Press Releases

WASHINGTON, D.C. – Today, Congresswoman Lori Trahan (D-MA-03), a member of the House Energy and Commerce Committee’s Health Subcommittee, secured unanimous full committee passage of the Creating Hope Reauthorization Act of 2024, her bipartisan legislation to reauthorize a key program that incentivizes the development of new medications and treatments for children battling rare pediatric diseases. Trahan introduced the legislation earlier this year alongside Representatives Michael McCaul (R-TX-10), Anna Eshoo (D-CA-16), Gus Bilirakis (R-FL-12), Michael Burgess (R-TX-26), and Nanette Barragán (D-CA-44).

“When a child is battling a rare disease like cancer, they deserve access to the best treatments possible,” said Congresswoman Trahan. “The Creating Hope Reauthorization Act is a critical bipartisan effort to make sure those treatments are available while newer and more effective treatments are being advanced to save kids’ lives. I look forward to the work ahead to pass this legislative package when it’s considered on the House floor and with our colleagues in the Senate so we can get it across the finish line.”

Approximately 30 million Americans are affected by rare diseases, two out of every three of whom are children. However, treatments intended for adults are often too harsh for children, limiting their treatment options or even leaving them with life-altering complications after their disease is cured. The Creating Hope Reauthorization Act seeks to solve this problem by reauthorizing the U.S. Food and Drug Administration’s (FDA) cost-neutral priority review voucher (PRV) program, which incentivizes the development of treatments for rare pediatric diseases. Since 2012, the PRV program has spurred the development of therapies for nearly 40 different diseases, many of which had no safe or effective FDA-approved treatments for children.

During a House Energy and Commerce Committee markup today, members of the Committee unanimously supported passage of the Give Kids a Chance Act, a legislative package that includes key provisions from Trahan’s bipartisan legislation. The package also authorizes the FDA to direct companies to research combinations of therapies and cancer drugs in pediatric trials as well. The FDA is currently only authorized to direct pediatric cancer trials of single drugs, and the majority of these trials are conducted on children with relapsed cancer. However, kids with relapsed cancer are very rarely cured by one-drug treatments because their diagnoses are so advanced.

Since her appointment to the House Energy and Commerce Committee in 2021, Trahan has spearheaded multiple bipartisan initiatives to expand and improve pediatric health care. Yesterday, she secured passage by the full House of Representatives of her bipartisan  Accelerating Kids’ Access to Care Act, legislation that will break down barriers for children with complex medical conditions to make it easier for families to access out-of-state care. In July, she introduced the Bolstering Research and Innovation Now (BRAIN) Act, bipartisan legislation to strengthen research and treatment development for brain tumors, the leading cause of cancer-related death among children and young adults. In May, the House passed her bicameral and bipartisan Youth Poisoning Protection Act, bipartisan and bicameral legislation that would ban the consumer sale of products containing high concentrations of sodium nitrite, a meat-curing chemical that has been popularized in online suicide forums because of its lethality when ingested.

The legislative package containing Trahan’s Creating Hope Reauthorization Act of 2024 now moves to the House floor for consideration.

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