I am writing this blog as I emerge from the recent Association of Pediatric Oncology Social Workers (APOSW) conference, inspired by the passion of the members to provide the best care of families with a child with cancer. One topic presented at the conference bridged two missions that have captured my heart and most of my career—research toward better results for kids with cancer and supporting the families as they navigate through their child’s treatment.
In a recent study by Dr. Kira Bona, a pediatric oncologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Clinic, Dr. Bona calls attention to the impact that basic needs’ insecurity has on the outcome of a child’s treatment for Acute Lymphoblastic Leukemia (ALL), the most prevalent childhood cancer diagnosis. She emphasizes that the primary takeaway from her study is that poverty-related outcome disparities exist in pediatric ALL, despite highly standardized care. The cure rate for most childhood cancers has been relatively steady for years, up to nearly 90% for some cancers, but unfortunately this is not consistent for patients over all social-economic classes.
This means that social factors should be considered in clinical trials as a first step in understanding the opportunity to improve outcomes for lower socio-economic populations. These families deserve every chance to give their children the same successful outcomes that higher income families do, which means that we need to level the playing field and do as much as we can to help cover the basic financial needs for families, so they can focus on getting the best treatment possible for their children.
I don’t pretend to understand or define all that Dr. Bona’s research implies, but at Pinky Swear Foundation, we frequently see examples of threats to a child’s treatment in the stories families share with us. We hear from families that can’t afford to move out of conditions that are risky to a child with a compromised immune system. We know of families that can’t afford to provide enough healthy food so that their children’s bodies are as strong as possible to fight the cancer and tolerate the intense treatments. There are families whose primary caregiver is working such long hours or holding multiple jobs, it’s difficult to adhere to a child’s medication or treatment schedule.
We all know there are many negative health implications for people living at the poverty level. A family with a child who’s been diagnosed with cancer or any life-threatening or chronic illness doesn’t need one more obstacle in ensuring the best possible outcome for their child. If we can all work together, coming from every angle to provide financial and emotional support so families can focus on their child’s care, perhaps these children and families can benefit equally from the research and treatments available and attain the better outcomes they deserve.
Colleen Norton is Director of Programs at Pinky Swear Foundation, a nonprofit that provides financial and emotional support to families with a child in treatment for cancer across the country. The organization also raises awareness of the challenges and issues families face in this situation. For more information go to: www.pinkyswear.org.