Toronto Star doesn’t understand clinical trials

pic.cutlineThe Toronto Star has good medical reporters, but none of them wrote the front-page story in Saturday’s paper that showed an almost-total lack of understanding of clinical trials.

I know better than to judge an entire story by a headline — or in the case, a cutline (commonly known as a caption) on a Page One picture. I hoped this cutline (newspaper-speak for the text below a photo; a “caption” is the photo’s “headline”) was just meant to draw me into the paper, where the full story actually appeared on page A18:

“Adrienne Lotton, a 34-year-old veterinarian, was accepted into a drug trial to treat her advanced melanoma. But she landed in the control group of patients, who didn’t get the drug. Should a life potentially hinge on a random selection?”

Lotton, according to the story — which actually appears on page A18 and bears the unfortunate headline “Cobourg patient drew the ‘short straw’ in cancer drug trial” — has done all the right things: she’s a new veterinarian, she organizes food drives, she goes to the gym. But she still has Stage 4 lymphoma melanoma.

“And her hopes of avoiding death or buying more time are tangled in the web of medicine and moral quandary that surrounds access to developmental drugs,” the story begins. “It’s a wrestling match between the interests of one patient and many; between scientific rigour and desperate hope; between benefit and risk; ultimately, between the chance to live and certain death.”

The full story gets around to quoting experts about the raison d’etre for clinical trials: Dr. Janet Dancey, who leads the High Impact Clinical Trials program at the Ontario Institute for Cancer Research, and Dr. Françoise Baylis (PhD), professor and Canada Research Chair in Bioethics and Philosophy at Dalhousie University.

But then the issue morphs — probably barely perceptibly to the untrained eye — from drawing the “short straw” in a clinical trial, to being unable to convince a pharmaceutical company (Bristol-Myers Squibb) to release an investigational drug (nivolumab) on a compassionate basis.

Being randomized to the control group in a clinical trial is seen as drawing the ‘short straw.’

The writer (Jessica McDiarmid, a “city reporter”) then turns to Arthur Schafer, director of the University of Manitoba’s Centre for Professional and Applied Ethics, who, she writes, says that patients should have the choice to access experimental drugs.

“But he cautioned that, usually, drugs aren’t the miracle people hope for. They may only add a few weeks or months, and side effects can render that time ‘wretched,’ ” the story says.

“ ‘Many patients and their families think, and many people in society think, that if you’re dying and your prognosis is very bleak, then you have nothing to lose. I don’t agree,’ says Schafer. ‘If you’re taking aggressive therapy . . . your last days, weeks or months of life are not spent quietly and in a dignified way, talking to your family, saying goodbye, putting your affairs in order. What you lose is an opportunity to die well.’ ”

But then the waters get muddied again: Lotton is trying for another clinical trial and, in the meantime, hoping that BMS will relent and release the drug.

The story concludes with Lotton’s mother saying she’ll do anything to save her daughter.

“But,” McDiarmid writes, despite all the explanations from the pros, “the best chance depends on a pharmaceutical company.”~TM

3 responses

  1. Sigh. Sometimes it feels like an uphill battle, trying to write about science and medicine. It’s bad enough when readers don’t seem to get it, but when other reporters perpetuate misunderstandings, you just have to throw your hands in the air. Pour a glass of wine and give up.

    1. Thanks Anita. I messed up on this one too – I first said she has melanoma (correct), and then lymphoma (not – but has been corrected).

  2. Sadly, Adrienne passed away this past Wednesday (Aug 27, ’14) …..

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