I just finished reading a great book, The Cure: How a Father Raised $100 Million–And Bucked the Medical Establishment–In a Quest to Save His Children. John Crowley discovers that his two youngest kids are dying from a rare disease – one so rare that nobody has bothered to invest a lot in a cure. Crowley ends up quitting his job, starting a drug company and finding a drug to treat his kids. Only to discover that the FDA considers it a conflict of interest to include his own kids in the trials!
It’s a great heart-warming story of a family’s struggle with a little known disease written by a great writer – Greeta Anand. The book is mostly about the business side (as opposed to the medical side) of the disease. It’s a story about the dad’s struggle to find a cure for the disease. He’s never run a company, never gotten funding, knows little about biology or science, and yet he starts a very successful biotech company and finds a drug that works – all for his kids.
I found the conflict of interest part interesting. John Crowley brings in people suffering from Pompe to meet the people in the company. Most of the researchers have never met anyone suffering from the disease they are trying to cure! And get this, it could be considered a conflict of interest to meet the people they are trying to cure! That doesn’t make a lot of sense to me. In the computer high tech world we consider it a very good thing to meet your users – you are making the product for them! In Crowley’s case the visitors helped motivate and empassion his company.