Childhood Cancer Families Shoulder Heavy Financial Burdens

"We are exceptionally good at making families impoverished during therapy." - Dr. Kira Bona

We recently held a webinar on the topic of treatment-related financial hardships facing families with a childhood cancer diagnosis. Today, we want to share the recording of that webinar with you (see end of this blog post) and highlight a few of the key things we learned from the illuminating hour with research experts Kira Bona (MD, MPH), Anne Kirchhoff (PhD, MPH), and Elyse Park (PhD).

A repeating theme of the webinar was the lack of research and information on financial hardship among families with a child in treatment and survivors' long-term medical cost burden, which is why we're taking on this issue of "financial toxicity" as a side effect of a cancer diagnosis.

As we explore viable policy solutions, we ask for your help: 

If you are a parent or caregiver of a child with cancer or a survivor yourself, we ask you to take ten minutes to participate in this survey we are conducting in partnership with the Patient Advocate Foundation: http://tinyurl.com/PAFCCCAPedsSurvey Your individual responses will be kept confidential. In return for your time, eligible survey recipients will be entered into a weekly drawing to win a $100 Amazon gift card -- just our way of saying 'thanks' for sharing your valuable insight and helping to make us better advocates for families like yours!

The facts: 

  • 1 in 5 children who receive a new diagnosis of childhood cancer are already living in poverty. 
  • 10-15% of US families studied were not poor at the time of diagnosis and became poor during treatment for their child's cancer.
  • 1 in 4 families report losing more than 40% of their annual household income as a result of treatment-related work disruption -- which doesn't even take into account out-of-pocket expenses like traveling to the hospital and extra childcare at home.
  • 1 in 3 families face other work disruptions like having to quit a job or change a job.
  • Financial hardship persists for families at least a year after therapy ends.

Dr. Bona helped us better understand the impact of these financial hardships -- which extend beyond the pocketbook and in fact can impact a child's survivorship outcome. For example, Dr. Bona presented a studied that found lower family income is associated with a higher risk of children missing doses of oral chemotherapy in leukemia treatment. 

"Children from high poverty areas were significantly more likely to experience early relapse -- which means having had a relapse of their leukemia less than 36 months from remission than children from low-poverty areas," said Dr. Bona. Children with early relapse of acute lymphoblastic leukemia are harder to treat with additional chemotherapy. 

Dr. Bona pointed to a lack of systematic collection of data about financial hardship in pediatric clinical trials. "We are gathering all sorts of biological data about their child's cancer and how that relates to outcomes but we have not to date been taking into account any of the social determinants of health, whether that's pre-existing poverty or how financial hardship during therapy might impact outcomes." 

Looking further down the road, Anna Kirchhoff and Elyse Park are researching the health insurance concerns and coverage of adult survivors of childhood cancer. 

Dr. Park and Dr. Kirchhoff found that childhood cancer survivors are more likely to be covered by Medicaid than their siblings, more likely to have a history of being denied health insurance because of their cancer treatment, and they spend a greater percent of their income on medical expenses. 

Dr. Kirchhoff walked us through the impact of survivors' high out-of-pocket medical expenses. Notably, she reported that over half of the adult survivors in their study skipped recommended medical care in the past year. Those who are uninsured are significantly more likely to skip care (such as filling prescriptions or getting a test done). 

These researchers emphasized that young adult survivors - especially uninsured survivors - lack needed familiarity with the Affordable Care Act and other available insurance protections. This point becomes especially important - the need for additional education and survivorship support/assistance - if changes to the current health care law take place. They hope to develop a phone-based survivor assistance program ("Health Insurance Navigation Program") as a next step, to help these survivors overcome barriers to receiving the insurance and care they need.

We thank all three of these terrific presenters for sharing their critically important research with us and for their dedication to this area of study. Please share your own insight by taking our survey

"These measures - poverty and financial hardship - cross all histologic sub-types and risk stratification. These are domains that are present for one in five of our families at time of diagnosis and more than that as they progress through therapy.

Which means if we're able to come up with interventions that in fact may help this, we have the opportunity to potentially make huge improvements both in quality of life and potentially in disease outcome for our children and families."

- Kira Bona

A note on the recording below: The first several minutes of this webinar did not get recorded. The recording picks up near the beginning of Dr. Kira Bona's presentation.