In 2007, Eli Lilly and Company gave the National Alliance on Mental Illness (NAMI) $450,000 toward its Campaign for the Mind of America, which, if successful, could greatly expand the market for Lilly’s newest and most expensive psychiatric drugs.

Potential conflict of interest in the funding of health advocacy organizations (HAOs) by pharmaceutical companies is hard to suss out, because those relationships are mostly not made public. After doing a systematic analysis of the disclosure practices of HAOs, “I was very surprised at the large number of organizations that did not disclose” industry contributions, says Sheila Rothman, a professor at Columbia University’s Mailman School of Public Health.

Although there is no general legal requirement for companies to do so, as part of settlement agreements with the US Department of Justice, several drug and device companies now publish the exact amounts of gifts and grants they make to HAOs. Rothman used data from Lilly, the first to make its grant registry public, to evaluate grant transparency.

Only 25 percent of HAOs that received Lilly funding acknowledged it on their website. Eighteen percent did so in their 2007 annual report, and 10 percent listed Lilly as an event sponsor. None revealed the amount of the grant.

HAOs working in areas related to Lilly’s highest sales— neuroscience, oncology, and endocrinology—got most of the grants. Sixty-six percent of the money went to organizations with an interest in Lilly’s two best sellers, the psychiatric drugs Zyprexa and Cymbalta. The National Breast Cancer Coalition got $50,000, and lobbied for (among other things) expanded Medicare coverage for all oral cancer drugs. The American Diabetes Association received $250,000 with which to teach weight management and better drug use.

NAMI, for its part, did start publishing the amounts of all donations more than $5,000 in 2009, shortly after it came under scrutiny in congressional investigations. “The reason we didn’t do it before is competitive self-interest,” says Michael Fitzpatrick, NAMI’s executive director. “We all fight to find funding year in and year out, so you’re very protective of the people who write checks. It’s not a matter of trying to hide anything; it’s more trying to protect your donors.”

When the Physician Payment Sunshine Provisions of the new Patient Protection and Affordable Care Act go into effect in 2013, they will require companies to publicly report their gifts to doctors, but not to HAOs. It will still be up to the health advocacy organizations themselves to embrace transparency so that regulators, legislators, and the patients whose interests HAOs represent can more easily follow the money.

Sheila M. Rothman, Victoria H. Raveis, Anne Friedman, and David J. Rothman, “Health Advocacy Organizations and the Pharmaceutical Industry: An Analysis of Disclosure Practices,” American Journal of Public Health 101, 2011.

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