The contribution of disease focused nonprofits to biomedical research and development

Abstract

Patient-centered, disease-focused nonprofits are playing an increasingly prominent role in accelerating the development of new diagnostics, drugs, and therapies. They are engaging in a variety of complex venture philanthropic activities as they seek to bridge the "valley of death" gap between basic and clinical research. Examples of such activities include developing preclinical research tools, supporting clinical trials infrastructure, and investing in private biotechnology companies. In this thesis, 1: 1) quantify the financial contribution of US-based nonprofits to biomedical research and development (R&D) and the allocation to therapeutic areas; and 2) propose a framework for understanding the core functions of biomedical venture philanthropies. I find that US-based nonprofits contributed $3.7 billion to biomedical R&D in 2011, and that within certain disease areas nonprofit spending is comparable to or exceeds spending by the National Institutes of Health (NIH). I catalogue nonprofit activities and place them in a framework of five core functions: bridging gaps, enabling research, directing pipelines, informing stakeholders, and shaping markets. I present several case studies via this framework, discuss opportunities, and point out challenges such as a lack of conflict of interest standards. Methods included recording and analyzing publically available financial data from over 400 biomedical nonprofits, and conducting a series of in depth interviews with nonprofit executives and other related professionals.