Pharmaceutical companies gave at least $116 million to patient advocacy groups in a single year, reveals a new databasefrom large publicly traded drugmakers to such organizations.
Even as these patient groups grow in number and political influence, their funding and their relationships to drugmakers are little understood. Unlike payments to doctors and lobbying expenses, companies do not have to report payments to the groups.
The database, called “,” shows that . The that contributed $116 million to reported only about $63 million in that same year.
Though their primary missions are to focus attention on the needs of patients with a particular disease – such as arthritis, heart disease or various cancers – some groups effectively supplement the work lobbyists perform, providing patients to testify on Capitol Hill and organizing letter-writing and social media campaigns that are beneficial to pharmaceutical companies.
Six drugmakers, the data show, contributed a million dollars or more to individual groups that represent patients who rely on their drugs. The database identifies more than 1,200 patient groups. Of those, 594 accepted money from the drugmakers in the database.
The financial ties are troubling if they cause even one patient group to act in a way that’s “not fully representing the interest of its constituents,” said Matthew McCoy, a medical ethics professor at the University of Pennsylvania, Philadelphia, who coauthored a 2017 study about patient advocacy groups’ influence and transparency.
Notably, such groups have been silent or slow to complain about high or escalating prices, a prime concern of patients.