Bill named for ‘Virginian and a passionate activist’ in fight against pediatric cancer

Gabriella Miller was 10 years old when she died in 2013 of an inoperable brain tumor.

The Ten-Year Pediatric Research Initiative Fund was created because of her advocacy for lawmakers to stop talking and do something. The fund authorized $12.6 million in annual funds for childhood disease research, but it expires at the end of June 2023.

U.S. Rep. Jennifer Wexton of Virginia introduced the Gabriella Miller Kids First Research Act 2.0 today with Reps. Tom Cole of Oklahoma, Gus Bilirakis of Florida and Debbie Dingell of Michigan. The bill was introduced in the U.S. Senate by Sens. Tim Kaine of Virginia and Jerry Moran of Kansas. The new legislation would reauthorize and increase funding for the National Institute of Health’s Gabriella Miller Kids First Pediatric Research Program to support lifesaving research of treatments for childhood cancers.

“It is unacceptable that less than 8 percent of the federal cancer research funding goes toward 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,” Wexton said. “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.”

Ellyn Miller is Gabriella’s mother and founder and president of the Smashing Walnuts Foundation. She said her daughter would be 20 years old today, living a full and wonderful life.

“I want to say to Gabriella, we have been doing! We have been making progress! But many more families have suffered and more needs to be done. So I am grateful to Congresswoman Wexton and members across the aisle who are doing something wonderful for children who suffer from cancer and other debilitating diseases. Building off the great success of the ‘Gabriella Miller Kids First Research Act,’ Rep. Wexton’s bipartisan legislation brings additional funding to continue the work done to date by NIH for much-needed research for childhood cancers and diseases. My heartfelt thanks to all the Members of Congress who have joined together to support the search for better treatments and cures for our children,” Miller said.

Cole has long advocated for medical research of illnesses and diseases that affect the most vulnerable.

“The Gabriella Miller Kids First Research Act 2.0 would expand funding for research on childhood diseases. By doing this, we can hopefully uncover links between childhood cancer and birth defects and save the lives of children. I am proud to be a co-sponsor of this important piece of legislation,” Cole said.

Dingell said that lawmakers have a responsibility “to ensure pediatric disease research remains a top priority, not only to honor those who have lost their battles, but to protect the children of future generations. This research will save lives.”

According to Bilirakis, the no. disease that leads to the deaths of American children is cancer. Survival rates have improved, but thousands of children are still lost each year to cancer.

“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 large-scale data resource to help researchers uncover new insights into the biology of childhood cancer and structural birth defects, including the discovery of shared genetic pathways between these disorders. This foundational research is critical for facilitating a better 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,” Bilirakis said.

More than 15,000 children are diagnosed with cancer in the U.S. every year, and the number has increased in recent decades. Pediatric cancer spreads differently than adulthood types of cancer, and must be treated differently. Even when the cancer is cured, many children suffer with long-term health issues and disabilities.

“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,” Kaine said.  “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.”

Twenty other members of Congress co-sponsored the legislation, including Virginia’s Jennifer McClellan.