Examination of Venture Philanthropy and Other Non-profit Funding Models for the Purpose of Drug Development Research

Abstract

In an effort to mitigate the risks and efficiently and sustainably advance research and development of new therapies for patients with rare diseases, many non-profit patient advocacy groups have begun to financially support the research themselves through novel and innovative approaches. One such approach involves the partnership of non-profit patient advocacy groups with pharmaceutical companies to fund research outside of the traditional methods of funding translational research and to offset the financial risks that comes with orphan drug development. This approach offers a new model of non-profit funding for pharmaceutical research and is commonly referred to as “venture philanthropy.” This paper expands upon current knowledge of the venture philanthropy model by analyzing various examples of existing venture philanthropies in order to assess the benefits and barriers to establishing a venture philanthropy model. In particular, venture philanthropy presents a viable and businesslike mechanism to raise funding for research and development of therapies for rare diseases, and directly engages with industry partners to direct the research and development process in accordance with the goals of the patient advocacy group. Inadequate organizational infrastructure challenges the implementation of a venture philanthropy model, while moral and ethical dilemmas present barriers to advancement of the venture philanthropy model itself. Suggestions are offered on ways to overcome such barriers. Patient advisory groups that are pursuing new therapies to help make a difference in the lives of their patient populations should seek to overcome the barriers to the venture philanthropy model in order to accelerate and sustain research and development to support discovery of new medications and treatments.