Guest Post: Navigating the Financial Strain of Childhood Cancer
Cierra Morgan is a University of Southern California senior studying journalism and health and human sciences. She’s guest blogging for Children’s Cancer Cause in the fall of 2024 as part of a course internship.
“I plan to pursue journalism and a law career. But for now, I love what the average 21-year-old girl loves: shopping, traveling, and having a good time with my friends. I also had childhood cancer myself, which is why working with Children’s Cancer Cause is even more special to me.”
This week, I wanted to dive deeper into a topic we’ve been talking about in my first two posts (find them here): the financial burden of childhood cancer on children and families. What happens when childhood cancer families - and, later on, young adult survivors striking out on their own - aren’t in a strong enough financial position to navigate everything that comes with complex medical needs?
In the Children’s Cancer Cause 2024 Survey of Teen and Young Adult Survivors of Childhood Cancer, one in three young adult survivors said they have had to delay or forgo cancer survivorship care due to costs. Approximately 18 percent of those surveyed reported a median household income under $50,000.
"I just wish health insurance wasn't so expensive. My parents pay for it now, but it is very expensive," said a young adult survivor of leukemia who was diagnosed at eight years old.
One in five children who receive a new diagnosis of childhood cancer are already living in poverty, according to this 2018 NCCS report. Furthermore, one in four families lose more than 40 percent of their annual household income as a result of childhood cancer treatment-related work disruption, while one in three families face other work disruptions such as having to quit work or change jobs.
The overall financial strain underscores the urgent need for better support systems and more accessible insurance options for cancer patients and survivors. It’s clear that childhood cancer imposes a large burden on individuals and families who don’t have the financial support they need.
Childhood cancer can even cause financial hardships with long-term implications that extend to other family members, including siblings. In this 2024 study, Fred Hutch Cancer Center identified three general categories of financial hardship among siblings of childhood cancer survivors:
Material: difficulty affording basic necessities and paying for medical bills.
Psychological: excessive worry about finances, including food, rent, utilites.
Behavioral: delaying, forgoing, or rationing recommended medical care to save money.
The financial burdens can create a ripple effect on other parts of their lives because the costs are so extreme, and some of the complexities here are yet to be fully understood. For example, an author of the Fred Hutch article cited above theorized that the financial strain on a family during treatment could mean there are fewer educational attainment opportunities for siblings.
Policy organizations like Children’s Cancer Cause work with coalition partners toward broader solutions to expand affordable access to care, but we also know that many families need immediate relief. Some organizations offer financial assistance for patients and families to help with things like general finances, co-pay assistance, travel costs, and more. Children’s Cancer Cause is one of many organizations that offers scholarships to childhood cancer survivors pursuing post-secondary education: Learn more about those here!
In addition to the resources listed below, we encourage you to explore other options that may be available to you - specific to your location and circumstances - by searching resources available through the CAC2 Childhood Cancer Hub. Children’s Cancer Cause is a CAC2 member and has been involved in the development of these searchable databases.
Financial Support Resources:
Andrew McDonough B+ Foundation: This foundation provides financial assistance to families with children by covering the costs of prescription medications that are not covered by insurance. It can also help with travel costs for treatment, mortgage payments, or rent.
Family Reach: They can provide financial assistance to families with a child or parent with cancer and help by covering mortgages, rent, utilities, lodging, and other non-medical expenses.
Go 4 The Goal: This organization provides wish granting, assistance with household bills, travel for treatment, tuition assistance for education, and enrichment activities with a referral from a social worker or child life specialist.
National Children’s Cancer Society (NCCS): When a child is diagnosed with cancer, NCCS helps families cope financially, emotionally, and educationally. For children who have been inpatient for 30 days or longer, it provides transportation assistance and emergency assistance.
Expect Miracles Foundation’s SAMFund provides critical financial resources to young adult cancer survivors twice a year through grants in two categories: Financial Assistance Grants and Family Building Grants.
Cancer and Careers Financial Assistance Grants Program provides a one-time monetary grant for cancer patients and survivors experiencing financial challenges to use toward bills, technology, skill development or training.
If you take regular medications to help manage your health, NeedyMeds provides information on programs that can help you save money on your meds.
Alex’s Lemonade Stand: A foundation that funds transportation and lodging for families financially burdened by traveling away from their home hospital for care only available elsewhere.
Miracle Flights: Helps fly children who are struggling with serious cancers and or other debilitating conditions to specialized medical treatment centers in the U.S.
If you’ve relapsed or are experiencing a second cancer, Cancer+Careers offers an extensive list of resources available to patients currently undergoing cancer treatment, including co-pay assistance and travel grants to off-set expenses for traveling to and from treatment centers.
Healthwell Foundation offers disease-specific financial support grants. If you’re being treated for cardiomyopathy and are on Medicare, for example, they are currently accepting applications to help with the cost of copay/premium coverage. Another fund that is currently accepting applications is for cancer-related behavioral health issues.
If you’re looking for resources that aren’t specific to cancer patients and survivors - such as your local food pantry or other community assistance programs - findhelp.org lets you plug in your zip code and find resources that may be available in your local area. Search and connect to support. Financial assistance, food pantries, medical care, and other free or reduced-cost help starts here:
The financial strain of childhood cancer is a huge challenge for many families and survivors. From delaying treatments to worrying about how to pay for care, the effects can really pile up. But there is help out there. So many amazing organizations are ready to step in with financial and travel assistance, helping patients and families focus on what really matters — getting better. It’s important to remember that no one has to face this journey alone. If you or someone you know is struggling, don’t hesitate to reach out for support — there are resources available!
To further explore issues surrounding employment, disability rights, insurance access, and finances, visit the Stewart Initiative for Childhood Cancer Survivors’ course on navigating young adulthood: www.childhoodcancersurvivorship.org/navigating-adulthood