[Dean's World] Celia Farber: BBC In Clash With Pharmaceutical Advocates Stresses Need For Informed Consent When Orphans Are Enrolled in ARV Trials

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Posted by Celia Farber:
BBC In Clash With Pharmaceutical Advocates Stresses Need For Informed Consent When Orphans Are Enrolled in ARV Trials
http://www.deanesmay.com/posts/1193942359.shtml


   I asked HIV paradigm critic Claus Jensen for his assessment of the
   recent clash between the BBC, which aired the Jamie Doran documentary
   "Guinea Pig Kids" and the cadre of attackers from the US and South
   Africa who made demands that the film be expunged from BBC's archives.
   The BBC bent over backwards to comb over the complainants various
   objections, and the results are a fascinating study in journalistic
   truth-seeking.

   The film can be seen at www.guineapigkids.com, along with additional
   material. The position of those who requested erasure of the film can
   be found at www.AIDSTRUTH.org.

   Claus Jensen's analysis:

   BBC APOLOGY: ANOTHER BEEFLESS BURGER

   When the news first came out that BBC was going to "apologize for
   breach of its journalistic standards" following examination of the
   complaints raised by Jeanne Bergman, AIDS activist with AIDStruth.org
   and the Center for HIV Law and Policy and her "co-signatories",
   AIDStruth.org founder, Prof. John P. Moore was moved to celebrate the
   outcome by a post on Tara Smith's Aetiology blog. Moore's gloating
   message begins with these words:

   By now, the leading AIDS denialists will be aware of AIDS Truth's
   latest victory: The acknowledgment by the BBC of the many flaws in the
   Liam Scheff-inspired documentary "Guinea-Pig Kids", produced by Jamie
   Doran, attacking the use of ARVs to treat HIV-infected foster children
   at New York's Incarnation Children's Center. Full details of this
   victory for science, medicine and public health will be posted on the
   AIDS Truth website, where additional material will be added once the
   BBC finalizes its decision on the fate of the producers and editors
   responsible for the inaccurate and damaging documentary.
   http://scienceblogs.com/aetiology/2007/10/bbc_apologizes_for_promotion
   _o.php#comment-615391

   In Prof Moore's political world, where the power to impose one's will
   upon others by brute force is a reliable measure of truth, BBC's
   apology undoubtedly counts as a successful strike against his enemies.
   But the BBC's first consideration was neither the victorious AIDStruth
   nor the weak and humiliated "denialists". The BBC did what Bergman and
   her AIDStruth co-signatories failed to do in their hour of triumph by
   remembering those who remain anonymous collateral damage in Moore's
   War:

   The programme set out in the programme maker's words:

   "to question the ethics of testing anti-HIV drugs on poor and
   vulnerable children who had no choice in whether or not to take part
   in trials and no proper advocates to speak on their behalf"

   You [Bergman] and your co-signatories concede there was:

   " . . . one administrative problem that subsequent legitimate
   investigations have revealed; that in a very few cases an independent
   advocate was not appointed for a participant although such a step was
   required by the protocols. . ."

   In the event subsequent investigations have revealed that this
   "administrative problem" was significantly more widespread than had
   been alleged in the programme both in terms of numbers and
   geographical spread. It has led to a major publicly-funded
   investigation being conducted by VFRA Institue of Justice, which is
   still ongoing. An investigation by the US Department of Health and
   Human Services has already concluded that in New York federal
   guidelines covering the way that children were selected for trials,
   and the way consent should be properly obtained, had been broken. In
   terms of this important issue, the programme arguably performed a
   significant public service and its journalism was vindicated.

   The complaints you have asked us to consider concern not that central
   thrust. . .

   In other words, the BBC chose to award the most prominent space in the
   "apology" to what they have not been asked to consider. Only a buffoon
   or someone consumed by the feeling of power for power's sake would
   fail to notice the contemptuous rebuke dripping from every word in the
   initial sentence aping Bergman's word: In the event subsequent
   investigations have revealed this "administrative problem". . . .

   Having made it clear it is well aware altruism is not the dominant
   motive of the complainants, the BBC considers the different complaints
   in order. The most important are as follows:

   1. The programme unfairly claimed that conspiracy in the selection of
   the children between New York City's Administration for Children's
   Services, the Incarnation Children's Center, Catholic charities, the
   Columbian Presbyterian hospital and the National Institutes of Health
   effectively conspired to force helpless children of colour into
   inappropriate and sinister "experiments" when in fact they made life
   saving drugs already approved for adults available to children living
   with HIV/AIDS who were in the foster care system.

   This is a first attempt by Bergman to sneak in an attack on the
   central thrust of the movie, which she saw it wise not to to complain
   about openly, by making the BBC admit indirectly there was nothing
   unethical about the selection procedure. The wording is therefore
   highly loaded here as elsewhere. For instance, the original claim of
   "unethical" conduct is translated by Bergman into more colourful words
   such as "conspire" and "sinister".

   But of course the movie did not make these claims. The BBC accordingly
   circumvents the "conspiracy" part of the complaint by focusing
   exclusively on the "life saving drugs" part. They conclude the movie
   was one-sided in its reliance on well known rethinker Dr. Rasnick as
   the only scientific witness.

   I think the BBC is right. By failing to juxtapose Dr. Rasnick's
   commentary with a positive view of the drugs' purported benefits, the
   viewer is left unable to make a fully informed assessment of the
   merits of the trial, which then does become "inexplicable" if not
   "sinister". This is a pity because it could only have made the movie's
   message more powerful if it had featured the likes of John Moore
   extolling the virtues of force feeding children multiple black box
   labelled drugs on an experimental basis.

   2. In the second charge, Bergman again tries to smuggle in an attack
   on the "central thrust" of the movie by charging that,

   The programme unfairly claimed that children were used to test drugs
   with no regard for their welfare.

   But the BBC once again refuses to take the bait. They do NOT uphold
   the complaint, pointing out that the movie of course does not claim
   that "no regard at all" was shown for the childrens' welfare. The
   complaint is overstated to the point of absurdity.

   3. The programme falsely claimed that if parents or guardians objected
   to their children being used in tests, they lost rights in relation to
   their children.

   Once again the BBC has to point out to the complainants that no such
   claim was made for the trials themselves. What was said was in the
   context of parents who refuse to give children approved HIV drugs.
   However, the BBC agrees the distinction was not made sufficiently
   clear, which is why they uphold the complaint. Not much meat on that
   one in the sober light of day.

   4. The programme falsely claimed that denying medication to children
   with AIDS will improve their health while appropriate treatment will
   kill them.

   Yet another charge begging the question as "appropriate treatment" per
   definition does not kill the patient. The charge is set up to obscure
   the fact that in a drug trial where a variety of different
   combinations and doses are being tried not everybody will receive
   "appropriate" treatment, even accepting that these drugs may be
   appropriate in certain circumstances.

   Unfortunately, on this all-important point the BBC seems to give in to
   the AIDStruth pressure. The BBC acknowledges that the children
   followed in the movie immediately improved when taken off the drugs,
   but they choose to make a distinction between apparent health and
   "underlying health", claiming that the movie had not made that
   distinction clear. If there is a single outstanding reason for John
   Moore to celebrate this must be it.

   The BBC is in effect recycling the point introduced in their answer to
   the first complaint, that no mainstream HIV scientist was was featured
   on the program .- And it is indeed inexcusable the film makers did not
   think at this point to have a white-robed HIV priest explain the
   central Mystery of viral load and CD4+ count correlation charts.
   Nothing I can imagine would capture the bizarro world of HIV science
   more vividly than being solemnly assured the children were nearing
   their graves with every swing of the pendulum while watching them
   regain their appetite, energy, body-weight, joy of life.

   Several other complaints were brought none of which were upheld by the
   BBC. All in all more complaints were rejected than upheld. The BBC's
   conclusion was that the programme had been biased towards "AIDS
   denialist" by not giving voice to countervailing views. However, they
   also note that the main thrust of the film had nothing to do with
   these issues. It is doubtful the viewers would have reached
   conclusions any different from those they take away from the movie in
   its current form if the scientific mainstream had been better
   represented. The complaints against Guinea Pig Kids and the resulting
   "apology" are thus based on pure opportunism.