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).