Alex's Lemonade Stand Foundation for Childhood Cancer

The social determinants of health (race, ethnicity, insurance, employment, income, education, and place of residence) can be barriers to cancer treatment, survival, and long-term follow-up care.

Families with limited financial resources face challenges affording gas and parking for treatment, taking unpaid leave, managing insurance gaps, using Medicaid across state lines, and securing food and housing during care. While public and private insurance typically cover childhood cancer treatment (and clinical trial costs are covered by the trial), co-pays for repeated clinic and care visits add up. These costs can be devastating to families, even those who begin the cancer journey in a financially secure position.

These costs can also influence treatment decisions and long-term care of survivors (see Section 1), especially because geographic access to pediatric oncology care isn’t equal and some types of treatment centers are concentrated along the east and west coasts of the United States (See Maps of COG, Proton, and CAR T-cell therapy centers).

Although not an exhaustive list, the section ahead pulls out some of the hidden costs of childhood cancer treatment and offers some suggestions on future directions in improving care.

Insurance and Healthcare Costs

It’s no surprise that insurance coverage can influence access to cancer care. Insurance coverage often requires providers and facilities be “in-network.” Children who are covered by Medicaid (nearly 37.3 million as of April 2025) can experience difficulties getting treatment across state lines. While the federal government offers guidance on Medicaid coverage for medically complex children,¹⁹¹ how that coverage works varies from state to state and largely depends on prior authorization, the availability of specialists, and whether the providers participate in Medicaid. This can add hurdles for families as well as oncology clinics, who are managing treatment plans and working towards cures.

As the cost of living rises nationwide, the number of people on Medicaid has also risen—there were 14% more Americans on public health insurance in 2025 versus 2024.¹⁹² Among the childhood cancer patient population, 1 in 3 children receive health insurance through Medicaid.¹⁹³

Private insurance can offer similar network treatment difficulties as well as put financial strain on families. Annual employer-sponsored premiums have risen 7% for American families from 2023 to 2024.¹⁹⁴ The average specialist co-pay in the United States is $43.71.¹⁹⁵ For children who have frequent clinic and other healthcare provider visits (physical therapy, occupational therapy, speech therapy, etc.), these costs can add up. During active treatment, outpatient appointments could be daily and even include multiple providers per day.

After cancer treatment, the required medical care continues on. One study estimated that childhood cancer survivors visit a medical practitioner an average of 11.4 times per year.¹⁹⁶ Drug costs are also a significant out-of-pocket expense for families, and coverage can vary greatly depending on insurance plans and providers.¹⁹⁷

Travel Costs

Medical costs are just one piece of the financial burden that impacts families dealing with childhood cancer. Traveling to a clinic—whether just a few miles or several hours or several states away—significantly adds to the financial strain for families. One study estimated that for rural families the cost of each clinic visit was $138 due to additional travel costs.²⁰⁰ Another study estimated that every additional travel minute added $9.14 of travel costs and each additional mile added $8.85.²⁰¹

Hidden Costs: Time Away from Regular Lives

Beyond the medical and travel costs, socioeconomic barriers generate additional hidden costs. Children with cancer in remote areas miss more days of school and remain at risk for repeating grades. Parents miss more days of work—and those without vacation or sick leave lose much needed income. Time away from siblings produces more than just a financial impact on families.^{202, 203}