On April 27, 2021, NNCCF helped make a difference in childhood cancer funding and research by participating in the virtual 2021 Childhood Cancer Action Day with the Alliance for Childhood Cancer. We joined more than 250 advocates from 37 states to ask Congress to fully fund the STAR Act, the most comprehensive childhood cancer bill in history, for the fourth straight year.
Due to our collective efforts and advocacy, the House Appropriations Committee set aside $80 million for childhood cancer research programs in 2022 which fully funds the STAR Act. It is a huge step in the federal funding process and we will continue to make childhood cancer a national priority.
NNCCF staff and families virtually met with members and staffers in the healthcare jurisdiction to urge this support. In attendance were NNCCF survivor Kalia and her mom Jenna, survivor Landen and his parents Debbie and Craig, Tiffany, a mother of survivor Felina, and survivor Katie and her mother Lynn. NNCCF was able to meet with Rep. Amode staff, Rep. Lee, Sen. Cortez Masto and Sen. Rosen staff.
During the meetings, Debbie, Landen’s mother, urged representatives to continue support, “Please help us fight this plague that is cancer and give our children promise for a better life; allow them to grow and fulfill their dreams,” she said.
Landen was diagnosed with and aggressive bone and soft tissue tumor in February 2020. During ten months of intense treatment a small list of what he endured included 34 weeks of chemotherapy, 28 radiation treatments, more than 12 blood transfusions, five surgeries, five months with an open wound on his shoulder and four emergency trips to the E.R.
“Landen is a fighter. He is the epitome of grace, strength, and courage, he is our hero. And he, like all other children impacted by this horrible disease, deserves a future,” said Debbie.
1 out of 264 children will be diagnosed with childhood cancer in the United States, before the age of 20, and because of the treatments they received, by age 50, more than 99% of childhood cancer survivors have a chronic health problem and 96% have severe or life-threatening conditions.
“We cringe every time Landen’s oncologist reminds us that due to his treatment Landen at 16-years-old has the heart of a 35 to 40 year old,” said Debbie. “Federal funding for databases and research is so important for these children with these rare diseases. Without this funding doctors will continue to simply prescribe the same toxic treatment that fails to save enough children and leaves those that do survive with lasting effects.”
On June 5, 2018, the STAR Act, was signed into law. In the last three years, Congress provided $30 million each year to fund the programs created by the STAR Act. The STAR Act stands for: Childhood Cancer Survivorship, Treatment, Access and Research. “It expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, and enhances the quality of life for childhood cancer survivors,” said the Alliance for Childhood Cancer.
NNCCF recognized the need for more advocacy and research to find a cure and has advocated at each Childhood Cancer Action Day on Capitol Hill since 2006.