Background
Advances in HIV care and treatment have substantially extended survival of people with HIV. There is limited knowledge of the current health of the approximately 12,500 persons living with perinatally acquired HIV, i.e., Lifetime Survivors (LS), in the United States.
Methods
We used data from the Medical Monitoring Project (MMP), a nationally representative sample of US adults with diagnosed HIV, to examine demographic and clinical characteristics of adult LS. MMP collects annual, cross-sectional data through medical record abstraction (MRA) and interviews. We analyzed data from the 2015-2022 MMP data cycles on persons who reported they were born with HIV or had an HIV diagnosis within 12 months of birth (N=292). We report weighted percentages for key sociodemographic, behavioral, clinical, and HIV care continuum characteristics to elucidate the experiences and needs of this population.
Results
Among LS, 62% were female and 39% were male; 68% were > 25 years, and 34% were >30 years at the time of interview. In all, 90% were born in the US or Puerto Rico; 58% identified as Black, non-Hispanic and 26% as Hispanic or Latino; 38% obtained a high school or equivalent education, and 48% had more than a high school education. About 58% were currently employed, 18% were unemployed and 16% were unable to work. A majority (62%) had only public health insurance coverage, 31% had any private coverage and 7% had only Ryan White/AIDS Drug Assistance Program coverage. Household income was <100% of the federal poverty level for 50% of LS, 19% experienced hunger/food insecurity and 21% experienced unstable housing or homelessness. Most were very satisfied (83%) or somewhat satisfied (11%) with their healthcare. Overall, in the past 12 months: 93% of LS received any HIV care, 43% had sustained viral suppression; 22% had a nadir CD4 count of less than 200 cells/mm³ and 40% took all antiretroviral (ARV) doses in the past 30 days (Table).
Conclusions
Although most LS received HIV care, fewer than half reported full ARV dose adherence, and a majority were not virally suppressed. Many were living in poverty. While a sizeable minority reported challenges meeting basic needs, most reported satisfaction with healthcare and being in good to excellent health. Assuring LS receive appropriate services to meet basic needs such as safe housing, food, and ARV adherence should be a public health priority. Additional research into the needs, health, and quality of life of LS is needed.