A journalist who covers medical matters of the heart grabbed my attention on the Fourth of July. In The Voice of the Patient: Time To Bring Out the Muzzle?, Larry Husten at Forbes’ Cardiobrief blog, insinuates that the women who spoke at the FDA’s Avastin hearings are simpletons.
In his short strip, Husten skips the possibility that the testifying patients might understand science. He dismisses their familiarity with Avastin. He ignores their potential informational value as bona fide outliers, and jumps to this killer conclusion:
…When reporters cater to these type of people they not only foster fuzzy thinking, they encourage a mob mentality that tears down any semblance of rationality or any possibility of intelligent discourse.
Medicine, of course, is all about the patient. But that doesn’t mean that every patient is right, or deserves a public voice, or that uncritical journalists should assist them in metastasizing their views.
This is rare language in a business journal:
Phrases like “these type of people” and “mob mentality” typically reflect fear of others, based in prejudice — the opposite of reason and science, to which the author aspires. Likening patients speaking out to “metastasizing,” a term normally applied to the lethal movement of cancerous cells, reveals a disturbed view of people with illness.
The Forbes Headline, in which the author and editor, or both, contemplate using a “muzzle” to silence patients, does not approach the norm in health care journalism, or even opinion-writing.
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Husten’s hostility does indeed leap off the page. Maybe someone should tell him that that the 19th amendment hasn’t been repealed…
Even the spray painted phrases on a viaduct or those scrawled on the walls of a gas station bathroom can’t touch the sheer nastiness of “metastasizing their views.”
Yeesh.
Thanks for bringing this article to our attention, Dr. Elaine. I’ve passed it on to my support at ACOR. That hearing should be glad they didin’t have some of our members there. Now that would have been a show.
Thanks Emily. Yes, ACOR should definitely get on this, and e-patients/SFPM. It’s not just about Avastin -
The aggressive language of this ” journalist” is uncalled for. And to use the word “metastasizing” as some kind of clever metaphor is offensive and quite disturbing. No matter ones views on Avastin this kind of writing is just reprehensible and the author loses his points in the vicious vitriol.
This was so wrong in so many ways, I can’t believe he was stupid enough to put it out there.
I’m not a cancer patient and have no stake in the Avastin discussions whatsoever. I make that point so you can understand my neutrality in this conversation.…
It doesn’t matter what Larry Husten says about Avastin. His story isn’t about Avastin. His position — his opinion — is about “the excessive role of patients in news stories.” The only reason he mentions Avastin is because that’s the FDA drug review that made him realize that he thinks patients should be silenced.
THAT’s what he should be swift-kicked-in-the-backside for. Clearly he has never been in a situation that required he know something about his medical problem. Clearly he has never suffered the indignity of being dismissed by a provider who couldn’t communicate or, even worse, the devasatation of a medical error. Lucky him — in the short term.
But — someday he will realize the importance of taking command of his own healthcare decisions — at which point his own words will come back to haunt him. Someday his partner’s life will be threatened with an illness he must learn about, or he himself will be diagnosed with something frightening — and he’ll realize its incumbent upon him to learn everything he can.
Today Larry Husten doesn’t live on the same planet as empowered patients. Someday he’ll be embarrassed by these words. At that point, we who have walked the walk before him, will be here to help him become the expert in his own malady. We — as knowledgeable patients — will support his rude, but necessary, awakening.
Trisha Torrey
Every Patient’s Advocate
http://patients.about.com