Is the Cystic Fibrosis Foundation a Charity or a Venture Capital Firm?

This article deserves considerably more attention than it apparently initially received.Background The background was,What happens when a disease-fighting charity dives into venture capitalism?In the first case of its kind, the results include one of the planet's most expensive pills, huge sales projections for a drug company and windfalls for executives who sold stock in the glow of enthusiastic news releases about the drug.Kalydeco is a breakthrough drug designed from knowledge of the genetic roots of cystic fibrosis, a lung disease that kills most victims before they reach middle age. Developed by Vertex Pharmaceuticals with a $75 million investment from the Cystic Fibrosis Foundation, it is an early example of 'venture philanthropy,' where a nonprofit helps finance development of a treatment in return for a cut of sales.Remember that while disease specific charities often sponsor basic and clinical research, in this case, the CFF sponsored drug development.  In fact, much of the research on which this development was based was sponsored by charities and the US National Institutes of Health:In the 1980s, Francis Collins, now director of the National Institutes of Health, was a researcher at the University of Michigan and on his way to becoming a renowned gene hunter.Collins and a team headed up by Lap-Chee Tsui at the Hospital for Sick Children in Toronto collaborated to identify the gene responsible for cystic fibrosis. That breakthrough involved funding ...
Source: Health Care Renewal - Category: Health Medicine and Bioethics Commentators Tags: Vertex Pharmaceutical executive compensation disease-specific organizations manipulating clinical research mission-hostile management guidelines Cystic Fibrosis Foundation Source Type: blogs