Pasco Reporter

Last night, Congressman Bilirakis advanced his healthcare agenda with three measures he authored passing the House of Representatives by unanimous vote. These measures aim to help patients suffering from rare diseases.

The Congenital Heart Futures Reauthorization Act of 2024 reauthorizes funding for research and awareness efforts at the Department of Health and Human Services (HHS) on congenital heart disease (CHD). "As a co-founder of the Congenital Heart Caucus, I’ve become familiar with the struggles patients with congenital heart disease and their families face. Our legislation will bring us one step closer to enhancing better treatment options and improving outcomes for all patients suffering with this condition. We’ve seen that this program yields positive results, and I urge my Senate colleagues to join us as we work to help future generations live longer, healthier lives," said Congressman Bilirakis.

As Co-Chair of the Rare Disease Caucus, Congressman Bilirakis has supported rare disease patients by streamlining FDA processes and encouraging treatment development for smaller patient populations. He co-authored the RARE Act, which provides regulatory certainty for rare disease drug development by codifying the FDA’s interpretation that orphan drug exclusivity is awarded based on a product’s FDA-approved indication rather than the entire disease.

Bilirakis also co-leads legislation to reauthorize the Creating Hope Act of 2011, which expanded the FDA Priority Review Voucher (PRV) program to incentivize pharmaceutical companies to develop new drugs for children with rare pediatric diseases. Since its inception, 53 PRVs have been awarded across 39 different rare pediatric diseases. The Creating Hope Reauthorization Act continues this priority review voucher program for another five years. "The Rare Pediatric PRV program has been an effective tool for incentivizing the development of new and improved treatments for children with 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," remarked Bilirakis.

During the committee process, both of these Bilirakis bills were amended into the Give Kids a Chance Act, which requires companies to study combination products for pediatric cancers. This comprehensive legislative package passed unanimously in the House last night.