In memory of Novie Ridley and in honour of all the others who are fighting, who survived and those who have passed away due to childhood cancer. Together we will crush and put an end to childhood cancer. December 2024 a spending bill removed several bipartisan provisions that were designed to advance childhood cancer research and treatment access, further deepening an already substantial funding and support crisis. 

What has been lost:

The Accelerating Kids' Access to Care Act: This provision aimed to streamline access to clinical trials for children with cancer by reducing bureaucratic barriers, such as interstate regulatory hurdles. Its removal limits the ability of children to participate in cutting-edge trials, delaying access to potentially life-saving treatments. This is particularly detrimental for pediatric cancers, which often require novel therapies due to their distinct biology compared to adult cancers. 

The absence of this act disproportionately affects families in rural or underserved areas who face logistical and financial barriers to accessing out-of-state trials. 

The Creating Hope Reauthorization Act: This act incentivized pharmaceutical companies to develop drugs specifically for pediatric cancers by offering priority review vouchers. These vouchers reward companies with faster FDA review for other drugs, encouraging investment in low-profit pediatric cancer research. Its exclusion from the spending bill reduces the financial incentive for companies to prioritize pediatric drug development, leaving fewer treatment options for children with rare or aggressive cancers.

The original Creating Hope Act (2012) has driven the development of drugs like Unituxin for neuroblastoma. Without reauthorization, the pipeline for new pediatric cancer drugs is at risk, as companies may prioritize adult cancers with larger market potential.

The Give Kids a Chance Act: This legislation would have facilitated access to combination therapies for children with relapsed or refractory cancers, allowing researchers to test multiple drugs simultaneously. Its absence hinders the development of innovative treatment protocols, which are critical for children who have exhausted standard therapies. This is a significant setback, as combination therapies have shown promise in improving outcomes for complex pediatric cancers like high-risk neuroblastoma or relapsed leukemia. (Which is what Novie had.)

Combination therapies are showing promise in pediatric oncology, as seen in trials combining immunotherapies and targeted agents. The lack of this act delays this research, reducing survival rates for children with aggressive, relapsed or refractory cancers. 

Collectively, these cuts eliminated approximately $150-$190 million in potential funding and support for pediatric cancer research and treatment programs. Their removal exacerbates the already limited federal funding for childhood cancer, forcing researchers to compete for a shrinking pool of resources, delaying studies and limiting research projects.

Novie was very passionate about helping the world move closer to finding safe and effective treatments for childhood cancer. Within the last year these cuts have moved us farther away from that goal. To try and help directly address these devastating gaps in funding, we’re fundraising now for Childhood Cancer Data Lab. Thank you to Alex's Lemonade Stand Foundation for making this possible.