Here’s a thought that probably won’t gain me many new friends: I am really sick and tired of the excessive role given to patients in news stories about health and medical issues.
Consider the recent avalanche of news stories about the FDA’s two-day hearing on Avastin for breast cancer. Nearly every story included respectful, uncritical and often fawning coverage of the patients who spoke at the hearing and who demonstrated outside the hearing. They all said the same things: Avastin saved my life. I wouldn’t be here without Avastin. I demand the right to choose Avastin.
If it were scientists making these claims the reporters (or at least the good ones) might ask them some hard questions: what is the evidence for your claim? How do you know the drug saved your life? They might even point out that for every person standing there being interviewed there might be many more unable to give interviews because they were dead. They might point out (and educate their readers along the way) that anecdotes are not evidence.
Now of course there are exceptions. Chris Woolston, on the LA Times Booster Shots blog, accepts the overwhelming data against Avastin and writes about the difficult task of facing facts. Here’s one nice paragraph:
Elaine Herscher, a writer living in Berkeley, feels for all women with breast cancer. She had the disease herself and took Avastin for a year as part of a clinical trial. Her tumor regressed, to the great relief of her family and friends (me included). “It’s a shock to wake up and learn that the FDA has ruled against something that you thought helped save your life,” she says. “But I believe in science. If it doesn’t work, it doesn’t work.”
But far more typical is this Reuters story, which simply presents the views and words of one patient, with absolutely no attempt to assess the validity of the patient’s remarks or to obtain an alternative or critical perspective. Here’s a typical quote:
“We could die if we get off this drug. I believe that strongly in Avastin,” she said.
Over on MedPage Today, Emily Walker bravely tells the harrowing tale about how during the FDA hearing the fanatical self-appointed patient advocates bullied and harassed FDA officials and anyone else with a different viewpoint. After one patient representative had the courage to speak in favor of withdrawing the breast cancer indication, Walker writes:
One women yelled, “What a patient representative! You better hope your breast cancer doesn’t come back. You’re an embarrassment to all cancer survivors.”
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.