01/20/2015
https://www.congress.gov...
"There is just something, in terms of the FDA making these decisions for parents and patients, that we have to come to grips with."
"I am sorry. Who are you to tell Matt that you are going to protect him from exploitation when he has no further hope?"
"What is the harm in doing this, in terms of--versus the benefit of giving people hope?"
"There has to be some way to give those parents the right to just, actually, make sure they get the drug."