The Cystic Fibrosis Foundation is receiving a windfall $3.3 billion – that’s right, $3.3 billion – on its investment of $150 million with a small biotechnology company about 15 years ago to entice the firm to research and develop drugs to help patients of this horrible inherited orphan disease.
That windfall is great news for Cystic Fibrosis patients, their families and the Foundation. Not only has the life expectancy of CF patients now doubled – from 20 to 40 years old – there is greater hope for the future, because the $3.3 billion will be reinvested to accelerate additional help for patients. Perhaps it will eventually help eradicate the disease.
Unfortunately though, as covered by the New York Times recently, controversy and complaints swirl around the Foundation. Some complain that it should have done more to encourage a lower cost for the drug. Others claim that disease nonprofits never should be investors in research, but rather just donate money for academic research. But really, this type of venture philanthropy seems the most expeditious route to helping cure patients.
Everyone should celebrate this success and encourage creation of additional “virtuous circles” that connect the people most knowledgeable about a disease and passionate to find a cure with those who can help the fastest. Experts agree. “If we want to get therapies to patients faster, we need to be partnering with the industry that actually brings those drugs to patients,” said Louis J. DeGennaro, chief executive of The Leukemia & Lymphoma Society. Other organizations pursuing similar venture philanthropy strategies include JDRF (formerly the Juvenile Diabetes Research Foundation), the the National Multiple Sclerosis Society and other groups involved in muscular dystrophy.
Please stop the bickering and focus on the fastest routes forward to find cures. Instead, please pause and be grateful to the CF Foundation for leading the way by example 15 years ago and join the families of CF patients celebrating with their loved ones.