Surveillance Estimates Prevalence of Neural Tube Defects in Births to Women With HIV

neural tube defect
The prevalence of neural tube defects (NTDs) in births to mothers with HIV from 2013 to 2017 was estimated to be 7.0 per 10,000 live births.

The prevalence of neural tube defects (NTDs) in births to mothers with HIV from 2013 to 2017 was estimated to be 7.0 per 10,000 live births, according to an article published in the Centers for Disease Control and Prevention’s (CDC) Morbidity and Mortality Weekly Report.

The CDC contacted 20 jurisdictions in the United States with the highest numbers of women of reproductive age living with diagnosed HIV infection who also delivered infants with birth defects; data was retrieved from surveillance programs from 2013 to 2017. This period was chosen to evaluate birth defects that occurred within the 5 years after integrase inhibitor dolutegravir was approved for use by the FDA in 2013.

Data from 2 surveillance programs in 15 participating jurisdictions were linked for the first time to estimate the overall prevalence of NTDs and the prevalence of NTDs in infants born to women diagnosed with HIV during the study period. Prior to this, the related data have not been used by CDC to characterize birth defects in infants of women with HIV, because birth defects surveillance programs do not collect data on HIV status, and HIV surveillance programs do not routinely collect data on occurrence of birth defects.

No difference in NTD prevalence in HIV-exposed pregnancies was found; prevalence of NTDs in babies born to HIV-infected women was 7.0 per 10,000 live births, similar to that among the general population, which was approximately 8 per 10,000 live births. Such similar data linkages may be used to characterize possible associations between maternal disease or maternal use of medications, such as integrase strand transfer inhibitors (eg dolutegravir) and pregnancy outcomes. Among women with diagnosed HIV infection, the NTD prevalence estimates based on active and passive surveillance had overlapping confidence intervals, suggesting no difference on the basis of case ascertainment.

Limitations of this study included potentially incomplete birth defects surveillance data because methods varied by jurisdiction, and that nonlive birth outcomes were not available in all jurisdictions, as well as that 2017 data might have been incomplete. Linkage of persons’ data in 2 separate surveillance programs is never 100% complete. Approximately 1 in 9 women with HIV have not received a diagnosis and therefore are not monitored by HIV surveillance. Further, because of data limitations, it was not possible to adjust for confounders.

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“Current U.S. recommendations state that dolutegravir is a preferred antiretroviral drug throughout pregnancy (with provider-patient counseling) and an alternative antiretroviral drug in women who are trying to conceive,” the researchers noted. “Although no difference in NTD prevalence in HIV-exposed pregnancies was found, data on the use of integrase strand transfer inhibitors in pregnancy are needed to understand the safety and risks of these drugs during pregnancy.”


Reefhuis J, FitzHarris LF, Gray KM, et al. Neural tube defects in pregnancies among women with diagnosed HIV infection — 15 Jurisdictions, 2013-2017. MMWR Morb Mortal Wkly Rep. 2020;69(1):1-5