The battle against childhood cancer has been a success by any measure. In 1975, according to the National Cancer Institute, just 50% of children diagnosed with cancer before the age of 20 could be expected to survive more than five years. In the last decade, that number has improved to 83%. For some types of cancers, the results have been even more dramatic. By 2020, the U.S. population is expected to include around 500,000 pediatric cancer survivors — an increase of almost 30% since 2011.
But unwanted side effects sometimes accompany even the most miraculous cures. For some, surviving cancer has led to financial hardships related to follow-up care and chronic health conditions, as well as psychological issues such as depression and anxiety.
St. Jude Children’s Research Hospital researchers have studied nearly 3,000 childhood cancer survivors enrolled in the St. Jude Lifetime Cohort study (St. Jude LIFE), a program that aims to improve survivors’ health status and quality of life now and in the future. The study found that 65% of participants reported different forms of financial challenges stemming from their childhood cancer history. Specifically, half worried about how to pay for ongoing care. A third had skipped or delayed needed medication and medical care because of their financial situations.
Not surprisingly, this financial stress accompanied an increased risk of depression and even suicidal thoughts in survivors, a terrible irony given what the survivors endured and overcame as children. The financial challenges significantly interfered with the quality of life of survivors.
St. Jude researchers have identified a number of risk factors that might predict these worse-case outcomes:
These severe late effects may disrupt education and training opportunities, undermining survivors’ earning potential and jeopardizing their financial security later in life. The stress caused by this insecurity only exacerbates the risk of poor physical health, depression and anxiety.
Unfortunately, national health policy fails to address financial challenges survivors face. For example, the current health care law does not mandate coverage of many screening tests recommended for survivors by the Children’s Oncology Group, an international organization involved in clinical trials and health policy.
In addition, this dearth of screening guidelines makes identifying at-risk survivors especially important. St. Jude is developing a screening tool to make it easier for health care providers to incorporate financial checkups into ongoing care for survivors and test strategies meant to ease the financial burden.
For now, health care providers should routinely ask patients who are childhood cancer survivors about how finances affect access to medical care and look for community resources to help ease the burden.