The Whistleblower Who Inspired A John Le Carré Novel - What Your GP Doesn't Tell You Podcast
Dr Nancy Olivieri reveals what happened when she raised concerns about the drug deferiprone
The latest episode of What Your GP Doesn’t Tell You is now available on Apple, Spotify and other podcast platforms. You can sign up to the podcast mailing list at What Your GP Doesn't Tell You. This is a fortnightly podcast, the next episode is due on Tuesday 8th November.
This opening episode of season two of the podcast, tells a story so extraordinary that the best-selling spy writer John Le Carré used it as the inspiration for one of his novels. Indeed, in the foreword to his book, he wrote: “I came to realize that, compared to reality, my story is as tame as a holiday postcard.”
The central character in the true-life tale is whistleblower Dr Nancy Olivieri, who Le Carré met when he came to visit her in Canada:
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Olivieri had little idea about the decades of legal action, vitriol and intrigue that would follow when she first raised concerns, while working at the Hospital for Sick Children in Toronto, during a trial about the effectiveness of a drug – deferiprone. She was using the pharmaceutical to treat thalassemia – an inherited form of anaemia. Thalassemia patients need constant blood transfusions which leads to iron overloads so have to take a drug to reduce this, as otherwise these levels would kill them.
Almost immediately the drug company Apotex, who were part funding the trial, threatened Olivieri with legal action if she mentioned her concerns, in this extract she explains what the letter she received said:
Despite these warnings, Olivieri informed both patients and regulatory authorities.
The result of all this, was the drug company shut down the trials in 1996. Olivieri was fired from her role as scientific co-chair of the European trial. A subsequent hospital inquiry suggested she was seriously at fault and referred her to the disciplinary committee of the Canadian College of Physicians and Surgeons. Olivieri was accused of doing illicit liver biopsies. At the time, liver biopsies were the only way to accurately measure iron levels in these patients at risk of iron overload:
A further inquiry by the Canadian Association of University Teachers would also find in Olivieri’s favour, but despite this the legal battles continued and Olivieri’s career and reputation would be badly damaged.
In 2009, Olivieri was fired from her role as Director of the Hemoglobinopathy Program at the University Hospital Network in Toronto, the UHN. Subsequently she discovered from 2009 onwards, deferiprone was being given to treat some of her former patients with thalassemia. At this point, the drug was unlicenced in Canada and the only grounds on which such a pharmaceutical can be given is either as part of clinical trial or as a part of a special access programme, as Olivieri explains:
Olivieri’s PLOS ONE paperreported 50% of the deferiprone patients in the data she had access to had body iron that exceeded the threshold for fatal complications, and that during exposure to the drug, diabetes was diagnosed in 17% of patients and liver dysfunction in 65% of patients.
As we explore in the podcast, another study by Binding et alpublished six months later in what allegedly is the same patient group, didn’t report these findings. While the Binding study looked at 71 patients in the group taking deferiprone, Olivieri's study examined 41 patients taking the drug. But two key points remain unclear: why is there a discrepancy in the adverse events reported in the two papers and on what basis was the drug deferiprone prescribed to these patients?
Deferiprone was licenced in Canada in 2015. The Health Canada website does not include the adverse events that Olivieri reports in her PLOS paper.
Dr Nancy F. Olivieri is a professor of pediatrics, medicine and public health services at the University of Toronto, a senior scientist at Toronto General Hospital and the executive director of Hemoglobal®.
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