The Centre for Effective Altruism spun off a venture philanthropy project in 2014, called Effective Altruism Ventures. Other examples of this type of venture philanthropy are New Profit Inc. in Boston, the Robin Hood Foundation in New York City, Tipping Point Community in the San Francisco Bay Area, The Research Acceleration and Innovation Network (TRAIN) initiative from FasterCures, the Asian Venture Philanthropy Network (AVPN), and the European Venture Philanthropy Association (EVPA).
Cystic Fibrosis Foundation
In the late 1990s the Bethesda-based Cystic Fibrosis Foundation, wanting to take more direct action toward finding treatments for cystic fibrosis beyond its traditional approach of funding basic research at universities, invested in a small California biotechnology firm to help fund the discovery and development of the drug that twenty years later was approved as Kalydeco. Unlike other drugs that were available that just address symptoms of CF, the drug candidate was intended to address the underlying cause of CF. The company in which CFF invested was Aurora Biosciences; CFF provided $30 million for Aurora to identify and develop up to three drug candidates. The unusual nature of the arrangement was widely noted.
In 2001, Aurora was acquired by Vertex Pharmaceuticals, but CFF continued to fund development of the CF drug candidates. That funding eventually grew to $150 million, much of which was raised for the CFF by Joe O’Donnell, a Boston businessman whose son died of CF.
When Vertex started selling Kalydeco, it priced it at about $300,000 a year and promised to provide it free to anyone in the US who was uninsured or whose insurance wouldn't cover it. It justified the price - one of the highest in the world for any drug - by explaining that on the one hand, that it can only treat about 4% of CF patients, or about 3,000 people worldwide; as it was only approved for adults and children six and older, there are only about 2,400 people eligible to receive it; with that few people, it needed a high price in order to pay for the research to create it as well as its other programs, which include a drug candidate that could treat many more people with CF. It also pointed out the strong efficacy of the drug, and laid out the costs of managing CF that would be saved for people that the drug could treat; those costs include repeated hospitalizations and lung transplants.
Nonetheless the high price led to sharp criticism of Vertex and the CFF. Twenty-nine physicians and scientists working with people with cystic fibrosis (CF) wrote to the CEO of Vertex Pharmaceuticals to plead for lower prices.
CFF made the investment in exchange for a promise of royalties paid on sales of any drug it funded that made it to market; in 2014 it sold the future royalty stream to Royalty Pharma, a royalty fund investment company, for $3.3 billion, and said that it would use the funds to invest yet more in research and clinical trials for cystic fibrosis treatments.
In the course of working out the deal with Aurora in 2000, CFF included a clause in the agreement that allowed them to take control of the intellectual property if Aurora stopped developing any drug that had been discovered. CFF struck a similar agreement with the company, Altus Pharmaceuticals, to fund development of a recombinant enzyme that could treat pancreatic disease in people with cystic fibrosis. When Altus reported to CFF that it didn't have funds to continue developing the drug, CFF seized control of the asset and eventually licensed it to Eli Lilly
Criticism of venture philanthropy in education
UW-Madison Professor Emeritus Kenneth Zeichner wrote a paper criticizing the role of the New Schools Venture Fund in bringing deregulation and market-based practices into schools in the US. Lois Weiner writing in The Jacobin criticized teachers' unions for taking money from the Gates Foundation.
Notes and references
- Forbes via NBC News 'Venture philanthropy' is new buzz in business: Buffett, Gates not the only tycoons reshaping world of charitable giving
- Faster Cures May 7, 2015 Press release: Venture philanthropy gains steam, pushes promising science through to patients
- Brady Dennis (2 July 2015), Are risks worth the rewards when nonprofits act like venture capitalists?, Washington Post, retrieved 19 July 2015
- Beall R. Straight talk with... Robert Beall. Interviewed by Elie Dolgin. Nat Med. 2012 Mar 6;18(3):335. PMID 22395687
- Marshall E. Disease Group Invests in Do-It-Yourself Drugs. Science. 2000 Jun 9;288(5472):1715b-7b. PMID 17836682
- Staff, Bioprocessing Online. June 5, 2000 Aurora Biosciences Receives Funding from the Cystic Fibrosis Foundation
- Matt Fleisher-Black for Corporate Counsel. June 2002. Patient, Heal Thyself
- Lauren Arcuri Ware for the Robb Report. April 1, 2014 Venture Philanthropy: A New Driver for Research
- Andrew Pollack for the New York Times. Nov 19, 2014 Deal by Cystic Fibrosis Foundation Raises Cash and Some Concern
- Brian McGrory for the Boston Globe. Feb 09, 2012 Driven by loss, father inspires tireless pursuit of a cure
- Barry Werth for MIT Technology Review. October 22, 2013 A Tale of Two Drugs
- David M. Orenstein; Paul M. Quinton; Brian P. O'Sullivan; Carlos E. Milla; Mark Pian; et al. (9 July 2012), Letter to Jeff Leiden, CEO of Vertex Pharmaceuticals (PDF), retrieved 19 July 2015
- Heidi Ledford for Nature News. July 20, 2011 Charities seek cut of drug royalties Nature 475, 275-276 (2011)
- Staff, UW-Madison School of Education News June 20, 2014 Paper co-authored by Zeichner examines growing role of venture philanthropy
- Lois Weiner for The Jacobin. September, 2013 This Labor Day, Thank a Teacher: Teacher unions offer our best shot at revitalizing the labor movement
- Effective Altruism Ventures
- CNET Universities and industry: A marriage of convenience
- Kirsch Foundation Definition of Venture Philanthropy
- EVPA's Definition of Venture Philanthropy
- The Foundation for Advanced Philanthropy Advanced Concepts
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