May 16 2023
WASHINGTON – Today, during Brain Cancer Awareness Month, U.S. Sens. Mark Warner, Tim Kaine (both D-VA), and Jerry Moran (R-KS) 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)—which Kaine helped create—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-10) introduced a version of the legislation in the U.S. House of Representatives.
The bill is named in honor of Gabriella Miller, a Leesburg, Virginia 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 October of 2013. In 2014, Kaine honored her by championing the Gabriella Miller Kids First Research Act, which established a Ten-Year Pediatric Research Initiative at the NIH and authorized $12.6 million per fiscal year through FY23 for pediatric disease research. Since President Barack Obama signed the original bill in 2014, $126 million has been directed to pediatric cancer research at the NIH through the Gabriella Miller Kids First Research program.
“I can think of no better way to honor the memory of Gabriella and other children who have lost their lives to rare pediatric cancers than by passing this legislation, which would provide crucial, sustainable funding for research to advance lifesaving treatments,” said Sen. Warner.
“Gabriella Miller was a Virginian and a passionate activist, and it’s my mission to honor her by working to make sure pediatric disease research is a priority in Congress,” said Sen. Kaine, who serves on the Senate Health, Education, Labor and Pensions Committee. “I’m proud to join together with colleagues from both sides of the aisle in introducing this legislation, which would provide a crucial source of funding for the pediatric cancer and disease research that can support treatments and save lives in the years to come.”
“Cancer is the leading cause of death by disease among children, and we must better understand this horrific disease,” said Sen. Moran. “By directing new resources to NIH to research cures and treatments for cancer in children, we can help save lives and honor the memory of Gabriella Miller.”
“It is unacceptable that less than 8% of the federal cancer research funding goes towards childhood cancer while tens of thousands of children are diagnosed each year in the U.S. – and cancer is taking more children’s lives than any other disease right now,” said Rep. Wexton. “I’m proud to lead this bipartisan, bicameral legislation to build on the remarkable work of the Kids First research programs and boost funding for treatments and cures that can save kids’ lives. It’s been an honor to work with Ellyn Miller, a constituent and Gabriella’s mother, as well as my colleagues on both sides of the aisle to deliver real change so no family has to go through what the Millers have faced.”
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 9,910 children under the age of 14 will be diagnosed with cancer, and about 1,040 will die of the disease in the United States in 2023.
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.
The legislation is also cosponsored by U.S. Sens. Martin Heinrich (D-NM), Marco Rubio (R-FL), Tina Smith (D-MN), Steve Daines (R-MT), Peter Welch (D-VT), Shelley Moore Capito (R-WV), Ted Budd (R-NC), and Chris Van Hollen (D-MD).
You can view the full bill text here.