Understanding the sources of financial strain can help families prepare. Four primary areas of economic stress cause the most problems and can often hit hardest at the start of a new year: direct and indirect costs, income loss, insurance deductible resets, and ongoing financial burdens throughout survivorship.

• Direct and Indirect Costs take a significant toll because treating childhood cancer is expensive. Scans, surgeries, targeted therapies, and specialized medications add up fast. Having excellent insurance doesn’t insulate a family from high medical expenses. Families quickly rack up massive bills from deductibles, co-pays, and co-insurance, long before full coverage begins.

On top of that, families face unavoidable secondary expenses, such as travel and lodging for treatment. They must also arrange and pay for care for siblings. Adding to the mounting debt, many parents choose to spend money on making special family memories, viewing those moments, rightfully so, as priceless.

• Income loss causes significant strain. Most families coping with childhood cancer require a parent to reduce work hours or leave their jobs to provide care. This results in lost income and possibly reduced benefits. The yearly financial shock within the healthcare system further compounds this reduction.

• Insurance Resets add further stress. Each January, insurance deductibles and out-of-pocket costs reset, requiring families to pay thousands before coverage resumes. Rising premiums, potential Medicaid cuts, and the upcoming expiration of the Affordable Care Act subsidies will heighten the strain at the start of 2026.

• Financial Strain Persists into Survivorship. Many survivors require ongoing treatment for long-term effects that increase expenses. And, persistent health complications from prior treatment can hinder their ability to work or live independently, forcing reliance on family while enduring high medical bills for years.

Families facing these challenges may wonder where to turn for relief. The first step to finding immediate practical support, information, and guidance is to visit two CAC2 resources: the Childhood Cancer Hub and the CAC2 Survivorship Toolkit. These centralized directories connect families with organizations that offer support filtered by their situation, diagnosis, and location, helping to relieve their financial stress.

The CCH houses both the Hope Portal and Better Together directories. The Hope Portal lists 500+ organizations that provide practical support and financial assistance for families with a child undergoing treatment for childhood cancer. Better Together directs childhood and adolescent survivors of any age and stage to 200+ resources they may need to offset expenses after treatment ends.

How the Childhood Cancer Hub Can Help Your Family: Within these two directories, families can find vetted organizations that offer financial support for medical bills, transportation, daily needs, unexpected treatment-related expenses, and late effects. They can also find other free support for professional counsel, practical items, and experiences to ease the costs of childhood cancer and spark joy. Families can access the Hope Portal and Better Together portals by visiting the CCH website and using the search feature to quickly find help based on their needs, diagnosis, and location. (Most families qualify for assistance, though each organization may have eligibility criteria like income limits or residency requirements. To determine eligibility, visit each resource’s website.)

• Assistance with Medical Expenses: To help families with their medical bills, the CCH points to foundations that offer co-payment assistance, grants for high-deductible plans, and help with prescription costs. This helps make healthcare costs more manageable, especially after annual insurance deductibles reset. A quick search returns organizations that offer support, such as the HealthWell Foundation and the Patient Advocate Foundation, each dedicated to reducing the out-of-pocket costs of cancer treatment.

• Travel Assistance: Families can find charities that offer free lodging and travel assistance, such as Joe’s House, Along Comes Hope, Air Care Alliance, and the National Children’s Cancer Society, to help reduce the costs of accessing treatment centers.

• Keeping Your Home Safe: Families can identify organizations such as The B+ Foundation Family Assistance Program, The Tyler Robinson Foundation, and This Star Won’t Go Out that assist with mortgage payments, rent, and utility bills. This support helps families keep their housing worry-free.

• Non-Medical Practical Assistance: The CCH links families to organizations that offer free practical support. Amanda Hope Rainbow Angels, Cancer Legal Resource Center, Hair Peace Charities, and Mary’s Magical Moments provide legal counsel, wigs, camps, special experiences, tutoring, and college scholarships.

• Psycho-Social Emotional Support: Resilience is supported through directories of family- and sibling-focused programs. Families will find access to peer support groups, professional counseling, and social services that provide emotional and practical support. This helps families feel less isolated and become more resilient in facing the challenges associated with childhood cancer. A quick search returns organizations like The Arms Wide Open Childhood Cancer Foundation, The Austin Hatcher Foundation, The Bright Spot Network, Camp Casco, Momcology, Richi Childhood Cancer Foundation, and Ryan’s Case for Smiles.  

The CAC2 Survivorship Toolkit provides more than 1,000 educational and informational resources for childhood cancer survivors, their families, caregivers, social workers, and medical practitioners. It guides users through the complexities of survivorship. It provides trustworthy information across six key areas: educational guidance and planning, insurance and financial health, physical health and late effects, psychosocial and emotional health, transitioning to adulthood, and wellness and healthy behaviors.

• Insurance and Financial Health: As survivors grow older, some experience continued dependency on their parents due to chronic health issues that challenge their ability to support themselves financially and live independently. The CAC2 Survivorship Toolkit’s Insurance and Financial Health section offers guidance on health insurance, managing bills, debt, long-term finances, and government assistance.

Planning for Long-Term Financial Health

CAC2 understands that overcoming financial toxicity means meeting the needs of children, adolescents, and young adults undergoing treatment for childhood cancer, while planning for their ongoing financial health throughout survivorship.

By using CAC2’s Childhood Cancer Hub and Survivorship Toolkit, families can take immediate steps and plan for the future to mitigate expenses and focus on their child’s well-being. We are grateful to AstraZeneca, Day One Biopharmaceuticals, The Neuroblastoma Children’s Cancer Society, and Servier for making these CAC2 resources available to the childhood cancer community.

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