Drug Companies and Patient Groups: Uneasy Bedfellows

A couple of weeks ago, I was on This American Life, a weekly show on US national public radio, talking about screening for prostate cancer.  I discussed the extraordinary reaction to an opinion piece that I co-authored with Dr Mike Wilkes in 2002 in the San Francisco Chronicle.  We argued that there was no high quality evidence (from randomized controlled trials) to support population-based screening for prostate cancer, and that there was good evidence that screening was associated with major harms.

You can read here about the hate-filled e-mails that Mike and I received in response to our piece (we were accused of being, among other things, man-hating feminist Nazis; several people wrote to our employers to demand that we be silenced).

One fascinating fact about this e-mail hate campaign was that it was orchestrated by a prostate cancer patient support group.  The investigative journalist Jeanne Lenzer discovered that the group received 95% of its funding from drug companies.  These companies benefit from promoting prostate cancer screening, since screening is associated with a higher rate of prostate cancer diagnosis and treatment.

Ever since Lenzer’s investigative report, I’ve come to realize that many patient support groups, which often claim to provide “independent” or “impartial” advice, have very deep ties with drug companies—ties that present real or perceived conflicts of interest.

So I wasn’t entirely surprised by the New York Times’ piece on the National Alliance on Mental Illness, America’s highest profile mental health advocacy group, which stated:

“A majority of the donations made to the National Alliance on Mental Illness, one of the nation’s most influential disease advocacy groups, have come from drug makers in recent years, according to Congressional investigators. The alliance, known as NAMI, has long been criticized for coordinating some of its lobbying efforts with drug makers and for pushing legislation that also benefits industry.”

What did surprise me, however, was the immense amount of money changing hands:

“The mental health alliance, which is hugely influential in many state capitols, has refused for years to disclose specifics of its fund-raising, saying the details were private. But according to investigators in Mr. Grassley’s office and documents obtained by The New York Times, drug makers from 2006 to 2008 contributed nearly $23 million to the alliance, about three-quarters of its donations.”

Wow, $23 million.  That’s an awful lot of free lunches.

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