New Database Tracks Pharma's Donations to Patient Advocacy Groups

Last week, Kaiser Health News (KHN) revealed a new database that logged 12,000 donations from large, publicly traded drug manufacturers to patient advocacy groups in 2015—the most recent year for which documents required by the Internal Revenue Service are available. The data show that pharmaceutical companies gave at least $116 million to patient advocacy groups in 2015 alone.

In creating the database, KHN examined the 20 pharmaceutical companies included in the Standard and Poor 500, of which 14 were transparent to some degree about giving money to patient groups. The database was created using information contained in charitable giving reports from company websites and federal 990 regulatory filings.

The database, called “Pre$cription for Power,” shows that donations to patient advocacy groups overshadowed the total amount the companies spent on federal lobbying in 2015; of the 14 companies that contributed $116 million to advocacy groups, the same companies reported only about $63 million in lobbying activities for the same time period.

Though the primary function of patient advocacy groups is to focus attention on the needs of a particular disease state, some groups act like lobbyists by providing patients to testify on Capitol Hill and organizing letter-writing and social media campaigns that are beneficial to pharmaceutical companies. The KHN data show that 6 drug manufacturers contributed $1 million or more to individual groups that represent patients who use their products. Of the 1200 patient groups identified in the database, 594 accepted money from drug makers.

The recipients of such donations include well known advocacy groups, like the American Diabetes Association and Susan G. Komen, each with revenue of hundreds of millions of dollars, and smaller groups like the Caring Ambassadors Program.

In fact, the report found that 15 patient groups that have annual revenues as high as $3.6 million relied on pharmaceutical companies for at least 20% of their total revenue, while some relied on the companies for more than half.

In light of the data being released, some stakeholders have spoken out about their concerns about with the findings.

Matthew McCoy, a medical ethics professor at the University of Pennsylvania, said in a statement to PBS News Hour that the financial ties are troubling if they cause any patient group to act in a way that’s “not fully representing the interest of its constituents. When so many patient organizations are being influenced this way, it can shift our whole approach to health policy, taking away from the interests of patients and towards the interests of industry. That’s not just a problem for the patients and caregivers that particular patient organizations serve; that’s a problem for everyone.”

Patients who are newly diagnosed with a disease often turn to patient advocacy groups for advice, but the money flow to such organizations may distort the patients’ knowledge of treatment options, said Adriane Fugh-Berman, MD, the director of PharmedOut at Georgetown University Medical Center, to PBS News Hour.

“[The money flow limits] their advocacy agenda to competing branded products when the best therapy might be generics, over-the-counter drugs, or diet and exercise,” she said.

Drug maker AbbVie, which produces branded adalimumab (Humira) that treats patients with a variety of inflammatory diseases, gave $2.7 million to the Crohn’s & Colitis Foundation and $1.6 million to the Arthritis Foundation, according to the company’s public disclosures found in the database. The list price for a month’s supply of the drug, according to pharmacy benefit manager Express Scripts, is $4872. Though adalimumab will eventually face competition from biosimilars, according to drug industry analysts at EvaluatePharma, it is expected to remain the highest-grossing drug in the United States through 2022.

The Arthritis Foundation and the Crohn’s & Colitis Foundation have been largely quiet on the cost of reference adalimumab, but have been members of an organization that voiced safety concerns about biosimilars; a coalition of patient groups, Patients for Biologics Safety and Access (PBSA) has suggested that the FDA overhaul its educational materials on biosimilars, and has called for congressional hearings on biosimilar safety. In 2015, then-members of the coalition, including the Crohn’s & Colitis Foundation, the Arthritis Foundation, and the Lupus Foundation of America, accepted about $9.1 million from pharmaceutical companies included in the database.

The database explores only a piece of the pharmaceutical industry’s giving overall, and will be expanded with more companies and groups over time, says KHN. Of the 20 companies examined, 11 were unwilling to disclose their company giving, and not all companies maintained private foundations. Among the companies that declined were Mylan, Gilead Sciences, and Celgene, among others.