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Why This Topic Is Important
Advances in the treatment of childhood cancers during the past 50 years have led to remarkable improvements in survival rates, but despite these advances more U.S. children and adolescents ages 1-19 die of cancer than any other disease (1). After accidents, suicide, and homicide, cancer is the leading cause of death among young people past infancy nationwide (2). In California, it is estimated that more than 1,700 children ages 0-19 are diagnosed with cancer each year (3). Approximately 1 in every 265 children in the state will develop some form of cancer before they reach age 20 (3).

The majority of children diagnosed with cancer survive into adulthood (1, 3). Children treated at pediatric institutions that provide intensive treatment, supportive care, and psychosocial services are more likely to have positive outcomes than those treated elsewhere.
For more information on childhood cancer, see kidsdata.org’s Research & Links section.

Sources for this narrative:

1.  National Cancer Institute. (n.d.). Cancer in children and adolescents. National Institutes of Health. Retrieved from: https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet

2.  National Center for Injury Prevention and Control. (2017). Leading causes of death reports, 1981-2016. Centers for Disease Control and Prevention. Retrieved from: https://webappa.cdc.gov/sasweb/ncipc/leadcause.html

3.  American Cancer Society, & et al. (2017). California cancer facts and figures 2017. Retrieved from: https://www.cancer.org/content/dam/cancer-org/online-documents/en/pdf/reports/california-facts-figures-2017.pdf
Policy Implications
Public policy plays a role in maximizing positive health outcomes and quality of life for children with cancer and their families. The Affordable Care Act addresses cancer treatment and prevention in several ways—including no lifetime caps on care, no denials based on pre-existing conditions, and the elimination of copays for prevention services—but there are a number of areas where policy changes can further improve services for children with cancer (1, 2). Policies can promote equitable, appropriate, and affordable access to diagnosis and therapies, support research to enhance prevention and treatment, and ensure that survivors of childhood cancer receive appropriate care for the late effects of the disease and its treatment, including risk factors for subsequent malignancies.

Policy options include:
  • Ensuring that all pediatric cancer patients, regardless of race/ethnicity or family income, have consistent access to affordable health care that is evidence-based, well-coordinated, family-centered, and provided in the context of a medical home; access to care coordination services, in particular, is critical, as these children and their families need to navigate through an array of services and programs (2, 3)
  • Supporting pediatric centers of excellence in which well-trained teams of health care professionals collaborate to improve care, and providing adequate reimbursement for specialized services (4, 5, 6)
  • Improving quality of life services for pediatric cancer patients and their families as they face complex challenges, such as physically taxing treatments, time-consuming and costly travel to health-related appointments, limited ability to participate in typical childhood activities, and increased family stress; psychosocial and other support services are an essential part of high quality pediatric cancer team-based care, especially for those facing terminal cancer (7)
  • Ensuring access to comprehensive palliative care and hospice services when a cure is not possible (7)
  • When cancer survivors reach adulthood, ensuring access to services to help with the transition from pediatric to adult care; these youth also may need assistance with employment or education, or the transition to self-sufficiency (4)
  • Working toward a unified, efficient and comprehensive payment system for cancer treatment; currently, families must navigate a complicated web of service systems with confusing payment policies, which can result in delayed or denied services for children and financial hardship for families (4)
  • Supporting continued pediatric cancer research that can promote advances in understanding cancer risk factors and treatments (5, 8)
  • Establishing federal policies to assure that drugs used to treat childhood cancer are available, consistently tested on the youth they are intended to treat, and not limited due to the smaller market these children represent (9)
For more policy ideas related to children with cancer, see kidsdata.org’s Research & Links section. Also see Policy Implications under Access to Services for Children with Special Needs and Health Care.

Sources for this narrative:

1.  American Society of Clinical Oncology. (2018). The Affordable Care Act and cancer. Retrieved from: https://www.cancer.net/navigating-cancer-care/financial-considerations/affordable-care-act-and-cancer

2.  Moy, B., et al. (2011). Opportunities in the Patient Protection and Affordable Care Act to reduce cancer care disparities. Journal of Clinical Oncology 29(28), 3816-3824. Retrieved from: http://ascopubs.org/doi/10.1200/JCO.2011.35.8903

3.  U.S. Department of Health and Human Services, Maternal and Child Health Bureau. (2013). CSHCN core system outcomes: Goals for a system of care. In The National Survey of Children with Special Health Care Needs chartbook 2009-2010. Retrieved from: https://mchb.hrsa.gov/cshcn0910/core/co.html

4.  Smith, K., et al. (2009). California's service system for children and youth with special health care needs: Analysis and recommendations for a service system that works for children and families. Lucile Packard Foundation for Children's Health. Retrieved from: https://www.lpfch.org/publication/californias-service-system-children-and-youth-special-health-care-needs

5.  Hay, W. W., et al. (2010). Child health research funding and policy: Imperatives and investments for a healthier world. Pediatrics 125(6), 1259-1265. Retrieved from: http://pediatrics.aappublications.org/content/125/6/1259

6.  American Academy of Pediatrics Section on Hematology/Oncology. (2014). Standards for pediatric cancer centers. Pediatrics, 134(2), 410-414. Retrieved from: http://pediatrics.aappublications.org/content/134/2/410

7.  American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care. (2000). Palliative care for children. Pediatrics, 106(2), 351-357. Retrieved from: http://pediatrics.aappublications.org/content/106/2/351

8.  Smith, M. A., et al. (2010). Outcomes for children and adolescents with cancer: Challenges for the twenty-first century. Journal of Clinical Oncology, 28(15), 2625-2634. Retrieved from: http://ascopubs.org/doi/10.1200/JCO.2009.27.0421

9.  U.S. Food and Drug Administration. (2016). Drug research and children. Retrieved from: https://www.fda.gov/Drugs/ResourcesForYou/Consumers/ucm143565.htm
How Children Are Faring
Between 2011 and 2015, 9,186 California children and adolescents ages 0-19 were diagnosed with cancer. The rate of new cancer diagnoses statewide increased from 16.5 per 100,000 children in 2000-2004 to 17.9 per 100,000 in 2011-2015, echoing a similar rise in diagnoses at the national level. Adolescents ages 15-19 generally have higher rates of cancer diagnoses than children ages 0-14. White children also tend to have the highest rate of cancer diagnoses among racial/ethnic groups with data.

Over the last decade, leukemia consistently has been the most common type of cancer among children in California, with the majority of diagnoses occurring before age 15. The five-year survival rate for leukemia—82% for 2005-2015—is similar to the general survival rate for childhood cancers. Racial/ethnic inequities persist in childhood cancer survival rates, with white children having higher probabilities of surviving for at least five years after diagnosis than children in other groups.