In memory of Anne Marie Regan, CPNP, senior research coordinator, Pediatric HIV Program, Boston City Hospital
Our first child with perinatal HIV presented in 1985 at age 4 weeks with failure to thrive, vomiting, diarrhea, and thrush. Over the next several years, the number of HIV-infected infants grew exponentially, and by 1991, we were caring for more than 50 infants and children at Boston City Hospital.
Likewise, across the country, thousands more were being identified and cared for in pediatric programs. The complex nature of this disease required a novel approach. Replicated in multiple urban centers, we created a multidisciplinary program to address their needs, integrated with an National Institutes of Health–funded research agenda. We fought against the stigma facing those with HIV as well as the presumption that being a patient in the pediatric infectious diseases program implied a diagnosis of HIV. We advocated for access to care against a backdrop of fear of HIV acquisition in the medical community and supported our families who deemed HIV as a death sentence for themselves and their child. We worked with our colleagues in the prenatal program to expand HIV testing for pregnant women and to overcome their initial response, “Why test when the diagnosis just makes everyone sad?” We suffered the stresses of revealing each new diagnosis of HIV to a mother post partum (and the implication that she, too, was infected) and from our failures represented by infant deaths at a pace previously unknown to our infectious diseases program. Our team – made up of clinicians, socials workers, nurses and nurse practitioners, pharmacists, developmental specialists, pulmonologists, neurologists, and investigators – all worked in concert to provide the necessary care, but more importantly to gain the trust of our patients and families.
Antiretrovirals were marginally effective for HIV-infected infants and children at this time. Subsequently, we embarked on a national effort to prevent vertical transmission. We participated first in the study of pharmacokinetics of zidovudine (AZT) in newborns. We enrolled patients in ACTG 076 to test the hypothesis that treatment with AZT during pregnancy and labor, and in the infant, would reduce the risk of vertical transmission. Fifty U.S. and nine French sites enrolled 473 women between April 1991 and December 20, 1993. The results were spectacular; 8 of 100 infants in the AZT treatment group, compared with 25 out of 100 infants in the control group, developed HIV. By 1995, HIV testing was offered to all women at Boston Medical Center (formerly Boston City Hospital), and the promise of prevention of vertical transmission was reaching fruition. Between 1996 and 2016, approximately 500 HIV-infected women delivered at Boston Medical Center with vertical transmission identified in only 6 (1.2%) infants; without ACTG 076, we would have expected 125! In 2013, the Centers for Disease Control and Prevention reported that 70% of pregnant HIV-infected women received the complete 076 regimen, and 93% of mothers or infants received some part of the regimen. In 1992, 900 HIV-infected infants were diagnosed in the United States, and as many as 2,000 newborns were estimated to have been born infected with HIV; in 2015, 86 vertical transmissions were identified. This was, and remains, a remarkable accomplishment.
The successful interruption of HIV vertical transmission was a landmark turning point. Thousands of infants have been spared the burden of HIV disease, initially in high-income countries and now globally. Progress and success were possible only because of the brave HIV-infected women who volunteered for experimental protocols and the unsung nurses, nurse practitioners, social workers, and research teams that won the trust of these women and encouraged them to participate. There still is much to do to make it possible for all HIV-infected pregnant women to receive effective antiretroviral therapy. But we also can reflect back on the day we could imagine the end of the pediatric HIV epidemic and say we were part of it.
Dr. Pelton is chief of pediatric infectious diseases and coordinator of the maternal-child HIV program at Boston Medical Center. Ms. Moloney is a certified pediatric nurse practitioner in the division of pediatric infectious diseases. Dr. Pelton said he had no relevant financial disclosures, and Ms. Moloney is a speaker (on vaccines) for Sanofi Pasteur. Email them at firstname.lastname@example.org .