Press Releases

WASHINGTON, D.C. – Today, Congresswoman Lori Trahan (D-MA-03), a member of the House Energy and Commerce Committee’s Health Subcommittee, celebrated the unanimous passage of her bipartisan Creating Hope Reauthorization Act of 2024 in the U.S. House of Representatives. The legislation will reauthorize a key program that incentivizes the development of new drugs 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, currently one of the leading causes of death for kids, 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 children’s lives. The unanimous support for this legislation in the House is a testament to the necessity and effectiveness of this initiative, and I look forward to working with our colleagues in the Senate to send it to the President’s desk to become law.”

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, 36 of which previously had no safe or effective FDA-approved treatments for children.

The Creating Hope Reauthorization Act was included in the Give Kids a Chance Act, a bipartisan legislative package created to advance pediatric disease treatment. During a markup last week, members of the House Energy and Commerce Committee unanimously passed the Give Kids a Chance Act. In addition to Trahan’s legislation to advance pediatric rare disease treatments, the package also authorizes the FDA to direct companies to research combinations of therapies and cancer drugs in pediatric patients. 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. Last week, 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 now moves to the Senate where companion legislation has been introduced by Senators Bob Casey (D-PA) and Markwayne Mullin (R-OK).

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