Disparities in Healthcare Affordability Among Childhood Cancer Survivors Persist Following the Affordable Care Act

Background and Purpose: Childhood cancer survivors (CCSs) face a number of long-term physical and psychosocial challenges into adulthood. Prior to implementation of the Affordable Care Act (ACA), cancer was deemed a "pre-existing condition" which often excluded CCSs from obtaining insurance or drastically increased the cost to do so. As a result, CCSs were more likely to report healthcare affordability issues which lead to many delaying or skipping needed healthcare. The ACA included a provision which prohibited discrimination based on pre-existing conditions which went into effect in January 2014. Following implementation, the rate of uninsured CCSs has decreased nearly 40%; however, it is unclear if healthcare affordability remains an issue among this group.

Methods: Data from the National Heath Information Survey (NHIS) was used to compare the self-reported affordability of healthcare between CCS and non-cancer adults. The analysis was limited to those 21-65 at time of survey as older adults are eligible for Medicare and would have been less impacted by the provision. CCSs were matched 1:3 to non-cancer controls based on demographics. A difference-in-differences analysis was used to compare the pre- (2011-2013) and post-ACA (2015-2017) changes on healthcare affordability between CCS and non-cancer adults, adjusting for demographics.

Results: There were 309 CCSs identified in the 2011-2013 cohort and 324 in the 2015-2017 cohort. The two cohorts were similar in demographic composition. The median age was 36 and 40, respectively, and both were predominantly white and female. These were matched to cohorts of 927 and 972 non-cancer controls, respectively.

In the 2011-2013 cohort, 24% of CCS reported being uninsured; 45% had private coverage, 15% Medicaid, 11% Medicare, and 5% had other insurance or were unreported. 45% of CCSs reported difficulty paying for healthcare and 28% and 25%, respectively, reported delaying and skipping needed care due to costs. Compared to non-cancer controls, CCSs were 39% more likely to be uninsured after controlling for other factors (p = 0.046). CCSs were also 191% more likely to report difficulty paying for healthcare, 131% more likely to report delaying and 194% more likely to report skipping needed healthcare due to costs (all p < 0.001).

In the 2015-2017 cohort, 13% of CCS reported being uninsured; 49% had private coverage, 23% Medicaid, 12% Medicare, and 3% had another insurance or insurance status was unknown. 36% of CCSs reported difficulty paying for healthcare and 21% and 14%, respectively, reported delaying and skipping needed care due to costs. CCSs were not more likely than the non-cancer controls to be uninsured after controlling for other factors (p = 0.313). However, CCSs were 130% more likely to report difficulty paying for healthcare (p < 0.001), 88% more likely to report delaying (p < 0.001) and 72% more likely to report skipping needed healthcare due to costs (p = 0.008).

The difference-in-difference analysis suggested skipping needed care was the only indicator of disparity measured that improved statistically post-ACA. In respect to non-cancer controls, the disparity in skipping needed care was reduced by 63% (p = 0.040).

Conclusions and Implications: Following implementation of the ACA, a smaller proportion of CCSs report being uninsured. Medicaid expansion, which also occurred as part of the ACA in many states, may have contributed more to the improving uninsured rates than elimination of the pre-existing condition clause. Despite the improvements, CCSs still face disparate challenges in paying for healthcare. CCSs are at greater risk for chronic health conditions, have higher out-of-pocket medical costs, and lower average incomes than their peers, all which likely contribute to the disparity.