Expert Consensus Statement Calls to Advance Efforts Around Infant Feeding Among Women and Other Birthing Parents Living with HIV in the United States and Canada
December 1, 2020 - Brooklyn, NY and Washington, DC. The Well Project and International Community of Women Living with HIV - North America (ICW-NA) today announce the launch of the Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada calling for parents living with HIV to have access to the information, support, and tools they need to make informed infant-feeding decisions.
The statement was authored by 21 multi-disciplinary, multi-sectoral experts. The Well Project and ICW-NA invite all individual and organizational stakeholders working in HIV and intersectional communities (including gender justice, women’s health, reproductive justice, and others) to sign onto the statement and consider how this information relates to their work. These two organizations, which focus on the health and well-being of women living with HIV, are releasing the statement today in conjunction with World AIDS Day to elevate an important gap impacting the HIV community.
The Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada calls 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 rights 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 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
"Infant feeding is a complicated and multi-layered decision-making process for all parents that can be even more complex for women living with HIV,” said Krista Martel, executive director of The Well Project. “As an organization committed to addressing the barriers women living with HIV face in accessing comprehensive and accurate information about their lives and health, we know this topic has been overlooked for far too long. This Consensus Statement is a map to help guide efforts to ultimately change the landscape.”
The authors of the Consensus Statement note the importance of considering a number of factors in order to advance the field. All endeavors 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.
“Women living with HIV in the United States and Canada are routinely told by their providers in no uncertain terms that they cannot breastfeed, which totally disregards their autonomy,” said Martha Cameron, executive director of ICW-NA. “We’ve seen far too many women living with HIV respond to this reality by breastfeeding without telling their providers. As a result, they don’t receive the support and resources they need to successfully breastfeed and minimize HIV transmission risk. This has to change.”
Background on Breastfeeding Among Parents Living with HIV
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.
While infant-feeding choices for women and other birthing parents living with HIV are impacted by many factors, the elimination of any HIV transmission risk is often the only one considered in counseling parents 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.1,2
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 top priorities to ensure that parents living with HIV are able to make the best infant-feeding decisions for themselves and their babies. This statement is an output of that meeting.
To those interested in in advancing these priorities, the Consensus Statement authors offer several Calls to Action:
- Sign onto the Consensus Statement as an organization or individual
- Join this effort! When signing onto the Consensus Statement, please let us know if you’d like to be added to listserv/database to stay engaged and informed with this topic and/or contacted for potential future activities.
- Discuss these recommendations with colleagues and community members
About The Well Project
The Well Project is a non-profit organization whose mission is to change the course of the HIV/AIDS pandemic though a unique and comprehensive focus on women and girls. The Well Project envisions a world in which women living with or vulnerable to HIV have the information, support, and tools they need to advocate for their health and well-being and live a life free from stigma. The Well Project leverages technology to dramatically improve health outcomes and quality of life for women living with HIV.
The International Community of Women Living with HIV – North America (ICW-NA) is a network of women living with HIV and is a member of the larger International Community of Women Living with HIV movement (ICW-Global). ICW-NA was founded when women living with HIV in Canada and the United States realized that they needed a platform from which they could speak about their own experiences, within the broader global context, an account for the context of North America that differs dramatically from the context of women living with HIV in some other settings. Today, ICW-NA exists to respond to the needs of all women living with HIV in Canada and the United States, including a disproportionate number of women who may be marginalized due to gender status, sex work, power imbalance in relationships, cycles of violence and abuse, substance use, poverty and lack of access to safe and appropriate services.
1 Parents 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.").
2 B. (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.