Changes Recommend Shared Decision-making Between Providers and Parents Living with HIV and Support for Parents who Choose to Breast/Chestfeed
January 31, 2023 - Brooklyn, NY. The Well Project, a non-profit organization working to change the course of the HIV pandemic through a unique and comprehensive focus on women, applauds the release of the updated Recommendations for the Use of Antiretroviral Drugs During Pregnancy and Interventions to Reduce Perinatal HIV Transmission in the United States, which are issued by the US Department of Health and Human Services (HHS). Also known as the Perinatal HIV Clinical Guidelines, they are intended to arm healthcare providers with the information they need to engage with women and other birthing parents living with HIV about decisions related to pregnancy and infant feeding. Specifically, the updates to the section, Infant Feeding for Individuals with HIV in the United States, assert the need for shared decision-making between providers and parents living with HIV and increased support from providers for parents' infant-feeding choices. Revisions to the guidelines were made by a panel of experts in perinatal HIV treatment, care, and prevention who were convened as a working group of the US National Institutes of Health's (NIH's) Office of AIDS Research Advisory Council.
"We are extremely encouraged that the guidelines panel has heard and incorporated the feedback of community advocates, including The Well Project, and believe the updates to the infant-feeding guidance have the potential to make a profound impact on women and other birthing parents living with HIV," said Krista Martel, executive director of The Well Project. "These updates emphasize the nuanced nature of infant-feeding decisions, the need to honor parents' bodily autonomy, and the important role providers play in supporting women and other parents living with HIV in their decision-making processes. We look forward to other agencies and organizations, including the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP), referring to the infant-feeding recommendations in the updated Perinatal HIV Clinical Guidelines in the near future."
Key updates in the infant feeding guidelines include the following assertions:
- Women and other parents living with HIV should receive evidence-based, patient-centered counseling to support shared decision-making about infant feeding
- Counseling about infant feeding should begin prior to conception or as early as possible in pregnancy and should communicate the fact that achieving and maintaining viral suppression through antiretroviral therapy (ART) during pregnancy and postpartum decreases the risk of breastfeeding transmission to less than 1 percent
- Providers should support parents' infant-feeding choices, including:
- Women and other birthing parents living with HIV who have a sustained undetectable viral load while on ART who choose to breastfeed
- Women and other birthing parents living with HIV who choose to formula feed (providers should ask about potential barriers to formula feeding and explore ways to address them)
- Child Protective Services (CPS) or similar agencies should not be engaged in response to the infant-feeding choices made by women and other birthing parents living with HIV
"To see that the voices of those of us living with HIV have been able to invoke change on this level is inspiring," said Ciarra "Ci Ci" Covin, program manager at The Well Project and a woman living with HIV who breastfed her most recent child. "It now feels as if we are one step closer to decriminalizing breast/chestfeeding among parents living with HIV since the guidelines specifically recommend against calling CPS. From my own personal experience, I know that this threat is one of the scariest, and by removing it, pregnant people living with HIV will have more confidence to exert agency over their bodies and how they care for their families."
For the first time, the guidelines do not specifically recommend that women and other birthing parents refrain from breastfeeding with HIV and they provide more clearly worded guidance on the rates of transmission if the birthing parent has an undetectable viral load and is taking ART (less than 1 percent). While the previous guidelines stated that women and birthing parents should receive patient-centered and evidence-based counseling (and ultimately be supported in their infant-feeding decisions), their statement that "breastfeeding is not recommended for individuals with HIV in the United States" frequently superseded all other recommendations among providers. The current infant-feeding guideline updates stress that "open communication that involves the parent in shared decision-making provides an opportunity for providers to understand their patients' values and infant feeding preferences, thus allowing individuals who choose to breastfeed, and their infants, to receive appropriate care and support."
The guideline updates contain more detailed information on the potential benefits of breastfeeding and more clearly defined guidance to counsel birthing parents around their infant-feeding options. They also provide detailed descriptions of care management to reduce the risk of HIV transmission if a parent decides to breastfeed – including comprehensive and coordinated care (during pregnancy and postpartum) among the maternity care provider, HIV provider, infant provider, lactation consultant, and social worker prior to delivery, all of whom may need education about new approaches to infant feeding among people with HIV in the US.
Further, the guideline updates describe equity considerations to address the effects of structural racism, poverty, and segregation that disproportionately impact Black women and other women of color. They also offer guidance for transgender and gender-diverse people who desire to breast/chestfeed.
"As a pediatrician and member of the HHS Panel on Antiretroviral Therapy and Medical Management of Children Living with HIV, I welcome the new version of infant-feeding guidelines for providers caring for people living with HIV by HHS," said Natella Rakhmanina, MD, director of HIV Services at Children's National Hospital, Washington, DC, and chair of the Committee of Pediatric and Adolescent HIV at the AAP. "Weighing risk factors of HIV transmission against maternal and child benefits of breast/chestfeeding is challenging due to the limited evidence and experience in the US. This well-needed update uses available global evidence to advocate for shared provider/patient decision making and patient-centered approach, which has the potential to reduce HIV associated stigma and improve quality of life among people living with HIV. The Well Project has been a strong advocacy voice on this issue and has been cited in the infant-feeding chapter in the guidelines update."
In late 2021, The Well Project launched BEEEBAH (Building Equity, Ethics, and Education on Breastfeeding and HIV), a comprehensive, multi-tiered project that aims to increase knowledge and expand access to information around breast/chestfeeding and HIV. Through educational resource creation, leadership development, and collaborative efforts, BEEEBAH strives to ensure that women and other birthing parents living with HIV can experience their fundamental right to make informed, supported, uncoerced infant-feeding decisions.
"The changes to this version of these guidelines are a very exciting milestone, but we have a lot more work to do," said Ms. Martel. "It is key that we both advance research on breast/chestfeeding and HIV, especially in high-resource settings like the US, and ensure that the guideline updates are broadly communicated to and understood by providers."
Find out more about The Well Project's efforts around breast/chestfeeding and HIV
Access the updated Infant Feeding for Individuals with HIV in the United States in the Perinatal HIV Clinical Guidelines (updated on January 31, 2023).
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 free from stigma. Founded in 2002, The Well Project has become a recognized leader in the fight against HIV by revolutionizing the availability and accessibility of much-needed resources designed specifically for women living with and vulnerable to HIV and by prioritizing the advancement of women in all aspects of HIV prevention, treatment, and cure research and policy. The Well Project provides tools for women to build a foundation to not only survive, but also thrive with HIV. Reaching nearly four million users annually through our web portal and social media channels, The Well Project leverages technology to improve health outcomes and quality of life for women living with HIV.
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