The Cystic Fibrosis Foundation recently announced its not-for-profit branch, Cystic Fibrosis Foundation Therapeutics, has signed a strategic transfer of owned Vertex Pharmaceuticals royalty rights to Royalty Pharma for $3.3 billion. CFF Therapeutics owned rights to any Vertex-developed CF treatments, but the foundation has deemed it more beneficial to sell them and allocate the funds to the pursuit of research and new ventures to address this disease.
Cystic fibrosis, a rare, genetic disease that causes copious amounts of abnormally thick mucus to build up in the respiratory and digestive tract, has a small number of FDA approved treatments on the market. One of these treatments, Kalydeco (ivacaftor), comes from Vertex. The company is also working on two more CF treatments (VX-809 and VX-661) in its pipeline. Robert J. Beall, Ph.D., the president and chief executive officer of the Cystic Fibrosis Foundation, said this purchase is a pivotal moment for the foundation and the CF community, as the new funds can be more directly utilized to improve CF patient and family support services, and advance research and development.
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This transaction exemplifies the CFF’s effective venture philanthropy model, which has served as groundwork for the foundation’s extensive fundraising and investment of millions of dollars in pursuit of groundbreaking solutions for this debilitating disease. The fund will significantly help the CFF to continue its mission to support pharmaceutical companies working on CF treatments. It is through this strategy that today’s CF community is celebrating vast improvements in life expectancy, which has doubled since the 1980s.
In other news on cystic fibrosis, a group of nano-researchers from The Henry Samueli School of Engineering, UC Irvine received a grant worth $1.3 million dollars to continue developing a portable breath analysis device that can detect the presence of a lung infection. This device is designed to work similarly with the Breathalyzer, and can be used with a smartphone and an app. This development is particularly beneficial for CF patients as starting an antibiotic treatment early, before the infection becomes difficult to eliminate, is crucial to avoid potentially life-threatening complications of this disease.