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Home » News & Gossip » <a href="" title="Parade should have asked e-patients">Parade should have asked e-patients

Aside from debunking a crummy column, this is a call to action for journalists.

Today Parade featured a column that appears to be pure flackery. If the editors had done a reality check with a patient community they would have been much better informed, with little extra effort on their part.

Titled You Can Survive Cancer (I Did), the column is by Mark Liponis MD, who had a cancerous kidney removed and now runs a chain of spas. (Why this is featured under the heading “Men’s Health” is beyond me, but let’s not focus on that for now.)

The column doesn’t even touch on the nasty realities of kidney cancer: few effective treatments are available, many patients don’t qualify for the most effective treatment, and even among those who do, only one in five responds to the treatment. (I was one of those lucky few.)

On top of that, “I survived, so you can” is absurd logic for an MD to assert, and cruel to people confronted with a condition that has already in many cases turned their lives upside down. It implies that you wouldn’t be dying if you’d done what he did.

Reaction among e-patients on the ACOR kidney cancer listserv has been strong. Members are insulted by the insinuation that all you have to do is eat superfoods, exercise etc (which are, astonishingly, what Liponis’s chain of spas recommends), and if you get cancer, just get it chopped out as he did, and you’ll be fine.

Here’s part of a note I posted to that list.

This is an opportunity to wake up the medical world (at least a corner of it) and some media people about the need to check with patient communities. …

[Name redacted], I think you’re right – Liponis’s book was published last September, so this looks like more publicity. The Amazon page about his book shows that he’s in every possible promotional channel: several blogs, two web sites, Rachael Ray… his site lists many other TV appearances, and says he’s been doing the spa/nutrition thing for twelve years. …

A major point here, in my view, is that the world needs to see the importance of listening to e-savvy patients like the members of this list. Whenever a publication wants to run something about a cancer (especially if the lead came from a PR flack), they ought to instantly know they can fact-check by coming here.

Journalists, please do what you can to fact-check anything medical – with patients, not just doctors. Sometimes doctors are just flacking. Flacking is flacking, but masquerading as medical advice is not good.

As I’m fond of saying, the best peer-reviewed source is often the patient’s peers.