Who Supports Fibromyalgia Patient Advocacy?

The Associated Press just published a story on the marketing of drugs for fibromyalgia, which provided a window into relationships among pharmaceutical companies and not-for-profit disease advocacy groups. One example was the National Fibromyalgia Association:

The drug industry's grants also help fill out the budgets of nonprofit disease advocacy groups, which pay for educational programs and patient outreach and also fund some research.

'If we have a situation where we don't have that funding, medical education is going to come to a screeching halt, and it will impact the kind of care that patients will get,' said Lynne Matallana, president of the National Fibromyalgia Association.

Matallana founded the group in 1997 after she was diagnosed with fibromyalgia. A former advertising executive, Matallana said she visited 37 doctors before learning there was a name for the crushing pain she felt all over her body.

A decade later, her patient advocacy group is a $1.5 million-a-year operation that has successfully lobbied Congress for more research funding for fibromyalgia. Forty percent of the group's budget comes from corporate donations, such as the funds distributed by Pfizer and Eli Lilly.

Pfizer gave $2.2 million and Lilly gave $3.9 million in grants and donations related to fibromyalgia in the first three quarters of last year, the AP found. Those funds represented 4 percent of Pfizer's giving and about 9 percent of Eli Lilly's.

Another example was the National Fibromyalgia Research Association:

Dr. Daniel Clauw of the University of Michigan said pharmaceutical industry market research shows roughly half are undiagnosed. People with fibromyalgia experience widespread muscle pain and other symptoms including fatigue, headache and depression.

Research by the University of Michigan's Clauw suggests people with fibromyalgia experience pain differently because of abnormalities in their nervous system. Brain scans show unusual activity when the patients experience even minor pain, though there is no abnormality common to all.

Clauw's work, however, illustrates the knotty issues of drug company funding. He has done paid consulting work for the drugmakers, and he's received research funding from the National Fibromyalgia Research Association, which receives money from the drugmakers.

By the way, the National Fibromyalgia Association's list of sponsors includes quite a few pharmaceutical companies in addition to Pfizer and Lilly:

Acorda Therapeutics
Cause Marketing, LLC
Citrucel
Cuddle Ewe
Eli Lilly
Fibronol
Forest Laboratories, Inc.
Ortho McNeil Pharmaceutical, Inc.
Pacific Life
Pfizer
Wyeth

The National Fibromyalgia Research Association's web-site is not so forthcoming, although I did find an acknowledgement that Lilly supported one NRFA conference in 2007 in the amount of $46,500.

This case illustrates the willingness of pharmaceutical companies (and likely other health care corporations) to support what appear to be grass-roots, not-for-profit disease advocacy groups when doing so coincides with corporate marketing objectives. Such "astroturf" organizations may help raise the profile of diseases for which the corporations market products, thus also helping to increase the market for these products, and may help further corporate health policy objectives.

With health care in flux due to new leadership in the US, and the global financial meltdown, look for stealth marketing and stealth health policy advocacy to increase.

As I have said before, I do not have a problem with pharmaceutical and other health care corporations marketing their products, and expressing their views on policy. I do have a problem with corporate marketing or policy advocacy is disguised as grass-roots, not-for-profit education and advocacy.