Brave enough to tell her story on a national stage in Washington, D.C., Sabrina (not her real name) reached for the mic with steely-eyed determination.
“The first few months of his life, my son cried inconsolably through the night — nothing I tried would comfort him. Meanwhile, my breasts were engorged, aching with fullness, and I would go in the shower, desperate to relieve some of my own pain, and hearing him crying from the other room, I would start crying too. Looking down, I would cry as I watched all that beautiful milk run down the drain … and I felt less than a mother.”
Her infant was crying in hunger and frustration, and she knew that “breast is best” for babies and mothers. So why wasn’t Sabrina breastfeeding? Because her doctor told her not to. Because she has HIV, and because it’s possible to transmit HIV through breast milk.
To help eliminate perinatal transmission, the U.S. Department of Health and Human Services strongly recommends women living with HIV avoid breastfeeding, regardless of maternal viral load or combined antiretroviral therapy (cART) status. I first learned this hardline dictum as a gyn/ob resident, noting the divergence from World Health Organization recommendations. More recently, concerns about surreptitious breastfeeding have led to slightly softened guidelines allowing clinicians to support women who “breastfeed despite extensive counseling.”
Meanwhile, modern-day cART has radically improved HIV prognosis, and substantial evidence demonstrates that maintaining an undetectable HIV viral load with cART eliminates risk of sexual transmission. The resulting movement, “Undetectable=Untransmittable,” is dismantling stigma and shifting paradigms in HIV care. For example, we may now recommend conception via ovulation-timed, unprotected intercourse for serodiscordant couples. Similarly, cART-induced viral suppression virtually eliminates perinatal transmission, leading more and more U.S. women living with HIV to pursue pregnancy and, increasingly, to ask about breastfeeding.
Sabrina was shaken by her diagnosis four years ago but promptly sought care and started medications. A month later, her viral load was undetectable, and it has been that way ever since, meaning virtually eliminated risk during breastfeeding.
In the U.S., perinatal HIV is a serious, chronic condition, but it is unlikely to be fatal. Infants who do not breastfeed have increased morbidity and mortality, most notably from sudden infant death syndrome (SIDS), necrotizing enterocolitis, obesity, asthma and diabetes. Truly, it is unknown whether breastfeeding in this setting would make an infant better or worse off. Of course, unbiased research on infant feeding when breastfeeding is not recommended is difficult, if not impossible, to perform. Significantly, breastfeeding decreases morbidity and mortality for U.S. women from reproductive cancers, cardiovascular disease, diabetes and short-interval births.
Given clinical equipoise regarding infants’ interests and increased risks to women and infants who do not breastfeed, we should embrace a shared decision-making approach to this issue. Critically, freedom of choice is undermined if you are scared, as many women are, that breastfeeding against doctors’ recommendations may jeopardize child custody.
Finally, we cannot ignore the troubling backdrop of racial iniquities: Black women are 20 times more likely to have HIV and suffer disproportionately from mortality risks breastfeeding may prevent. Black infants are two to three times more likely to suffer mortality related to SIDS and prematurity than their white counterparts. Could the current universal recommendation against breastfeeding for U.S. women living with HIV exacerbate underlying disparities in maternal-child health?
The powerful imagery of Sabrina’s story remains etched in my mind since our presentation at the 2019 United States Conference on AIDS, providing vivid proof that we must have these conversations with women, not merely about them. Without women at the table, our best insight is incomplete.
Sabrina closed her speech with: “I got HIV from sex. I already lived my grief, mourned that loss of self, knowing I would never be the same. ... Now I mourn the loss of self for the mother I’ll never be.”
It left me wondering: Does blindly following a categorically restrictive policy toward breastfeeding for women living with HIV make me less than a doctor?Marielle S. Gross is a gyn/ob and Hecht-Levi Postdoctoral Fellow at the Johns Hopkins Berman Institute of Bioethics.