Disease associations might not operate as advertised

Published on
September 14, 2009

A reporter gets a call from the hypothetical Council for Making Sick Kids Smile about an event being sponsored on an otherwise sleepy Sunday. The reporter heads out to the event, hoping for a quick local page filler, and comes back to the newsroom with a great-sounding story with quotes from a well-spoken university professor and a teary mom and a photo of a sick and smiling child holding balloons nuzzling with a baby koala bear.

What reporters in this situation rarely ask is: who founded this council and why?

Many disease-focused groups, like the Susan G. Komen Breast Cancer Foundation, are what they seem to be: organizations that solicit money to fund research into the disease. In 2004, Jerome P. Kassirer, former editor of the New England Journal of Medicine, wrote a great piece for The Washington Post that exposed some of these councils and societies and associations for what they really are: marketing tools. Kassirer wrote:

The pharmaceutical industry and its reps are prohibited by law from advertising off-label uses of drugs. Doctors, however, can legally prescribe the medications as they see fit and discuss those treatments with their fellow physicians. While sometimes, off-label uses of drugs are appropriate, low in risk and beneficial, other times doctors behave in ways that blur the lines between medicine and marketing.

The following year, Susan Kelleher and Duff Wilson at The Seattle Times dove even more deeply into the topic for a series called Suddenly Sick, calling out the National Osteoporosis Foundation and the American Obesity Association as two groups backed by drug firms that have pushed to expand the definitions of disease and to advocate specific drugs and other interventions.

Health writers should find the associations that are headquartered in their neighborhoods and do a thorough check on their staffing, their funding and the credibility of the science they are pushing. Here are some key questions to ask:

Who is on the board?

Who is on the scientific advisory panel?

Are any of these folks being paid honoraria by a drug or medical device maker?

Have any of them conducted company-sponsored research?

Have they taught continuing medical education for a company?

Have they used a company-funded ghostwriter to author a paper?

Who is funding the association's meetings and conferences?

One way to start answering these questions is simply to attend one of the conferences and start picking up materials. If they are using the conferences as continuing medical education, they are supposed to disclose financial ties in any publications that are used, so look for the fine print.

Another approach is to find out what, if any, fundraising these groups have done and how. Check their IRS form 990s, which they should provide you upon request. If they don't, you can get them directly from the IRS or through Guidestar. If a nonprofit group is conspicuously absent from the fun-run, t-shirt sale or expensive dinner circuit, then you have to wonder how they are being supported. Is there one big donor? Maybe a big donor who makes the one drug that offers the sufferers of this obscure but increasingly common disease a reason to hope?

The next time you get a call on a slow news day from the Council for Making Sick Kids Smile, ask a few tough questions and see if you can burst any of their balloons.