Monday is HIV Long-Term Survivors Awareness Day. In celebration of those of us living with HIV and who are able to age with HIV, we caught up with Wanda Brendle-Moss, a fierce, dedicated and charismatic advocate for HIV. Brendle-Moss comes back to AIDSWatch year after year to share her wisdom and story to returning and new advocates.
Brendle-Moss is here to make sure her voice is always heard, and the next generation learns from her. She is committed to raising awareness of the ways that populations aging with HIV are too often left out of critical focuses for both HIV prevention and care.
Check out their conversation, which has been lightly edited for length and clarity.
Thank you so much for joining me as a critical advocate in our AIDSWatch community. How did it feel to be back in-person this year for the 30th anniversary of AIDSWatch? What has continued to draw you back into this community of advocates each year?
It was a double honor for me to be back for the 30th anniversary because I have been sick for a couple of years now. Even if there had not been a pandemic, my participation in person would have been restricted. I made up my mind after the beginning of 2023 that, come hell or high water, I was rejoining my family in whatever way that I could. It was wonderful to do the virtual — far better than not doing anything and to make our presence on the Hill — but to be back in person, there’s something different, something about sitting around the table, with people you know.
I knew most of the people in the room, but I was pleasantly surprised and glad to see faces I did not know. That [means a lot] for me, for a person almost 69 years of age, and going through health concerns. It has been my concern and a sense of urgency for me to participate for what time I have left because I still have breadcrumbs to give to younger advocates. But, I hope we can start gaining people like yourself, younger than I am. It is critically important for us to engage our younger siblings in this work, because the state of our union right now is going to hell in a handbasket, the way Congress, and state legislators are going. It is really important for us not to be quiet.
This year we were able to incorporate a new listening session for those aging with HIV. As you have now been living with HIV for more than 20 years, how has your advocacy shifted for those who are now thankfully able to age with HIV?
Initially, I was really embarrassed by the fact but also acknowledging that I’m aging — but I was concerned about the walker going to AIDSWatch. To my surprise there were at least four or five walkers this year. That blew my mind. It shouldn’t have, because I know we are aging, and we have stuff! Also, we were all women, but it didn’t stop even one of us from being there.
Since I am one of those aging, let me add that my brothers and sisters, gender nonconforming, transgender sisters and brothers, who were perhaps born with HIV, may only be 20 years old, but they are aging with HIV. I do not leave anyone out: if you have had this virus for one day, it changes your body, how your body responds to the medications you can take, to COVID-19, to getting cataracts earlier in life. The ramifications of AZT caused long-term effects, but if we didn’t start on something, our overall population worldwide would be far less because we were dying in the beginning.
What makes me angry is that we have never from the beginning talked about the risk of older folks. Grandma and grandpa are at risk of contracting HIV. I understand where the money is, is what we talk about, but the truth is a lot of older folks may lose their spouses, particularly in more affluent places older folks may live — and there’s a whole lot of sex going on! Back in the day with their spouses being monogamous, but the truth is, now they start hooking up like young folks. And no one told them they need to be on PrEP or they need to use a condom. Back in the day, an STI was different, but the things we contract now — we have some resistant STIs, and we need to be talking about sex with these folks.
As we continue to adapt to ending the HIV epidemic, we must not forget about the communities who are often left out of new prevention and care decisions. Are there any other communities you feel are missing from AIDSWatch and advocacy strategies?
We have a tremendous lack of Native representation, some representation of the Latino community, and to my knowledge, we lack Middle Eastern populations. There were a few of our sex worker advocates there. We need people that mainstream people don’t want to talk about.
I didn’t see many young folks there. The momentum is there, and it doesn’t need to necessarily only focus on HIV. Gen Z is recognizing a lot of social injustice — and that momentum, we need to engage with it. We need to bring them in. We could even do it like a buddy program with an older and younger person — something like that — because that has been on my heart seriously since I came home. I have this urgency in my spirit, and I know the health issues I’ve had. I pushed to come. Whether I’m ready to return to the Hill next year I don’t know, but I still value being in the room.
Thank you so much for continuing to advocate for all identities and communities affected by HIV. We are so inspired by stories like yours, and appreciate you sharing your lived experience to make others feel comfortable enough to seek testing, care, treatment and also become advocates in these spaces. Do you have anything you want to say about your life as an advocate and to those new to advocacy?
I started a nursing career at the beginning of this epidemic, and I was a young mother at that time. I was often pulled in to take care of those patients — a lot of nurses would not. There was fear, but there was just some plain bias. Even though I was an uninformed person, I never believed [HIV] was only about gay men because if you have anything that deals with sex… Sex happens in all settings. If it is impacting one group, it is impacting another, and it turns out it was true.
It’s humbling to be so appreciated as an advocate. To me, I’m just a girl from North Carolina who, if it weren’t for HIV, no one would know my name. I have been living with HIV since 2002, but only started my advocacy in late 2010, but to be this loved and respected… that totally is a mind blowing thing. A great deal of my advocacy is done through social media, since I have transportation and mobility issues, but I’ve documented my illness very well. And the responses every time I made a post were “I needed to hear this.”
I believe I cross ages and generations, and It’s part of my drive right now. If I can’t engage you all, if I can’t turn around with my baton, and there’s not somebody back there to grab it, what have I been doing?
For more information this HIV Long-Term Survivors Awareness Day on how you can join the fight to #StopHIVTogether, visit the Centers for Disease Control and Prevention’s campaign page.