I know what it’s like for patients to tune in when they hear news stories about a condition they have.
I have a form of spinal arthritis known as ankylosing spondylitis (AS). So when The Globe and Mail newspaper published a story referring to “a miracle medicine” for AS, I perked up. Hmmm, I thought. I’m pretty plugged into health care news and I’m pretty plugged into my own situation. So what’s up?
What was up was some unbalanced hype.
The story profiles one man who went from “bedridden to Ironman” after the use of the injectible drug Enbrel (etanercept).
“The effect was miraculous,” the story beamed. After severe pain, job disability and depression, the man was was downhill skiing and running a five-kilometer race.
The story did cite some evidence:
“According to (a) study, published recently in the medical journal Arthritis and Rheumatism, patients on TNF-inhibitors were 70-per-cent less likely to deteriorate than those taking other medications. Those who waited 10 years or more to begin such treatment were far less likely to respond.
“Before this paper,” says (the lead researcher), “either you went undiagnosed for years, or the GP did not take it seriously, because there was no treatment except over-the-counter anti-inflammatories. Now, we know that treatment with biologics makes a difference.”
But it’s what the story didn’t tell us that you may find most intriguing, possibly even most important.
One reader left this comment online: “Story leaves out the small detail that Enbrel costs $20,000 a year and most provincial drug plans don’t cover the cost.”
That’s pretty important.
How about potential harms of the drug? Nothing in the story on those, either. The known side effects can be ugly, including:
The story didn’t independently evaluate the quality of the evidence. It didn’t mention that this was not a randomized clinical trial, and that the researchers admit the limitations of “potential unmeasured confounders and potential biases.”
The story didn’t quote anyone without a conflict of interest – only those touting their own work. And the story didn’t mention that – in the same issue of the journal where the cited study appeared – there was an editorial that said “The controversy continues.”
Controversy? What controversy? The headline said this was a “miracle”!
Indeed, in the published journal paper, the researchers only concluded, “Treatment with TNFα inhibitors (like Enbrel) appears to reduce radiographic progression in AS patients, especially with early initiation and with longer duration of followup.”
The editorial stated that:
So the editorialist didn’t see a miracle. Didn’t see conclusive evidence. Didn’t see an ideal methodology. But saw a definition of evidence – the whole basis of the study – as questionable.
But, you see, that’s what you get when you seek independent perspectives, as the journal did in seeking an editorial comment.
The newspaper didn’t do that. It didn’t evaluate the quality of evidence. It’s not clear that the reporter read the journal article. And it seems he missed the editorial as well.
So, even though my ankylosing spondylitis is still there, I’m going to pay more attention to the cautions than to the miracle proclamations. Newer is not always better.
P.S. The way things are in online news these days, it should not be surprising that Amgen, maker of Enbrel, was able to place an ad – a big one – bigger than what I’m displaying here – right next to the ad-like news story for the drug. Caveat emptor.
Addendum on November 22: The public editor of The Globe and Mail agrees with our criticism in her online assessment, “Careful what you call a ‘miracle.’ ”
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