Shire has released there guidelines for compassionate use (or expanded use) of their products. They didn’t have any criteria before we approached them, which continues to astound me. Regardless, their criteria is riddled with issues and inaccuracies, and I’ll post our response to it tomorrow.
In the meantime, the info graphic included below is a quote from Shire’s CEO Flemming Ornskov. Jamie Fowler, Jack’s mom, posted it on her page today, and it’s quite telling.