A multi-site study found no HIV transmissions among 72 people living with HIV who breastfed or chestfed their infants between 2014 and 2022 in the US and Canada. Healthcare providers serving these families shared concerns on how to best support them given the lack of detailed guidance and information on best practice.
A second single site study offers insights and lessons learned creating and implementing a standard protocol supporting parents between 2015 and 2022.
Both studies looked at implementation prior to the release of new infant feeding guidelines earlier this year. Clinicians in the US can find out more and get free expert clinical consultation from practicing providers 24/7 by calling the National Clinician Consultation Center Perinatal HIV/AIDS Hotline at 1-888-448-8765.
A note on language: not all people who have children are women, and not all people who feed their infants with their bodies call it ‘breastfeeding’. Some prefer ‘chestfeeding’ or ‘body feeding’. This article uses ‘breastfeeding’ to align with the source articles and for simplicity.
Clinical guidelines in the US and other high-income countries have historically discouraged breastfeeding for individuals living with HIV. The rationale was to eliminate the risk of HIV transmission by recommending formula or donor breastmilk, as these options are generally accessible and accepted in high-income settings.
In contrast, the World Health Organization (WHO) guidelines for low and middle-income countries support exclusive breastfeeding for infants born to people living with HIV, considering the greater risk of death when safe drinking water or formula is not readily available. Research, mostly from these settings, shows that antiretroviral therapy for both the parent and infant reduces the risk of HIV transmission through breastfeeding to less than one per cent.
Given its multiple benefits, more individuals living with HIV in high-income settings are opting to breastfeed, but the lack of support by official guidelines was causing harm to families, including threatened or actual reports to child protection services. The Well Project led US advocates in campaigning for change.
Following precedent set in other high-income countries, including the UK, Germany, Austria, and Switzerland, new US guidelines and Canadian guidelines were issued in 2023. Both now back shared decision-making and support for people who are virally suppressed and choose to breastfeed.
There is a lack of data on breastfeeding in North America. Dr Judy Levison from the Baylor College of Medicine in Houston aimed to change that by retrospectively collecting data on people living with HIV who breastfed their infants between 2014 and 2022 at 11 sites in the US and Canada. The study looked at who was choosing breastfeeding, why, and their experiences with it, relying on data readily available in medical charts, rather than direct communication with participants. It also looked at the institutional practices and policies around breastfeeding where the individuals received care.
A total of 72 mother-baby pairs were included in the study, including 44 from 8 sites in the US and 28 from three sites in Canada. Over half (62%) of the people who breastfed were born in African countries and 19% were born in North America. Seventy per cent were in a relationship or married. Seventy-two per cent had shared their HIV status with a partner, but only 24% to family and 10% to friends.
Nearly all (92%) had been diagnosed with HIV prior to the pregnancy and 86% were on HIV treatment before becoming pregnant. Sixty-five mothers had an undetectable viral load (below 40) at delivery, one person did not, and no data were available for six.
Participants’ primary reasons for breastfeeding included bonding (24%), health benefits for the child (22%), community expectations / fear of disclosure (18%), having breastfed prior children (8%), personal choice (4%), and religious reasons (1%). Motivation was unknown for 22% of participants.
Participants breastfed from 1 day to 72 weeks, with a median of 24 weeks. Most (75%) reported exclusively breastfeeding. Challenges with breastfeeding were commonly reported, including low milk supply (21%), pain (6%), difficultly with latching (6%), cracked nipples (4%), and mastitis (4%). Three per cent had breastfeeding stopped due to mother or baby being hospitalised.
Infant prophylaxis ranged from monotherapy similar to formula-fed infants (n=12) all the way to triple therapy until after breastfeeding was done (n=22). Similarly, monitoring of the parent and infant also varied widely. Most institutions said they tested viral load every one to two months; however, researchers lacked data to show how often viral load testing was actually done.
Some infants were tested at birth; most were tested at 2 weeks, 2 and 4 months, then every 1-2 months while being breastfed; some were tested at 1, 4, 6 months and after weaning. Nearly all (94%) had a documented negative HIV test by six weeks after completely stopping breastfeeding; four babies were lost to follow up.
Seven of the 11 sites (64%) had written breastfeeding policies in place for people with HIV. A range of specialties and disciplines were involved in developing these policies, including paediatric infectious disease (73%), obstetrics (73%), lactation (55%), legal / ethics (37%), paediatrics (36%), labour and delivery (27%), and adult infectious disease (27%). The researchers did not report on whether people living with HIV were involved in creating the guidelines.
Case study: Colorado
One such site with standard protocols is the Children’s Hospital Colorado’s Immunodeficiency Program (CHIP). Beginning in 2013, a growing number of individuals receiving care at CHIP have expressed interest in breastfeeding. As a coordinating centre, the programme works with pregnant people living who receive care in different clinics, hospital and health systems across Colorado. Part of their role is to train and support the healthcare providers and health systems that serve their patients.
The programme convened an interdisciplinary panel of experts to create standard guidelines, which were first implemented in 2015 and have been updated annually. The panel included infectious diseases and maternal-fetal medicine specialists, nurse practitioners, midwives, clinical pharmacists, lactation consultants and social workers.
The CHIP protocols lay out detailed guidance and timelines to support pregnant people with HIV through pregnancy, delivery, and breastfeeding. Infant feeding options are discussed several times throughout pregnancy, and everyone receives an HIV and Breastfeeding handout.
Those choosing to breastfeed sign a form acknowledging the risks and requirements it entails (link will download a Word document). Of note, the form itself strays from the supportive and reassuring tone used in the other educational materials. They also receive a Breastfeeding Guidance for Woman with HIV handout and extensive lactation support. Weaning is encouraged by six months, but the decision is left to the individual. A Weaning Your Baby handout and referrals to other nutritional supports are provided.
Those with risk factors that represent an increased possibility of HIV transmission with breastfeeding are advised not to and explained why. Importantly, the programme does not report infant feeding decisions to child protective services.
The programme reported challenges, including three individuals who had difficulty weaning or reported their baby would not accept a bottle. This was especially significant for a mother with detectable virus who attempted rapid weaning. The programme recommends introducing a bottle of expressed breastmilk during the baby’s first month, to help with subsequent weaning.
Two individuals had viral load blips. CHIPS guidelines call for a repeat viral load test if an individual has detectable virus between 20-199 copies/mL, and using previously stored milk, donor milk, or formula in the meantime. The programme recommends permanently stopping breastfeeding if a person has a viral load above 200 copies/mL. The protocols call for starting the infant on triple therapy in either case.
Other challenges included mastititis (the individual used a ‘pump and dump’ approach and fed from the unaffected breast) and low milk supply requiring supplementation.
More and more individuals with HIV are choosing to breastfeed their infants in the US, Canada, and other high-income settings. Several takeaways from recently published research and an educational webinar include:
- Breastfeeding brings numerous benefits and there are myriad individual, health, family, social, and cultural reasons why parents with HIV choose to breastfeed
- Several countries’ guidelines now support parental choice and shared decision-making, rather than a specific infant feeding modality, among those with well managed HIV
- Threatened or actual reports to child protective services are not an appropriate response to infant feeding discussions or decisions by people living with HIV
- A multidisciplinary approach is recommended for the development of policies and procedures to support breastfeeding among people living with HIV
- All pregnant people with HIV should receive advice about their infant feeding options, including breastfeeding
- A large site with several years’ experience supporting breastfeeding parents advises introducing bottles of expressed breastmilk early to facilitate future weaning and/or in case of complications, follow standard guidelines for storing expressed breastmilk
For clinicians supporting people living with HIV to breastfeed in the US, see the new US guidelines or get free expert clinical consultation from practicing providers 24/7 by calling the National Clinician Consultation Center Perinatal HIV/AIDS Hotline at 1-888-448-8765. A recent webinar, The HIV and Infant Feeding Guidelines at Six Months: Perspectives from National Leaders, may also be of interest.
Abougi L et al. Development and implementation of an interdisciplinary model for the management of breastfeeding in women with HIV in the United States: experience from the Children's Hospital Colorado Immunodeficiency Programme. Journal of Acquired Immune Deficiency Syndrome, April 27, 2023, online ahead of print.
Levison J et al. Breastfeeding among people with HIV in North America: a multisite study. Clinical Infectious Diseases, April 20, 2023, online ahead of print.