WASHINGTON (WFXR) – Last week, U.S. Sens. Mark Warner (D-VA), Tim Kaine (D-VA), Jerry Moran (R-KS) and Bill Cassidy (R-LA) introduced the Gabriella Miller Kids First Research Act 2.0.
The legislation would provide a new source of funding for the National Institutes of Health’s (NIH) Gabriella Miller Kids First Pediatric Research Program (Kids First) by redirecting penalties collected from pharmaceutical, cosmetic, supplement, and medical device companies that break the law to pediatric and childhood cancer research.
In 2014, Warner and Kaine established the initial Gabriella Miller Kids First Research Act that brought together the Ten-Year Pediatric Research Initiative at the NIH and authorized $12,6 million per fiscal year (FY) through FY23 for pediatric disease research.
Since President Barack Obama signed the original bill in 2014, a total of $88.2 million has been directed to pediatric cancer research at the NIH through the Gabriella Miller Kids First Research Program.
Congresswoman Jennifer Wexton (D-VA-10) introduced a version of the legislation in the House of Representatives back in January.
The bill is named in honor of Gabriella Miller, a Leesburg resident who died from a rare form of brain cancer at the age of 10.
Miller was an activist and worked to raise support for research into childhood diseases like cancer until her death in Oct. of 2013.
While childhood cancer is the leading cause of death by disease among children past infancy, childhood cancer and other rare pediatric diseases remain poorly understood.
The National Cancer Institute says an estimated 15,590 children and adolescents under the age of 19 will be diagnosed with cancer and 1,780 will die from the disease across the country in 2021.
Only four percent of the National Cancer Institute’s $6.56 billion budget is specifically allocated to the development of treatments and cures for childhood cancer and other rare diseases.
The Gabriella Miller Kids First Research Program has supported critical research into pediatric cancer and structural birth defects and has focused on building a pediatric data resource combining genetic sequencing data with clinical data from multiple pediatric cohorts.
The Gabriella Miller Kids First Data Resource Center is helping to advance scientific understanding and discoveries around pediatric cancer and structural birth defects and has sequenced nearly 20,000 samples so far.
While Congress has appropriated $12.6 million for the Kids First Program annually since FY15, this legislation would make additional funding available to appropriators to further support pediatric and childhood cancer research.
This legislation is also cosponsored by U.S. Sens. Bob Casey (D-PA) and Marco Rubio (R-FL).