‘Our Little Miracles'

Career decisions don't get any more dramatic than the one John Crowley faced. Crowley, a lawyer and Harvard Business School graduate, was working at Bristol-Myers Squibb when his two young children were diagnosed with Pompe disease, a fatal degenerative disorder. Rather than accept their death sentence, Crowley quit his job and invested his life savings in a biotech startup to find treatments for the disease. The company, later acquired by Genzyme, created therapies that have prolonged his children's lives. Crowley's family was the inspiration for the recent Harrison Ford movie Extraordinary Measures, and Crowley is the author of a new memoir, Chasing Miracles. In the latest of his series of interviews as part of NEWSWEEK's partnership with Kaplan University, NEWSWEEK chairman Richard M. Smith spoke with Crowley, now CEO of Amicus Therapies. Edited excerpts:

Smith: Megan and Patrick were less than 2 years old when they were diagnosed with Pompe disease. How are they doing today?
Crowley: They're great. We were originally told they wouldn't live to be 2, and then maybe 5 or 10. [Thanks to] the medicine that's been developed, Megan just turned 13, and Patrick is turning 12. They're our little miracles. They still face challenges. Pompe is a neuromuscular disease that affects not just skeletal muscle but breathing and cardiac muscles. The medicine reversed the life-threatening enlargement of their hearts—it's certainly extended their lives, but they're still special kids and they're still in wheelchairs. We continue to work with other people on looking at newer and better medicines to keep extending and enhancing their lives.

Joining the biotech startup required you to be away from your children, which must have been a wrenching choice.
That was the toughest part. It wasn't leaving a good job or a career path—you can always step back on a career path—it was being away 80 or 90 percent of the week for a long time. It ended up being nearly three years. Was it worth it? Probably.

What advice would you give to managers with employees who have a family member with a disability?
It's essential that you have sympathy and flexibility. Depending on the severity of the child's special needs, they're not going to be able to be a typical manager or a typical employee, but hopefully they've got a lot to contribute. I'd only been at Bristol-Myers a couple of months when Megan got so profoundly sick, and my bosses gave me the flexibility to manage both my job and my daughter's illness.

Is managing scientists different from managing businesspeople?
It's very different. Scientists often think about life in longer time frames than a traditional businessperson—they think about having a five-year National Institutes of Health grant. A lot of times, particularly in startup biotech, you don't have that luxury of time and capital. But the science will not succeed without the business, and business won't succeed without the science. The science produces the results and builds the milestones, but it has to be in the framework and the discipline of how you fund it and build wealth for shareholders.

What, in your view, are the strengths and weaknesses of the U.S. drug–approval process?
If you look at the majority of drugs developed in the world today, they come from U.S.-based pharmaceutical and biotech companies. The ability to do strong, private research in these companies—built on a lot of the foundations that come from places like the NIH and from our great academic centers—that's our great strategic advantage. Some of the challenges, though, are that today, we're a much more risk-averse industry. The government is generally more risk-averse. The bar for mistakes when it comes to safety is much, much higher than it was five or 10 years ago. That can be very frustrating, and we need to find the right balance.

Talk about the virtues of being small in an industry like pharmaceuticals.
For a smaller company, you're more nimble, more entrepreneurial, more willing to take certain risks in drug development and to push ideas faster. That's essential. A lot of the great medicines today typically originate either from the academic side or from those smaller biotechs. But typically they're proven to be safe and effective and brought to market by the larger biotech and pharma companies, where you need that level of discipline, structure, and rigor.

What did you think of Extraordinary Measures?
It certainly captures 100 percent of the spirit, the dynamic, the emotions of everything that we lived through. The movie does condense timelines, but the vast majority of the family events in it were absolutely true to our family's story.