Beware patient advocacy websites – there’s a lot of drug money hidden there

Servant of two masters

It happens every day…

You, a friend, someone is diagnosed with a disease. So you head straight to the Internet looking for information.

What’s the first thing you’ll find?

If you type in “type 2 diabetes” you’ll find the American Diabetes Association.

If you look for “cancer” you’ll find the American Cancer Society.

And if you search “heart disease” you’ll find the American Heart Association.

All of these patient advocacy sites appear to be set up to serve patients. And to some extent that’s what they do. But it’s not all they do. No, they also serve at the pleasure of their corporate donors. (I’ll give you one guess which corporations I’m talking about.)

But when you get to the websites, where are the donors? Where’s the disclosure? Where’s the transparency?

On many of these sites, you could look a long long time and find next to nothing that would tip you off that influence might be for sale there.

He said, she said

So…should patient groups accept money from drug companies?

The British Medical Journal put that question to Alastair Kent, director of London’s Genetic Interest Group, and Barbara Mintzes, a research consultant for Pharmawatch and other consumer and patient groups.

Kent is given the thankless task of supporting a “Yes” answer to the question. And all he can come up with is pretty thin stuff.

He says it’s okay for industry to provide core funding, but with this condition: “Providing the source is acknowledged and there are no hidden strings…”

When I read that, I couldn’t help but think of a cartoon dollar bill tied to a string — a drug company pulling the string, leading the dollar down the street, with cash-starved patient groups struggling to pounce on it.

But “hidden” strings are beside the point. There are always strings attached, hidden or not. I mean, we’re talking about huge sums of money donated by corporations that DO NOT fool around when it comes to locking in plenty of zeros on the bottom line.

Barbara Mintzes makes that clear with the evidence she offers to support her “No” answer.

She gives us this quote from Pharmaceutical Executive magazine: “Product managers see advocacy groups as allies to help advance brand objectives, like increasing disease awareness, building demand for new treatments and helping facilitate FDA clearance of their drug.”

I’d say those strings are pretty visible!

Mintzes singles out one patient group in Europe that’s ALL about industry — founded solely with funding from drug companies and supported with more than 90 percent industry funding.

And then there are more subtle ways that patient groups are put to use…

Mintzes writes: “The Canadian Arthritis Society is well respected for its patient services. However, in 2000, the society’s logo was used on newspaper supplements claiming safety advantages for celecoxib and rofecoxib without disclosing funding from the manufacturers.”

And in case you don’t recognize “rofecoxib” — that’s the chemical name for one of the most notoriously dangerous drug fiascos of all time: Vioxx.

Finally, Mintzes cites a 2006 study that examined conflicts of interest on almost 70 patient organization websites. Close to half received industry funding, but only a third clearly stated the source of funds. None of them detailed the exact proportion of Pharma funding.

The study concluded: “Patient organisation websites do not provide enough information for visitors to assess whether a conflict of interest with Pharma exists.”

And there you go: Browser beware!

On most of these sites you’ll find good resources and information. But be skeptical about whether some piece of advice is from a medical professional or a press release from Merck or Pfizer or Glaxo.

Sources:
“Should patient groups accept money from drug companies? Yes” British Medical Journal, Vol. 334, No. 7600, bmj.com

“Should patient groups accept money from drug companies? No” British Medical Journal, Vol. 334, No. 7600, bmj.com

“Advertising and disclosure of funding on patient organisation websites: a cross-sectional survey” BMC Public Health, Vol. 6, No. 201, biomedcentral.com