http://www.pharmalot.com/2011/01/sho...close-funding/

Should Health Advocacy Groups Disclose Funding?
By Ed Silverman // January 13th, 2011


"... Sheila Rothman, the lead author and a professor at the Mailman School of Public Health at Columbia University...[said] “These HAO’s operate with a legacy of trust, so disclosure becomes important. Remember, they are 501c3 organization (which means they have tax-exempt status) but they’re actually very effective lobbying organizations at both state and federal levels in helping to set policy.
“There’s nothing wrong with taking money from drug companies, but I think they do have an obliagtion to disclose. Their lobbying agenda is so closely aligned to drug companies - open formularies, greater access to drugs - that it becomes complicated. They owe it to the public to tell them who their donors are and why they are getting the money.
“ it can seems as if these are ordinary citizens lobbying, which legislators may suspect, but not really know that the companies help support these organizations. And the drug companies love them because they are very effective – a person talking about a disease is more effective than a lobbyist talking.
“Remember, none of these companies are giving money to these organizations because they’re nice guys. They’re in business and they believe they can help them. If their advocacy succeeds, Lilly makes money..."

The authors of the American Journal of Public Health article failed to point out that all patient advocacy organizations that are members of the National Health Council, the leading national organization for patient advocacy organizations, must meet a Standards of Excellence® Certification Program (available to the public on the NHC website) which states the organization “must have a written board-approved policy that … MANDATES the disclosure of financial support received as a result of the corporate relationship.”

The authors also acknowledge in their article that their search of health advocacy organization (HAO) websites was inadequate to conclude whether HAOs disclose all financial support, and the data they presented contradicted their assertion that increased donations in certain therapeutic areas influenced sales.

Nancy Hughes
Assistant Vice President, Communications and Marketing
National Health Council

If you want to check out the Parkinson's Action Network's donors, go to http://www.parkinsonsaction.org/supp...eet-our-donors. The Parkinson's Disease Foundation lists its donors in their annual report available on their website. The Fox Foundation provides links to its annual reports, which give lists of donors. I imagine APDA and NPF also list their donors in their annual reports.

As I understand it, all 501(c)3’s are required to publish their donors.

Another item with similar message:

Most Patient Advocacy Groups Hide PhRMA Donations
January 13, 2011