Orlando-based nonprofit, Cannonball Kids’ cancer Foundation (CKc), announced that Report Language accompanying the House of Representatives FY 2021 Labor, HHS, and Education Appropriations Bill – originally drafted by the organization – was included in the House Appropriations bill which passed July 13th by a 30 to 22 vote. The nonprofit organization says this accomplishment would not have been possible without the support and leadership of Congresswoman Stephanie Murphy.
The Report Language directs the National Cancer Institute to convene childhood cancer researchers and advocates to determine the most appropriate survivorship metric including data on survival and mortality due to late effects of cancer and its treatments. Current metrics used to determine the mortality and survival statistics for childhood cancers do not fully capture the long-term health issues or death rate related to these diseases.
“Right now a child or adult that lives five years from the date of diagnosis, whether they are rid of cancer or not, is considered a survivor,” said Karen Revels, CKc Executive Director. “If this is the only way we measure survivorship, we’re not considering the long-term impact of the disease or its treatment on children. This task force will establish metrics that can be used to paint a more detailed picture of survivorship so we can invest in life-saving research.”
“For too long, the medical community has imposed an adult metric of survivorship on children with cancer,” said Michael Wiggins, CKc board chair and father to Cannon Wiggins, who was diagnosed with neuroblastoma at 20 months old. “Five children die each day from either cancer or its treatment in the U.S., many of them after years spent battling their disease. It is an injustice to their families to call these kids ‘survivors’ simply because five years has passed since their diagnosis. This inadequate metric has thwarted efforts to find better treatments for kids and to ultimately finding cures. This report language is a step toward finding child-specifc approaches to treating pediatric cancer, and CKc is proud to partner with Congresswoman Murphy on this affect this change.”
Pediatric cancer remains the number one killer by disease of children in the United States. Forty-three children are diagnosed with cancer and every day at least seven children will die from cancer or the side-effects of the existing treatments. As many as 95% of childhood cancer “survivors” are likely to experience at least one late effect of treatment, with a third suffering life-threatening and chronic side effects and another third suffering moderate to severe health problems. Pediatric cancer treatments have gone largely without progressive developments for over 20 years; for some forms of childhood cancers, the survival rate is still 0%.
The recent outbreak of coronavirus has compounded challenges facing children with cancer by limiting or eliminating the necessary travel associated with treatment. Clinical trials funded by Cannonball Kids’ cancer Foundation are currently coming back online, but the delay in treatment is predicted to impact survivorship.
CKc is transforming this landscape by funding innovative, first-of-its-kind research and educating the public on the realities of pediatric cancer, both the rate of survivorship for various cancers and the impact of pediatric cancer treatments on survivors.
[The “c” in cancer in the name Cannonball Kids’ cancer Foundation is intentionally lowercase to give the word “cancer” an inferior status.]