And yet in the business world---as he had learned at Harvard and preached at Novazyme---choices were always made based on incomplete information. For all the talk of patients, management's allegiance to shareholders was paramount.
Like most of the Genzyme staff there, he had never before met patients with Pompe.
Aileen flapped her hand at him and continued, "Get out of here, asshole."
Until a couple of years ago, he had run and lifted weights almost every day.
John called Dr Byrne, the University of Florida physician-researcher who had performed the laboratory experiment that appeared to show that Canfield's enzyme made mice stronger.
No, he wouldn't tell Hal Landy or anyone else, not until everything was settled. There was only one person he trusted to get this done quickly: himself.
"Can I come down tomorrow?" he asked, sounding a little dazed. "Yes, yes, I know it's a Saturday bu I'd like to come and talk face to face."
John arose at 3 a.m. the next day to catch the first flight from Newark to Jacksonville. On the plane, he read the new protocol Dr. Bryrne had gotten approved by his review board and e-mailed back the night before.
John parked in a garage and made his way across the street and up in an elevator to a conference room where Byrne and Dr. Carolyn Spencer, also a pediatric cardiologist, awaited him.
"Guys, off the record---I think this is bullshit," John fumed.
"I know there has been a lot of discussion regarding the treatment of my children. I'm sorry for any confusion it has caused," he wrote. "As we all know, the most important thing is that the entire program continue to move forward. There is a perception that my children's trial is interfering with the larger program. I will let the doctors in Florida know we are withdrawing the request for treating my children. We can revisit the Sibling Trial after the 1602 and 1702 studies have been submitted to the FDA," he finished.
"Daddy told her, 'Get the fuck out of here.'"
Patrick began to struggle again to grip his favorite Power Ranger figures to make them fight one another.
Like most of the Genzyme staff there, he had never before met patients with Pompe.
Aileen flapped her hand at him and continued, "Get out of here, asshole."
Until a couple of years ago, he had run and lifted weights almost every day.
John called Dr Byrne, the University of Florida physician-researcher who had performed the laboratory experiment that appeared to show that Canfield's enzyme made mice stronger.
No, he wouldn't tell Hal Landy or anyone else, not until everything was settled. There was only one person he trusted to get this done quickly: himself.
"Can I come down tomorrow?" he asked, sounding a little dazed. "Yes, yes, I know it's a Saturday bu I'd like to come and talk face to face."
John arose at 3 a.m. the next day to catch the first flight from Newark to Jacksonville. On the plane, he read the new protocol Dr. Bryrne had gotten approved by his review board and e-mailed back the night before.
John parked in a garage and made his way across the street and up in an elevator to a conference room where Byrne and Dr. Carolyn Spencer, also a pediatric cardiologist, awaited him.
"Guys, off the record---I think this is bullshit," John fumed.
"I know there has been a lot of discussion regarding the treatment of my children. I'm sorry for any confusion it has caused," he wrote. "As we all know, the most important thing is that the entire program continue to move forward. There is a perception that my children's trial is interfering with the larger program. I will let the doctors in Florida know we are withdrawing the request for treating my children. We can revisit the Sibling Trial after the 1602 and 1702 studies have been submitted to the FDA," he finished.
"Daddy told her, 'Get the fuck out of here.'"
Patrick began to struggle again to grip his favorite Power Ranger figures to make them fight one another.
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