Florida Congressman Bilirakis Introduces Bill to Help Children with Rare Diseases

Below is a statement from Florida Congressman Gus Bilirakis (R) regarding a bill titled “Creating Hope Reauthorization Act of 2024.”

U.S. Representatives Gus Bilirakis (R-FL), Anna Eshoo (D-CA), Michael McCaul (R-TX), Lori Trahan (D-MA), Michael Burgess (R-TX), and Nanette Barragán (D-CA). introduced the Creating Hope Reauthorization Act of 2024. This important legislation will reauthorize the Creating Hope Act of 2011, which expanded the FDA priority review voucher program to incentivize pharmaceutical companies to develop new drugs for children with rare pediatric diseases.

Children are not little adults, and despite their significant need many kids throughout the country are suffering with rare diseases that don’t have treatments or cures because of the small population impacted by their individual condition and the high cost of bringing these specific treatments to market,” said Rep. Bilirakis. “The Rare Pediatric PRV program has been an effective tool for incentivizing the development of new and improved treatments for children with cancer and other rare diseases. I’m proud to help lead the charge in offering hope to these families by ensuring this successful initiative continues to help rare disease patients nationwide.

“Pediatric cancer is a leading cause of death among children, yet pharmaceutical companies avoid developing pediatric cancer drugs because of the small market size and high risks associated with studying and testing drugs in children,” said Rep. Eshoo. “This bill provides incentives for research and development by providing pediatric cancer drug developers with vouchers to speed up reviews by the Food and Drug Administration of new drug products. The Creating Hope Reauthorization Act will save children’s lives.”