Breastfeeding is the standard of care in low-resource settings where it has been consistently demonstrated to promote the overall survival and well-being of HIV-exposed infants, with an extremely low risk of HIV transmission when the breastfeeding parent has sustained viral suppression. In the United States, Canada, and other high-resource settings, however, public health guidelines oppose breastfeeding among women living with HIV, primarily out of concern for potential transmission. As a result, there is very limited research on breastfeeding and HIV in these areas and a lack of information and clinical standards for providers to support women living with HIV in their decision-making around infant feeding.
The elimination of any risk of HIV transmission is often the only factor considered in counseling women about infant-feeding decisions. This ignores challenges related to health disparities and family, cultural, and economic values, as well as the potential benefits and advantages of breastfeeding. Insistence on a “zero-transmission-risk” choice concerning breastfeeding is also at odds with the autonomy of parents living with HIV and their fundamental right to make informed choices about their children’s care without judgment or interference from providers or government.2,3
Increasingly, stakeholders across the HIV community are questioning whether infant-feeding guidelines in the United States and Canada reflect the optimization of risks and benefits for this population. This discourse has evolved out of a long-standing need to acknowledge and respect bodily autonomy (the right for a person to govern what happens to their body without external influence or coercion). Additionally, as Undetectable Equals Untransmittable (U=U) (the fact that a person with a suppressed viral load cannot sexually transmit HIV) has become widely accepted, questions have emerged around its application to other modes of transmission, including breastfeeding and injection drug use.
In October 2020, a multi-disciplinary, multi-sectoral group of 23 experts from the United States and Canada convened to identify and discuss the top priorities to ensure that parents living with HIV are able to make the best infant-feeding decisions for themselves and their babies.
Co-signers to the resulting Consensus Statement assert the need for parents living with HIV to have access to the information, support, and tools necessary to make informed infant-feeding decisions. All endeavors in this field will be strengthened by recognizing the autonomy of women and parents living with HIV and building upon a trust that they will make the best decisions for themselves and their families when equipped with comprehensive information and adequate resources and support. They will also be informed by the fact that this work exists in a context of structural racism, colonization, assimilation, anti-Blackness/anti-Indigenous, gender bias, and economic justice. Successful programming will include women and other birthing parents living with and affected by HIV at every level of development and implementation.
Co-signers further stress the need for programming to advance research, policy, and educational resources for women and other birthing parents living with HIV and those who care for them. All individual and organizational stakeholders working in HIV and intersectional communities including gender justice, women’s health, reproductive justice, and others, are invited to sign onto this Consensus Statement calling for stakeholders to:*
- Recognize, account for, and advocate to change the intersectional conditions that specifically impact women living with HIV, particularly as they relate to their infant-feeding decisions
- Understand and respect the fundamental right of women and other birthing parents to make informed, uncoerced choices about their sexual and reproductive health, contraception, pregnancy, and medical care, and about the care of their children.
- Develop provider education and tools to address the complex realities facing parents living with HIV in their infant-feeding decisions and their rights to make informed decisions about the best course of care and treatment for their children
- Create parent resources and support peer-to-peer systems to provide parents living with HIV with comprehensive education and support around infant feeding
- Engage in policy reform to ensure guidelines reflect the rights of women and other birthing parents to parent their children and best practices; center their intersectional lived experiences and agency; and address the criminalization of women living with HIV, including those who breastfeed
- Advance research to understand existing data on HIV and infant feeding and identify and address remaining knowledge gaps
*additional details around recommended actions can be found below
With widespread endorsement of this consensus statement, the co-signers expect to build significant momentum that will help advance efforts outlined above and improve the landscape for parents living with HIV. We invite you to endorse our statement as an organization and/or individual today!
- Allison L. Agwu, MD, ScM, Johns Hopkins
- Judith D. Auerbach, PhD, University of California San Francisco, The Well Project
- Brittany Cameron, International Community of Women Living with HIV North America
- Martha N. Cameron, MPH, International Community of Women Living with HIV North America
- Deborah Cohan, MD, MPH, UCSF, HIVE
- Jenna Conley, The Well Project
- Ciarra Covin, MS, The Well Project, Healing Is Voluntary, LLC
- Olivia G. Ford, The Well Project
- Claire Gasamagera, International Community of Women Living with HIV North America
- Marielle S. Gross, MD, MBE, University of Pittsburgh Department of Obstetrics, Gynecology and Reproductive Sciences and Center for Bioethics and Health Law and the Johns Hopkins Berman Institute of Bioethics
- Catherine Hanssens, BS, JD, Center for HIV Law and Policy (CHLP)
- Marsha Jones, BS, The Afiya Center
- Seble G. Kassaye, MD, MS, Associate Professor of Medicine, Georgetown University
- Mary Ann Knott-Grasso, MS, CPNP
- Judy Levison, MD, MPH, Baylor College of Medicine, Houston, TX
- Jay MacGillivray, Registered Midwife, Ontario, Canada
- Krista Martel, The Well Project
- Heather E.R. O’Connor, BFA, ICW-NA
- Lealah Pollock, MD, MS, Perinatal HIV Hotline, National Clinician Consultation Center, University of California San Francisco
- Shannon Weber, MSW, University of California, San Francisco
- Jessica Whitbread, MES, International Community of Women Living with HIV
Endorsed by (as of December 11, 2020):
Endorse the Consensus Statement
1Throughout this document, the term “breastfeeding” is used with the acknowledgement that there are other terms/practices, such as “chestfeeding,” for feeding an infant from one’s body.
2Parents have a fundamental right under the United States Constitution to raise their children without state interference. Troxel v. Granville, 530 U.S. 57, 65 (2000) (“The liberty interest of parents in the care, custody, and control of their children is perhaps the oldest of the fundamental liberty interests recognized by this Court.”).
3B. (R.) v. Children’s Aid Society of Metropolitan Toronto  1 SCR 315: https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/1220/index.do.