Advocacy Groups Mum on Pharma Ties

Most health advocacy groups don't disclose funds from pharmaceutical companies.

Jan. 16, 2011— -- Most health advocacy groups that portray themselves as grassroots organizations fail to disclose the pharmaceutical company grants they receive, researchers said.

A comparison of Eli Lilly & Co.'s public grant registry with the disclosure information posted on the recipients' websites showed that only 25 percent made any mention of the company's involvement, and none specified the dollar amount given, according to a study published online in the American Journal of Public Health.

"Thus, in most cases, neither policymakers nor the public can readily learn about the financial relationship between an HAO [health advocacy organization] and Lilly," wrote Sheila M. Rothman, PhD, of Columbia University in New York City, and colleagues.

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Several of the large global pharmaceutical companies now make public their educational grants to other organizations, but Lilly was the first to do so, starting in 2007.

As Rothman and colleagues explained, the agendas of advocacy groups often overlap with industry's marketing interests. For example, they may seek FDA approval or more generous reimbursement for a company's product. They may also want to increase public or physician awareness of a disease, which could increase a company's sales of drugs or devices for treating that disease.

The researchers cited HIV-AIDS activist groups in the 1980s for establishing the model for contemporary advocacy organizations.

For purposes of the study, Rothman and colleagues defined HAOs as nonprofit groups "concerned with healthcare in which both the leadership and membership were drawn predominantly from the general public."

During the first half of 2007, Lilly's grant registry listed 188 recipients who met these criteria, the researchers indicated. Of these, websites for 161 were located and searched for funding disclosure information.

These groups received a total of $3.2 million from Lilly during the period, about 10 percent of its total grant-giving.

Following the Money

Rothman and colleagues found that the recipients largely were active in areas where Lilly sold important products.

Two-thirds of its grants to HAOs involved groups or projects in neurosciences. In 2007, Rothman and colleagues noted, 45 percent of Lilly's net U.S. sales were from neuroscience products.

Its two best-selling products that year were the antipsychotic drug olanzapine (Zyprexa) and the antidepressant duloxetine (Cymbalta), now also marketed for fibromyalgia.

Most of its other grants went to groups concerned with oncology or endocrinology, which collectively accounted for 42 percent of Lilly's product revenues.

Of the 161 organizations in the study sample, 85 percent were involved with these three therapeutic areas. the researchers found.

For 75 percent of the groups, Rothman and colleagues could not locate a single mention of Lilly funding anywhere on their websites. An even larger fraction, 82 percent, omitted the grant from their annual reports.

Just two groups listed Lilly as a corporate sponsor and 10 percent reported directly that Lilly had funded a project.

Oncology and endocrinology groups were better at disclosing the Lilly funding than those involved with neurosciences.

Four of the six oncology-oriented HAOs and 10 of 17 related to endocrinology acknowledged Lilly somewhere on their websites.

In contrast, only 18percent of neuroscience groups disclosed the company's support.

Rothman and colleagues also found that national neuroscience organizations were somewhat more likely to disclose the Lilly funding, with a 36 percent acknowledgment rates, compared with just 16% among local chapters.

"This lack of transparency is disappointing," the researchers wrote.

The Affordable Care Act requires companies to report gifts and payments to physicians, but there is no similar provision for advocacy groups. Rothman and colleagues recommended that the law be revised to mandate such disclosure.

"Legislators, regulators, and the public would more easily be able to follow the money and evaluate possible biases and conflicts of interest in HAO advocacy," they suggested.

The researchers noted that their study was limited by its focus on a single company's self-reported payments over a six-month period and on information posted on websites. They conceded that groups could have disclosed the funding in other ways, such as printed brochures that the authors did not examine.

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