Each year The Well Project hosts a convening called the Women's Research Initiative on HIV/AIDS (WRI). This meeting has been taking place well before I even knew that this whole world of HIV advocacy and research existed. I was even more surprised when I came to learn that it was focused on HIV and women. Stakeholders from all different fields of academia come together and really dig into a topic that hopes to move research priorities forward through a collaborative think-tank type model and honestly, what comes of it can sometimes only be described as remarkable.
Earlier this year I had the opportunity to attend the meeting that focused on HIV cure and sit around the table with providers, researchers, fellow advocates, and other individuals committed to the work. During this meeting, like the rest of them where I have something to say, I spoke my piece(S) – some of which seemed alarming to a few attendees. One thing in particular was the almost nonchalant tone of my voice when I admitted that neither I or many of the people that I know who depend on HIV drugs to remain healthy and well do the best at taking them as prescribed. The gasps in the room let me know that I had shocked some people.
Shoot. I was shocked that they was shocked.
O. Yall thought...?
I ain't think that I was saying nothing big. I was just being honest.
Another key moment for me was when I shared my experience of almost being enrolled into a study that I was referred to by my HIV doctor. I dunno. It was just something that wasn't right when I walked into that room with those two young students and they read all of the consent to me and all of these intrusive questions about my mental health where I shared that the worst my mental health had been in the past few years was during my postpartum period. They dug deep. And I let them because I was really tryna pick up what they was laying down.
Ion know what happened but them people called me at the end of the business day on a Thursday talking bout some I couldn't enroll in the study because my pregnancy test came back positive. Till this day I don't know where they got this information from because no other test confirmed it and I am as unpregnant as a rock as I write this.
They or that pregnancy test was tripping. Either way, I spent the rest of the next days trying to figure out what I was going to do about an embryo that didn't even exist. Not the type of struggle I need. Not even for, what seems to be, the privilege of participating in research.
This all caught the attention of one provider, Krista Dong, who has done a lot of work in HIV and cure in South Africa and we had the powerful chance of connecting during one of the last dinners. We toyed with the idea of both myself and another WRI participant Antoinette Jones (Dandelions Movement, Inc) being able to share our experiences as women living with HIV in the North American context with the staff of the programs that she leads under the Ragon Institute in Durban and surrounding areas. It all seemed like talk – until it happened...
It is something special about giving people space to empower their own, and beyond that – appropriately compensating them for the services that they have provided in a dignified way.
As Antoinette and I stood among the staff of ITEACH (Integration of TB in Education and Care for HIV/AIDS) in KwaZulu-Natal, South Africa late last month, in the middle of their winter, I was amazed. Witnessing the ways that community has been given the education and tools to share in a way that is culturally relevant for those they serve was invigorating. Hearing them speak their native tongue, describing the number of contacts they had made with individuals from the community was inspiring. To see the way that traditional healers collaborate with health professionals had my brain just a moving. It is something special about giving people space to empower their own, and beyond that – appropriately compensating them for the services that they have provided in a dignified way.
FRESH (Females Rising through Education, Support and Health) is a research initiative that targets young women who may have a high chance of acquiring HIV and is focused on HIV prevention and treatment. The time that we got to spend with this team of staff and group participants was nothing short of unforgettable! I got to sit in on classes on gender-based violence, depression, mothers-to-be, and more! You wouldn't even know that on the other side of the walls there were participants there engaging in interviews or bloodwork. Something clicked for me as I walked through the warm halls of the facility... this is the research, in real-time, that we always be talking about. I was watching it happen, but it didn't feel like research. It wasn't all dry and one sided. It was clear by the smiles on their faces that the girls were gaining something positive from their experience in the program. That felt like the couple wins that I needed to unfrown my face about my own experience.
Words could never do this journey justice. But I will try. This is just part 1 of my journey from the WRI to South Africa. I have so much more to share!
I wish we could get more on research!
I wish we could get more on research
This reminds me so much of a research study I was invited to participate in here in Indianapolis that focused on both hepatitis and HIV. Reading this blog brought back that experience—how insightful, eye-opening, and at times, emotionally complex it was. Like Ciarra, I saw firsthand how research isn't just about data—it's about real people, real lives, and the power of our stories.
Can't wait for pt 2
Wow, thank you so much for sharing this, Ci Ci. I really felt your honesty throughout, especially when you talked about the realities of taking meds and how that’s not always easy—for you or for so many of us. That moment of vulnerability is powerful, and it’s something that needs to be said out loud more often.
And that moment with the pregnancy test? Whew. That would’ve shaken me too. It’s hard enough navigating our health journeys without feeling blindsided like that.
I also really appreciated what you said about being compensated in a dignified way. That word stuck with me. It’s not just about payment—it’s about being valued, seen, and treated like more than just a subject. You’re helping shift the conversation toward one that centers our humanity, and that’s huge.
Can’t wait to read Part 2. Thank you again for bringing us along on this journey and for always keeping it real.
💜🧁
Shaking tables
Hearing about your trip keeps me going to hear that some people still care about black women needs. Sounds like great work is being done in the best interest of women. It has amazed me how something so simple to us can be a shocker for people who are not in our shoes. Honesty always shakes the room. Continue to shake those rooms.