Kylie was a born performer who dreamed of being on stage. She didn’t lack talent. She didn’t lack ambition or work ethic. What she lacked was a chance to live beyond twelve years old because cancer robbed her of life and her dream and in many ways, it’s our fault.
We aren’t doing enough to combat the number one cause of death by disease in children.
Imagine our response were if there a murderer stalking our country and killing seven random children every day? We would collect every resource available to hunt him down and bring him to justice. Not one of us would rest until the nightmare ended. Did you realize that is happening – right now in 2017?
Every day in the United States, a school bus full of children are diagnosed with cancer and every day childhood cancer kills one out of every five children it affects. Yet the amount of money our government spends on cancers that affect children would be laughable, if it weren’t so deadly serious. In fact, we spend more on prostate cancer research, with an average cure rate of 95% and average diagnosis age of sixty-six years, than we do on all childhood cancers combined - all the while boasting that children are our future.
With overall National Institute of Health spending slashed under the new administration, that number will shrink even further. But there is hope.
When Kylie was diagnosed with Ewing’s sarcoma, an aggressive bone cancer, my employer urged me to have the DNA of her tissue mapped. He was funding genetic research at MD Anderson and facilitated the testing of Kylie’s tumor. The hope was that the results would show which genes were over-expressed and causing the mutation of cells. At the time, this type of research was making its way into adult treatments for cancer. We soon found out that with children, we weren’t there yet.
The mix of chemotherapy and radiation she received was decades old. In fact, if I had gotten the same cancer when I was her age, I would have received the same treatment. With all of our advances in science and medicine, most treatments for childhood cancers have remained the same for forty years. When our doctors received complete DNA results from her tumor tissue, they had no use for the data. Her treatment didn’t change one iota because just three years ago, genetic testing had yet to impact care in children.
This is changing. Through a grant from CURE Childhood Cancer, the Aflac Cancer Center at Children’s Healthcare of Atlanta is creating a new Precision Medicine Program. Joining a handful of existing programs, this innovative entity will take the fight against childhood cancer to the genetic level by identifying the root cause of the child’s cancer and targeting specific therapies directly at the wayward cells. No longer will we paint with a broad brush. Soon we will be able to isolate the offending cells and destroy only them. While most research takes years or even decades to get to the bedside, the new program will seek to enroll thirty patients in its first year. These patients will either have high risk tumors or relapsed cancer. That means that during year one, thirty children who have run out of options will have the chance at individualized treatment perfectly suited for their genomic abnormality. It will bring hope – and when you reach that point, hope is all you want.
This is exciting. Like a clinical trial, it must first start in patients who fail standard protocols. But the goal is that individualized genetic care soon becomes the frontline treatment for all childhood cancers.
It is too late for Kylie. And it is too late for the seven children we failed today. There are so many innocent lives at stake right now that we must do better. September is Childhood Cancer Awareness Month. Awareness only does so much. Children need better treatments and they are completely dependent on us. We must fund private, innovative research to give our children a chance to see their dreams fulfilled.