Cost Burdens
All participants experienced unexpected costs during the AYAs cancer treatment. AYAs and caregivers frequently cited the costs of unmet HRSN,45 specifically food, housing, utilities, and transportation. For AYAs and caregivers who were already struggling with finances prior to the cancer diagnosis, they often relied on local resources and community organizations, partnering with social workers or other hospital support networks to provide gift cards or vouchers, or relying on GoFundMe donations. Participants who were financially stable prior to diagnosis expressed shock over the costs of parking at the hospital, commuting, eating on the road, and gas, causing enormous shifts in family budgeting practices. Most participants mentioned housing as a financial challenge; for example, “you know, like whatever they paid in FMLA [Family Medical Leave of Absence] , it’s not even enough to pay a mortgage for one month” (Caregiver 2b).
Costs that were related to cancer treatment and symptom management but were not covered by insurance often presented a burden. Both AYAs and caregivers reported that insurance often would not fully cover oral medications, especially for supportive care, or dietary needs during medical treatment. Similarly, psychosocial health costs (e.g., therapy, counseling, exercise) were frequently reported as difficult or impossible to cover, in contrast to other costs that were covered by insurance. Respondents expressed they were “getting these very expensive bills for mental health” (Caregiver, 3b) and could not pay them, or were upset they could not provide mental health support for the rest of the family. Affording supportive care required time, effort, and navigation through a multitude of people and organizations; some said it was easier to forego the hassle.
Changes in employment led to the unanticipated loss of income for many respondents. Caregivers mentioned the lengthy treatment and chronicity of cancer treatment that hindered their ability to regain their prior financial status and savings. These losses were particularly impactful on AYAs and caregivers working in the gig economy (e.g., food delivery, Lyft/Uber drivers). One AYA reported needing to go back to work even though their family were not supportive of them working because of their fragile health and the risk of exposure (e.g., COVID-19) and harm (e.g., biking on busy streets to deliver food).