We thank Senators Lamar Alexander, Patty Murray, Bob Casey and Johnny Isakson for their leadership and commitment to children with rare diseases. We also thank Representatives Fred Upton, Frank Pallone, Diana DeGette, Michael McCaul, G.K. Butterfield and Chris Van Hollen for their leadership and support of drug development for children.
With the passage of the Advancing Hope Act, Congress will have three more months to negotiate a more permanent reauthorization. We hope Congress will pass The 21st Century Cures Act, which includes a reauthorization of the Creating Hope Act pediatric PRV.
We urge Congress to pass the Advancing Hope Act on a permanent basis. Drug development takes 5-10 years, and a drug development incentive program should have a duration at least as long. As a result of the success of the Creating Hope Act pediatric PRV, Congress passed permanent PRV programs for Zika and Ebola this past year — now we ask Congress to pass a permanent PRV for children as well.