Paying twice: questions over high cost of cystic fibrosis drug developed with charitable funding | The BMJ
▻http://www.bmj.com/content/348/bmj.g1445
Deborah Cohen and James Raftery ask why one of the first drugs to be developed by a partnership between a charity and a drug company also ended up being one of the world’s most expensive drugs. Why didn’t such philanthropy lead to greater patient access?
In early 2012, the first drug targeting the underlying cause of cystic fibrosis was approved in Europe and the United States. Ivacaftor’s (Kalydeco) arrival was greeted with a flurry of excitement.
Billed as a “game changer” by industry pundits and “a profoundly exciting development” by National Institutes of Health director, Francis Collins, ivacaftor soon became one of the world’s most expensive medicines—its mode of action considered as exciting as its unique funding model. (...)
New model of funding
Ivacaftor is the first drug developed through “venture philanthropy”—a partnership between a charity and a drug company. It’s an emerging trend in drug development, particularly for rare conditions, whereby a non-profit organisation helps to finance the development of a treatment in return for a share in profits.