Carolyn Johnson | March 1, 2017
Earlier this month President Donald Trump said, “One thing that’s always disturbed me: They come up with a new drug for a patient who’s terminal, and the FDA says we can’t … approve the drug, because we don’t want to hurt the patient,”
“So, we’re going to be changing a lot of the rules,” Trump declared.
During his first address to Congress on Tuesday, the president renewed his commitment to getting those suffering the help they seek when he saluted a young woman named Megan Crowley who has battled the genetic disorder Pompe disease.
“True love for our people requires us to find common ground, to advance the common good, and to cooperate on behalf of every American child who deserves a brighter future,” Trump said Tuesday night before Congress. “An incredible young woman is with us this evening who should serve as an inspiration to us all.”
Trump continued (emphasis added):
Today is Rare Disease day, and joining us in the gallery is a Rare Disease Survivor, Megan Crowley. Megan was diagnosed with Pompe Disease, a rare and serious illness, when she was 15 months old. She was not expected to live past 5.
On receiving this news, Megan’s dad, John, fought with everything he had to save the life of his precious child. He founded a company to look for a cure, and helped develop the drug that saved Megan’s life. Today she is 20 years old — and a sophomore at Notre Dame.
Megan’s story is about the unbounded power of a father’s love for a daughter. But our slow and burdensome approval process at the Food and Drug Administration keeps too many advances, like the one that saved Megan’s life, from reaching those in need. If we slash the restraints, not just at the FDA but across our Government, then we will be blessed with far more miracles like Megan.