The case of the drug trial, the politician and the media

This page exists in an attempt to correct untruths spread by a politician and the media. It tells a tale that shows how vulnerable the individual is when targeted by a high-profile politician. Of further concern is the media's apparent inability to establish, or disinterest in a true account of the events. Perhaps most disconcerting of all, was the blatant manufacturing of lies by some media who claim to conduct investigative journalism. Sensationalism is the name of the game...

Enter Patricia de Lille

In a nutshell, the events concerned started in March 2000 when a South African politician, Patricia de Lille, informed the media that she uncovered "a nest of abuse and exploitation" in a clinical drug trial where Dr Mariëtte Botes (my wife) was one of the investigators. The media obviously carried these allegations - even internationally. Patricia de Lille described horror stories the "group of desperate patients" purportedly told her. About a month later she submitted written complaints on behalf of a few patients. However, it turned out that most of these patients didn't even know about the complaints and were, in fact, very positive about the treatment they were receiving. And two of the patients didn't even participate in the trial. It turned out that many of the patients thought the "complaints" they signed (written in a language they do not speak) were applications for financial support. And these "complaints" were then "sworn" at a police station far from their homes and without them being present... But for the media the story contained in the "complaints" proved to be too tempting and it became a case of not letting the facts interfere with a good story.

The media forge ahead

In June 2000 the New York Review of Books carried the story. In October 2000 MNet's Carte Blanche "exposed" Dr Botes on national television in South Africa. And, in September 2001, the "investigative journalism" magazine Noseweek carried yet another incarnation of the story. Almost all of these stories were also promptly distributed via Aids Dissident newsgroups and posted on Dissident web sites where they still remain. Needless to say, these stories all consisted of plain lies and a few facts used out of context. (The Carte Blanche version, for example contained 53 lies, errors or significant omissions - in other words one every 20 seconds... Noseweek, as another example, constructed a whole story they called "How many died in Trial FTC 302?" based on two patients that they knew did not participate in that trial - and even then got most of their 'facts' wrong...)

After months Carte Blanche finally admitted they were wrong and broadcast a correction in May 2001 - almost seven months after they originally broadcast their story. They were, however, adamant that they would not apologise for what they have done.

The facts determined

An internal hospital investigation found that Dr Botes followed correct procedures. Prof Sas Strauss, SC - arguably the best known expert of medical law in South Africa - was appointed by the University of Pretoria to investigate the matter and found that the allegations had no substance. The South African Human Rights Commission started investigating Patricia de Lille's allegations in 2000, but soon realised that the patients' accounts differed totally from Patricia de Lille's, and then ignored the "complaints".

A biography based on fiction

In March 2002 Patricia de Lille's biography was published (with her cooperation) and the same old stories were again told. Prof Strauss's report is dismissed as unsatisfactory and his knowledge as lacking. Long portions of the report are apparently quoted: apparently, because quotation marks are used, but the 'quoted' portions are usually assembled from many portions of sentences collected from throughout the report such that their meaning is changed in a significant manner. Most of the quotations are also taken from summaries of the complaints compiled on behalf of the patients; however these are presented as if they come from the findings of the report. In another twist of the truth, Patricia de Lille recounts how she visited one patient the night before she died. (Incidentally, this is a patient who did not participate in the drug trial, but formed the main patient character in the stories in the New York Review of Books, Carte Blanche and Noseweek.) In Patricia de Lille's account, she took the patient juice the night before she died. But she obviously does not know where or when the patient died... These are just some examples of the manner in which the story is told over ten pages in Patricia de Lille's rather short biography. It is rather pathetic if there are not enough (true) facts in someone's life to write about. Interestingly enough the biography carefully explains what an Aids Dissident is and cites correspondence with them as one of the sources of her information in this case...


In an interesting twist, the media reported in May 2003 that some of those whose HIV status was exposed in the De Lille biography, were suing the publisher (Spearhead) and author (Charlene Smith) of the biography, as well as Patricia de Lille, because they did not want their HIV status made public. Unfortunately, the gullible press again swallowed Patricia de Lille's false account of the events and reported the story about the trial yet again in blissful ignorance of all investigations conducted into the matter. One cannot help but reflect on the irony of these events:

  1. The drug that made this particular trial 'controversial' was Nevirapine - the same drug that Patricia de Lille wants to be provided to many South African HIV patients as soon as possible. (Also note that it was the political aspects of Nevirapine that made it controversial here - not the pharmaceutical issues.)
  2. Patricia de Lille clearly did not obtain the patients' informed consent before making their names public - precisely what she falsely accused others of.

Setting the record straight

Apparently the press is not interested in publishing stories about doctors who do their work well. And, to the reader who does not know the facts, the stories may seem plausible. It seems that we have to tell the true story to attempt to repair the damage that was done - hence this page.

To get a true impression of the events, consider one of Prof Strauss's comments in his report: "The picture that emerged of Dr Botes in the course of this inquiry is that of a dedicated doctor who, in collaboration with other medical experts, is in the forefront of medically combating, to the best of her ability, the terrible epidemic of HIV that has hit South Africa." Unfortunately, South Africa is a place where politics in the period concerned left little place for such doctors.

Living in glass houses

While the trial was properly conducted, and therefore not sensational in any manner, a number of related issues turned out to be quite interesting - perhaps even worthy of a (true) news report or further research.

Take some paragraphs of the Strauss report, for example: In paragraph 2.5.4 Prof Strauss reports a patient's evidence that in ``April she [the patient] met Father Johan again and `they told us that there is a meeting in Atteridgeville'. She went to the meeting. Ms Patricia de Lille was there as well as some other people that [the patient] did not know. There was also a doctor present at the meeting. At the meeting she [the patient] was told that `they would make a letter to show that the tablets had a problem which caused me to undergo an operation.' They were also told by Father Johan that Dr Botes should pay her ([the patient]). I was confused and frightened at the meeting. I decided I should agree. I tried to explain to him that I had no problem. That in fact at the time I felt physically stronger. He [Father Johan] wrote what he wrote. He gave me a paper to sign which I did not understand.' " (Emphasis added.) This became one of the 'complaints' later submitted by Patricia de Lille on behalf of the patient.

In paragraph 3.6.2 Prof Strauss comments on this: "It is true that very puzzling questions arise in one's mind about the circumstances leading to the signing of a document by [this patient]". In another case he also comments on the meeting on 27 April 2000: "In regard to the events, which took place on that date, I am left with the same sense of puzzlement recorded in paragraph 3.6.2 above." And, in paragraph 3.8.4 he makes a similar remark based on the testimony of a third patient. Note, however, that his terms of reference unfortunately did not include investigation of allegations made by the patients about these events and (in each case) he points this out. For example, in paragraph 3.6.2 he says ``but I deliberately refrain from making any finding in this regard, having not had the benefit of hearing an explanation by the person(s) who allegedly convened the April 27 meeting and who drafted the statement signed by [the patient].''

Take Carte Blanche, as a second example. The correction of facts were supposed to be published on their website with the other stories broadcast on the day the correction was broadcast. However, due to a "technical oversight" it only appeared days later. According to the settlement, Carte Blanche was supposed to have provided Dr Botes with a copy of the correction on their letterhead. However, this was only faxed after months of further action to obtain it. And, when it was pointed out to them that they were supposed to provide a copy on (original) letterhead, they hired a lawyer to inform us that they have misplaced the original and was, therefore, unable to provide the original. Since it would have been very simple (and indeed much cheaper) for them to reprint the correction on a new letterhead, one can only wonder about their motives for going to such extreme steps to not provide it. Let us ignore what such technical oversights and lost correspondence say about the operation of Carte Blanche. The more important lesson from this for others who submit complaints to the Broadcast Complaints Commission of South Africa, is to insist that a settlement should be made an order of the Commission when a broadcaster suddenly wants to settle a complaint. Without this happening, one cannot ask the Commission to enforce a settlement and one's only course of action would be to take the broadcaster to court - a costly exercise that is probably not worth the effort.

The third example of issues that warrant further investigation is the basis of knowledge used by Aids Dissidents. Let us ignore those who actively lied about the events in a purported bid to correct the 'untruth' of Science. For the moment, focus on those Dissidents who distributed the story, published it on websites and commented on the story without any apparent doubt that the story had to be true. Given that the Dissidents primary claim is that they are able to look (and think) beyond the hype of the establishment, it was astonishing to see how easily they were fooled by a story that supported their stance. (This reminds one of the implications that the paper written by Alan D Sokal and published in 1996 in Social Text held for others critical of Science; it differs from the Sokal paper in one major respect: most of these media stories were generated by authors who are apparently accepted by Dissidents as one of them.) In more formal terms: what is the epistemological basis for Dissidents' claim to knowledge? There seems to be sufficient evidence that they use the same epistemological basis that Conspiracy Theory in general uses. This basis rests on two assumptions: (1) If one is aware of the conspiracy, one is able to distinguish between fact and fiction; and (2) the Conspiracy Theory is a general theory in that it (a) explains data that suits the Conspiracy Theory as being objective, and (b) explains data that refutes the Conspiracy Theory as being manipulated by the conspirators. (The name of the philosopher who first made the point about the generality of Conspiracy Theory escapes me at the point of writing this.) A cursory review of the literature suggests that the epistemological basis of Conspiracy Theory has seen little true philosophical inquiry, and this might indeed be an interesting field of study for someone interested in the topic. (I would be very interested to be pointed to any published work on the topic.) Clearly, pointing out this link between Aids Dissidents and Conspiracy Theorists rests on a generalisation. However, until those Dissidents who use a different basis for truth claims not only make their basis clear, but also actively weed out untruths accepted as gospel in Aids Dissident circles - in other words, until Aids Dissidents are as critical of one another as Scientists are, even as imperfect as the system is - Aids Dissidentism cannot hope to be taken seriously.

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Last update: 4 December 2003