Neural Tube Defects in Pregnancies Among Women With Diagnosed HIV Infection — 15 Jurisdictions, 2013–2017

Jennita Reefhuis, PhD; Lauren F. FitzHarris, MPH; Kristen Mahle Gray, MPH; Steven Nesheim, MD; Sarah C. Tinker, PhD; Jennifer Isenburg, MSPH; Benjamin T. Laffoon; Joseph Lowry, MPH; Karalee Poschman, MPH; Janet D. Cragan, MD; Fay K. Stephens, MPH; Jane E. Fornoff, DPhil; Cheryl A. Ward, MA; Tri Tran, MD; Ashley E. Hoover, MPH; Eirini Nestoridi, MD; Laura Kersanske, MPH; Monika Piccardi, MS; Morgan Boyer, MSPH; Mary M. Knapp, MSN; Abdel R. Ibrahim, PhD; Marilyn L. Browne, PhD; Bridget J. Anderson, PhD; Dipal Shah, MPH; Nina E. Forestieri, MPH; Jason Maxwell; Kimberlea W. Hauser, MBA; Godwin U. Obiri, DrPH; Rachel Blumenfeld, MPH; Dana Higgins, MPH; Carla P. Espinet, MPH; Bernardita López, MS; Katherine Zielke, MPH; Latoya P. Jackson, MPH; Charles Shumate, DrPH; Kacey Russell, MPH; Margaret A. Lampe, MPH


Morbidity and Mortality Weekly Report. 2020;69(1):1-5. 

In This Article


For the first time, linked data from HIV and birth defects surveillance programs were used to estimate the prevalence of birth defects among pregnancies among women with diagnosed HIV infection. The prevalence of NTDs among pregnancies among women with diagnosed HIV infection in these 15 jurisdictions (7.0 per 10,000 live births) does not appear to differ from all births in these jurisdictions and from the estimate for the U.S. population based on 24 states (approximately 8 per 10,000 live births).[5,6] However, an association between ART and NTDs could not be assessed because information about maternal ART use is not collected routinely.

Additional pregnancies were followed up in Botswana, and two studies[7,8] have reported that risks of NTDs are lower than suggested by the initial study[1] (threefold versus eightfold, respectively). WHO now recommends DTG as a preferred treatment option for all populations, including women of childbearing age and pregnant women based on an evaluation of both risks and benefits.

The HHS Panel on Treatment of Pregnant Women with HIV Infection and Prevention of Perinatal Transmission now recommends DTG as a preferred antiretroviral drug throughout pregnancy and as an alternative antiretroviral drug in women who are trying to conceive, and also strongly recommends that use of DTG be accompanied by appropriate counseling to allow joint decision-making between patients and providers. CDC is exploring data on ART and birth defects that can be compiled in the United States. The Antiretroviral Pregnancy Registry[9] has provided some data to assess this association, but the addition of a U.S. population-based estimate, not dependent on volunteer participation, would be an important addition to the literature. CDC is currently working with partners to use the linked data in this report to ascertain specific ART use before or during early pregnancy and specific NTD phenotypes as well as other birth defects.

The findings in this report are subject to at least five limitations. First, the birth defects surveillance data might have been incomplete because surveillance methods varied by jurisdiction, nonlive birth outcomes were not available in all jurisdictions, and 2017 data might have been incomplete because of delays in abstraction. Second, linkage of persons' data in two separate surveillance programs is never 100% complete because of differences in linking variables, such as names or birth dates, which could have resulted in underestimation of the total number of births and NTDs. Third, approximately one in nine women with HIV have not received a diagnosis and therefore are not monitored by HIV surveillance.†† Fourth, because of data limitations, it was not possible to adjust for confounders. Finally, CIs were used as a measure of variability, and nonoverlapping CIs were considered statistically different. This analytical approach is considered a conservative evaluation of significance differences and infrequently can lead to the conclusion that estimates are similar, even when point estimates do differ significantly.

Because data on pregnancy and ongoing antiretroviral medication use are not routinely collected in many state HIV surveillance programs, and HIV treatment options are evolving, continued efforts to collect information on pregnancies affected by maternal HIV infection are needed to understand the association between HIV treatment and birth defects and other pregnancy outcomes. Linkage of data from other surveillance programs might help to assess possible associations between maternal disease or maternal use of medications, and pregnancy outcomes.