Self-reported Reasons and Patterns of Noninsurance Among Cancer Survivors Before and After Implementation of the Affordable Care Act, 2000-2017

This survey study analyzes NHIS data from nearly 18000 patients with a cancer diagnosis before and after implementation of the Affordable Care Act (ACA) to evaluate patterns and patient-reported reasons for not having health insurance before and after the ACA. Key PointsQuestionWhat are self-reported reasons for not having insurance among cancer survivors before and after implementation of the Affordable Care Act (ACA)? FindingsAmong 17806 nonelderly cancer survivors (2000-2017), 1842 (10.3%) self-reported not having health insurance (10.6% pre-ACA vs 6.2% post-ACA implementation in 2014), most commonly because of cost and unemployment, which both decreased after ACA implementation. Other reported reasons were employment related, family status change, aging out of a family plan, or refusal of coverage by an insurance company. MeaningAlthough cost remains the primary reason for not having insurance, more than half of cancer survivors self-reported other barriers to coverage. ImportanceCancer survivors experience difficulties in maintaining health care coverage, but the reasons and risk factors for lack of insurance are poorly defined. ObjectiveTo assess self-reported reasons for not having insurance and demographic and socioeconomic factors associated with uninsured status among cancer survivors, before and after implementation of the Affordable Care Act (ACA) in 2014. Design, Setting, and ParticipantsThis survey study analyzes National Health Interview Survey (NHIS) data from January 1, 2000, through December 31, 2017. Included were adult participants (age, 18-64 years) reporting a cancer diagnosis; however, those with a diagnosis of nonmelanoma skin cancer were excluded. ExposuresInsurance status. Main Outcomes and MeasuresMultivariable logistic regression was used to define the association between demographic and socioeconomic variables and odds of being uninsured. The prevalence of the most common self-reported reasons for not having insurance (cost, unemployment, employment-related reason, family-related reason) were estimated, with adjusted odds ratios (aORs) for each of the reasons defined by multivariable logistic regression. ResultsAmong 17806 survey participants, the mean (SD) age was 50.9 (10.8) years, and 6121 (34.4%) were men. A total of 1842 participants (10.3%) reported not having health insurance. Individuals surveyed in 2000 to 2013 had higher odds of not having insurance than those surveyed in 2014 to 2017 (10.6% vs 6.2%; aOR 1.75; 95% CI 1.49-2.08). Variables associated with higher odds of uninsured status included younger age (14.2% for age younger than mean vs 6.5% for age older than mean; aOR, 1.84; 95%, CI, 1.62-2.10), annual family income below the poverty threshold (21.4% vs 8.0%; aOR, 1.97; 95%, CI, 1.69-2.30), Hispanic ethnicity (18.8% vs 9.0%; aOR, 1.87; 95% CI, 1.51-2.33), noncitizen status (24.3% vs 9.2%; aOR, 2.38; 95% CI, 1.69-3.34), and current smoking (18.6% vs. 6.7%; aOR, 2.65; 95% CI, 2.32-3.02). Before the ACA, increasing interval from cancer diagnosis was associated with not having insurance (12.3% for >= 6 years vs 8.9% for 0-5 years; aOR, 1.47; 95% CI 1.26-1.70) as was black race (13.9% for black patients vs 10.4% for nonblack patients; AOR, 1.29; 95% CI, 1.04-1.61), but after the ACA, they no longer were (6.8% for >= 6 years vs 5.6% for 0-5 years; aOR, 1.12; 95% CI, 0.82-1.54; and 6.9% for black patients vs 6.2% for nonblack patients; aOR, 0.81; 95% CI, 0.46-1.43). The most commonly cited reason for not having insurance was cost, followed by unemployment, both of which decreased after ACA implementation (cost, 49.6% vs 37.6%, aOR [pre-ACA vs post-ACA], 0.62; 95% CI, 0.46-0.85; unemployment, 37.1% vs 28.5%; aOR 0.62; 95% CI, 0.45-0.87). Conclusions and RelevanceThe proportion of uninsured cancer survivors decreased after implementation of the ACA, but certain subgroups remained at greater risk of being uninsured. Cost was identified as the primary barrier to obtaining insurance, although more than half of cancer survivors reported other barriers to coverage.