Cystic Fibrosis Foundation 
Gets $3.3 Billion For Royalties


The Cystic Fibrosis Foundation (CFF) has sold its royalty rights for cystic fibrosis drugs developed at Vertex Pharmaceuticals for $3.3 billion. The buyer is New York City-based Royalty Pharma, which acquires drug royalty interests.

The payment marks the maturation of the venture philanthropy model, in which a nonprofit organization underwrites risky investments in new drugs that might not otherwise be developed.

CFF’s investment includes $75 million it put into Vertex’s development of Kalydeco, a drug approved in 2012 that corrects the genetic mutation driving cystic fibrosis in certain people with the disease. Vertex’s development pipeline holds other drugs for cystic fibrosis, a fatal genetic disorder that affects the lungs and digestive system.

CFF’s newfound wealth “will allow us to supercharge our efforts to help all people with cystic fibrosis live long, healthy, and fulfilling lives,” CEO Robert J. Beall says. He adds that the funds will be used to increase research funding targeting the genetic causes of the disease, strengthen support to disease sufferers and families, and help sufferers afford medications.

Nonprofits investing in drug development for a share of the profits include the Leukemia & Lymphoma Society and JDRF, a diabetes research foundation.

But not all nonprofits that invest in venture philanthropy seek royalties. The Michael J. Fox Foundation, for instance, invests in drug development but accepts no royalties. The group says its intent is to encourage development of “therapies that will make a meaningful difference in the lives of Parkinson’s disease patients.”