Editor’s Note: Most times, when you meet someone for the first time, either in person or digitally, you never know which road they used to come into your life. Rachel Edwards certainly used the road less traveled when she came into Four Square Clobbers Cancer. Rachel is a four time cancer survivor and a Senior at Clemson University. The number 4 in her story is almost a theme: 4 Timer, 4 Square, 4% of NCI budget, only 4 drugs have ever been developed specifically for childhood cancers.
This week, U.S. Senator Tim Scott will meet with the H.E.L.P. committee to discuss important childhood cancer legislation. The committee will review a bill that could save thousands of children who are fighting for their lives. As a four time cancer survivor, I’m appalled by the thought of the committee potentially blocking the bill.
Cancer stripped me of my childhood. Starting at age 10, I was no longer able to participate in sports, see my friends, or even go to school. My social life was reduced to occasional visits from friends and family, and only if my white blood counts were high enough to allow them near me. Three remissions in five years forced me to grow up pretty quickly.
Cancer remains the leading cause of death by disease past infancy among children in the United States, yet the same treatments that existed in the 1970s continue with very few changes. There is not enough research being done in the realm of pediatric cancer, and that’s simply because researchers don’t have the resources.
The National Cancer Institute, which receives its funding from the federal government, only dedicates 4 percent of its budget to pediatric cancer research. That is 4 percent for ALL subtypes of pediatric cancer, from Leukemia to Rhabdomyosarcoma to Diffuse Intrinsic Pontine Glioma. That is truly disheartening.
The U.S. legislators decide where the money goes, but they don’t understand that children are not tiny adults. Pediatric and adult cancers are different, and so are the necessary treatments. Children battling cancer spend every waking moment worrying. They worry about adverse reactions to treatments created for adults, the mental and physical pain inflicted by their condition and the long-term side effects that arise after receiving their long awaited N.E.D. scan. All of that is in addition to having to accept the possibility of a tragic fate. Meanwhile most of their friends spend their days racing each other on the playground or trying out the latest Snapchat filters.
The Childhood Cancer Survivorship, Treatment, Access and Research (S.T.A.R.) Act would ease the worries of these kids and their families. It would expand opportunities for research, improve efforts to identify and track incidences and enhance the quality of life for childhood cancer survivors. It would allow research in South Carolina to make groundbreaking advancements, and it would improve the quality of life for children in our community. But legislators across the nation, legislators like Senator Scott and Senator Lindsey Graham, have decided not to support this bill, making it impossible for it to pass. These senators have decided that the kids in their communities that are fighting this battle are not worth their support and have provided no explanation as to why. That’s why I’m fighting, along with a nonprofit called South Carolina With Purpose, to give a voice to the children who have been ignored for so long.
Government officials talk about investing in the future and preparing America for tomorrow, but it’s amazing how little politicians care about children. People under 18 may not be able to vote, but they matter. So, I’m calling on Senator Scott and Senator Graham to give these kids a chance.
Join our movement and tell your senators that we need their support. Sign our petition. Tag them in a tweet. Call their office. Flood their inboxes. Do something! Children don’t have a vote in congress, but our senators, who are constantly overlooking this problem, do. I am now a college senior and six years cancer-free. I owe my life to a clinical trial, and that’s why I’m asking you to show your support.
The Senate H.E.L.P. Committee will meet on Wednesday to decide which health-related issues are worthy of making it to the senate floor. Don’t let the Childhood Cancer S.T.A.R. Act get overlooked.
Author: Rachel Edwards