Senators Markwayne Mullin (R-OK) and Bob Casey (D-PA), both members of the Senate Health, Education, Labor, and Pensions (HELP) Subcommittee on Children and Families, jointly introduced the Creating Hope Reauthorization Act late last week.
This bipartisan legislation aims to ensure the continued development of drugs for treating rare pediatric diseases, including various forms of childhood cancer. Central to the bill is the extension of the Food and Drug Administration’s (FDA) Rare Pediatric Disease Priority Review Voucher (PRV) program, which incentivizes pharmaceutical companies to expedite the introduction of new treatments to market.
Senator Mullin highlighted the success of the Rare Pediatric Disease Priority Review Voucher program in fostering the development of treatments for children with rare medical conditions over the past decade.
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He emphasized the bill's goal to renew and extend the PRV, providing stability and fostering innovation to benefit a broader population of pediatric patients facing rare diseases.
“Over the past decade, the Rare Pediatric Disease (RPD) Priority Review Voucher (PRV) program has successfully helped incentivize and expedite the development of new treatments and cures for young children with rare conditions including pediatric cancer and rare genetic disorders,” said Senator Mullin. “Our commonsense bill will reauthorize and extend the PRV to provide greater stability and fuel innovation to benefit a far greater number of pediatric patients living with rare diseases. One in ten Americans are living with a rare disease, but less than 10 percent of all rare diseases have an approved treatment option. It is important we do all we can to improve access to innovative health care options — especially for children. Thank you to Sen. Casey for joining me on this important legislation.”
Senator Casey echoed these sentiments, stressing the need to sustain the voucher program to ensure ongoing innovation in treatments for critically ill children.
“Too many children suffer from rare diseases with few treatment options,” said Senator Casey. “Our bipartisan bill will keep this critical voucher program going so drug companies don’t stop innovating new treatments to help sick kids. This is an investment in finding treatments and cures for rare diseases so that children get the care they need.”
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The PRV program, established in 2012, has significantly impacted the lives of hundreds of thousands of children by incentivizing the development of treatments for 39 rare pediatric diseases, benefiting over 200,000 patients. Notably, 36 of these diseases lacked approved therapies before the introduction of treatments under this program.
The Creating Hope Reauthorization Act proposes extending the PRV program through September 30, 2030, marking a longer extension than previous reauthorizations. This extension aims to provide greater stability for innovators, encourage investment, and stimulate advancements in treatments for rare and neglected diseases that disproportionately affect children.
In addition to Senators Mullin and Casey, the bill has garnered bipartisan support from Senators Sherrod Brown (D-OH) and Susan Collins (R-ME). The legislation has received endorsements from prominent organizations such as Children’s Hospital of Philadelphia, EveryLife Foundation for Rare Diseases, Haystack Project, Kids v Cancer, Life Sciences Pennsylvania, National Organization for Rare Disorders, Nationwide Children’s Hospital, Penn State Hershey Children’s Hospital, and the Rare Disease Company Coalition. These endorsements underscore broad support for the bill's objectives in advancing pediatric healthcare innovation.
The introduction of the Creating Hope Reauthorization Act represents a concerted effort by lawmakers and healthcare advocates to ensure continued progress in developing life-saving treatments for children battling rare diseases.
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