Abstract
Over 250,000 women in the United States are living with HIV, but limited research has addressed the physical
and mental health outcomes among younger women living with HIV (WLHIV). Because health status in the
reproductive years and surrounding pregnancy critically affects lifelong health, understanding health outcomes
among young WLHIV of reproductive age before, during, and after pregnancy is of substantial public health
importance in the US and worldwide. The maternal outcomes of WLHIV are inextricably linked to the long-term
health and survival of their children. The Pediatric HIV/AIDS Cohort Study (PHACS), conducted at 21 sites across
the US and Puerto Rico, has been following young WLHIV of reproductive age and their children since 2007,
with over 2000 birth mothers and >2800 HIV-exposed uninfected (HEU) children. Mothers with perinatally
acquired HIV (PHIV) are of specific interest, and the PHACS network includes >400 such women with PHIV
(WPHIV) along with their 251 HEU children. Utilizing the successful and longstanding PHACS research
infrastructure and existing cohorts, we will establish the Health Outcomes around Pregnancy and Exposure
to HIV/Antiretrovirals (HOPE) cohort, a cohort of 2000 pregnant, non-pregnant or nulliparous WLHIV of
reproductive age from geographically diverse, high HIV prevalence areas. Leveraging PHACS, cost-effective
and targeted enrollment and follow-up for longitudinal data collection will be achieved; we will also establish a
rich biorepository which links WLHIV to their children’s data and biospecimens. Thus, the HOPE research
platform will support high impact scientific studies central to the health of young WLHIV.
Our scientific aims for the HOPE cohort are: (1) to evaluate the effects of HIV-related disease and treatment
factors on reproductive health, non-communicable diseases, and oral health of WLHIV as well as psychosocial
determinants of these health outcomes (engagement in care, mental health diagnoses, racism, inequity and
stigma, disclosure of HIV, and substance use/misuse), and (2) To assess child health outcomes and their impact
on the health of WLHIV, including maternal HIV disease progression, antiretroviral therapy (ART) adherence,
engagement in care and maternal mental health. Overall, HOPE will create a platform to explore the multilevel
determinants and mechanisms that influence the short and longer-term health of WLHIV during their reproductive
years, as well as the health of their children, and will serve as a resource for future multidisciplinary studies in
areas such as genetics and epigenetics, microbiome/virome/proteomes and immune activation, to provide better
understanding of potential inflammatory and epigenetic processes associated with these outcomes.
