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The Drug Trial

The Drug Trial

Nancy Olivieri and the Science Scandal that Rocked the Hospital for Sick Children
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Prologue

In August 1998, a story about a doctor named Nancy Olivieri grabbed headlines in Toronto. The articles stated that Olivieri had discovered serious problems with an experimental drug manufactured by Canada’s largest pharmaceutical company, a Toronto-based generics manufacturer called Apotex. The drug at the centre of the scandal is a white tablet called L1, or deferiprone, intended for use by patients with the inherited blood disorder thalassemia. Olivieri planned to tell patients about the problems, as required by her hospital. But Apotex played dirty pool, ejecting her from their research program, cancelling the study she was running to test the drug and threatening her with court action if she went public. The scandal was in the news for months. And for four years, legal charges and personal accusations flew back and forth between Olivieri, the company and Toronto’s Hospital for Sick Children, where Olivieri worked.

Parts of this story are well known. The CEO of the drug company Apotex is a billionaire alumnus of the University of Toronto, where Olivieri is a professor. At the same time that Apotex was funding Olivieri to test its drug on patients in a clinical trial, he was offering to put scores of millions toward university research facilities and teaching hospitals such as the Hospital for Sick Children, where Olivieri ran the treatment program for patients with thalassemia. The hospital and the university didn’t step in to defend Olivieri against the company’s threats when they arose. Determined to tell her patients and scientific colleagues about her discoveries, she became a whistleblower, publicly accusing Apotex of suppressing her discoveries. She also blamed her home institutions for allowing it to happen because they didn’t take up her cause. News of her plight shocked academics, and they sprang to her support. She has won medal after medal for courage.

In 1998, her hospital sponsored its inquiry to figure out what had happened; two years later, Canada’s national organization of university faculty associations conducted its own. But the inquirers lacked the power of the coroner or the courts: they couldn’t compel disclosure, ensure confidentiality or allow for appeals. John le Carré spoke to Olivieri and spun a fictional account of the events. Casting her as Lara from Leningrad, he wove her into The Constant Gardener, his recent novel about the human costs of Big Pharma’s corporate greed. Yet the full story of the science scandal that rocked Canada is not as convenient as fiction, and it turns out to be far more shadowy than le Carré imagined.

This is a complex story about medical research and the rules that govern it. Those rules are science’s moral code, the standards scientists live by and train under. Here are a few examples: "Don’t lie about your work." "Don’t steal someone else’s work and claim it’s your own." "Report your findings; don’t bury them." The rules should be easy to follow, but in the fiercely competitive world of modern medical science, they’re not.

In studies of new drugs, the research involves patients, so there are additional strictures: "Don’t ask patients to volunteer for an experiment that’s likely to harm them." "Report the serious side effects of an experimental drug." "Allow patients to drop out of an experiment at any time." The rules for research on humans are discussed in numerous places — the Belmont Report, the Declaration of Helsinki, the Nuremberg Code, National Institutes of Health (NIH) regulations, Food and Drug Administration (FDA) regulations, Canada’s Tri-Council guidelines. They’re supposed to be enforced locally by hospitals and universities, and if violations are widespread, federal authorities at the FDA, the NIH or Health Canada can get involved, even to the point of shutting down research at a university.

Yet the rules for doing science aren’t well understood, and newer rules about how to conduct research in an era of public-private partnership are still being hammered out, largely as a result of fiascos such as the one I am about to explore. The debacle of Nancy Olivieri and the pill to save thalassemia patients revealed every crack in the system. It is emblematic of what happens when the standards for scientists’ behaviour and the lines of institutional accountability are unclear.

The saga also unfolded against the background of an ongoing debate over drug research. Those who want greater protection from risky drugs point to innocent victims killed by dangerous prescriptions and lay those deaths at the feet of profiteering drug companies or unwitting drug agencies that approved products too quickly. On the other side, people with rare diseases for which few treatments are available demand the right to decide for themselves how much risk to bear, and urge drug agencies to speed the approval of products in the pipeline.

But at its core, this is a story of scientific rivalry and revenge. "Good scientists will tell you that being a good scientist requires a very competitive spirit in this day and age," said a sociologist of science, Harriet Zuckerman, in the mid-1980s, around the time that L1 was discovered. "It isn’t really clear what the causal relationship is. Maybe you have to be competitive in order to succeed, but maybe succeeding also helps you be competitive."

In the story of Nancy Olivieri and L1, highly successful scientists fought intensely for predominance over a tiny territory — the field of drug treatment for thalassemia. A pharmaceutical company got into the mix and the result was the scientific version of a Greek epic, with researchers battling over ideals, such as the well-being of patients and the integrity of their work, while simultaneously
competing against one another for power and position. At first, Olivieri was the epic’s heroine, telling the secrets of how her science had been thwarted by her enemies. The ferocity of the drug company’s retaliation caught and held our attention. The truth, however, remained obscured until much later, when others emerged to tell the rest of the tale, speaking mostly in whispers to one another. To disentangle a whistleblower’s moment from the legend that’s grown up around her, we’ll need to bring some of those other conversations into the open. Then we may begin to understand what happened here.

From the Hardcover edition.

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This May Hurt a Bit

This May Hurt a Bit

Reinventing Canada's Health Care System
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also available: Paperback
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Canada, as a country, has always been somewhat star-struck. Maybe it’s because Canadians are, as a whole, so gosh-darned polite and humble. Or maybe it’s because we have such a massive inferiority complex we only feel validated if someone bigger and more important than us, say, someone with a huge international profile like U.S. senator and former presidential candidate Bernie Sanders, decides they need to start paying attention to what we’re doing.
In the case of Senator Sanders, he made a much-ballyhooed trip to Canada in late October of 2017 at the invitation of Dr. Danielle Martin, vice-president of medical affairs and health system solutions at Women’s College Hospital in Toronto, and Kathleen Wynne, premier of Ontario. Dr. Martin, who became a YouTube sensation in 2014 by taking on a Republican senator during a widely publicized appearance before a partisan U.S. Senate committee looking into the Patient Protection and Affordable Care Act (a.k.a. Obamacare), had recently published a book, entitled Better Now: Six Big Ideas to Improve Health Care for All Canadians, in which she suggested there was nothing seriously wrong with Canada’s health care system that a Liberal dose of socialism (i.e., boatloads of money taken from the pockets of unsuspecting taxpayers) couldn’t fix. Not surprisingly, the good senator, himself a dyed-in-the-wool socialist, was quick to latch onto Dr. Martin’s nonsense.
Like something out of Mr. Smith Goes to Washington, or perhaps a strange and baffling episode of The Twilight Zone, we were treated to scene after scene of Senator Sanders being taken from one health care centre to the next — events all carefully orchestrated so that the beaming senator could witness one miracle after another. I couldn’t help thinking how terribly appropriate it was that this truly naive and easily led visitor from the south had chosen to make his pilgrimage to Canada so close to Halloween. It was as if Dr. Martin and Premier Wynne were taking young Bernie door to door, smiling like Cheshire cats as he received treat after treat, which the little boy squirrelled away in his satchel so he could take each piece of candy out and savour it once he got back home.
Watching all this unfold, hour after hour, day after day, thanks in part to our ever-accommodating media, who apparently are incapable of asking probing, tough questions, I began to feel sorry for Sanders. Here was a man who’d built a reputation as something of a straight shooter, that rare breed of politician who actually cared about the truth, one who said what he meant and meant what he said. Sadly for Senator Sanders, he was being showered with “treats” by two used-car salespersons, who appeared to have no qualms about “tricking” the senator into believing that Canada has one of the best, if not the best, health care systems in the world. Never mind the shortages of doctors, nurses, and pharmacists. Never mind that many of our emergency departments are now operating well above 100 percent of their capacity, which has resulted in patients being stacked up on gurneys like so many planes on a runway, waiting for takeoff. And for God’s sake, whatever you do, don’t you dare mention wait times. After all, being a child of the 1960s, Bernie is not a young man anymore. We don’t want to give him a heart attack.
If I’d been asked to meet with Senator Sanders, here’s what I would have told him: “In order to know where you’re going, you have to know where you’ve been.”
Now, lots of people think they know how Canada’s health care system came into being. “Tommy Douglas, the former premier of Saskatchewan and one-time leader of the New Democratic Party,” they’ll tell you, “was the father of Canadian medicare.” They’re wrong, but that’s what pretty much everyone in this country has grown up believing. So much so that in a poll conducted by the Canadian Broadcasting Corporation in 2004, Douglas was named the “Greatest Canadian.” Even more believe that they, and they alone, know what’s in the Canada Health Act. They’ll swear up and down, for instance, that one of the five principles of the act says medicare must be publicly funded. In fact, it says that medicare must be publicly administered. There’s a big difference. This has resulted in Canada’s health care landscape being littered with so much unhelpful rhetoric it’s a wonder anyone can see the forest for the trees.
To help cut through some of this clutter, I thought it might be a good idea to look back at how we came to find ourselves in the mess we’re in when it comes to health care. To this end, I’m going to focus on five things I believe were seminal in the building of our health care house of cards here in Canada, where it’s become only too easy to fool ourselves into believing we do indeed have the best system in the world, even though the truth is far from that: Tommy Douglas and the Saskatchewan experiment; the Hall Commission and the introduction of medicare; the Canada Health Act; the Savings and Restructuring Act; and the Commitment to the Future of Medicare Act.
Starting with Tommy Douglas and the Saskatchewan experiment is something of a “no-brainer,” of course, even if Douglas really wasn’t medicare’s father. After all, without this bold early attempt, it’s entirely possible the rest of Canada’s provinces might never have been convinced to dip their collective toes into the healing waters of medicare. Likewise, a closer examination of the mid-1960s commission overseen by Justice Emmett Hall is in order, if for no other reason than to show there were just as many Canadians against the creation of a national health care system as there were in favour. Which brings us to the Canada Health Act. While many feel the Canada Health Act has been something of an albatross around our necks, the very thing that’s been stifling innovation and creativity and ultimately pulling us down these past thirty-plus years, the fact remains that its introduction was, without a doubt, one of the most important moments in our country’s history. Finally, I’ll take a look at two pieces of legislation that had big impacts here in Ontario when they were introduced and are still affecting our health care system today, as other provinces (Alberta, Quebec, and British Columbia, in particular) have gone on to bring forward their own versions of the bills. The Savings and Restructuring Act was brought in by the Mike Harris Conservatives in 1996, as part of their Common Sense Revolution. The Commitment to the Future of Medicare Act was the work of George Smitherman, Premier Dalton McGuinty’s first health minister, after the Liberals defeated the Progressive Conservatives in 2003. In some ways, both of these pieces of legislation have had an even bigger impact on the health care environment in Ontario, and, indeed, in the rest of Canada, than even the Canada Health Act.

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Moving Aboriginal Health Forward

Moving Aboriginal Health Forward

Discarding Canada’s Legal Barriers
edition:eBook
also available: Paperback
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Caring for the Low German Mennonites

Caring for the Low German Mennonites

How Religious Beliefs and Practices Influence Health Care
edition:Paperback
also available: eBook Hardcover
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