More patents don’t solve – Disease treatment is too risky for private companies to invest in

"The unique and mutually beneficial partnership that led to the approval of Kalydeco serves as a great model for what companies and patient groups can achieve if they collaborate on drug development." 1 In January 2012, the FDA approved a new breakthrough drug for cystic fibrosis: Kalydeco (ivacaftor), the first available drug that treats the cause and not just the symptoms of cystic fibrosis. 2 Cystic fibrosis is the most common fatal genetic disease among Caucasians, affecting approximately 30,000 people in the United States. 3 The average life expectancy for people with the disease is thirty-eight years. 4 [*287] While the gene that causes cystic fibrosis was discovered in 1989, 5 it has taken over two decades and a unique collaboration to find a cure. 6 The collaboration that gave rise to this drug discovery involved a partnership between a for-profit bioscience company, Vertex Pharmaceuticals, and a national nonprofit organization, the Cystic Fibrosis Foundation. 7 The impetus for this collaboration was simple: "the disease is prevalent enough to cause widespread pain, but too small for profit-minded bioscience companies to risk massive resources in pursuit of a cure." 8 Thus, the Foundation invested over $ 45 million into Vertex in 2000 for research and development of a drug for the disease. 9 This was "the largest grant of its kind by a nonprofit disease group." 10 By 2012, the Foundation had awarded Vertex over $ 75 million in funding 11 and has invested $ 260 million in drug development since the mid-1990s. 12 When the Cystic Fibrosis Foundation made its initial investment, such "venture philanthropy" was uncommon. 13 As the chief executive, Robert Beall, told one reporter, it was "the biggest gamble I ever made." 14 Today, however, such partnerships are becoming more common. 15 In 2008, U.S. disease foundations [*288] invested approximately $ 90 million into for-profit companies for drug development. 16 This was thirteen times more than was invested in 2000. 17