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Brain Tumor Awareness Month Fact Sheet: PBTF Shines Light on Staggering Costs of Deadliest Childhood Cancer

04/19/22

More than 28,000 children in the U.S. are currently battling a brain tumor diagnosis, the deadliest childhood cancer and most common solid cancer in children and adolescents. Far too many children currently face no chance of long-term survival, and those who do survive must navigate the constant threat of recurrence and lifelong physical, cognitive, and emotional side effects.  

Ahead of Brain Tumor Awareness Month in May, the Pediatric Brain Tumor Foundation (www.curethekids.org/stay-connected) is sharing key facts about this overlooked and under-resourced disease. PBTF is the largest patient advocacy funder of pediatric brain tumor research and the leading champion for families and survivors. 

“Childhood brain cancer takes the backseat in research funding and awareness because the size of the population affected is small – defined as rare. We must stop minimizing the problem and defining this disease by the number of diagnoses because we are failing these children and their loved ones,” says Courtney Davies, PBTF President and CEO. “The reality is the size of the pediatric brain tumor population is disproportionately smaller than the staggering ramifications of this disease, which we measure in the years of life lost and the burden of survivorship. Every year, that adds up to 47,631 years of potential life and futures stolen from those who will never have another opportunity to hug their siblings, ride a bicycle, or dare to dream of joining our next great generation of problem-solvers and difference-makers.”  

Every day, PBTF works tirelessly to change the facts about childhood brain tumors: 

  • Cancer is the leading cause of death by disease in children, and brain tumors are the deadliest childhood cancer.[1] 
  • While new cases of brain tumors in adults are shrinking each year, incidence rates of pediatric brain tumors continue to grow.[1] 
  • There never has been an FDA-approved drug therapy developed specifically for pediatric brain tumors. Current “gold standard” treatments for pediatric brain cancer are over 40 years old and were developed to treat adults, not children.[2] 
  • Pediatric brain tumor survivors experience an average of 24 chronic health conditions by age 50 – compared to 9.2 in the general public and 17.1 for overall childhood cancer survivors. This is the highest for all childhood cancers.[3] 
  • Pediatric brain tumors represent the largest cause of Years of Potential Life Lost (YPLL) due to cancer, with an average YPLL of approximately 70 years.[4] 
  • A pediatric brain tumor or other childhood cancer diagnosis costs an average of $833,000 in medical costs and lost parental wages.[5] 
  • 1 in 4 families lose more than 40% of their annual household income because of treatment-related work disruption, while 1 in 3 families face other work disruptions such as having to quit work or change jobs.[5] 
  • Racial disparities persist among children with brain tumors. By race and ethnicity, five-year survival is lowest in pediatric patients who were non-Hispanic Black (70%) and highest in those who were non-Hispanic White (79%), in contrast to patterns in adults.[1] 

Pediatric brain tumors are one of the most challenging and under-resourced diseases facing families in the U.S., and a child’s diagnosis takes a brutal and life-long toll on every family member. PBTF walks alongside patients, caregivers, and siblings through every step of the journey by funding critical scientific and public health research and providing information, financial assistance, and a community of support from the moment symptoms start. 

Learn more about resources for patient families and ways to get involved in funding and advocating for pediatric brain tumor research at www.curethekids.org/stay-connected.

Click a pediatric brain tumor fact below to download and share on social media:

Sources: 
[1] Central Brain Tumor Registry of the United States (CBTRUS), www.cbtrus.org
[2] FDA-Approved Drugs for Childhood Cancer, National Cancer Institute, https://www.cancer.gov/about-cancer/treatment/drugs/childhood-cancer-fda-approved-drugs
[3] Nickhill Bhakta, MD, Qi Liu, MS, Kirsten K Ness, PhD, Malek Baassiri, MD, Hesham Eissa, MD, Frederick Yeo, et al., The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study, The Lancet, Volume 390, Issue 10112, September 2017, Pages 2569-2582, https://doi.org/10.1016/S0140-6736(17)31610-0
[4] Peter M de Blank, Quinn T Ostrom, Chaturia Rouse, Yingli Wolinsky, Carol Kruchko, Joanne Salcido, and Jill S Barnholtz-Sloan, Years of life lived with disease and years of potential life lost in children who die of cancer in the United States, Cancer Med, April 2015, Volume 4, Issue 4, Pages 608-619, https://doi.org/10.1002/cam4.410
[5] Coalition Against Childhood Cancer, Childhood Cancer Fact Library, www.cac2.org