04/17/2013
https://congress.gov...
"We appreciate Congress working to expand the pathway so that patients suffering from other life-threatening and rare diseases can benefit as well."
"But unfortunately, the reality is, that is what is happening and they are going through these processes now believing that they have to do it."
"I want to thank you and your staff for working with us on the permanent reauthorization of BPCA and PREA."
"Which is highly concerning, and concerning for you as well."