Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood. Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families. Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship. His goal is simple: to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.
THE HEADLINE: Survivors of Childhood Cancer More Likely to Experience Financial Burden
THE RESEARCH: Researchers evaluated self-reported household income data available through the Childhood Cancer Survivor Study (CCSS). The overall goal of this important study was to evaluate the prevalence of survivor financial burden and to identify correlations between percentage of income spent on out-of-pocket medical costs and financial burden. Researchers obtained data by random sampling of childhood cancer survivors (580) and a sibling control group (173) between May 2011 and April 2012. A high percentage of out-of-pocket medical costs was defined as spending greater than 10% of annual income on medical expenses.
KEY FINDINGS: Survivors of childhood cancer were more likely to report high out-of-pocket medical costs when compared to sibling controls (10% vs. 2.9%). In survivors, high out-of-pocket medical costs were associated with increased hospitalizations in the past year and household income of less than $50,000. Importantly, survivors that reported high out-of-pocket medical expenses were more likely to have difficulty paying medical bills, more likely to defer medical care, skip suggested medical screening tests or follow-up, and were more likely to admit to thoughts of filing for bankruptcy.
WHAT THIS MEANS FOR CHILDHOOD CANCER SURVIVORS: Survivors of childhood cancer are faced by tremendous health problems as a consequence of the treatments received previously. Because of the increased risk of health problems, it is imperative that all survivors have access to consistent annual medical care in a comprehensive multidisciplinary survivorship clinic. Unfortunately, this study suggests survivors are more likely to have increased medical expenses and additionally are more likely to forgo critical follow-up care and recommended screenings. Moreover, survivors as a group are more likely to consider bankruptcy. Survivors are encouraged to seek care in survivorship programs that have the resources to aid in identifying good insurance coverage. Most importantly, all survivors should be socially engaged in health care reform efforts and speak out.
Medical Disclaimer: The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this web site is for general information purposes only. If you feel the research summarized applies to you or someone you know, talk to your doctor about your concerns.
Videos with Dr. Aune
Presentation on YouTube (Jan 2015): Eliminating Long-term Health Effects in Cancer Survivors – Gregory Aune, MD, PhD
Interview for the National Coalition for Cancer Survivorship (June 2015): Hodgkin’s Lymphoma Survivor Dr. Greg Aune Discusses Issues in Long-Term Survivorship Care
Interview with the Washington Post Live Summit (Dec 2016): How cancer lives on in young adults after treatment ends
Dr. Gregory J. Aune is the Stephanie Edlund Distinguished Professor of Pediatric Cancer Research and a St. Baldrick’s Foundation Scholar. His experience in pediatric cancer spans over 27 years and encompasses his own patient experiences, research in experimental therapeutics, clinical care of pediatric oncology patients, and childhood cancer advocacy. His interest in pediatric oncology began at age 16, when he was diagnosed with Hodgkin’s lymphoma. While fortunate to survive, the experiences he encountered as a patient initiated a path towards a research and clinical career aimed at developing less toxic chemotherapy regimens. His experience as a long-term survivor included open-heart surgery at age 35 to replace his aortic valve and bypass three blocked coronary arteries that were damaged by his teenage cancer therapies. This life-changing event initiated his research interest in cardiac disease. His training to become a successful physician scientist and pediatric oncologist has included time spent at some of the most well-respected oncology institutions in the United States including, M.D. Anderson Cancer Center, the National Cancer Institute, and Johns Hopkins Hospital.
Dr. Aune is a national leader in childhood cancer advocacy efforts. In San Antonio, he has been a leader in local fundraising and awareness efforts. Since 2010, he has spearheaded efforts by the St. Baldrick’s Foundation and For the Kids Dance Marathon at the University of Texas San Antonio that have raised over $830,000 for childhood cancer patients and research efforts. In September 2014, his appointment to the National Cancer Institute Council of Research Advocates (NCRA) was announced by NCI Director Dr. Harold Varmus at a White House briefing on childhood cancer.
In addition, Dr. Aune is a policy advisor for the National Coalition for Cancer Survivorship, serves on the Board of Directors of the American Childhood Cancer Organization, is a member of the St. Baldrick’s Foundation National Advocacy Committee, and serves on the scientific advisory board for the Canines-N-Kids foundation.
In May 2015, Dr. Aune addressed the 68th World Health Assembly in Geneva, Switzerland and called on the World Health Organization to make childhood cancer a top global health priority.