Finding a Cure: Incentivizing Partnerships Between Disease Advocacy Groups and Academic and Commercial Researchers

Abstract

Collaborations between for-profit drug companies and not-for-profit disease advocacy groups have risen in recent years in an effort to find cures for orphan diseases. These unique and beneficial collaborations are a result of disease advocacy groups assuming a more active role in drug development through the use of “venture philanthropy,” which employs concepts and techniques from venture capitalism and applies them to achieving philanthropic goals. While these collaborations have found remarkable success, such as the discovery of the first known cure for cystic fibrosis in 2012, venture philanthropy for drug discovery presents numerous legal and social challenges. This Article examines the challenges presented by these novel partnerships and suggests ways that changes in the law or regulations can promote these partnerships without undue harm to the overall goal of advancing research toward cures for patients. The Article further addresses the issue of when a new product is discovered, if and how disease advocacy groups should control drug pricing and patient access to the new drug.