June 28, 2024 – Future of Personal Health.
We spoke with Krista Martel, Olivia G. Ford, and Ciarra Covin, staff members of The Well Project — which aims to change the course of the HIV/AIDS epidemic, especially for women — about what has changed since the organization was founded, and strategies for dismantling stigma and other barriers to care.
How did The Well Project get started?
Krista Martel: The Well Project was started in 2002 by a woman living with HIV, Dawn Averitt. Averitt was diagnosed in the late '80s at the age of 19. She ended up working in Atlanta at a community-based organization — they basically handed her a bunch of books and said, "Start reading up."
She, like many other HIV activists, got very knowledgeable about the research and clinical trials, and quickly saw how little information there was around women with HIV. At a certain point, she had this idea: "What if there was a place where we could put all this information about women and HIV?" It would be a resource that people could access and bring back to their communities — not just for people living with HIV, but also for their care providers, and family and friends.
So that was the concept of The Well Project. It's about the whole woman — not just about treatment, but holistic wellness. The well is a symbol of gathering and coming together to exchange information and disseminate it within your community.
What changes have you seen in the HIV and AIDS landscape, especially pertaining to women?
Olivia G. Ford: The H in HIV stands for human. It's a health condition that people acquire by doing things that human beings do, and it's worth noting that we have tools to manage HIV. What continues to be a stumbling block to progress is stigma. An HIV diagnosis rides the coattails of existing stigmas: systemic racism, patriarchy, and sexism, and we can't end HIV as an epidemic without consciously addressing those stigmas.
These systems have entrenched HIV stigma and keep in place policies that punish people for who they are. We see all sorts of ways that control over Black women's bodies gets enacted. It's taken decades for women to get the information from providers that women who are on effective treatment can have babies without passing on the virus.
What is the "A Girl Like Me" blog, and how has it helped women living with HIV?
KM: When I joined The Well Project in 2009, there was a very small grant to start a blog, and there was no kind of direction on how to do it or what it should look like. It was a very organic process. It was word of mouth — people just started coming in and sharing.
Bloggers can write about whatever they want — and can blog anonymously, because we want it to be a safe space for people to be able to share their experiences and connect with each other. What's so powerful about it is that other people can see themselves represented in the experiences people share. It makes people feel less alone.
Ciarra Covin: As a woman living with HIV, finding the "A Girl Like Me" community unveiled so many different members of my community that I probably would have never met. It was the first time I had ever seen so many women who were living with HIV sharing their stories. When I go into the doctor's office, there's almost never anybody in there who looks like me.
Through "A Girl Like Me," I've found other community members who affirmed I was not going crazy, because sometimes you feel isolated and alone thinking you're the only person living with it, that you're the only person who's ever had a baby, that you're the only person who understands what internalized stigma feels like.
"A Girl Like Me" just opened those doors. It helped me see that people living with HIV are still humans. We have wants, desires, needs, things that we want to do just for the heck of it, and those things should not be taken away merely because of our HIV status.
The conversation should start, continue, and end with the population that is living with HIV, but the onus is not on one group of folks — it's going to take all of us to end this epidemic.
Read this article on Future of Personal Health
This interview was featured as an insert in the June 28, 2024, issue of the USA Today newspaper – view the print version
