Background
Recent trends in mortality among people aging with perinatally-acquired HIV (PPHIV, “lifetime survivors”) remain poorly characterized. We used National HIV Surveillance System (NHSS) data to analyze survival trends and all-cause mortality among PPHIV since the first cases were identified in the U.S. and describe characteristics of decedent PPHIV between 2020-2022.
Methods
PPHIV born between 1978 and 2022, as reported to CDC by December 2023, were identified and categorized into birth cohorts as follows: no ART (1978-1986; cases identified through AIDS case reporting); early-ART (1-2 drug regimens) (1987-1995; identified through AIDS and/or HIV case reporting); and highly active combination ART (cART) era (1996-2022; identified through universal name-based HIV case reporting), subdivided into four-year periods until the end of observation [1996-1999, 2000-2003, etc.]). We used Kaplan-Meier to estimate each birth cohort’s survival probability over the duration of the observation period (through 2022). For each treatment era, population-level demographic characteristics and all-cause mortality rates (MR; deaths per 1000 person-years) were also assessed.
Results
There were 19,146 PPHIV born and 6,765 PPHIV deaths (35%) between 1978-2022. Ten-, twenty- and thirty-year (where applicable) survival probabilities among pre-ART, early-ART, and early cART birth cohorts (1978-1986: n=2187; 1987-1995: n=10176; 1996-1999: n=2194) were: 60%, 41%, and 33%; 68%, 64%, and 36%; and 94% and 92%, respectively (Figure 1). In contrast, survival for all later birth cohorts remained >96% through 2022. Between 2020-2022, there were 323 deaths among 12,704 PPHIV. Among these, 311 (96%) occurred in PPHIV aged >18 years. Mortality was highest among PPHIV aged >25 years (MR 7.21), followed by those aged 19-24 years (MR 1.09) and 13-18 years (MR 0.13). The median age of death was 29 years, while the median age of PPHIV still alive at the end of 2022 was 28. Deaths occurred most commonly among males (55%), Black/African American persons (55%), and PPHIV born in the South (44%) and Northeast (38%).
Conclusions
There have been marked improvements in childhood and adolescent survival among PPHIV since the cART era. However, PPHIV born earlier still face a relatively high burden of mortality despite advances in treatment. As lifetime survivors age into adulthood, understanding their care needs, comorbidities, quality of life, and causes of death will be essential to improving their well-being and survival.
Table or Figure
