Racial and socioeconomic disparities in status exceptions for pediatric heart transplant candidates under the current U.S. Pediatric Heart Allocation Policy

Background: The 2016 revision of the US Pediatric Heart Allocation Policy developed stringent rules for priority status creating impetus for clinicians to seek status exceptions. We hypothesized there may be differential status exceptions based on race and socioeconomic status (SES) contributing to disparities in waitlist outcomes.

Methods: The Scientific Registry for Transplant Recipients was queried for children listed for heart transplant from 2012 to 2020. Waitlist status & mortality with regards to race and neighborhood SES were stratified by listing before (Era 1) or after (Era 2) the policy change.

Results: The use of both 1A and 1B exceptions (E) increased in Era 2. In Era 1, there was no association between patient race or neighborhood SES on use of 1A(E) or 1B(E) when controlling for age and diagnosis. In Era 2, neither race nor neighborhood SES were associated with 1A(E), but both were associated with 1B(E): non-Hispanic (NH) Black children and those from low- and middle-SES neighborhoods were significantly less likely to be listed 1B(E). In Era 1, there were no significant differences in waitlist mortality based on race at any waitlist status; in Era 2, NH Black children had higher waitlist mortality when initially listed 1B or 2.

Conclusions: Since the 2016 policy change, racial disparities in waitlist mortality have worsened among children initially listed with lower priority status. Unequal use of 1B exceptions, which lower waitlist mortality, may explain some of these disparities. Recently implemented standardized pediatric exception guidance has the potential to improve equity.