November 16, 2016

Matthew V. Abola, BA, Vinay Prasad, MD, MPH

Cancer patient advocacy organizations (PAOs) often demand faster drug approval and easier access to cancer medications with uncertain benefits and harms.1 Previous research has found that a sizable percentage of PAOs across all disease types receive funding from the biopharmaceutical industry2, 3; as such, the independence of such groups has been questioned.

To our knowledge, however, there has been no research specifically focused on the funding of cancer PAOs. These groups have influence on the regulation of cancer drugs, speaking on behalf of patients with cancer. The PAOs have supported recent legislation, including the 21st Century Cures bill and so-called Right to Try laws. For this reason, we sought to characterize declared sources of funding for cancer PAOs.

Result:

We identified 68 unique PAOs for specific cancer subtypes recommended by the NCCN (Table). Fifty-one of the 68 PAOs (75.0%) disclosed a median of 7 biopharmaceutical sponsors. Sixteen PAOs (23.5%) did not report whether they had biopharmaceutical sponsorship. One PAO (1.5%) specifically reported that it does not accept money from the biopharmaceutical industry.