The Voice of the Patient: Time To Bring Out the Muzzle?

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.



  1. Larry,
    Perhaps you’d like to explain to your readers how a clinical trial’s comparative Kaplan-Meier works; and how there are people who are long-lived on both the intervention and non-intervention arms when there is no divergence between the two curves. And after you’ve explained that, you can explain how unlikely it is that the handful of people who are long-lived on the non-intervention curve will show up at an FDA hearing, while those who do show up may have either financial ties to the company involved or emotional reasons for doing so. And after you’ve explained all that, perhaps you will understand how hard it is for journalists to convey that information to a mass audience that is moderately intelligent but generally ignorant about the details of medical science.

    I’d be curious to know your impression of my coverage and live blogging from that hearing.

    Have a great evening and Jully 4th holiday. ,

  2. Hi Merrill, You’ve saved me a lot of work by explaining these points yourself. Thanks!

    To be honest, I didn’t follow the hearings all that closely. I try to stick mostly to the cardiology world. From a scientific or clinical point of view this hearing didn’t seem to me to be either controversial or even particularly interesting– though obviously from a political and regulatory perspective it was of considerable interest.

    In any case, my chief interest here was the uncritical press coverage afforded to these “patients,” and I couldn’t recall any discussion of this issue, so I thought the post might be useful, apart from all the other discussion about Avastin, a topic about which I’d rather leave to those who know the field better than me.

    Happy holiday too,


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