Backed by members of the Florida delegation, the “Gabriella Miller Kids First Research Act 2.0“ is gaining steam on Capitol Hill.

Back in the spring of 2021, U.S. Sen. Tim Kaine, D-Va., introduced the proposal with the support of U.S. Sen. Marco Rubio, R-Fla., and U.S. Sens. Bob Casey, D-Penn., Bill Cassidy, R-La., Jerry Moran, R-Kansas, and Mark Warner, D-Va.

“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,” Rubio’s office noted on Monday. “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.”

Kaine weighed in on the bill when he introduced it.

“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.”

“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 in May 2021. “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.”

“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 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,” Kaine’s office noted. “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.”

The bill was sent to the U.S. Senate Health, Education, Labor, and Pensions Committee where it has been for a year.

U.S. Rep. Jennifer Wexton, D-Va., introduced the U.S. House version of the bill at the end of January 2021 and reeled in almost 100 co-sponsors including U.S. Reps. Gus Bilirakis, R-Fla., and Darren Soto, D-Fla., Before his death last year U.S. Rep. Alcee Hastings, D-Fla., was also backing the proposal. In recent months, several members of the Florida delegation including U.S. Reps. Kathy Castor, D-Fla., Byron Donalds, R-Fla., Al Lawson, D-Fla., Stephanie Murphy, D-Fla., John Rutherford, R-Fla., and Maria Elvira Salazar, R-Fla.

Wexton’s bill was sent to the U.S. House Energy and Commerce and the Financial Services Committees. Last week, the Energy and Committee’s Health Subcommittee passed the proposal.

Bilirakis, who helped write the bill, weighed in on the proposal as it heads before the full committee.

“Pediatric cancer remains the number one disease that leads to the death of American children. While survival rates have improved for some types of pediatric cancers, thousands of children are lost to cancer each year and many more encounter life-threatening complications related to harsh chemotherapies. Children have significantly fewer treatment options than adults and oftentimes must rely on treatment regimens developed for adults because pediatric-specific treatments simply do not exist for many pediatric cancers and rare diseases. The Gabriella Miller Kids First Pediatric Research Program at the National Institutes of Health (NIH) is working to develop a more clear understanding of pediatric cancers, and holds the promise for the development of better treatments and possible cures. As a longtime advocate for children and rare disease patients, I am proud to join my colleagues in pushing for the continuation of this crucial research by providing new funding sources,” he said.

Kevin Derby
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