When Childhood Isn’t Equal: Health Inequities in Pediatric Cancer Care
Every child deserves a fighting chance. Yet for many families facing pediatric cancer, that chance is shaped not only by biology but also by social determinants such as race, income, geography, and access to care.
Pediatric cancers are considered rare, with approximately 16,000 cases diagnosed annually in the United States. Despite their rarity, they remain the leading cause of disease-related death among children (Siegel et al., 2023). While survival rates have improved significantly over the past few decades, these gains are not distributed equally. Health inequities continue to impact diagnosis, treatment, and outcomes for children from marginalized communities.
Unequal Access to Diagnosis and Treatment
Children living in rural areas or low-income households often experience delays in diagnosis due to limited access to pediatric specialists and advanced imaging technologies. These delays can result in more advanced disease at presentation and poorer prognoses. Once diagnosed, access to comprehensive cancer centers and clinical trials is often restricted to families with financial resources or proximity to urban medical hubs (Bhatia, 2011).
Families without reliable transportation, paid leave, or adequate insurance coverage face difficult decisions that can compromise care. These structural barriers contribute to disparities in treatment completion and long-term follow-up. A systematic review found that social determinants such as income, geography, and insurance status significantly affect access to timely and effective pediatric cancer care (Tran et al., 2022).
Racial and Ethnic Disparities in Outcomes
Black and Hispanic children with certain cancers, such as acute lymphoblastic leukemia (ALL), have lower survival rates compared to white children. These disparities are not solely due to biological differences. They reflect systemic issues such as unequal access to care, socioeconomic stressors, and underrepresentation in clinical research (Bhatia, 2011; Sharara et al., 2024).
Language barriers, implicit bias, and lack of culturally competent care further exacerbate these challenges. Families may feel unheard or misunderstood during critical phases of treatment, which can erode trust and affect adherence to medical recommendations (Sharara et al., 2024).
The Burden Beyond the Hospital
Cancer affects more than the body. It disrupts education, mental health, and family stability. For families facing pediatric cancer, especially those from underserved communities, these disruptions are compounded by financial strain. The costs of treatment, travel, lodging, and lost income can be overwhelming. This often leads to long-term economic hardship.
Research shows that families of children with cancer are at increased risk of financial toxicity. This includes medical debt, housing instability, and reduced income (Bona et al., 2014). These financial pressures can persist long after treatment ends and affect the entire household’s well-being.
Caregiver Experience is Different Too
Caregiving during pediatric cancer is not a uniform experience, and social determinants of health significantly shape how families cope and access support. According to a 2023 systematic review published in Pediatric Blood & Cancer, caregivers from minoritized racial and ethnic groups often report higher levels of stress, lower satisfaction with care, and more difficulty navigating the healthcare system compared to white caregivers. Non-English-speaking families face additional barriers in understanding treatment plans and participating in decision-making, which can lead to increased anxiety and reduced trust in providers. Financial strain is especially pronounced among low-income caregivers, who are more likely to experience employment disruption, housing instability, and food insecurity during their child’s treatment. Mental health challenges are widespread across all caregiver groups, but access to psychological support is often limited for those in underserved communities. These disparities highlight the urgent need for culturally responsive care models and policies that address the broader social and economic realities families face during pediatric cancer treatment (Evans et al., 2023).
What Can Be Done?
Expand access to pediatric oncology care in rural and underserved areas
Support mobile clinics and telehealth initiatives like those offered by St. Jude Global, which partners with institutions worldwide to improve access and outcomes.
Advocate for expanded Medicaid coverage and rural health infrastructure through organizations like the National Rural Health Association.
Increase diversity in clinical trials
Encourage participation through culturally sensitive outreach and community partnerships.
Learn more or get involved with Stand Up To Cancer and their Health Equity Initiative, which funds trials in underserved populations. Blood Cancer United also provides healthy equity research funding opportunities.
Support policies that provide paid family leave, transportation assistance, and housing support
Back legislation like the FAMILY Act and initiatives that reduce the financial burden of cancer care.
Join Blood Cancer United’s Advocacy network. Here you can easily help engage legislators on cancer patient’s needs.
Refer families to Ronald McDonald House Charities for housing near treatment centers and Family Reach for financial navigation and emergency grants.
Invest in culturally competent care teams
Promote training programs that address implicit bias and improve communication across cultures.
Partner with groups like The Council on Health Equity at the American Academy of Pediatrics to implement inclusive care models.
Educate and empower communities
Host awareness events, school-based education programs, and caregiver support groups.
Use resources from Blood Cancer United to distribute multilingual materials and connect families to support services.
Support research and advocacy
Donate to or volunteer with organizations like Alex’s Lemonade Stand Foundation and CureSearch for Children’s Cancer, which fund research and advocate for equitable care.
Contact us at Severin Health Foundation
Work with Severin Health Foundation to assess the possible inequities with your current system and create an actionable program to improve them! We’re here to help! (Email us at info@severinhealth.org)
Health equity in pediatric cancer is achievable—but only if we commit to systemic change, community partnership, and compassionate care. Every child deserves not just hope, but access.
References:
Bhatia, S. (2011). Disparities in cancer outcomes: Lessons learned from children with cancer. Pediatric Blood & Cancer, 56(6), 994–1002. https://doi.org/10.1002/pbc.23078
Bona, K., Dussel, V., Orellana, L., Kang, T., Geyer, R., Feudtner, C., & Wolfe, J. (2014). Economic impact of advanced pediatric cancer on families. Journal of Pain and Symptom Management, 47(3), 594–603. https://doi.org/10.1016/j.jpainsymman.2013.04.003
Evans, E. M., Lin, J., Sanchez-Alvarez, J., Winestone, L. E., & Agrawal, A. K. (2023). Disparities in household material hardship, financial toxicity, and income loss in pediatric cancer. Pediatric Blood & Cancer, 70(9), e30496. https://doi.org/10.1002/pbc.30496
Sharara, M., Tjioe, K. C., Miranda-Galvis, M., et al. (2024). Social determinants of health impact on cancer affecting children, adolescents, and young adults: Systematic review and meta-analysis. Frontiers in Adolescent Medicine, 2, Article 1441776. https://doi.org/10.3389/fradm.2024.1441776
Siegel, R. L., Miller, K. D., Sandeep-Wagle, N., & Jemal, A. (2023). Cancer statistics, 2023. CA: A Cancer Journal for Clinicians, 73(1), 17–48. https://doi.org/10.3322/caac.21763
Tran, Y. H., Coven, S. L., Park, S., & Mendonca, E. A. (2022). Social determinants of health and pediatric cancer survival: A systematic review. Pediatric Blood & Cancer, 69(4), e29546. https://doi.org/10.1002/pbc.29546
