Emily Anne Barr: A Pediatric Nurse Practitioner and Nurse Midwife Advancing Perinatal HIV and Breastfeeding Research

By TERRA OSTERLING

“Throughout my career as a pediatric nurse practitioner and nurse-midwife, I have seen how important trust, support, and clear communication are for women and families living with HIV. This is especially true when parents are navigating infant feeding and breastfeeding decisions,” said Barr, who is an associate professor at the University at Buffalo School of Nursing and Director of Translational Innovations in Maternal Child and Family Healthcare.

UPLIFT is funded by the Center for Disease Control and the International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) Network, a global research group focused on improving health outcomes of infants, children, adolescents and pregnant women affected by HIV. The observational study is enrolling approximately 450 pregnant and postpartum women with HIV across the United States, including qualitative interviews with nearly 150 participants. The study will also examine antiretroviral levels in breast milk to help inform future infant feeding guidance.

Barr has been involved with IMPAACT and its predecessor networks since the early years of research focused on preventing perinatal HIV transmission.

Barr’s role in the UPLIFT study reflects her ongoing, broader commitment to translating emerging science into equitable, person-centered practice grounded in community voice and clinical realities. Especially across the maternal-child lifespan. As a PhD prepared pediatric nurse practitioner who is also a certified nurse-midwife, Barr brings a unique clinical perspective to the study.

The UPLIFT study represents another breakthrough in what Barr points out was already a stunning treatment progression for HIV; in the mid-1980s an HIV diagnosis was typically both terminal and rapidly fatal. By the late 1990s people were able to live with HIV as a chronic condition.

"HIV is a disease we’ve come so far in understanding and treating in such a short time,” Barr said. The early years, though, were universally devastating.

It was 1990 when HIV mortality rates were high and AZT – zidovudine, also known as azidothymidine, the first approved drug used to manage HIV/AIDS – was still an early and limited treatment option.

After college, Barr spent a year in Sonoma County, California, volunteering at a Christmas tree farm where members of a lay Catholic community cared for children living with HIV and AIDS.

Late one night, while rocking a feverish 2-year-old Penny and softly singing “Rainbow Connection,” is when Barr says her heart was forever changed. The experience put her on the path to caring for women, children and adolescents living with HIV.

Before entering nursing, Barr initially imagined a career in obstetrics. After leaving the farm, she moved to San Francisco to work as a research assistant at the Bay Area Perinatal AIDS Center, where researchers were conducting the landmark PACTG 076 trial that demonstrated AZT could dramatically reduce HIV transmission during pregnancy and birth. Many of the researchers and clinicians she worked with were nurse practitioners and midwives, which helped shape her decision to pursue nursing.

Initially, Barr worked as a patient educator for the study, supporting and building relationships with mothers and children. Exposure to advanced practice nursing, nursing research, and HIV care for women and infants helped solidify the direction of her career.

“I knew I wanted to work in the field of HIV care, and in San Francisco I found the role I wanted,” Barr said.

Barr has since spent her career embedded in innovative research and clinical care, “I was the first person to administer four antiretrovirals to treat to a newborn diagnosed with HIV on study and then went on to participate in many other key pediatric treatment trails around the world,” Barr said.

Yet even as a lactation consultant and as a breastfeeding mother herself, the risk of HIV transmission and HIV care guidelines prevented Barr and caregivers like her from supporting patients living with HIV to breastfeed their infants. That began to change in 2017, when Barr supported the first person with HIV to breastfeed her infant at the Children’s Hospital Colorado Immunodeficiency Program where she helped to develop and implement a model for the management of breastfeeding in women with HIV.

The interdisciplinary approach established a protocol intended to minimize the risk of HIV transmission during breastfeeding. It had been a long road for Barr, having over the prior two decades sat with young mothers agonizing over an HIV diagnosis, often desiring to breastfeed and wanting the best for their children.

“I will never forget that first patient in clinic who gently lifted her baby to her breast — after over 20 years working in this space it was finally happening and it brought tears to my eyes,” Barr said.

However, there remains very limited data on infant feeding decision-making, practices and outcomes among women living with HIV in the United States. UPLIFT, Barr said, will bring a dual lens to infant feeding in the context of HIV, centering maternal autonomy, infant well-being, and relational, trust-based decision-making in a rapidly evolving policy landscape.

The study will build on Barr’s expertise in exploring patient-provider trust to understand how pregnant and postpartum women are thinking about feeding their infants.

“This is a landmark trial on breastfeeding in the United States where about 3,500 babies are delivered annually to women with an HIV diagnosis,” Barr said. “It is an observational study at 12 geographically diverse sites. We want to know, while women are pregnant, ‘Are you interested in breastfeeding?’ Then we will follow the women to see who breastfeeds and for how long, and more importantly what that experience was like for both the women who choose to breastfeed or parents who choose not to,” Barr added.

Barr’s practice has consistently shaped person-centered translational research that prioritizes autonomy and trust. It is on that track that she has continued to follow mothers living with HIV and children with HIV into young adulthood, leveraging the emergence of telehealth to support patients in maintaining their treatment protocols as they age with complex health conditions. Each effort has the goal of improving care experiences, mental health and long-term outcomes.

“Since my first days in this field in San Francisco, I have been focused on how to innovate new knowledge that is quickly disseminated into clinical practice. UPLIFT is where we are hoping to collect the data that will help health care providers feel confident in supporting breastfeeding for women living with an HIV diagnosis,” Barr said.

The UPLIFT study is supported through a cooperative agreement with the Centers for Disease Control and Prevention (CDC) with financial support from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Overall support for the International Maternal Pediatric Adolescent AIDS Clinical Trials Network (IMPAACT) was provided by the National Institute of Allergy and Infectious Diseases (NIAID) with co-funding from NICHD and the National Institute of Mental Health (NIMH), all components of the National Institutes of Health (NIH).