The world of childhood cancer is one you aren’t familiar with, until you have to be. It’s a world where more than 40,000 children undergo cancer treatment each year. In this world the average age at diagnosis is six years old, and one in five of those kids will die. It’s the leading cause of death by disease in children under the age of 15 in the U.S. No one wants to be a part of that world.
Childhood cancer is not one disease–there are 16 major types of pediatric cancers and over 100 subtypes. The causes of most childhood cancers are unknown. Childhood cancer research is vastly and consistently underfunded, receiving only four percent of the national oncology budget.
How do you fight such a world?
Today, one Texas girl is showing us all from the nation’s capital.
Sadie Keller was seven years old when she was diagnosed with Leukemia in 2015. She immediately began to notice how much kids in the hospital were suffering from this awful disease. Sadie and her family began researching and learning everything they could about childhood cancer and its funding. She decided she wanted to start a nonprofit organization to bring cancer kids joy and to advocate for a research and funding. The Sadie Keller Foundation was born and even in the midst of fighting her own cancer, Sadie began collecting toys for “Sadie’s Sleigh” and Milestone Gifts to give to fellow cancer patients and survivors. Sadie told Fox News that, “Seeing other kids with cancer happy for once instead of being worried for their health,” was what motivated her to collect more than 18,000 toys for kids in the DFW Texas area since 2015.
Sadie’s second mission was to advocate for a change nationally in how childhood cancer is researched and funded. She was able to get in contact with Representative Michael McCaul of Texas, Co-chair of the Childhood Cancer Caucus and they, along with a team of other officials began lobbying for the Childhood Cancer Survivorship, Treatment, Access & Research (or STAR) Act in 2015.
This act will specifically expand opportunities for childhood cancer research in the National Cancer Institute. It will also improve the way cases of childhood cancer are monitored and studied nationwide with funding to identify cases and collect them into a national childhood cancer registry. Thirdly, the act will improve the lives of the nearly 500,000 childhood cancer survivors across the nation. Eighty percent of childhood cancer survivors suffer from late effects of their disease or treatment, including secondary cancers and organ damage. This legislation enhances research on the late effects of childhood cancers, improve collaboration among providers so that doctors are better able to care for this population as they age. Finally STAR Act will require the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer.
This bill is the most comprehensive childhood cancer bill to ever be seen by Congress. Sadie was able to go to Washington D.C and tell her story to our nation’s legislators. In March 2018, the STAR Act passed the Senate; in May, it passed the House; and today, after three years of lobbying, the STAR Act is being signed by President Trump. By his side for the momentous occasion? Sadie, now 10 and cancer-free, who will see the bill she championed become law.
The world of childhood cancer is scary but, because of people like Sadie and Rep McCaul, that world just got a little bit brighter.