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NEWS
AIDS science politics, Financial Mail, 18 May 2007

By CHARLENE SMITH

In 2000, five HIV-positive women died during clinical trials at Kalafong hospital, Pretoria. Health minister Manto Tshabalala-Msimang stopped the trials.

Other patients experienced vomiting, rashes, fever, bleeding sores, dizziness, muscle spasms, fits, diarrhoea, mood swings and severe abdominal pain. Helen Epstein, a medical doctor and HIV specialist, wrote in the New York Review of Books that "the patients' complaints were varied and strange and many did not correspond to any known side-effects of antiretroviral drugs. It was certainly possible that these patients were not, after all, on a trial of antiretroviral drugs... Perhaps they were entirely mistaken about being on any sort of trial, or perhaps they were on a different trial altogether."

In my book about Patricia de Lille, the subject of a recent constitutional court ruling, I focused part of one chapter on concerns about those trials. I wrote: "Nowhere else in the world are there more clinical trials into the treatment of HIV than in SA and yet most of the drugs, for which South Africans donate their bodies as human guinea pigs, will never be available in the communities in which they live."

Prof Ames Dhai, who heads the Steve Biko Centre for Bio-Ethics at the University of the Witwatersrand Medical School, says clinical research into HIV has a turnover of some R3bn/year. Doctors earn around R500+ per patient on a clinical trial each time the patient visits and patients receive R150/visit.

Prof S A Strauss, a retired constitutional lawyer, held an inquiry into the trials at the behest of Pretoria University. I wrote in the book: "Strauss' knowledge of HIV and drug performance was lacking and he appears to have consulted no HIV specialists... questions about the ethics of the trial process remained unanswered."

Strauss criticised the highly technical consent forms Dr Mariette Botes, who headed the trial, had the patients sign. Some patients were illiterate and claimed they could not speak English, including the plaintiffs in the constitutional court case.

Jonathan Berger of the Aids Law Project (ALP), which brought the case against me, De Lille and New Africa Books and in which his brother acted as advocate, wrote in the FM on May 4 that the case was "about scientific progress and the danger of a misguided crusader". He said "three very ordinary poor people" brought the action against three "powerful people". Not quite. The case was motivated by Botes and driven by one of the wealthiest Aids organisations in the country, the ALP. Aids is a major industry in SA. The Treatment Action Campaign, as an example, has an annual budget of just under R50m.

It's interesting that the ALP defended a clinical trial in which five people died. It's also interesting that though a university published HIV-positive participants' names and sent the report with no confidentiality cautions to at least two journalists, De Lille and others, the ALP brought the action against De Lille, New Africa and me. Could it be that we ensured more press interest than a university and an aged law professor? It is, after all, press coverage that keeps donor funding coming.

I've written about HIV for 22 years. Rape survivors now get post-exposure prophylaxis globally as a result of my efforts. Why would I risk an excellent reputation if I did not believe that publication of those names by a university and a law professor was lawful? Especially after I'd thrice contacted the university, twice Strauss and twice Botes for clarification, which all denied me.

Berger wrote that what is behind the case is a "far more interesting story than first meets the eye". I could not agree more. Perhaps it is, as he suggested, "all about the money".

Smith is a freelance journalist

Charlene Smith
Johannesburg
South Africa
+27 82 495 8716
+27 11 646 7637
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