Word of Mouth

On Friday August 23rd, I had the extreme honor of presenting our poster Updated Infant Feeding Recommendations for US Parents Living with HIV: Empowering Patient/Provider Partnership & Communication at the 2024 National Ryan White Conference on HIV Care & Treatment in Washington, DC with Olivia G Ford, The Well Project's editorial director. Missing the in-person presence of two of the poster's other authors, Heather O'Connor and Krista Martel, the presentation was both intimate and a success.

As we stood at our digital poster, a feeling of gratitude crossed over me and I allowed myself to take it in. I was standing at a national conference, representing a national nonprofit, on a topic that has such a personal, special place in my heart. I never imagined this for my life but am so grateful for it. I feel like I have had the opportunity to present on the topic so many times over the past few years, but this was special. Our poster focused on the results of a survey conducted by The Well Project, among other things, that shows an increase in provider's support for parents living with HIV who desire to breastfeed. This made me happy.

Looking back on my own experience, breastfeeding before the guidelines were updated was kind of sticky. I mean, duh – but no, for real. I think about those providers who cared for me and my baby and the weird looks they probably got from their colleagues because of their willingness to support a, then, pregnant woman living with HIV like me to breastfeed. But they never let me feel any of that and I am thankful for them listening to *and* hearing me. That's not even the part that makes me feel the happiest though. It's the fact that I have gotten the chance to both advocate for, witness, and take part of change that has taken place in this long journey of HIV/AIDS. Like seeing guidelines get updated that make it more clear for how providers can support people living with HIV is freaking major! I have actually found hope in parts of the system again and see how my efforts from my little place here can contribute to positive changes on a larger scale – even when I don't think anybody is listening to me.

With each person that stopped to hear more, the warmer I felt on the inside. It was a quaint reminder that sometimes that's what it takes – a connection to be made. I stood in front of our poster, excited to share with the people who passed about the guidelines' updates, what we learned from our survey, and how they can go back to their home institutions to share the information with the people in their circles. The power of the word of mouth. Maybe one of those people will be the one to provide care for the mom on Instagram who just asked about breastfeeding and HIV? Who knows? I am just glad that the word is getting out and that more providers and people living with HIV are feeling more comfortable to have the conversation. And further, engage in a relationship that allows the person living with HIV to make decisions for themselves.

Now, THAT makes me proud!

+Ci Ci+