Patient Advocacy Groups Keep Mum on Industry Ties, Study Finds

Patient advocacy groups aren’t being very open about their financial ties with the <"">pharmaceutical and <"">medical device industries, a new study says. According to The New York Times, the Columbia University researchers who conducted the study recommended expansion of the Physician Payment Sunshine Act, enacted by Congress last year, to those payments.

The study, which was published in the American Journal of Public Health, analyzed the first $3.2 million in grants made by Eli Lilly – the first drug maker to publicly release its grant registry – during the first half of 2007. The study identified the grantees and then the researchers went through the organizations’ websites looking for mention of the project or program being funded.

Of the 161 sites they examined, only 25 percent acknowledged the funding anywhere on the site, 18 percent mentioned the funding in a 2007 annual report, 10 percent identified Lilly as the sponsor of the specific program or project and 1 percent acknowledged the company on a corporate sponsorship page.

“I’m not saying it’s wrong, just that it should be disclosed,” Sheila M. Rothman, a professor of public health at Columbia and the study’s lead author, told the Times. “There is no way at this point that you can follow the money as a citizen, a health care provider or as a legislator or regulator.”

Professor Rothman said it is especially important for advocacy groups to disclose industry funding when they testify or speak with legislators or the media or serve on advisory panels.

“Since they represent themselves as promoting the public interest, health advocacy organizations should disclose to their members, legislators, and the public where their money is coming from and what they are getting the money for,” she said in a statement.

Groups that failed to disclose the Lilly grants included the National Alliance for the Mentally Ill and the National Breast Cancer Coalition Fund, which as the Times points out, “are lobbying powerhouses in two areas of top-selling Lilly drugs.”

In addition to calling for the expansion of the Physician Payment Sunshine Act, the study authors also called for new federal tax regulations to require the nonprofit health advocacy groups to list industry donors and sums on their tax returns.

In response to the study’s findings, Senator Max Baucus (D-MT) and Senator Chuck Grassley, (R-IA), who co-sponsored the physician disclosure law, said in separate statements that they would consider the suggestions to increase transparency, according to the Times.

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