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Prof authors page-turner on scandal

Published: June 30, 2005

By LOIS BAKER
Contributing Editor

A UB physician has turned the inside story of a medical brouhaha in Canada involving sick children, a controversial treatment for the blood disorder thalassemia and the pharmaceutical company that makes it into a nonfiction best seller.

The battle between whistleblower Nancy Olivieri, a dedicated physician at Toronto's Hospital for Sick Children; Apotex, Canada's largest pharmaceutical company and the maker of a drug called L1 to treat thalassemia; and some of Olivieri's colleagues at the hospital and University of Toronto made headlines around the world in the 1990s.

Miriam Shuchman, the author, is a clinical assistant professor of psychiatry in the UB School of Medicine and Biomedical Sciences, who teaches medical ethics at the university. She also is a medical journalist and, in that capacity, helped break the Olivieri story in the Canadian media.

Her book, "The Drug Trial: Nancy Olivieri and the Science Scandal that Rocked the Hospital for Sick Children" (Random House Canada, 2005), probes behind the front-page stories to paint a full picture of the players, their motives and the fallout and repercussions from the scandal.

Jerome Kassirer, former editor of The New England Journal of Medicine and now a distinguished professor at Tufts University School of Medicine, commented in a note to Shuchman regarding the book: "I finished your book yesterday afternoon. I think it's terrific. It's a disappointing tale of hype, colossal egos, blind followers, flagrant conflict of interest, trickery, substitution of PR for facts, made-up stories, destroyed careers and sadly of all, denial of a life-saving drug for needy patients...You've done an important service."

Thalassemia is an inherited blood disorder in which the hemoglobin molecule, which carries oxygen to the tissues, is abnormal, requiring frequent blood transfusions to supply enough normal hemoglobin. Multiple blood transfusions, in turn, cause a buildup of iron in the body, which damages the liver and heart. L1 was a new drug designed to remove excess iron from the body. It was being tested as an alternative to the only other treatment available, which required frequent painful injections.

Shuchman says she wrote the book because the L1 controversy was the biggest science scandal to hit Canada in decades.

"I was in the right place at the right time to cover it and even to break the story, as a freelancer for CBC Radio," she says. "But the scandal soon turned into a disaster-a contentious political battle between a doctor, a drug company and a hospital, where the parties involved became so polarized that they barely spoke to one another while the patients with the disease continued to suffer because they had to endure a difficult and painful treatment."

"The Drug Trial: Nancy Olivieri and the Science Scandal that Rocked the Hospital for Sick Children" was on the Amazon.ca "Top 100" list for three weeks after its release in early May.

Shuchman studied at the University of Chicago as an undergraduate and earned her medical degree from the University of Connecticut. She completed her psychiatry residency at Massachusetts General Hospital and obtained fellowships in ethics at Dartmouth-Hitchcock Medical Center and the University of California, San Francisco, where she was a Robert Wood Johnson Clinical Scholar.

In addition to her appointment in the Department of Psychiatry, Shuchman is affiliated with the Center for Clinical Ethics and Humanities in Health Care at UB.

Shuchman lives in Toronto, where she was a columnist for The Globe and Mail for five years. She also has been a medical commentator for National Public Radio's "Weekend Edition Sunday" and has written columns for the New York Times Magazine and the Los Angeles Times Magazine.