When women living with HIV choose to breastfeed

Health and Wellness 10. nov 2024 4 min Ph.d., Master of Health Science Ellen Moseholm Written by Eliza Brown

Thanks to effective treatment, women living with HIV can safely give birth without transmitting HIV to their babies or partners if they adhere to their medication plans. But what about breastfeeding? Recommendations differ widely across the globe. Mothers are encouraged to breastfeed in some African countries, whereas formula feeding is recommended in many European countries. Recent studies show that mothers with undetectable viral loads have a very low risk of transmitting HIV through breast-milk. This has led to new guidelines that support breastfeeding with careful monitoring. Healthcare providers should communicate clearly with mothers about their options, helping them to make informed choices based on their individual situations.

Current antiretroviral therapy is so effective that women living with HIV do not risk transmitting HIV to sexual partners or to their babies through vaginal birth if they adhere to their therapy. But is breastfeeding safe for women living with HIV?

Recommendations vary dramatically around the world, says Ellen Moseholm, an infectious disease researcher at Hvidovre Hospital, Denmark. In many African countries, breastfeeding is actively encouraged for women with HIV, whereas European healthcare guidelines have recommended formula feeding only for decades.

However, a growing body of evidence suggests that the risk of transmission through breastfeeding is likely less than 1% for mothers with undetectable viral loads, prompting healthcare guidelines in high-income countries to shift their approach. Now, Moseholm explains, guidelines suggest explaining the potential risks and benefits to parents and supporting their decision through close monitoring if they choose to breastfeed.

Moseholm and colleagues surveyed and interviewed pregnant women and new mothers living with HIV in Denmark, Sweden and Finland to learn about their perceptions on breastfeeding. Their results, published in the International Breastfeeding Journal, shed light on the mothers’ concerns and underscore areas in which healthcare providers need to improve, Moseholm says.

“We have to move towards a more shared decision-making approach in which a woman is encouraged to make an informed choice on feeding her infant and her healthcare team supports her in that decision,” she says.

The evidence on breastfeeding with HIV

Moseholm says that healthcare providers cannot yet conclude that breastfeeding is fully safe for women with well-managed HIV. “We do not have the evidence to say that there is no risk of transmission through breastfeeding,” she explains, largely because randomised trials would be unethical since they risk infecting infants. “We have to rely on observational data,” she says.

Studies in Africa and India have found that fewer than 1% of women receiving antiretroviral therapy who breastfeed transmit HIV to their babies. And since these studies noted that the mothers often had difficulty receiving consistent treatment, breastfeeding could be even safer for women living with HIV in high-income countries with easier access to treatment.

“The studies we have from high-income countries are still very small but reassuring,” Moseholm says. “Data are emerging from various continental European countries and the United Kingdom with quite a large number of women choosing to breastfeed. So far, I am not aware of any infant who has acquired HIV through breastfeeding in these studies.”

As such, considering breastfeeding is reasonable for women living with well-managed HIV. But since the stakes are so high, healthcare providers are not comfortable recommending breastfeeding to women in places where formula is a safe alternative without conclusive evidence. “We need to be absolutely sure that we can say that ‘undetectable equals untransmittable’ applies to breastfeeding,” Moseholm says.

Questionnaires that Moseholm and her team provided to women living with HIV indicate that the shifting guidelines have left women uncertain about the state of the evidence.

“Most women responded that breastfeeding with a detectable viral load is not safe, but when women were asked whether it is safe to breastfeed with an undetectable viral load, more than half responded that it is safe or that they do not know.”

“Did my milk change?” Confusion and frustration over regional differences in recommendations

Through questionnaires and interviews, Moseholm and colleagues found that the diverging recommendations women in Europe receive compared with women in Africa can be a major source of confusion for women living with HIV.

“As one mother put it, ‘I have travelled from Africa to Denmark. How did my milk change during that flight? There, I was encouraged to breastfeed, and now you are telling me I should not breastfeed my infant,’” Moseholm says.

Why the disparity between regions? Moseholm says the risk–benefit analysis differs in African countries, where formula and clean water supply are not always reliable. “There, the benefits of breastfeeding outweigh the risks if the women choose not to breastfeed their infants,” she explains. In addition to consistent nutrition, breastfeeding provides a significant immune boost that can help to protect infants from other infectious diseases.

Patients educating healthcare providers

Moseholm and colleagues were heartened to find that women living with HIV discussed breastfeeding with multiple healthcare providers during pregnancy and after giving birth. However, the interviews clearly show that healthcare providers who work with women living with HIV need more up-to-date information on breastfeeding, Moseholm says.

Some women received conflicting information about whether breastfeeding was an option from different healthcare providers, whereas others only heard the now-outdated hardline no to breastfeeding with HIV.

“We who work in the area need to go out and educate healthcare providers in different relevant departments,” Moseholm adds. Currently, some of that labour is falling to women living with HIV, who find themselves explaining the current recommendations to their own doctors.

Attitudes toward monitoring

Supporting women living with HIV in their choice to breastfeed requires close monitoring in the form of monthly blood tests. If HIV is detactable in the mother’s blood, breastfeeding is stopped immediately.

Monitoring the baby’s blood would not help stop the transmission of HIV but could help to manage HIV if it is transmitted. “If blood samples identify HIV in the baby’s bloodstream, treatment could be initiated as soon as possible,” Moseholm says. “That would have benefits in the longer term.”

Most mothers expressed willingness to undergo monthly blood tests to monitor viral load while breastfeeding. However, they were less inclined to have their child undergo additional blood tests.

Social scripts and studies on milk

Several participants said that receiving guidance on what to say to people who ask why they are not breastfeeding would be helpful. “A lot of stigma is attached to HIV and breastfeeding, and because it is so public, women are often asked ‘Why aren’t you breastfeeding?’ by people who do not necessarily know that these women are living with HIV, and they have to come up with an answer to that question,” Moseholm says.

Providing new mothers with a social script to navigate such conversations will relieve pressure from the women regardless of their choice on breastfeeding, she adds.

The women also asked whether the antiretroviral medicine they take to suppress HIV is passed on to their baby through breast-milk and what the long-term effects could be.

“As a healthcare provider, it is important to listen to what the women are saying and then be honest if you do not know the answers,” Moseholm says.

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