Whistleblower’s decades long fight to save patients from dangerous research

In 1982, while still a research fellow at Toronto’s Hospital for Sick Children, Nancy Olivieri began working with children with the common inherited blood disorder thalassaemia major, who are at risk of toxic iron overload as a result of monthly transfusions. In 1988 and 1992 Olivieri launched two clinical trials supported by the Medical Research Council of Canada to evaluate the effectiveness of a new drug, deferiprone, in removing body iron. Early results were promising,1 but during extended exposure to the drug concerns arose of ineffectiveness and toxicity.

Raising her concerns with her funders, Olivieri wanted to help protect the patients by informing them of the findings. But she was threatened with legal action by Barry Sherman, then chief executive of the Canadian drug company Apotex, which makes deferiprone and which had recently begun to provide partial funding for her second trial. Both trials were also abruptly terminated, after invocation of a “confidentiality clause” in the trial contract that had been approved by the hospital’s research institute.2 Olivieri published her findings in the New England Journal of Medicine.3

Thus began a near 30 …