Young and uninsured: Insurance patterns of recently diagnosed adolescent and young adult cancer survivors in the AYA HOPE study

Abstract

Introduction Young adults have historically been the least likely to have health insurance in the United States. Previous studies of childhood cancer survivors found lower rates of insurance and less access to medical care compared to siblings; however, no studies have examined continuity of insurance after cancer diagnosis in adolescents and young adults (AYAs). Methods Using the AYA Health Outcomes and Patient Experience study, a cohort of 465 15-39 year-olds from participating Surveillance, Epidemiology and End Results registries, we evaluated changes in and sponsors of health insurance coverage after diagnosis, coverage of doctor-recommended tests, and factors associated with lack of insurance post-diagnosis using chi-square tests and multivariable logistic regression. Results Over 25% (n=118) of AYA cancer survivors experienced some period without insurance up to 35 months post-diagnosis. Insurance rates were high in the initial year after diagnosis (6-14 months; 93.3%) but decreased substantially at follow-up (15-35 months; 85.2%). The most common sponsor of health insurance was employer/school-coverage (43.7%). Multivariable analysis indicated that older survivors (25-39 vs. 15-19; Odds Ratio (OR): 3.35, p<0.01) and those with less education (high school or less vs. college graduate; OR: 2.80, p<0.01) were more likely to experience a period without insurance after diagnosis. Furthermore, >20% of survivors indicated there were doctor-recommended tests/treatments not covered by insurance, but >80% received them regardless of coverage. Discussion Insurance rates decrease with time since diagnosis in AYA cancer survivors. Future studies should examine how new policies under the Affordable Care Act extend access and insurance coverage beyond initial treatment.

Impact of Treatment and Insurance on Socioeconomic Disparities in Survival after Adolescent and Young Adult Hodgkin Lymphoma: A Population-Based Study

“…In studies of AYA cancer survivors, health insurance rates have been found to decrease with time from diagnosis (22, 23), particularly for older AYAs and those with less education (23), and a lack of health insurance is a barrier to receiving any medical care (22, 24). Further, more than two-thirds of uninsured survivors have been found to have no personal provider or routine medical care and, even with health insurance, AYA cancer survivors are more likely to forgo medical care due to costs (24).…”

Social Media and the Adolescent and Young Adult (AYA) Patient with Cancer

“…Furthermore, AYA patients and survivors face additional financial burdens, and recent results from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) Study reported that 25% of survivors were without health insurance at some time in the first 35 months after their diagnosis. (14)…”

Sociodemographic disparities in survival for adolescents and young adults with cancer differ by health insurance status

“…While cancer survival among AYAs with many types of cancer is good, above 80%, AYAs have not experienced the same improvements in relative survival as children and older adults for cancers common among AYAs [2, 3]. In addition, AYAs, historically, have had the highest uninsurance rates compared with children and older adults [4–6]. Furthermore, disparities in cancer survival by race/ethnicity and neighborhood socioeconomic status (SES)—previously well-documented only among older adults—have recently been reported among AYAs [7–10].…”