Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada

Infant feeding among women and other birthing parents living with HIV is an issue at which many structural factors converge, providing the community with a tremendous, powerful opportunity to create models that address them as it coalesces a field of study and practice. Briefly, those factors include:

• Structural racism, gender bias, and other traumas that promote and perpetuate the HIV epidemic among Black and Indigenous women and other women of color. Further, regardless of income, Black and Indigenous women are far more likely to die, or have their babies die, during birth or postpartum than other races. These conditions also result in Black and Indigenous women and infants experiencing a greater burden of many health conditions that research has shown may be attenuated by breastfeeding.
• Poverty and access to resources among some parents living with HIV in the United States and Canada. While these are considered high-resource countries, there are many communities that lack access to consistent clean water, reliable public transportation, formula, and healthcare services.
• Biased policing and application of policies that lead to low-income communities, particularly Black and Indigenous communities and other communities of color, being unjustly surveilled. This occurs not just on the streets but in healthcare settings and in relation to the care of their children (e.g., Child Protective Services). HIV status compounds this reality.
• Racism, colonization/assimilation, and xenophobia that may influence the "North/South divide" and the degree to which the scientific community in high-resource settings may value sound research findings from low-resource settings (including sub-Saharan Africa and India) conducted among Black and Indigenous women and women of color.

In preparation for the convening that informed this Consensus Statement, the participating experts took part in a survey (n=21) to identify important issues related to infant feeding among women living with HIV. The survey investigated the most important priorities for infant feeding among women living with HIV and the biggest challenges to achieving them. Highlights include:

Top priorities

• Additional research to understand HIV transmission through breast milk among women living with HIV who have sustained viral suppression – 76%
• Increased/improved provider education addressing existing research on breastfeeding among women living with HIV, risks and benefits for women living with HIV and their babies, ethical issues around guidance related to breastfeeding among women living with HIV, and harm reduction strategies – 57%
• Increased/improved education for women living with HIV addressing existing research on breastfeeding among women living with HIV, risks and benefits for women living with HIV and their babies, ethical issues, harm reduction strategies, and rights of women living with HIV if they choose to breastfeed – 48%

Top challenges

• Disregard for the bodily autonomy and decision-making ability of people living with HIV and parents – 48%
• Inadequate resources for providers to support the infant-feeding decisions of women living with HIV and lack of knowledge around harm reduction strategies – 43%
• Lack of understanding among providers of existing breastfeeding research, its implications, and limitations – 38%
• Criminalization, including HIV criminalization and criminalization of pregnant people, especially Black and Brown parents – 33%

Why is this topic important? (select responses from survey participants)

• "It represents one of the current frontiers of HIV stigma/moral panic, it is a salient example of how compounded biases affect healthcare practice with great potential harms for long-term health and equity, and is a key example of why we must eliminate the maternal-fetal conflict framing of perinatal care and ethics as it incorrectly assumes that healthcare providers take infants' best interests to heart more than their own mothers."
• "I am an HIV-positive woman and mother and I believe that women living with HIV should have access to ALL of the information around breastfeeding as well as self-determination and choice."
• "I have had many [women living with HIV] express interest in breastfeeding and one patient who chose to breastfeed. We also get calls on the Perinatal HIV Hotline about infant feeding. I believe in patient autonomy and informed choice and want providers to have tools to help guide those conversations."
• "It is a reproductive justice issue.... how women/lactating people living with HIV choose to feed their babies. And, having done some research in the field, there are still unanswered questions like optimal ARV regimens to prevent transmission during lactation. This is the next frontier in HIV medicine and prevention."

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** "Women" is used throughout this section, reflecting the language used in the survey

In order to carry out the goals listed in the Consensus Statement, participating experts have developed an initial list of short- and long-term actions and recommendations based on discussions and feedback from the initial convening. The authors look forward to engaging with a wider group of stakeholders to assess existing and potential work in this area and to advance the following efforts.

Actions to Improve Infant-Feeding Support for Parents Living with HIV

• Further develop and expand a diverse, multi-disciplinary, multi-sectoral coalition of stakeholders working at the intersection of HIV and infant feeding to monitor and advance these efforts
  • To include: people living with HIV; clinicians across disciplines (infectious disease, OB/GYN, pediatricians, etc.); midwives; doulas; social workers; legal experts; social scientists; child protective workers; community health workers; lactation consultants; case managers; networks of people living with HIV; policymakers; government officials; ethicists; advocates; and others
• Outline strategies to ensure infant-feeding programming for parents living with HIV explicitly includes trans men and other birthing parents who do not identify as women
• Create database of U.S. and Canadian partners (including providers, peer educators, community-based organizations, and internet-based resources) that reach parents living with HIV wherever they are and however they access their information; to be leveraged in information gathering and dissemination
• Gain insights into the infant-feeding information people living with HIV want and how they wish to access it; produce and disseminate identified resources through partners in database
• Develop an online support community for parents living with HIV to share infant-feeding experiences (anonymously, where necessary)
• Develop community-facing campaigns to improve public understanding and support for birthing and breastfeeding among parents living with HIV
• Conduct literature/research review to identify all relevant research on breastfeeding among women living with HIV
• Develop and promote research agenda that leverages existing findings, seeks novel applications of relevant data, and addresses knowledge gaps
• Consolidate current clinical practice standards and guidelines around best practices to minimize the risk of HIV transmission via prophylactic regimens for babies who are breastfeeding across geographies and provider associations
• Create a practice transformation model for supportive clinical settings and culturally responsive educational programming that center women's lived experiences, consider factors beyond potential HIV transmission, employ a harm reduction lens, and address racial bias among providers
• Create process to hold accountable providers and systems who misinform and/or punish women
• Work with organizations that publish HIV-related guidelines to ensure they are up to date, reflect best practices and complexities of infant feeding, and are consistent across disciplines; develop comprehensive postpartum guidelines for women living with HIV
• Identify key stakeholders and experts in intersecting advocacy fields; work to explicitly address and ultimately change the legal environment that allows women living with HIV to be criminalized if they choose to breastfeed

Actions to Address Underlying Structures that Impede Progress on Infant Feeding Among Parents Living with HIV

• Address the many ways that instruction to not breastfeed is not neutral and can cause medical as well as emotional and other kinds of harm
• Develop implicit bias training for providers to help them critique their biases when they assume that some clients (often those who are white or have a higher formal education level) can be "trusted" with information that impacts their health, while others cannot
• Identify where differences in research context (North/South divide) are relevant to the dissemination of findings and where the reticence to do so is rooted in racism and white supremacy
• Address the structural conditions that affect the level of support that parents receive during the postpartum period, recognizing that breastfeeding is challenging, and support lacking, even for those with a high degree of privilege and access
• Develop support structures and policy advocacy for parents living with HIV who choose not to breastfeed, including making formula or banked milk readily and easily available (and covered by private and public insurance)

For additional resources on this topic, please click here.

Prevention of HIV-1 transmission through breastfeeding: Efficacy and safety of maternal antiretroviral therapy versus infant nevirapine prophylaxis for duration of breastfeeding in HIV-1-infected women with high CD4 cell count (IMPAACT PROMISE): a randomized, open label, clinical trial. Journal of Acquired Immune Deficiency Syndrome; April 1, 2018.

Breastfeeding by Women Living With Human Immunodeficiency Virus in a Resource-Rich Setting: A Case Series of Maternal and Infant Management and Outcomes. Journal of the Pediatric Infectious Diseases Society; April 30, 2020.

Recommendations for Use of Antiretroviral Drugs in Transmission in the United States. Panel on Treatment of Pregnant Women with HIV Infection and Prevention of Perinatal Transmission; Accessed November 19, 2020.

No. 354-Canadian HIV Pregnancy Planning Guidelines. Journal of Obstetrics and Gynaecology Canada; June 2018.

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Canadian Indigenous Womens Perspectives of Maternal Health and Health Care Services: A Systematic Review. Diversity & Equality in Health and Care; September 2016. 

Breastfeeding with HIV: An Evidence-Based Case for New Policy. Journal of Law, Medicine & Ethics; March 2019.

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Stranded: How America's Failing Public Transportation Increases Inequality. Atlantic; May 16, 2015.

Infant Formula Consumption Is Positively Correlated with Wealth, Within and Between Countries: A Multi-Country Study. Journal of Nutrition; April 2020. 

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