Patient advocates and industry influence

(January 20, 2019)

Earlier, we presented an overview of the CMS (Center for Medicare and Medicaid Services) Open Payments Database. The database allows users to search for drug company payments to or on behalf of physicians and teaching hospitals. There are at least three other "non-commercial" ways that pharmaceutical companies can make payments that have influence:

  • - Donations to non-profit patient advocacy groups
  • - Donations to political candidates
  • - Traditional lobbying

In 2018, Kaiser Health News (KHN) released its "Pre$cription for Power" database, which gives detail on pharma industry donations to nonprofit patient advocacy groups.

KHN looked at twenty large pharma company's corporate and nonprofit foundation IRS filing statements for the year 2015, along with more than 1,200 non-profit organization profiles that matched the "patient advocacy" criteria that they set up. For example, the non-profit charities had to be 501(c)(3) designated, have revenue of at least $500,000 for 2015 fiscal year, and not be a provider of health care. Non-profit hospitals and health care centers were not included, but organizations like the American Diabetes Association and co-pay assistance groups were included.

KHN researchers matched up corporate disclosures of donations to information about the recipient advocacy groups themselves and made the data available on their searchable web platform. The task was not easy, as neither corporate donors nor non-profit recipients are required to publicly disclose the identity of recipients or donors. Non-profit foundations set up by the companies do have to publicly disclose donation recipients, but not all companies contribute all of their donations through a foundation.

Out of KHN's selected 20 large pharmaceutical companies, researchers were able to track some payments to patient charities for 14 of them. 594 patient advocacy groups received a total of more than $116 million in donations from those 14 companies. Many of the patient charities, even those that don't have a match for corporate donations in the KHN database, identify corporate sponsors on their web sites. And for those that do have matches, often many additional corporate sponsors are listed as donors. KHN database numbers probably represent just the tip of the iceberg when it comes to corporate donations to patient charities.

Using KHN charity payments data, along with three other sources, created this snapshot of spending in 2015 on the four types of influencers by the ten pharmaceutical companies with the largest combined spending in the four categories.

Pharma Spending by Company on Patient Groups, Physicians, Lobbying, and Campaign Donations, 2015

Sources and More Reading
- Search the Kaiser Health News Pre$cription for Power Database by company name or non-profit organization name. Link goes to article, then scroll down and click to search the database.

- How KHN Gathered Data:

- Center for Responsive Politics Lobbying Spending Database, Pharmaceuticals/Health Products, 2015:

- KHN Contributions Tracker - Pharma Cash to Congress, 2015:

- CMS Open Payments Database:

- Georgetown University's "Pharmed Out" organization maintains a list of patient advocacy groups that accept no funding from pharmaceutical, medical device, or biotech companies: