Bilirakis Rare Disease Treatment Bill

Rep. Gus Bilirakis (R-FL) has introduced H.R. 1223, the Orphan Product Extensions Now Accelerating Cures and Treatments Act (OPEN Act) that he says will help open the door to potentially hundreds of new treatments for rare diseases. In commenting on his bill on the House floor, Bilirakis said, “the OPEN Act would help make sure those suffering from a rare condition can finally find safe, effective, and affordable medication.”

A press statement says that because each rare disease affects a small patient population, there is little incentive for drug makers to run additional trials and bring major market drugs into rare disease markets. He says the bill would provide incentives for drug makers to repurpose mainstream treatments, at mainstream prices, for rare diseases.

Bilirakis says that over 150 rare disease patient advocacy groups support the OPEN Act.