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The medical ‘condition’, HIV / AIDS is a political beast of unique proportions. Yet even with the controversies surrounding every aspect of it continuing unabated to date, questioning, or criticism of the accepted medical consensus remains anathema to political correctness. Contributors to this debate face the unnerving prospect of having their ideas and understandings pulled to pieces (quite often in a personal and savage manner) as the line between belief and certainty has become so muddied. Interpretation of research appears to depend solely on one’s belief system, rather than on objective detachment.
The frustration of this situation is clearly evident in Brian Foley’s latest comments: Which brings us back to Politics Brian Foley (25 July 2003). He bemoans the use of rhetoric as an appropriate means of debate on this BMJ e-debate board, yet employs ironically, an un-Folyesque response that is itself pure rhetoric. He encapsulates his package of presuppositions with such notions as: only peer reviewed publications can be trusted and; those who are in any way critical of the conventionally accepted HIV paradigm deliberately misrepresent facts and seek to mislead readers who do not have the benefit of access to medical libraries to check references, arguably only just avoiding directly libeling (I'm not sure that one can commit 'slander' in writing unless you happen to be in Scotland at the time?) the Perth Group in the process.
Such emotive and defensive use of language spurred me to proffer my initial comments on the allied BMJ e- debate http://bmj.com/cgi/eletters/326/7381/126/ e#30003 comments on debate Carl Williams (27 February 2003). The five points I made in that letter are still I believe, relevant today.
Irrespective of the quality of doctors and researchers around the globe, such as those in South Africa mentioned by Brian Foley and their efforts/commitment to eradicating HIV as a communicable disease, HIV research and treatment remains today as it was 20 years ago - based on a foundation of speculation and unproven assumptions. As I have pointed out in previous letters: Further comments on debate Carl Williams (18 March 2003), [on the above mentioned David Spurgeon debate] and Critical appraisal is essential Carl Williams (2 May 2003) [on this debate], HIV and/or symptoms identical to AIDS were reported to have existed in large numbers, at least several generations before the acronym “AIDS” was first used to describe a collection of disparate symptoms in individuals who had tested positive to Gallo’s ELISA antibody test.
The circular logic that HIV causes AIDS, and that individuals only have AIDS if they are diagnosed HIV positive has become tautologically unfathomable. The attitude, of not just Brian Foley, but also of others, that any criticism of the conventional paradigm must be quashed, rather than considered seriously, echoes religious fundamentalism belief, rather than dispassionate scientific enquiry. Consequently, with so much conviction towards the prevailing paradigm, there is very little opportunity for doctors or researchers to find out how individuals compare on and off ARV. As Peter Flegg assiduously pointed out, I, or anyone else would be “living in cloud cuckoo land”, if I/they thought that RCT’s were going to be carried out with the modern ARV regimens.
In Christopher Tyler’s letter: Re: Liver deaths and HAART - the truth (28 July 2003) since, he gives several examples of the dilemmas that face individuals who have been recently diagnosed HIV positive as well as an example of someone whose health has suffered whilst taking ARV. Although Brian Foley and others may be tempted to dismiss these examples as pure anecdote, in my opinion they serve an important purpose as they exemplify the prevailing attitude of HIV doctors, as well as how the immutable belief that a HIV diagnosis means certain death affects those who have been recently diagnosed HIV positive.
At the risk of attracting (for a second time) some of the rancour that Christopher Tyler’s post will no doubt receive, I would also like to offer the readers a brief personal anecdote concerning a friend of mine.
The person in question (in her late 30’s) had been an IV-drug user in her teens, eventually 'cleaning up' completely in 1983. She tested HIV positive a couple of years later, but as there were no other possible means of transmission post-IV-drug-use, she dates her ‘infection’ sometime prior to 1983. She declined to participate in any anti-HIV drug trials (having seen friends who went on AZT, rapidly become ill and die).
During the nineties she became involved in various complementary therapies, but continued to have routine blood monitoring, as there was considerable pressure for her to do so from her HIV-specialist doctor. She was also continually encouraged to take part in whatever current drug trials were running at the time. In 1996 she decided that the anxiety and stress caused by attending the clinic to have her blood monitored and worrying about what the results might be, was itself damaging her health. She told her doctor that she no longer wanted her blood monitored and asked not to be told the results from her recent blood counts – this proved to be a timely decision.
5 years later, she saw the same doctor again after contracting a minor ear infection. During the course of her consultation the doctor (despite having been asked not to) told her that her previous CD4 count had been 26. As the readers may imagine, my friend was extremely upset and frightened at hearing this news. The doctor again tried to persuade her to start ARV, despite the fact that she had remained in good health for the previous (more than) 5 years, i.e. since that count of 26 had been carried out. Instead she went to see a counsellor, who reminded her that she was as healthy the day after having been told her CD4 count had been 26 (5 years previously), as she was the day before hearing the news. She declined the offer to go on combination therapy and 18 months later remains in good health – nearly 7 years after her blood counts indicated she had AIDS (according to the CDC definition) and more than 20 years after becoming ‘infected’.
Of course my friend’s experience raises many issues about the utility of counting CD4 lymphocytes, but more importantly it illustrates the inherent danger of adopting an overly narrow viewpoint towards how and why illness manifests itself. Surrogate markers may be the best tools that clinicians currently have of assessing the progress of HIV, but should they be reasons for initiating therapy in the absence of clinical symptoms? As Peter Flegg has pointed out, the risk/benefit calculation in asymptomatic individuals is clearly weighted in favour of delaying initiation of treatment, but is it (as he believes) so clearly in favour of commencing treatments when the only indicator is a low CD4 count?
Before Peter Flegg reaches for the research references, I would refer him to my comments regarding ‘interpretation of research’ at the beginning of this letter.
Perhaps the most significant aspect of this story, is that it was only because of my friend’s decision not to continue to have her blood counted and her ability to discern between the doctor’s fear for her health and her own sense of wellbeing/health that prevented her from falling into the same insidious trap that ensnares most recently diagnosed HIV positive individuals - the concretising of a belief, that is fuelled by the conviction(s) of the doctor(s), that one is unwell, or about to rapidly become unwell and that the only course of action that can be taken to remain healthy is to commence ARV.
I am aware that in citing this example I run the risk of being labelled simplistic, possibly unscientific in my thinking, or even a ‘dissident’, but perhaps my more open approach towards the subject is something that is long overdue from researchers and clinicians in the field.
In response to Brian Foley's assertion that rhetoric has no place in this e-debate, I would counter that, with so much that remains unknown (in HIV science) and so much of what we know still uncertain, that this discussion is in danger of reaching a stale-mate without the motivation 'to think outside the square'.
It is always easier to criticise others, their accomplishments, ideas or beliefs, than it is to acknowledge our own misgivings and uncertainties, and to be honest about our fears.
Competing interests: None declared