Resources to Talk to Your Provider about Breastfeeding and HIV

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Talking to your provider about infant-feeding options when you're living with HIV can be a nerve-wracking conversation. Below is a series of talking points and questions that you can use to start this discussion. Opening this conversation early in your pregnancy gives you more time to work through your options. Please note, this resource is primarily meant for those living in the US. To join the HIV and Infant Feeding listserv, please email Olivia Ford. 

How do I bring this up to my medical provider?

I would like to learn more about breast/chestfeeding and HIV.

I feel alone. Do you know of any personal stories from people who have breastfed their children while living with HIV?

Do you know of any providers in the United States who support a parent's decision to breast/chestfeed while living with HIV?

Are there any additional resources for me or my medical provider?

How do I bring this up to my medical provider?

Recognizing that this conversation often starts with your reproductive healthcare provider rather than an HIV specialist, your provider may not be aware of the most recent data and guidance around HIV and breast/chestfeeding. Below are talking points to help guide your conversation.

• I am interested in exploring my choices around infant feeding. If I choose to breast/chestfeed, will you support my decision?
  • (If YES) - Are the other providers/staff in your practice aligned with your support for my decision if I choose to breast/chestfeed?
    • Are you connected to a pediatrician who would support my decision? A lactation consultant?
    • (If no) – How would these kinds of differences in approach be managed in your practice so that I still get the supportive, encouraging care that I need?
  • (If NO) - Can you explain why?
  • Additional talking points with which to engage your provider:
    • Are you familiar with the Perinatal HIV Clinical Guidelines which have been updated to recommend that individuals living with HIV should receive patient-centered, evidence-based counseling on infant feeding options, including breast/chestfeeding?
    • Do you know that if I maintain an undetectable viral load prior to, during, and after birth, research shows the risk of transmission through breastfeeding is less than 1 percent?
    • There is also a National Perinatal HIV Hotline (1-888-448-8765) that is housed at the University of California, San Francisco, which you can call if you have any questions. I have more resources I can send you as well if you have questions.
    • Given the information I've shared with you, are you open to continuing this conversation?
  • (If NO) Do you have any referrals to someone who would support my decision?

I would like to learn more about breast/chestfeeding and HIV.

You can read our introductory fact sheets to learn more about breast/chestfeeding and HIV.

• Can I Breastfeed While Living With HIV?
• Overview of Infant Feeding Options for Parents Living with HIV

I feel alone. Do you know of any personal stories from people who have breastfed their children while living with HIV?

Please know that you are not alone! Women who have breastfed their children while living with HIV have lifted up their voices through The Well Project. Please see the resources below.

• BEEEBAH Resource Group - a Home For Breast/Chestfeeding Parents Living with HIV
• Liquid Gold (Part 1)
• Gold-ish Liquid (Part 2)
• Spotlight on Heather O'Connor: My Journey with Breastfeeding and HIV
• Some paragraphs or whatever
• A Girl Like Me LIVE Episode 6: Breastfeeding & HIV with Ciarra "Ci Ci" Covin and Heather O'Connor
• Breastfeeding & HIV in the US and Canada: Centering Women's Lived Experiences Into the Clinical, Research and Policy Discussion

Do you know of any providers in the United States who support a parent's decision to breast/chestfeed while living with HIV?

The Well Project is committed to sharing information about providers who are supportive of parents' infant-feeding decisions.

• List of US-Based Providers who Support Informed Infant Feeding Choices for Parents with HIV
• Perinatal HIV Roundtable 2022 - Updates in Breast/Chestfeeding: Parent Perspectives and Evolving Practice
• The Big Picture: Health Implications and Bioethical Considerations of Breastfeeding and HIV
• Breastfeeding and HIV: Viewpoints from an Adult and Pediatric Provider
• Breastfeeding, HIV, and Criminalization: Legal Considerations from a US Attorney
• Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada

Are there any additional resources for me or my medical provider?

Yes! Over the last several years, The Well Project has amassed a series of resources that can benefit you as well as your providers. We will continue to add to this collection!

• Perinatal HIV Clinical Guidelines (issued by the US Department of Health and Human Services)
• Breastfeeding, Chestfeeding and HIV: Supporting Informed Choices
• Women and HIV Infant-Feeding Resources Compiled by The Well Project
• Breast/Chestfeeding and HIV in the US: A Listening Session with National Advocates

"Get the Facts on Breast/Chestfeeding and HIV" Pamphlet: Get key facts about breast/chestfeeding and HIV at your fingertips! From snapshots of the latest research and current guidelines to a direct link for support in talking with providers about infant feeding, this pocket-sized folding pamphlet packs vital information into an attractive, readable format. The pamphlet is a helpful resource to share at conferences and community events, in clinic waiting rooms – anywhere women and other potential parents living with HIV are served.

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