Kayla Quimbley-Young is a poet with a powerful perspective—she was born with HIV. At 26 years old, this Albany, Georgia native has transformed her personal journey into a fierce advocacy platform for people who acquired HIV through vertical transmission (passed from mother to child). Her commitment to liberation for all stems from her lived experiences combating HIV stigma, working to decriminalize HIV, and raising awareness of the disproportionate impact of HIV on youth of color.
From discovering her status in fourth grade to becoming a nationally recognized advocate with a Master of Public Health degree, Quimbley-Young’s story is one of resilience, transformation, and unwavering dedication to community healing. She uses a social justice framework to shift culture and policy by elevating the voices of young people living with HIV, with a goal of increasing their inclusion in the planning, implementation, and evaluation of HIV-related programming and policies across the United States.
Through poetry, public speaking, and coalition building, Quimbley-Young has evolved from what she calls “living in the shadow of HIV” to sitting at decision-making tables with stakeholders and policymakers. Her work addresses the knowledge gaps and health disparities that persist in communities where HIV remains a “hush, hush” topic, particularly in rural areas where resources and education are limited.
Now married and expecting her first child, Quimbley-Young continues to break barriers and challenge misconceptions about what it means to live with HIV in 2025.
Could you give a little bit of background on who you are and the issues you fight every day as it relates to sexual wellness?
My name is Kayla Quimbley-Young. I am 26 years old. I’m from Albany, Georgia. I’m from a rural town where everybody knows everybody, from a young age, I basically was hit with some challenges that I was not expecting that required me to be resilient. I was born HIV positive, from an early age I learned about the gaps in knowledge and the disparities that we faced within our communities, HIV being one of those topics that were kind of hush, hush! Especially in town that I was from.
That’s what has driven me to do the work that I do. Talking about HIV prevention, HIV treatment, HIV education, I was almost like a wallflower, or when people say, “I wonder what it would be to be a fly on the wall.” I was the fly on the wall that was able to hear these conversations being camouflaged, while people not knowing that I was HIV positive. I got a direct insight on what stigma looked like, what it felt like without even people knowing.
It gave me real insight to the psychology behind us, when we don’t know, when we’re not aware, how that affects our social circles, how that affects stigma and misinformation, getting out, how that affects us going to get tested and getting treatment.
Seeing these different structures within our community really drove me to say, “Hey, look! Not only do I want to tell my story, to empower myself,” because I call it living in the closet or in the shadow of HIV, is a feeling that if you feel it, or if you know, it is isolating. I was just tired of the isolation. I was tired of the fear. I was tired of the internalized stigma.
I was tired of the external stigma that I was receiving from the community without them even knowing that they were projecting that stigma onto me. I just made a decision that one, I wanted to liberate myself. Two, I wanted to empower others to liberate themselves. Three, I wanted to empower my community, to go and get tested, to learn more about HIV, to know what it is. Knowledge is power. That is how I got to where I am in a short nutshell.
How do you deal with stigma and center yourself emotionally?
I found out I was HIV positive in the 4th grade, so I was probably around the age of 10. I want to say maybe 9 or 10, for me, from that time, from 4th grade, I didn’t really know what HIV was, I had somewhat of an understanding that it was something negative.
Because, even in elementary school, surprisingly enough, one of my friends, our moms had talked, I guess my mother disclosed her status to this friend’s mom. This friend went back to school and told people that I had HIV. I’m walking in the cafeteria, it’s people laughing at me, pointing at me.
They’re saying that I have HIV, I’m like, “I don’t have HIV,” at that point is when my first understanding of stigma, or that this is something bad, or, having that concept of what HIV is. Then the next year, I took my first sex-ed class. What I’m seeing are pivotal moments that also pushed me to do the work that I do.
But I took my first sex-ed class in the 5th grade, my sex-ed teacher when she got to HIV and AIDS. Her talking point was, “Don’t have sex, or you’re going to catch AIDS and die,” straight, plain, and simple like that. I remember being so hurt, I remember being so emotional.
I was with my cousins, it was like one of those, they did summer health summits. You go down to the different classrooms, sign up for different stuff that they’re educating about. Get your little bags and stuff. That was a pivotal moment for me, as I got older I learned about HIV myself. I just realized that there are a lot of misconceptions.
By the time I get to middle school, my brain, I’m developing preteen stage now. Now, I’m really starting to think I like boys. Of course, I’m thinking about dating, I’m thinking about relationships, I’m thinking about marriage, I’m thinking about kids.
All of me having to deal with this internal battle of who am I, what is HIV? How is this going to have an impact on my livelihood? Who’s going to want to be with me? Who’s going to want to marry me? Who’s going to have kids with me? How am I going to navigate the world as a young Black woman living with HIV? It was very hard, very depressing, very isolating, I struggled. I think that the beauty and the struggle is that those emotions, I think that they can either weigh you down like a ton of bricks, or they put a fire in you.
I think what my turning point for me is a summer camp, that I would go to every summer, it allowed me to be around other kids who were also HIV positive, or had a parent or a family member who was HIV positive, going to the summer camp every year, allowed me to be around other people who are like me to know that I was not alone, to know that I was safe, to know that I was heard, my most deep, innermost thoughts. I could share those with people.
It allowed me to kind of open up and blossom in a way that I don’t think I would have been able to had I not had the opportunity. But that program gave me, I feel like the strength that I needed to be able to have, that desire for liberation, to have that desire to break free from stigma from the shadow of HIV.
I’ve been out about my status openly, publicly, since I was in the 10th grade. Since I was about the age of 16, the range of emotions, from being an adolescent to now as an adult. I always tell people who get a new diagnosis or anything like that. That it’s hard, but every day gets better.
The emotions that I feel as an adolescence, the fear, the grief, the pain, all of those things. Not that they don’t exist at all from moment to moment as an adult, but they’re not as intense as they were when I was a kid. I think that empowerment, knowing who I am, being confident in, who I am understanding that technology medication has advanced and changed, that what HIV used to be is not what it is today, gives me a peace of mind gives me comfort. Not worrying and stressing about the things that used to be more prevalent, we would be fearful about.
We know so much more now, we have so many more tools now things are better from an emotional state of mind or point of view. Emotional, physical, mental, there are struggles. But overall, I think that I’ve use the tools available to me to fight through and overcome and be resilient even in the face of this level of adversity.
What would you tell people afraid of taking HIV medication?
I was taking HIV medication before I even knew I had HIV, right. From birth, I’ve been taking HIV medication. I went through a period where at first I was taking pills. These big horse pills that were terrible, hated them. Then I started taking liquid medicine and the liquid medicines, they had different flavors, I remember, like banana, apple, cherry, and all of them were just absolutely terrible.
And the older I got, whenever I would go to the doctor, they would always say, “In 5 to 10 years we’ll have a cure.” I’ve been hearing that for a long time, but outside of hearing that, and there being no cure, the medication has definitely advanced from, whereas I was taking 3 to 4 pills, now I’m down to one pill, and for others who struggle with medication adherence, because throughout my journey I’ve struggled with medication, adherence to meaning.
I’ve struggled to take the medicine, or a lot of it is mental, more so than your body have a physical response. But, there are injectable medications now that you can take instead of the medication, I think once a month, every, maybe 2 months, or something like that, that you can do on the medicine.
I think it might vary from injection to injection. But for people living with HIV, if you don’t do well with medication, then you should talk to your provider about injectables also for PrEP, which is a preventative pill. That is, one pill once a day that can prevent you from contracted HIV.
They also have injectables for that now. For people who also want to protect themselves and be proactive, there are injectables for that, so I will also say to you that if you’re interested in PrEP but don’t like to take pills, then, injectables are now available. So that’s the beauty in the medication and the advancement, from the time that I was young until now. So yes, that’s what I would say. Definitely, talk to your provider about any prevention or treatment options that are available, because they look much different from the cocktails from the eighties or the nineties.
How do you take care of your physical and mental health while living with HIV?
For me it’s no different than the next person. Really, one is adhering to my medication, obviously. Then everything else is around like mental, emotional. I write to express myself, to get my feelings out. I’m a poet, a spoken poet. Poetry has been my ride or die since I was like 10. That’s where I was able to flush these feelings out, flush these emotions out, poetry has actually carried me, if anything, because poetry is what introduced me to the field of HIV in a way, because I was able to tell my story through poetry, that opened the door for advocacy for me.
Poetry is one of those things. I try to go to the gym and stay active as well, drinking my waters, minding my business. Those type of things, but really, I tell people living with HIV is mind over matter. Whatever brings you peace of mind if that’s reading, writing, walking, exercising, being creative, whatever that looks like for you, really, dive into that.
Get lost in that the thing get lost in the things that bring you peace that bring you joy, because from what I’ve seen in my own personal lived experience and also working with others that are also living with HIV, is that more than obviously having a life-changing virus into your life and having to take medication.
It’s the mental aspect that they cannot release or let go, of the grief, the pain, the regret, the fear, all those emotions. We have to find a way to kind of subdue those. For me, also, having a strong support system, I would be remiss if I did not say that as well. I have a very strong support system. My family has always loved me, encouraged me.
I’ve never felt ostracized by my family, really, whether it’s your blood family or your chosen family. I’ve leaned on mine to support me, I think that that’s a good place to start, even if you don’t have that support, you can build that support.
I would say research and try to find a community that resembles what it is that you’re looking for and try to become a part of that to get support. If you are navigating an HIV diagnosis.
How has your life evolved from childhood to now?
Life has been nothing that I could have imagined it to be honestly. I could have only dreamed that my life would end up the way that it is today. Honestly the challenges, if I had to go and do it all over again I would. I would say I just wouldn’t change anything about my life or the challenges that I face, where I’ve come from to where I am now. I’ve been able to use my voice in a way that I could have never dreamed of, that I never expected was never my intention to be honest.
It’s been beautiful to see myself evolve into this beautiful young Black woman who has started a career in the field of HIV, educating, empowering, talking to people, stakeholders about what changes need to be made, coalition building with others to really make a change. That’s been beautiful. It’s been a life changing experience for me to not just be on the outside telling my story, but being at the table also, having these conversations with people who are quote unquote often in charge.
Aside from the work of it all, I am now married. I have a husband, the little girl me who wonder who would love me, or, if anybody would love me, has now, grown into that woman that knows that she’s worthy of love, that she deserves love that HIV diagnosis doesn’t define me and doesn’t define anybody else who wants to love me, either. I’m happily married, I’m also expecting my first baby. Life is good right now.
Life is really just showing me that. It gets greater later, basically. I tell people that all the time it truly does. But coming from my lens, I mean, that’s really been my life. It has gotten greater later, I’m only 26. I feel like this is just scratching the surface of what that looks like.
How do you break down the silence and stigma around HIV?
Well, first off to break the silence and the stigma of it all, I think that we have to have conversations right, and it seems simple enough to say, “I’ll talk about it.” But we really in our community, we cherry pick what is important to us and what is not, or what we want to bring to the forefront of what’s really affecting our community and what’s not.
I really think that in order to like stigma almost to me, and this might be controversial to say, but stigma to me is almost worse than HIV itself, because at least with HIV it’s a pill that you can take to suppress the virus. Even in the face of knowledge people, it’s hard to suppress stigma. It’s so hard to eradicate.
There’s no pill that you can take or give people to erase the stigma that’s perpetual within our community. I’ll say this is controversial, but stigma will kill you faster than HIV, and I say that because with stigma we don’t realize that we’re having conversations around people, and we don’t know who’s in the room.
So, you don’t know if that person was going to disclose to you. You don’t know if that person is now scared to go and get treatment because they don’t want to be seen or caught at a clinic, because y’all talking about who was at the clinic, and this person might want to go get on PrEP.
But they scared to go get on PrEP, because y’all gonna think that I don’t know y’all gonna think whatever y’all think about HIV or the stigma associated with it.
These conversations I always tell people we have to be mindful of the conversations that we have, and if you have the knowledge of what HIV truly is and what it isn’t, then I say that HIV is not just a you or a me issue that it’s the we issue right? Nobody wakes up and says that they want to get HIV today. “I just hope I catch HIV today.” Nobody is saying that and it’s easy to point the blame or point the finger at somebody.
But at the end of the day, when you have 2 people, and one person finds out that they’re HIV positive, but had no understanding or knowledge that they had slept with a person that was HIV positive. Then that means that somewhere along the line there was a breakdown.
Something there with the the morality of the situation or the moral implications of that. The social implications of why a person would not share their status speaks volumes when we see HIV transmissions amongst our population at the rate that we do. And this is around stigma, this is around the conversations that we have, that’s one thing.
I like to say, too, especially in metro areas, the treatment and the prevention is there but at the same time the education component part of it, the stigma part of it. It’s hard to reduce those transmissions when we are scared to talk about, or we won’t talk about, or we perpetuate these implications that you’re dirty or you’re nasty if you ask somebody what their status is, etc. So having these conversations, getting educated, going to your local Health Department, talking to providers, talking to your local health Department or public health educators.
Knowledge is power, we fear what we don’t know. I feel like the way to combat stigma is to know about it. If you’re scared about it, or you find yourself talking negative about people living with HIV, or even with other sexual health diseases. I encourage you, I urge you to get educated about that dig beneath what that fear is that you have around it. Is your fear around you not want to contract that you, not feeling like you can contract that. Is it around just whatever is underneath that I just encourage you to dig a little deeper, to go and do some research to go and get educated on it.
That way when you go back into your community, you’re actually adding value. And I will also urge you to ask yourself, is what I’m about to say about this virus about this disease. How is this helping my community? How is this helping my friends? How is this helping my family? Are the words that I’m about to speak, empowering and informative? Are they tearing people down, and are they spreading misinformation like? Really? Ask yourself that we are in the age of information, the age of Google.
We pick up our phone so quick to Google, something. Google, what you about to say, think about it before you say it, that’s what I urge. And then, in conjunction with that, I just urge people to get affiliated with their local health organizations or the Institutes. For me, one like the Satcher Health Leadership Institute at Morehouse School of Medicine. They are addressing the needs in the Black community in rural parts of Georgia that lack accessibility to high quality HIV aids education and treatment options.
They have different events that you can attend to learn more to come in contact with people like me right to hear their stories. And I also get you connected to treatment and prevention. I would just say, especially if you’re in Georgia, you in a Metro Atlanta area, especially, we’re trying to get more into the rural communities, but especially in Atlanta, in that metro area there are so many resources that are available to you. And I’m not gonna throw out too many names out there.
But if you’re looking for it, is there in the rural areas, I’m trying to get more into those areas and get to the providers in the community, but it’s much harder when you have stigma, and you already have systems in place that are kind of like deeply embedded in how they operate and how they work. But yeah, that’s my take.
How do you navigate disclosure in relationships and marriage?
First and foremost, I’ve been navigating the waters of disclosure since middle school. I think I came out to one of my first little boyfriends, or whatever you want to call it, and like maybe 7th or 8th grade and he did not judge me. He accepted me for who I was, and I think after that it kinda obviously, once I came out publicly about my status, then it made it much easier for me to share my status or disclose my status because I was out out now.
But there are so many different ways to disclose that people choose to disclose me. For myself, I’ve chosen to try to disclose, I would say to me within the first few weeks, right, that could be the first day that could be a week. Well, my, how I measured it really was like, if I really like you, and I think that this could turn into something serious meaning. We could be in a long term relationship.
Then I disclose within a week’s time, if we’re just talking and getting to know each other, no sexual implications there at all, but just trying to feel you out. It might not go somewhere, we’re not really that compatible. Then I might not tell you, because there’s no need to we’re not doing anything sexual. I don’t have to tell you that. But as for my husband and I speaking about marriage, my husband on our first date he was locked in.
He knew that he wanted to be with me, and I was like, “Sir, you don’t even know me like that,” right? And I disclosed my status on our first date, our very first date. That’s on, look, I’m like, “Hey? You say you want me, sir? You don’t know me, but I’m gonna tell you who I am that way you have a good understanding of who you’re with, because if you’re that serious and you that gung-ho on the first date, then let’s go ahead and get all the theatrics out the way this is who I am, this is what I come with.”
Do it, that what you want to do with it? And my husband his mom has a nursing background.
He was already educated, somewhat on HIV, so he wasn’t ignorant to what it was. He went back and did whatever research he did. But the way I protect my husband, so to speak, is one I communicate with my husband. My husband is very in the know about my viral load, my CD4. What’s going on with me in that realm? My medication adherence.
We have a very open relationship about how HIV impacts me and how it then impacts him when I’m not where I need to be. And because I love him so much that even if I’m struggling with, let’s say medication, adherence, right? We talk about that.
We have an open dialogue about that. And just to be real about it, viral. Load your viral load, your CD4. Okay, my viral load might be too high. Right now, what does that look like for us. So we have real conversations about what it is. That’s been very helpful. My husband trusts me. My husband, not only does he love me, but he trusts me. With that, we’ve been able to build a beautiful bond, a beautiful connection based off honesty, trust, transparency.
In terms of religion, we both come from Christian household Christian backgrounds. Prayer, warrior, family members, mothers, who love us both deeply and we’re grounded in our love for God, our knowledge of God, and that’s what kind of keeps us together. We pray before we go to bed, we pray before we eat, that’s our thing. We keep God at the center of our marriage, the center of our relationship.
And yeah, we let everything else, kind of figure figure itself out and my baby, right now, I’m just talking about what the best options are, technology, medication, treatment plans and things like that have changed since I was born in 1999. And the things that I did not think were possible are now possible.
And now, I have to deal with the reality that I’m 26, and for 25 years, 24, 23 years! I went my life thinking that there are certain things that I would not have the options available to explore in terms of having a baby, or breastfeeding, or giving vaginal birth, things that I now have to ask myself do I want to do that? Because I don’t, and some people do.
There have been women who are HIV positive. Who can birth babies who are HIV negative? Who can breastfeed babies and still be HIV negative. It is possible now, right, whereas in the past we know that mother to child transmission through the vaginal canal, which is how I contract the HIV is now a thing where women who are living with HIV can do that and produce a healthy HIV negative baby as well as breastfeed.
And every mother has the right to her body, and what she wants to do for her child, and I think for me, when you talk to medical providers, they say. “Well, honestly, if you have an undetectable viral load, we don’t see a reason for you to not have vaginal birth. Actually, it could put you more at risk to have a C-section which would allow the baby to not contract HIV. It will put you like definitively right what we know, for a fact, the baby would not contract HIV.
But even through the birth canal. Now we’re confident we’re confident in the the medicine, the advancement that you can have this baby HIV positive. And it come out HIV negative. That’s where we are in medicine. And so it’s a beautiful thing. It’s a scary thing, but it’s a beautiful thing so now I’m navigating that right now, and it’s beautiful, scary, joyful, all of the all of the range of emotions.
If there was one thing that you would want every Black person watching or reading this interview to take away, what would it be?
I want you to know that you are so powerful. Your voice, your thoughts, your intentions. They matter more than we sometimes give thought to. I encourage you to think before you speak. Ask before you assume and educate yourself for what you don’t know. Do research, know that you are loved, love yourself, love somebody else next door to you and stay Black.
Video interview with Kayla Quimbley-Young coming soon. Check back shortly to watch this exclusive conversation.
