By Jamie Bloyd
Kentucky is known for its basketball, bourbon, horses….and high cancer rates. Most Kentuckians are familiar with the high rates of lung cancer in our state. I was too, my grandmother having been diagnosed in my early 20’s. Most Kentuckians also know that we consistently rank at the very top of overall cancer incidence in the country. What I’ve found is that most Kentuckians don’t know that kids get cancer too and in fact, that childhood cancer is the number one cause of death by disease for children in the United States. Most Kentuckians don’t realize that children are not simply small adults and adult chemo can’t just be dosed down to effectively cure kids.
Until my own son was diagnosed in March 2014, I didn’t realize how urgent this call to action for awareness and policy change really was. Now not only do I know that childhood cancer is the leading cause of death by disease in children in the United States but two-thirds of children who do survive will develop long-term, late effects. One-fourth of those children will have a life-threatening side effect, including secondary cancers from toxicity of treatment. Believe me, all of that is enough to keep me up at night!
Shocked by the very sudden onset of my son’s symptoms and the ensuing diagnosis, I was equally shocked to learn of the very large disparity that exists between the amount of funding the federal government allocates for adult and childhood cancer research. For comparison in federal funding and drug development in adult versus childhood cancer research, in the past 3 decades only 4 new drugs have been developed specifically for childhood cancer while more than 185 have been developed for adults. In the wealthiest country in the world, how can it be that we aren’t doing more for childhood cancer and our kids are still receiving drugs from the 1950’s? Using our deep pain for a purpose, I took action.
A lobbyist at the time of diagnosis, I quickly realized the gap in state-level engagement and funding for childhood cancer. Working with state legislative commission staff, I discovered in the last 3 biennial state budgets over $15 million dollars had been allocated to adult cancer research. Never in the history of the Commonwealth of Kentucky had the legislature invested in broad-based support of pediatric cancer, causing me to wonder aloud, “if state funds have been allocated to adult cancer research – why not kids”?
In 2018, led by Senator Max Wise and Governor Matt Bevin, state leaders in Kentucky recognized this urgent need and set a national precedent for state engagement in the fight against childhood cancer by appropriating first time funding of $5 million dollars to the Kentucky Pediatric Cancer Research Trust Fund, a collaborative entity created to eliminate silos and foster innovative childhood cancer research. Already this new funding has resulted in the revelation of a cluster of a 40-county area in Kentucky in which children have an 87% higher incidence of pediatric brain tumors than what would be expected.
September is Childhood Cancer Awareness Month, please consider taking time to contact your state legislators and tell them to make sure Kentucky keeps leading the way in state-level childhood cancer research funding by once again including a budget allocation in 2020’s legislative session. You can take action at www.acco.org/takeaction. If you are interested in joining in our advocacy efforts, please contact me at firstname.lastname@example.org…because kids can’t fight cancer alone!
The nation’s largest grassroots organization at the forefront of the crucial battle against childhood cancer, the American Childhood Cancer Organization is dedicated to shaping policy, supporting research, raising awareness, and providing educational resources and innovative programs to children with cancer, survivors, and their families. Learn more about the efforts of the Kentucky Pediatric Cancer Research Trust Fund at whynotkids.com.