Families often experience significant financial burden and emotional distress following childhood cancer treatments. In some cases, one parent may have left work to care for the child in the hospital. Travel expenses can grow quickly, especially when families live a distance from the treatment facility or if siblings need to be cared for by relatives or close friends who live in another state. Additionally, families may need to spend money on activities that create special memories with their child. Some expenses aren’t considered “logical” to the general community but are paramount for desperate families who want to create precious memories with their child, or treasured family moments, for fear that it is the only opportunity to enjoy time together. “Financial toxicity” is the impact of these cumulative expenses that tax fragile financial conditions for families. Unfortunately, the need for further medical intervention and support to help manage survivor issues can further exacerbate these challenges. As survivors grow older, some experience continued dependency on their parents due to chronic health issues that challenge the ability to support themselves financially and live independently. This section will provide information on managing medical bills, long-term planning, addressing debt, and accessing government programs for insurance and financial support.
Often, health insurance is described as one of the most effective ways to alleviate financial burdens related to medical expenses and overall financial health. To avoid the significant financial burden that can result from addressing chronic health issues, a childhood cancer survivor should always have quality health insurance. Many chronic conditions can arise from childhood cancer treatments and surgery, and regular screenings and testing are necessary to detect health issues earlier so conditions may be easier to treat. Further, additional insurance policies may be necessary due to standard exclusions on health insurance policies, such as coverage for hearing aids, prosthetics, or alternative medical therapies.
Several government support programs provide assistance to survivors and their families for insurance and financial needs, including food, housing, medical bills, and other basic living expenses. Medicare provides federal health insurance to individuals over 65, those experiencing kidney failure, and those receiving disability benefits. Medicaid is administered by each state, and provides health insurance to eligible low-income adults, children, pregnant women, elderly adults, and people with disabilities. Supplemental Security Income (SSI) is a federal program that provides monthly support to adults and children below specific financial limits who meet certain criteria, such as having a medical condition that prevents them from working, being blind, or being 65+ years old. Social Security Disability Insurance (SSDI) is a federal program that pays disability benefits to individuals and certain family members who have the required work history and who have a medical condition that either prevents them from working for at least 12 months or whose condition is expected to end in death. SNAP (Supplemental Nutrition Assistance Program), or EBT (electronic benefit transfer), is a federal program that provides monthly funds for people who qualify based on monthly income and family size to buy the food they need. Qualifying for SNAP immediately qualifies individuals for other programs and discounts on basic services.
Effective financial management helps alleviate the burden of cancer and improve the financial wellbeing of survivors and their families. Cancer treatments and survivorship care can be costly and ongoing. It is important to learn about inventorying your current financial situation, managing and paying medical bills, and building confidence in addressing financial matters. Due to the fragile health of some childhood cancer survivors, it is crucial to prioritize long-term planning when possible, such as arranging for life insurance for caregivers and spouses, and preparing siblings who may inherit the responsibility to care for their sibling survivor when parents can no longer do so.
