Political Quotes

“I thank Senator Hatch for beginning this colloquy. I am so proud to be a cochair of the Rare Disease Caucus with him, and I share my colleague's concerns. I think there must be improvements that are made. I continue to be inspired by the families across my State, your State, and our country who work so hard to make it easier for kids to have access to drugs to treat their illnesses. Unfortunately, we haven't yet achieved all we can do for these families, and I have heard time and again about the emotional roller coaster that many of them have experienced when they interact with the Federal Government on new approaches for these rare disease conditions. Too often they are unaware when drugs are under review or confused about why experts or patients are not even consulted. The individuals suffering from these conditions and their families need greater clarity about the process for evaluating and approving these drugs, and they ought to be included and informed every step of the way. It is critical that treatments that do exist for those with rare conditions be accessible and affordable. We must continue to protect the individuals from discrimination in insurance coverage and work to bring down costs. We have to ensure that incentives designed to spur the development and accessibility of treatments that the rare disease community desperately needs are not abused.…”