New Database Tracks Pharma Donations to Patient Advocacy Groups

Published: Apr 10, 2018 By

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The relationship between pharmaceutical companies and patient advocacy groups is long and deep and involves millions of dollars in donations, a new report reveals.

Kaiser Health News unveiled a new database called Pre$criptions for Power that shows donations of more than $100 million to patient advocacy groups from 14 pharmaceutical companies in 2015, the most recent year for which numbers are available. The database includes 12,000 donations “from large publicly traded drugmakers to such organizations.” Advocacy groups that received funding from pharma companies include the high profile American Diabetes Association and Susan G. Komen Foundation, as well as lower-profile organizations like the Caring Ambassadors Program, which focuses on lung cancer and hepatitis C, KHN said.

The money pharma companies sent to the advocacy groups is nearly twice what was spent on state and federal lobbying efforts, KHN reported. Unlike money spent on lobbying of campaign contributions, the funds provided to these advocacy groups by the pharma companies do not have to be reported in the same manner, according to the report.

But, that’s where things can become a bit murky. KHN noted in its report that many patient advocacy groups perform some de facto lobbying on behalf of the pharma companies by taking patients afflicted with various diseases to testify before Congressional committees or engage in letter writing campaigns or other outreach efforts. KHN said some of the communications sent out by advocacy groups on behalf of their patient constituency end up reflecting talking points of the pharma industry

KHN developed its database after carefully examining public records submitted to the U.S. Internal Revenue Service. In its report, KHN showed that six drugmakers contributed a minimum of $1 million to individual advocacy groups that represent patients that rely on drugs made by that company. The KHN database includes more than 1,200 different patient’s groups. Out of those, 594 advocacy groups accepted money from pharma companies, KHN reported.

Matthew McCoy, a medical ethics professor at the University of Pennsylvania, told KHN that the financial ties between the companies and advocacy groups are troubling. He warned the advocacy groups could begin to act in a manner that’s not within the interests of its constituency due to the financial connections.

“When so many patient organizations are being influenced in this way, it can shift our whole approach to health policy, taking away from the interests of patients and towards the interests of industry,” McCoy told KHN. “That’s not just a problem for the patients and caregivers that particular patient organizations serve; that’s a problem for everyone.”

Bristol-Myers Squibb was one company that invested millions of dollars in patient advocacy groups. According to the report, BMS spent $20.5 million on advocacy groups. In contrast, the pharma giant only spent $2.9 million on federal lobbying efforts and another $1 million was spent on trade associations.

BMS spokesperson Laura Hortas told KHN that the company is “focused on supporting a healthcare environment that rewards innovation and ensures access to medicines for patients.”

AbbVie, which makes the blockbuster autoimmune disease treatment Humira gave $2.7 million to the Crohn’s & Colitis Foundation and $1.6 million to the Arthritis Foundation, KHN reported, citing its database. Many of the patients represented by those two groups take Humira. In total, KHN said AbbVie donated $24.7 million to patient groups in 2015. AbbVie said it provides funds to patient groups because they serve as an "important, unbiased and independent resource for patients and caregivers," KHN reported. 

KHN said it intends to continue to expand the Pre$criptions for Power database.

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