Parents living with HIV need non-judgmental conversations around infant feeding

After treatment as prevention was shown to greatly reduce the risk of HIV transmission during pregnancy and birth, guidelines were updated to support vaginal (rather than cesarean) deliveries. Globally, not only are the majority of mothers and birthing parents living with HIV exclusively breast/chest-feeding, they are advised to do so. Still, in many parts of the global North, birthing parents are advised not to breast/chest-feed, regardless of their viral load.

The discordance exists in part because there isn’t a shared consensus about the risk of postpartum infection. Although the latest data shows up to 0.6% chance of HIV transmission through breast/chest milk when on treatment, the U.S. Centers for Disease Control and Prevention and the American Academy of Pediatrics advise all women and birthing parents with HIV to formula feed, regardless of treatment or viral load. However, the updated World Health Organization (WHO) infant feeding guidelines strongly recommend breastfeeding for at least 12 months (preferably up to 24 months). These guidelines center countries with high HIV prevalence, where formula feeding places infants at higher risk of malnutrition and mortality due to unsafe drinking water. The WHO continues to promote that countries should choose regionally appropriate strategies.

‘We Need to Understand the Risks and Benefits’

Among the increasing calls for more informed choices around infant feeding options, HIV physician Nneka Nwokolo, M.B.B.S., FRCP, DipGUM, DFFP, advocates for a nuanced appreciation of regional differences. “We have these data from these studies that show that a woman [living with HIV] from Malawi who’s living in London is being told you can’t breastfeed, and her sister [living with HIV] in Malawi who has five children, all of whom she’s breastfed, none of whom is positive—who’s she going to listen to?” Nwokolo explained. “She’s going to listen to her sister. So, we need to be having this conversation.”

In order for the conversations to happen, Nwokolo added that providers may have to come to terms with their own apprehension around providing guidance. “In the field of HIV and sexual health, we’re used to talking to people about difficult things,” said Nwokolo. “I think we need to read and understand what the guidelines say. We need to understand the risks and benefits.” The benefits, for instance, include lower rates of breast and ovarian cancers for birthing parents. Moreover, people who were breastfed have lower risk of hypertension, type 2 diabetes mellitus, and obesity.

Nwokolo explains, too, that HIV transmission is not the only factor to consider—there are also the emotional impacts. “The pressure to breastfeed in women is great,” she said. “It’s great from society, and it’s great within many women themselves. Everywhere you look, it says you should breastfeed your child. And there’s no positioning that suggests that actually, it might not be possible for all women to.”

A UK study assessing the attitudes about breastfeeding among women with HIV found that more than a third, amid stigma and secrecy issues, said they would like to breastfeed. Evidence also shows the highest risk of postpartum depression among women who had planned to breastfeed and had not gone on to do so.

Infant-Feeding Considerations Beyond HIV Transmission

In August, 4M Network and International Community of Women Living with HIV North America (ICW-NA) hosted Mama Knows Breast, a debate on infant-feeding guidelines in the UK and U.S., wherein mothers living with HIV raised concerns beyond HIV transmission. Cost of baby formula and worries around baby bonding, additional surveillance, and formula being seen as an admission of one’s HIV status were all relevant considerations. They also highlighted the importance of peer support, health care provider support, and decriminalizing HIV transmission.

Conversations can be particularly fraught where there is a risk of state intervention. In the UK, up until 2012, the intent of HIV-positive birthing parents to breastfeed was considered a child protection issue, which could result in state and legal intervention. In parts of North America, this is still the case. In the 2020 book Breasts Across Motherhood: Lived Experiences and Critical Examinations, Jessica Whitbread—a queer activist and artist living with HIV—and Saara Greene, Ph.D., M.S.W.—an activist and a professor of social work—discuss infant-feeding options in their co-authored chapter. They note that fears of Canadian state intervention too often force “women underground and to breastfeed their babies without any medical or social support.” Weaponizing medical and state surveillance not only increases distrust; these policies go a long way to discourage doctor-patient conversations about infant feeding.

When human rights researcher and advocate Alison Symington, L.L.M., began working within women’s rights, she was “quickly exposed to the criminalization of HIV nondisclosure in Canada.” Symington stated that despite there only having been one criminal prosecution of a birthing parent in Canada, there has been a legacy of “overarching fear and anxiety” among birthing parents. Ten years after the prosecution, women and birthing parents living with HIV in Canada, she said, “still knew about it—particularly African and Caribbean women, because it was a woman from the African and Caribbean community.”

In general, Black communities face disproportionate effects of state intervention. For instance, in the U.S., 37% of all children have experienced a child protective services investigation—for Black children, that number increases to 53%.

For Symington, who currently works with the HIV Justice Network, a global coalition working to oppose the aggressive use of criminal laws with respect to HIV, it is clear that “if there was a small risk, health authorities are the people who know how to manage that risk, monitor the child, and assist the parents in making the best decisions for that child.” She added that “as soon as the criminal system gets involved, you’re never going to have the best outcome.”

For now, the HIV Justice Network advocates against prosecution and provides an HIV Justice Toolkit for cases that are taken to court. The coalition is developing infant-feeding position statements based on regional guidelines, policies, and laws as they pertain to HIV and breast/chest-feeding. “Breastfeeding recommendations are different in different places, and the issue seems to be coming up in very different ways,” explained Symington. “In the global North, we see women saying, ‘My body, my choice.’ But women in the African cases who were charged were very poor, domestic workers—a completely different kind of scenario.”

Where Providers Can Push for Change

Health care providers should be more proactive about raising infant-feeding options to birthing parents in their care. This way, providers “who feel that the guidelines should at least be amended to support women won’t be alone,” said Nwokolo. And too, providers should “find like-minded health care providers to support each other. Then try to find ways to have the guidance amended, or at least, to have the people that matter think about the consequences of not amending the guidelines.”

In the meantime, advocates are working to challenge and change infant-feeding guidelines. The Well Project published the Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada, which argues for access to the information, support, and tools necessary for birthing parents living with HIV to make informed infant-feeding decisions. In 2018, the British HIV Association updated its guidelines to state that although formula feeding continues to be advised, birthing parents with HIV who would like to breast/chest-feed should be supported to do so. This is providing they are virologically suppressed and are willing to have additional tests.

As Angelina Namiba, who is the founder of 4M Network and living with HIV, pointed out, although guidelines are changing, the changes are not always known by those living with HIV. “Providers are the gatekeeper of that information, and some of them keep it to themselves, literally,” said Namiba. “There’s also personal attitudes.” Health care providers who have good knowledge around undetectable equals untransmittable (U=U) and peer support are “putting the patients at the center of the decision-making,” explained Namiba; however, “If they don’t know about those things, the way they support their patient is going to be very different.” It is important that birthing parents can connect with other parents living with HIV to learn from their experiences and about provider advice.

Health care providers can learn from peer support, too, when approaching conversations about infant-feeding options, said Nwokolo.

Health care providers need to consider the additional support feeding parents might need, added Namiba. There is a need, she said, “to recognize that not everybody is going to get to U=U, not everybody has the ability to do that. We just [need] to give women information and support them in whatever choices they make. So even if a clinic is moving towards breastfeeding, be aware that not everybody’s gonna want to [breastfeed].”

As Nwokolo emphasized, “It’s not about breastfeeding or not breastfeeding. It’s about women’s choice and women being listened to.”

By Bakita Kasadha