A RECENT REPORT published in Neuro-Oncology1 exposes an alarming reality for children, adolescents, and families facing pediatric brain cancer across the country. The Pediatric Brain Tumor Foundation (PBTF) funded this groundbreaking report by the Central Brain Tumor Registry of the United States (CBTRUS) to increase understanding of the scope and severity of this childhood disease.
PBTF is the largest patient advocacy funder of pediatric brain tumor research and leading champion for families and survivors, providing patients, caregivers, and siblings with information, financial assistance, and a community of support from the moment symptoms start, through diagnosis, treatment, and beyond. More children younger than age 19 are diagnosed with brain tumors, and dying of them, than ever before, whereas adults with brain cancer are experiencing a decline in the incidence of diagnosis and mortality rates.
There are significant disparities in the incidence of diagnosis and mortality rates among states. Although the report does not address the reasons for these disparities, it is known that differences in access to treatment, environmental factors, and emphasis on pediatric cancer in state health policies warrant closer study. Pediatric brain cancer does not discriminate but is a disproportionate threat to non-White children, who experience lower survival rates than White children.
Although mortality rates have increased, the need for attention to survivorship is greater than ever. The estimated number of children and adolescents in the United States living with the aftereffects of brain tumors has increased by 45% since 2010.
A Better Future for Kids
PBTF is committed to leading the way toward a future without childhood cancer. This report provides insights that are shaping its response to this public health crisis. As a result of its analysis of the report, the organization intends to take the following steps:
- Focus greater attention on state-level health policy and advocate for emphasis on pediatric health
- Redouble its commitment to funding promising early-stage research. Every $1 PBTF invests attracts $12 in follow-on funding.
- Direct family support resources to states where the need is greatest and where each dollar can make the most difference.
DISCLOSURE: For full disclosures of the report authors, visit academic.oup.com.
REFERENCE
1. Ostrom QT, et al: CBTRUS Statistical Report: Pediatric Brain Tumor Foundation childhood and adolescent primary brain and other central nervous system tumors diagnosed in the United States in 2014–2018. Neuro Oncol 24(suppl 3):iii1-iii38, 2022.
