Childhood Cancer Survivor & Caregiver Challenges : Survey Results

 

In both 2017 and 2018, we conducted an online survey in partnership with the Patient Advocate Foundation. We heard from nearly 450 caregivers and survivors , and below we share a few key findings related to survivorship, financial hardship, and coverage challenges.


Survivorship:

In our 2018 survey, we asked survivors to think back on their cancer treatment: “Were you involved as much as you wanted to be in decisions about your care and treatment?” While the majority responded favorably, one-in-five survivors answered No, and I would have liked to be more involved. By comparison, just 7 percent of parents/caregivers answered no.

When asked “In the last 12 months, how often did your general practitioner seem informed and up-to-date about the care your received from cancer specialists?” less than 40% responded that their doctor was usually, always or almost always well-informed about the survivor’s cancer care. 34 percent responded sometimes, and 28 percent responded almost never.

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Alarmingly, six-in-ten survivors we surveyed either don’t have a written survivorship care plan or are unsure if they do. Follow-up care plans are a critical tool for transitioning care to adult providers and managing long-term side effects.


Financial Hardship:

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Among parent/caregiver respondents in both 2017 and 2018, 6-in-10 reported experiencing a financial hardship over the past 12 months due to the cost of their child's medical care. Of those who have experienced a recent hardship in both years’ surveys, approximately one-third categorized that hardship as extremely severe, unable to manage.

Too often, these hardships are going unaddressed. Over half - 55 percent - of families surveyed responded no when asked “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?”

Families report a very wide range of out-of-pocket expenses from the past 12 months related to their child’s healthcare costs (not including monthly health insurance premiums). Several families report owing more than $100,000 in outstanding debt directly related to their child’s cancer treatment.


Coverage Challenges:

Among caregivers surveyed in both 2017 and 2018, one-third reported insurance denials for treatment. The impact of those denials ranged from forcing caregivers to spend time navigating their insurance plan to requiring out-of-pocket expenses or loans and interrupting or changing the course of their child’s treatment:

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  • INTERRUPTING OR CHANGING THE COURSE OF A CHILD'S TREATMENT: “One drug was never approved under compassionate use despite my daughter's desperate and urgent need for it to save her life. She lost her life at the age of 7 within a month after this drug was denied.”

  • NAVIGATION TIME & STRESS: "Our treatment hospital is in network for treatment but out of network for diagnostics requiring lots of back and forth and pre-approvals. I have lost a fair amount of sleep in the process and worried about the potential for big bills."

  • HIGH OUT-OF-POCKET EXPENSES: “The insurance only covered 7 prescription pills for nausea in a month but my child needed 2 pills every day. It was a new medication with no generic option, and a large expense.”


At the Children’s Cause, we’re using this data to support a variety of policy proposals and projects in the works. We thank all the families and survivors who are helping to inform our advocacy work by sharing their experiences and challenges. Your input makes us a stronger voice for our children in Washington and around the country.