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Two Bilirakis Bills Considered During Health Hearing

July 29, 2020
Press Release

PRESS RELEASE:  July 29, 2020

CONTACT:  Summer Blevins 727-232-2921


Two Bilirakis Bills Considered During Health Hearing


Washington, DC:  During today’s Health Subcommittee hearing in the U.S. House of Representatives, legislation to renew several key public health programs were contemplated, including two bipartisan bills co-authored by Congressman Gus Bilirakis. The TRANSPLANT Act of 2019, spearheaded by Representatives Matsui and Bilirakis, reauthorizes the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory. Through renewed federal funding for the vital national bone marrow and cord blood registry and coordinating centers, which facilitate bone marrow and cord blood donations, the TRANSPLANT Act ensures the continued provision of lifesaving transplants to treat diseases like blood cancer, sickle cell anemia, and inherited metabolic or immune system disorders. Text of the bill can be found here.  “This bill is about providing hope to those who are struggling with life-threatening illnesses.  This federal program provides critical support in the advancement of research for better treatments and the infrastructure necessary to organize registries which help ensure transplant patients have access to life saving procedures.  Its reauthorization is vital, and I hope our colleagues will join us in expediting passage of this important legislation,” said Congressman Gus Bilirakis, (R-FL).


The second bill co-authored by Bilirakis which was considered during the hearing is the Creating Hope Reauthorization Act.  This critical legislation would make the Priority Review Voucher (PRV) program permanent for rare pediatric diseases.  The PRV was first created in 2012, with the passage of the Food and Drug Administration Safety and Innovation Act (FDASIA) to incentivize the development of therapies to treat rare pediatric diseases. While progress has been made in the development of pediatric therapies – in fact, 22 therapies have been approved for the treatment of 18 rare pediatric diseases since 2012 – there is still more work to be done. Nearly 95-percent of all rare diseases do not have an FDA-approved treatment, leaving many patients without options.  “Pediatric cancer remains the number one disease that leads to the death of American children. While survival rates have improved for some types of pediatric cancers, thousands of children are lost to cancer each year and many more encounter life threatening complications related to harsh chemotherapies. Children have significantly fewer treatment options than adults and oftentimes must rely on treatment regimens developed for adults because pediatric-specific treatments simply do not exist. Children are not little adults, and despite their significant need, pharmaceutical companies have had trouble developing treatments for pediatric cancer and rare diseases because of the small population and high cost of bringing these specific treatments to market, said Congressman Bilirakis.  “The PRV program has been an effective tool for incentivizing the development of better treatments for children with cancer.  Our legislation makes sure this successful program continues.”