Michael Burgess: “I thank Dr. Bucshon from Indiana for yielding me the time on such an important reauthorization that we are undertaking…”

“I thank Dr. Bucshon from Indiana for yielding me the time on such an important reauthorization that we are undertaking today. Mr. Speaker, 2018 was the last authorization for sickle cell research. Prior to that, it had been part of the 2004 Bush tax cuts, and it has been a long time since this Congress had turned its attention to the problems encountered by people who suffer from the diagnosis of sickle cell disease. Fortunately, in 2018, President Trump signed a bill into law, and now we are going to reauthorize that bill in this Congress. That is a good thing. I can remember sitting in a hearing in 2016 where the sickle cell disease advocate told us that it had been fully 40 years, four decades, since the Food and Drug Administration had approved a new therapy for sickle cell. Fortunately, we are well past those days now, and on the horizon are a number of newer therapies. Ranking Member Pallone mentioned cell and gene therapies. A lot of work was done when the Committee on Energy and Commerce did the CURES bill in 2016. There are now newer therapies on the horizon that were not even contemplated the last time that this bill was authorized. Mr. Speaker, I was in practice for 30 years. I worked with families and with patients suffering from this very complex disease. Proper treatment requires knowledge, intervention, and care coordination.…”