WASHINGTON – U.S. Senators Bill Cassidy (R-LA), Tim Kaine (D-VA), Jerry Moran (R-KS), and Mark Warner (D-VA) introduced the Gabriella Miller Kids First Research Act 2.0. This 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.
The bill is named in honor of Gabriella Miller, 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 October of 2013.
“There’s nothing more heartbreaking than treating a suffering child. It’s critical that we fund more research to find new, innovative treatments,” said Dr. Cassidy. “This bill does just that while honoring Gabriella Miller’s memory.”
“Gabriella Miller was a passionate activist and fighter. We honor her memory by continuing her work in making sure pediatric disease research is a priority,” said Kaine. “This bipartisan legislation would provide a critical source of funding to improve research in pediatric cancer and diseases.”
“Cancer is the leading cause of death by disease among children, and we must better understand this horrific disease,” said Moran. “This legislation, named in honor of Gabriella Miller, will direct additional resources to the NIH to research cures and treatments for cancer in children.”
“We owe it to Gabriella, her family, and all the children who’ve lost their lives too soon to find a cure for these rare pediatric diseases,” said Warner. “I’m proud to be joining my colleagues on this bill that would provide an additional funding stream for critical research that could save lives.”
While cancer is the leading cause of death by disease among children past infancy, childhood cancer and other rare pediatric diseases remain poorly understood. According to the National Cancer Institute, an estimated 15,590 children and adolescents under the age of 19 will be diagnosed with cancer, and 1,780 will die of the disease in the U.S. in 2021. Only 4% 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 thus far. While Congress has appropriated $12.6 million for the Kids First Program annually since Fiscal Year 2015, this legislation would make additional funding available to appropriators to further support pediatric and childhood cancer research.