Characteristics and Care Outcomes Among Persons Living With Perinatally Acquired HIV Infection in the United States, 2015

Kristen Mahle Gray, MPH; Xiao Wang, MPH; Jianmin Li, DPE; Steven R. Nesheim, MD


J Acquir Immune Defic Syndr. 2019;82(1):17-23. 

In This Article


Medical advancements have improved the survival of persons with PHIV. ART has been available for more than 20 years, with an increasing number of antiretroviral classes and improved regimen tolerability.[5,17] Many ARVs are also more potent in rapid reduction of VL and have a higher barrier to resistance.[5,18] Our study shows that persons with PHIV are surviving well into adulthood. Of the 11,747 persons living with PHIV at year-end 2015 in the United States and 6 dependent areas, 69.3% were aged 18 years or older.

Of the persons with PHIV diagnosed by year-end 2014 and living at year-end 2015 in 40 jurisdictions, less than two-thirds were retained in care, and less than half of persons were virally suppressed. A similar analysis in New York City found that 80% of persons living with PHIV were retained in care, but only 61% were virally suppressed.[19] Although these percentages are much higher than those found at the national level, they highlight the large gap in the continuum of care between persons living with PHIV who are retained in HIV care and those for whom HIV care has resulted in viral suppression. In our study, persons aged ≤17 years were more likely to be retained in care or virally suppressed than persons aged 18–25 years. Differences in viral suppression were also observed by race/ethnicity, and blacks were the least likely racial/ethnic group to have a suppressed VL. This finding is consistent with previous reports,[4,19] suggesting that efforts should be strengthened for blacks with diagnosed HIV infection, regardless of transmission category. By region of residence, persons living in the South (46.2%) had the lowest percentage of viral suppression, followed by persons living in the Northeast (48.5%). By country of birth, US-born persons (47.3%) had the lowest percentage of viral suppression. The median age among the subset of non–US-born persons was only 14 years, with persons aged 6–12 years accounting for the largest percentage of non–US-born persons living with diagnosed PHIV (34.3%) (data not shown). This may help explain the higher percentage of viral suppression among non–US-born PHIV persons, as younger persons diagnosed and living with PHIV were found to have better care engagement and viral suppression.

Compared with the 794,145 persons aged ≥13 years and with HIV infection diagnosed by year-end 2014 and alive at year-end 2015 in the 40 jurisdictions with complete laboratory reporting,[4] persons living with PHIV had higher percentages of receiving any HIV care (75.4% vs. 73.4%) and being retained in continuous HIV care (61.1% vs. 57.2%), but a lower percentage of viral suppression (49.0% vs. 59.8%). A variety of issues can impede ART adherence and achievement of sustained viral suppression among youth. Viral suppression is affected by adherence to ART, which tends to decrease as children with HIV age into adolescence and young adulthood, in part because of the increased responsibility for remembering to take medications.[6,20,21] Data from a retrospective cohort study of patients aged <18 years found complete adherence in only 24% of patients, and adolescents (aged ≥13 years) were significantly less likely to achieve viral suppression than children aged <13 years.[22] Youth living with PHIV can also develop antiretroviral drug resistance as a result of suboptimal regimens, frequent changes in regimens, and adherence difficulty,[7,13] affecting viral suppression. Furthermore, approximately half of persons living with PHIV at year-end 2015 were born before the availability of highly active combination ART in 1997,[18,23,24] and many were likely treated with 1-drug or 2-drug regimens, which are now considered suboptimal to present day regimens.[7,23–25] Older persons with PHIV may also refuse treatment[26] or experience "treatment fatigue."[25,26] In addition to the clinical challenges, psychosocial factors such as stigma, disclosure, mental health, substance abuse, lack of health insurance, lack of transportation, and housing instability can also make adherence to ART and achieving and sustaining viral suppression difficult for youth.[7,13–15,27]

Challenges with being in continuous care, adhering to regimens, and maintaining viral suppression, are also likely related to well-described difficulties some individuals have with transition from pediatric to adult care facilities.[5,27] Although the age of transition from adolescent to adult health care varies across providers, it generally occurs between the ages of 18 and 25 years with a complete transition by the age of 25 years.[5] Pediatric and adolescent care facilities typically help to address challenges specific to youth through an individualized care management plan and a comprehensive range of psychosocial support services.[7,14,27,28] When youth engage in adult-oriented health care services, they are often less likely to receive this network of psychosocial support and coordinated care.[14,28] Other specific challenges experienced by youth who have moved to adult care include establishing a relationship with a new provider, rigid scheduling, and the increased responsibility of self-care.[14,29]

The importance of a successful transition cannot be overstated, as a suboptimal transition has been associated with poor adherence and worse clinical outcomes,[14,30–32] including lower retention in care and viral suppression rates among persons with HIV infection.[18,33,34] Recent studies suggest that only half of those who transition to adult facilities will remain in care after the first year.[33,34] Additional efforts are needed to ensure that adult care providers are sufficiently trained in the comprehensive care of childhood onset illnesses,[28,35] which should emphasize the development of trust and a connectedness with patients.[36] Strategies to improve care outcomes should take the age of the patient into consideration, as different interventions will be necessary for adults living with diagnosed PHIV[37] compared with children living with diagnosed PHIV who are depending on adults (ie, biological parents, foster home parents, and providers) for care.[38,39]

A quarter to half of adolescents with PHIV are sexually experienced, and of these, approximately a quarter to a third have had unprotected sex.[6] Therefore, both adolescent and adult care providers should focus on counseling and related behavioral interventions to help reduce behaviors resulting in HIV transmission by persons living with PHIV.[40] Reproductive health counseling should specifically address family planning and disease prevention, as rates of pregnancy and sexually transmitted infections among perinatally infected adolescents are high.[6,7,41]

Our analysis is subject to several limitations. Information was not available in NHSS on antiretroviral prescriptions, the number of regimens taken by each patient, or treatment adherence. We were not able to assess the relationship between ART and viral suppression; instead, we measured viral suppression among persons living with diagnosed HIV infection. Data included in this analysis are from 40 jurisdictions, representing 82.7% of all persons aged ≥13 years and 81.2% of persons aged <13 years living with diagnosed PHIV at year-end 2015 in the United States and 6 dependent areas, and are therefore not representative of data on all persons living with diagnosed PHIV in the United States. We excluded persons born before 1978 from this analysis, as the first cases of PHIV in the United States are thought to have occurred in 1978 on the basis of modelling.[16] The excluded persons may represent individuals whose risk was reported incorrectly or misclassified in NHSS (ie, did not have perinatally acquired infection). Finally, underreporting of cases and incomplete reporting of laboratory results may have resulted in an underestimate of the population of PHIV individuals and their HIV continuum of care.

The national goals to be accomplished by 2020 include increasing the percentage of persons with diagnosed HIV infection who are retained in HIV care to at least 90% and increasing the percentage of youth with diagnosed HIV infection who are virally suppressed to at least 80%.[2,3] In our study, retention in HIV care (61.1%) and viral suppression (49.0%) fell well below the national goals. These findings highlight the need for continued expansion of prevention, care, and treatment efforts for achieving improvement in retention in care and viral suppression for persons living with PHIV, especially as this population ages into adulthood. Findings specific to age may be influenced by the challenges faced in adolescence and young adulthood, a period of great physical and psychological development. Future studies are needed to explore interventions with efficacy in closing the HIV continuum of care gap for this population. In addition, our work highlights the urgent need for collaboration between public health professionals and HIV care providers, both pediatric and adult, to optimize outcomes among the maturing population of persons living with PHIV in the United States.