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Washington, D.C. — U.S. Senators Marco Rubio (R-FL), Tim Kaine (D-VA), Jerry Moran (R-KS), Mark Warner (D-VA), Bill Cassidy (R-LA), and Bob Casey (D-PA) introduced the Gabriella Miller Kids First Research Act 2.0. This bipartisan 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. Congresswoman Jennifer Wexton (D-VA) introduced companion legislation in the U.S. House of Representatives in January of this year.
The bill is named in honor of Gabriella Miller, who died from a rare form of brain cancer at the age of 10. Miller worked to raise support for research into childhood diseases like cancer until her death in October of 2013.
“Pediatric cancer is a leading cause of death by disease among children, and it is critical that we discover new, innovative treatment options,” Rubio said. “No family should ever have to experience the horrific pain of losing a child, and that is why I will continue to push for funding and legislation that gets us closer to beating this nightmare disease.”
“We are extremely grateful for the continued leadership and support of Senator Rubio and all those who make the fight against childhood cancer a priority. Indeed our children deserve an opportunity to benefit from scientific innovation that holds the promise for new groundbreaking treatments and eventually a cure,” said Raymond Rodriguez-Torres, Chairman of the Live Like Bella® Childhood Cancer Foundation. “We are certain this collaborative effort will contribute to the well-being of generations of children to come,” he added.
Rubio has been a champion in the fight against pediatric cancer. In August 2020, his bipartisan Research to Accelerate Cures and Equity (RACE) for Children Act went into effect. The law provides children battling cancer with more innovative and promising treatment options.
As a member of the Senate Committee on Appropriations, Rubio has led the Senate in funding the fight against pediatric cancer. In the FY 2021 appropriations bill, Rubio secured:
- Pediatric cancer language, including Molecular Analysis for Therapy Choice (MATCH), language to enable researchers to map the genetic makeup of pediatric cancer to pave the way for new therapies.
- An increase of $119.4 million in funding for the National Cancer Institute ($6.56 billion total).
- An increase of $5 million for the Centers for Disease Control and Prevention’s Division of Cancer Prevention and Control ($386 million total).
For a full list of quotes from cosponsors, click here.
Background:
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 United States 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.