, or the fact that those sources really exist?
Likewise, unless you specify which AIDS activists (Zachie Achmat? Nathan Geffen?) you believe are guilty of the unpleasant behaviour that you attribute to this mean group of un-named people, then the generalized and unverifiable nature of that smear seems pretty unavoidable. You may feel that such things are in some way canceled out or justified by the smears you believe have been directed at the self-described “dissident” movement, but then it starts to look like you really are taking sides, and that you are adjusting your reporting accordingly.
Based on the stuff I’ve seen, I’d agree that there were some appalling things said about Christine Maggiore. But I’ve not seen any evidence that any of the people saying those things were AIDS activists. The unpleasant comments that I saw all seemed to be from the kind of bloggers and blog commenters who can generally be counted on to say outrageous things in the aftermath of any human tragedy.
Richard Wilson
February 12, 2009 at 10:23 pm
I’d be on Connie’s team ANY DAY!! Note how her tone is balanced and thoughtful, and that asshole Wilson’s is infused with vitriol, poison, sarcasm and negativity. I can tell you myself – not on meds ever (save for 3 days in 1993 – AZT – hence the ephinany) poz since 1992, with many friends since 1987 – and ALL with VL’s out of range of researchers but under 10,000 and all eager to contribute to a study of non-meds versus meds since we all refuse them.
Had I listened to a qucakery med-head like this Wilson ass, I would have been put on meds (since my numbers have never been over 400 or less than 200) in 1992 and for SURE would have been dead or not remotely resembling a functioning human being. Ditto for three others in my circle. Unfortunately, the med people I know DID die, and one is paralyzed.
Were but there more Connie’s in the world and less Wilsons.
Ron
March 23, 2009 at 7:10 pm
Thanks for those thoughts, Ron. Get them published in a peer-reviewed scientific journal and I might believe you.
I take it that “med head” is your name for people who follow the advice of doctors, medical researchers etc?
Richard Wilson
March 23, 2009 at 8:49 pm
I doubt anyone will ever see this being that it is 4 months since the last entry. Yet as the internet is also called “the way back machine” by ORAC of Respectful Insolence, it is fun to go back and see how people’s ideas have changed over time. I am particularly inferring to Liam above who I believe is Liam Scheff. He empahtically stated about Christine Maggiore: “she never counselled people to forgo medications – not once.” That is an outright lie. She did so to Rex Poindexter, according to his partner John Boucher. Liam is well aware of this fact. Also, here is the quote, and below is the link from VirusMyth.com, a website dedicated to AIDS Denialism:
“Another interviewee was 11-year-old Nkosi Johnson, who was kind of the HIV poster boy for South Africa. Nkosi was visibly weak and sick as he spoke of his wish to be normal and not have to take all the medicines, especially AZT, which he had agreed to take. On film, Maggiore told Nkosi her own story of being healthy without taking medications, but Nkosi remained unconvinced. He had been taking the cocktail of medicines including AZT for four years before he became symptomatic at age seven.”
Now, of the above comment, you might say that she did not tell the child to not take meds, but that was clearly her intention. However, if you are still not convinced, how about the next statement, from the same site/same interview:
“Another questioner noted that several of his friends seemed to be helped by protease inhibitors. Maggiore’s response was that protease inhibitors have been found to be helpful in the short run in some cases because they have an anti-fungal and anti-microbial effect which can temporarily help the body restore itself, although she would not recommend their use because of the severe side effects.”
OK, those were her words. No need for clarification.
http://www.virusmyth.com/aids//news/sfbtmaggiore.htm
JTD
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August 4, 2010 at 6:24 am
Excellent article. I will be facing many of these issues as well..
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