Charities and the lure of capitalism: Philanthropies dedicated to finding cures for rare diseases explore new models for funding and cooperation to accelerate research and drug development.

Abstract

JDRF, formerly the Juvenile Diabetes Research Foundation, in New York, NY, USA, is one of several charities that have taken philanthropy to a new level. The foundation, using a new funding approach often referred to as venture philanthropy, teamed up with KalVista Pharmaceuticals to develop plasma kallikrein inhibitors to treat diabetic macular edema and hereditary angioedema. In the JDRF model, partner companies match the foundation's funds for specific research projects on treating type 1 diabetes (T1D) and its complications carried out by the company. “The Phase 1 US clinical study, which we co‐funded with the company, produced positive results and key proof‐of‐concept data”, said Michael Batten, director of research business development at JDRF, which invested US$2.2 million in this project. He added that the data generated by the co‐funded study allowed KalVista to raise US$33 million in their next round of funding. > … JDRF is part of a growing movement amongst charities whose patients have been frustrated by seemingly glacier‐slow academic research on diseases and who want to control research on new treatments… Batten said that the foundation's goal during the past decade has been to stimulate research and interest within the commercial sector to address T1D, which represents only around 5%[Link] of the diabetes population. He explained that the foundation's investment in companies aims to “de‐risk” research and development in T1D therapies, particularly in the early stages where the risk of failure is highest. JDRF asks for a modest payback from their for‐profit partners in the form of commercial royalties upon approval of a therapy, which the foundation uses to further support its mission to cure, prevent, and treat T1D, which, unlike type 2 diabetes, starts as early as in childhood. According to Batten, JDRF is part of a growing movement among charities whose patients have been frustrated by seemingly glacier‐slow …