Healthy Skepticism Library item: 19219

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Publication type: news

Wilson D
Study Finds Lack of Disclosure Among Advocacy Groups
The New York Times 2011 Jan 13
http://prescriptions.blogs.nytimes.com/2011/01/13/study-finds-lack-of-disclosure-among-advocacy-groups/

Full text:

Updated: Some health advocacy groups that say they are speaking for patients’ interests before legislatures, regulatory agencies or public forums fail to disclose their funding from drug makers, a new study from Columbia University says.

The study compared the drug maker Eli Lilly’s disclosures of $3.2 million in payments to 161 health advocacy groups in the first half of 2007 with the groups’ own disclosures.

Only one-quarter of the groups acknowledged Lilly’s support anywhere on their public Web sites, the study said. Only one in 10 disclosed Lilly as the sponsor of a specific grant, and none of them disclosed the exact amount.

The Columbia researchers recommended expansion of the Physician Payment Sunshine Act, enacted by Congress last year, to require drug and medical device companies to report those payments. They 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, Senator Max Baucus, a Democrat from Montana who is the chairman of the Senate Finance Committee, and Senator Chuck Grassley, a Republican from Iowa, who co-sponsored the physician disclosure law with Senator Baucus, said in separate statements that they would consider the suggestions to increase transparency.

Mr. Baucus said in a statement that he would like to “build on” the new law, which requires disclosure of payments to doctors and teaching hospitals starting in 2013. It was adopted as part of the health care overhaul.

Mr. Grassley’s press secretary, Jill Kozeny, said the senator was open to recommendations to expand the disclosure requirements to prescribers, patient organizations, professional societies, group purchasing organizations and pharmacy benefit managers.

Doctors are being asked to disclose far more about their financial connections to industry than the health advocacy groups that exercise broad lobbying and public relations powers, said Sheila M. Rothman, a professor of public health at Columbia and lead author of the study.

“I’m not saying it’s wrong, just that it should be disclosed,” Professor Rothman said in an interview. “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.”

Lilly’s reports were studied because it was the first company to disclose such payments. In 2009, Lilly, which is based in Indianapolis, said in a statement: “We regularly publish U.S. grant funding online and encourage advocacy organizations to consider their own transparency efforts.” Some other companies have also begun to disclose the payments, sometimes in response to federal investigations.

Professor Rothman said it was especially important for advocacy groups to disclose industry funding when they testify or speak with legislators or the media or serve on advisory panels. Some organizations have said their competitors would pirate their funding organizations if they disclosed them, she added, and some legislators have wondered if they really want to impose such disclosure requirements on constituents who testify or lobby on behalf of patients.

But Professor Rothman said it was necessary to disclose the funding because the groups say they represent patients, not marketing interests, and often seek public funding for their causes.

“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, lobbying powerhouses in two areas of top-selling Lilly drugs, the study said. Other groups were much smaller, and only one of the 161 in the study, a Pennsylvania mental health group, disclosed the approximate amount of its grant, which was $5,000, Professor Rothman said.

Fran Visco, president of the breast cancer coalition, said it discloses Lilly’s support in annual reports posted on its Web site. In an interview, she also said the group limits total industry support to 15 percent of its budget and takes political positions that are sometimes contrary to the drug industry.

Ms. Visco said she would not object to listing all industry donations on the organization’s tax form.

The mental health group had no immediate comment.

The study was released in Thursday’s Web edition of the American Journal of Public Health. Co-authors are Victoria H. Raveis, Anne Friedman and David J. Rothman of Columbia University, who is Sheila Rothman’s spouse and president of the Columbia-affiliated Institute on Medicine as a Profession.