The Philadelphia Inquirer on Sunday examined how “many patient groups and drug companies maintain close, multimillion-dollar relationships while disclosing limited or no details about the ties.” According to the Inquirer, “such coziness raises questions about the impartiality of groups that patients trust for unbiased information” and also “poses a challenge for groups trying to hold patients’ trust and still raise money to serve them.” The Inquirer conducted an examination of six patient groups — including the American Diabetes Association and the National Alliance on Mental Illness — and found that they “rarely disclose[d]” ties when discussing or lobbying for donors’ drugs. According to tax returns and annual reports, the six advocacy groups combined received at least $29 million from drug companies last year, which accounted for percentages of each group’s revenue ranging from 2% to 7% at the Arthritis Foundation to between 89% and 91% at the National Gaucher Foundation. The Inquirer reports that the patient groups seemed “to be slower to publicize treatment problems than breakthroughs,” and “few openly questioned drug prices.” However, “the groups perform an important function by providing services unavailable elsewhere, such as patient education and help in obtaining medication or affording insurance,” according to the Inquirer. Jerome Kassirer, a Tufts University and Yale University medical school professor, said, “These organizations are susceptible to industry influence because they have trouble raising money themselves.” However, Marc Boutin, executive vice president of the National Health Council, said the leading not-for-profit organizations have fire walls to protect them from donor influence (Ginsberg [1], Philadelphia Inquirer, 5/28).
Disclosure Rules
In response to concerns that drug manufacturers might be influencing not-for-profits, some members of Congress and other patient advocacy groups are urging legislation to create stricter disclosure and tax enforcement of corporate donations, the Inquirer reports. The Senate Finance Committee is probing industry support for not-for-profits and individuals promoting drugs for off-label purposes. Committee Chair Chuck Grassley (R-Iowa) is looking into the enforcement of taxes on the benefits drug manufacturers receive from not-for-profits. “The public has no way of knowing that the information from these groups may be biased in favor of the drug companies that fund them,” Grassley said. In addition, a coalition of not-for-profits is urging a variety of changes in some tax forms. However, many patient groups and drug manufacturers argue that they already have safeguards in place and new limits might prevent funding for the not-for-profits (Ginsberg [2], Philadelphia Inquirer, 5/28).