Nonprofit foundations for diseases such as Parkinson’s, cystic fibrosis, and multiple myeloma are funding for-profit companies to research treatments and potential cures for their disorders, a trend called “venture philanthropy.” Not only are they funding research, they are doing so with a businesslike focus on meeting goals and milestones, and in some cases, with revenue from the resulting drugs being funneled to the foundation for further research. The question some have is, what does this do to the reputation of these nonprofits? Can they be transparent enough to reassure stakeholders that they are not operating on the same capitalist model as pharmaceutical and biotech companies? The biggest success from venture philanthropy so far is Kalydeco, a new drug that treats 4 percent of cystic fibrosis sufferers with what has been described as a functional cure, developed with funding from the Cystic Fibrosis Foundation. The cost of the drug is astronomical, and the question of how ethical it is for the CFF to be receiving royalties from its sale has been raised.
