Why Not Kids® is the question we ask when we look at the funding disparity between adult and childhood cancer research.
In the 2018 Kentucky legislative session, Governor Matt Bevin and the Kentucky General Assembly recognized this urgent need and set a national precedent for state engagement in the fight against childhood cancer by appropriating $5 million dollars for collaborative childhood cancer research efforts at the state’s two children’s oncology group hospitals. These research efforts are focused on promoting scientific advancements utilizing immunotherapy and molecularly-based treatment.
Jamie Ennis Bloyd joined ACCO’s staff part-time in November 2016, and full time in July 2017 as our Director of Government Affairs and External Relations. It was in this capacity that she worked with others to establish the KY Pediatric Cancer Research Trust Fund and associated appropriations as a model for ACCO’s What About Kids? State Research Initiative. Since that time, through the work of an expanded staff, ACCO has secured $72.4 million in state-based funding for childhood cancer research across 5 states.
In 2019, through support provided by Amazon, the American Childhood Cancer Organization expanded What About Kids® to states across the country. Today, this initiative continues to address the disparity between adult cancer and childhood cancer research funding, utilizing state cancer registry data in targeted awareness and advocacy campaigns.
Why is this so important?
Childhood cancer is the number one cause of death by disease for children. Childhood cancer kills more children than all other diseases combined yet in the last 2 decades over 185 new drugs have been developed for treating adult cancers compared to only 3 specifically approved for kids.
While survival rates have improved, two-thirds of children who survive childhood cancer will face significant to life-threatening late effects. Many childhood cancer survivors experience heart issues, organ failure, infertility, and even secondary cancers. Our kids deserve targeted, genomics-based research and treatment so that they are not merely surviving but thriving.
Some cure rates remain at 0%. Many children diagnosed with a pediatric brain tumor have no hope for survival and cure rates have remained the same for 40 years. Pediatric brain tumors have surpassed leukemia as the deadliest form of childhood cancer. Through research funding provided by Why Not Kids®, epidemiologists at the University of Kentucky have identified three clusters of pediatric brain tumors within the state. In these areas there is an 87% statistically significant higher rate of children diagnosed with Central Nervous System/Brain Tumors than what would be expected in other areas.
[1] Information based on 2016 RS HB 303, 2014 RS HB 235, 2012 RS HB 265 and provided by LRC Appropriations and Revenue staff on 7/19/2017