Cost of Care and Prescription Meds Put Strain and Stress on AYA Survivors
Anne Kirchhoff, PhD, MPH, Salene Jones, PhD, Financial Toxicity in Adolescent and Young Adult Cancer Survivors: Proposed Directions for Future Research, JNCI: Journal of the National Cancer Institute, 2021;, djab014, https://doi.org/10.1093/jnci/djab014
Survivors of adolescent and young adult (AYA) cancers face greater financial hardship in adulthood than adults without a cancer history, according to a study published this month in The Journal of the National Cancer Institute. This adds to a growing body of research around the significant financial burden of a cancer diagnosis, an issue Children’s Cancer Cause has been focused on for many years.
This new study identified some of the specific financial burdens for AYA survivors, including problems and worries about paying medical bills. Researchers found that survivors of AYA cancers are more likely than adults without a cancer history to delay or forgo care and/or prescription medications due to cost.
“The financial health of AYA survivors may never recover after cancer diagnosis without appropriate clinical and policy intervention,” wrote the authors in a companion article proposing directions for future research. “Employment disruption and employment discrimination are key areas for AYAs. Another area for future research is how best to identify and address financial anxiety. Financial hardship remains a huge burden for AYAs, and clinicians and researchers should prioritize addressing these outcomes.”
At the Children’s Cancer Cause, we’ve been closely studying financial toxicity in childhood cancer survivors for many years and working to identify policy solutions. In a survey we conducted in partnership with the Patient Advocate Foundation in 2017-2018, we found:
One in four childhood cancer survivors reported that the cost of their cancer-related care impacted their ability to attend their college or university of choice.
The financial burden facing survivors can be long-term: 30 percent of the survivors we surveyed reported that the cost of their care impacted their career course or job choice.
Families are not receiving the information and support they need. When we asked families: At any point in your child’s care were you asked about any financial hardships your family may be experiencing related to food, energy, or housing?, over half (55%) answered no.
One parent of a child with cancer shared with us: “As a middle class family with insurance we do not qualify for any aid or assistance from anywhere. We owe over $100,000 in medical debt, plus regular debt and lost wages. We will likely file bankruptcy in the next 6 months.”
We surveyed families again last year to learn about the impact of Covid-19 and found that the pandemic dealt a devastating blow to many childhood cancer families already overburdened with medical bills and household expenses. Two-thirds of the families we heard from - and almost every survivor! - reported experiencing a reduction in income as a result of Covid-19, with nearly 30 percent reporting a loss of employment.
As we look ahead toward emerging on the other side of the pandemic, we continue to gather input around the ongoing needs and concerns of childhood cancer families and survivors that could potentially be addressed through legislative or policy proposals. Learning about your family’s experience is a vital part of this work: Take the survey.
For those experiencing financial challenges, we urge you to utilize the Hope Portal, where you can search by your location, diagnosis, and need to find nonprofit organizations that are helping to alleviate the financial burdens of families battling childhood cancer.
The Healthwell Foundation offers a Pediatric Assistance Fund with grants of up to $3,000 to assist with prescription drug or biologic therapies, devices or other treatment cost shares. To apply for a grant through the HealthWell Pediatric Assistance Fund, you must contact a HealthWell representative at 1-800-675-8416.