S1E11 "What Black Moms Need To Know About HIV"

HIV still gets treated like a “somebody else” topic, and that stigma has real consequences for Black women, Black mothers, and birthing people. We’re naming the quiet parts out loud: what HIV actually is, how it differs from AIDS, and how fear-based myths can creep into healthcare, relationships, and even the way we parent. If you’ve ever felt awkward asking for an HIV test, unsure what’s included in a routine STI panel, or worried about how a provider might judge you, you’re not alone and you deserve better care.

We also get practical about HIV prevention and sexual health. We walk through how HIV can be transmitted and why prevention should start before pregnancy, not only once you’re expecting. Then we break down today’s prevention options in plain language: PrEP (pre-exposure prophylaxis) for people who are HIV negative, and PEP (post-exposure prophylaxis) after a potential exposure. We talk about how these tools fit into reproductive health, prenatal care, preconception counseling, and family planning, including real questions you can bring to your OBGYN and ways to start the conversation with a partner.

From public health data on HIV rates among Black women to community campaigns that move us from “risk” to “reason,” we keep the focus where it belongs: compassion, awareness, and autonomy. We also reflect on what it looks like to raise kids in a world where stigma creates secrets, and how honest conversations at home can be a form of protection and advocacy.

Subscribe wherever you listen, share this with a mom who needs it, and leave a review so more people can find these conversations. What question do you want to ask your provider after listening?

Transcript

Why HIV Belongs In Mom Talk

Jaye Wilson 0:17

Hey girl, hey, it's your girl Jaye. Welcome to another episode of Melinated Mommy Talks, the Podcast, where we are talking about and exploring all things within the Melinated Moms spectrum. If you listened to our last few episodes, then you know we've been really unpacking and defining what it means to be a mom in the margins. If you're just tapping in, go check out those previous episodes when you can. I promise you won't be disappointed. In our three-part conversation with Lynette Trawick, we talked candidly and openly about her life as a mom, black woman, and advocate living with HIV. And whether we feel comfortable talking about it or not, we cannot deny that HIV has been devastating to the black community. With that being said, it is impossible to talk about HIV without talking about black moms. That means I have to spend a bit more time talking about some of the current data and some of the challenges black moms are facing when it comes to living with HIV. Still, we also have to talk about how to keep ourselves HIV negative through testing and prevention options if we are not living with HIV. So go ahead and pull up your metaphorical seat, tap in, and enjoy this episode focused on HIV in the birthing, motherhood, and parenthood space. Let’s start with the basics because we do know that some people still may not know what HIV is, and there is still a lot of stigma around what it is, how you contract it, and what it means to be living with it. So the first time I was actually introduced in a professional sense to what HIV actually is was when I was working as a nurse at Callen-Lorde. It's a community health center centered in New York City. And our patient population, I always say our because I just feel like I'm gonna work there forever in my life. Like it's just a part, such a significant part of my life. But I digress. Our patient population was primarily serving the LGBT community, people living with HIV, transient youth, and really just understanding how our lifestyle, our life choices also intersect with our sexual identity, our ability to take care of ourselves, and you know, really being able to own those choices, but from a space of support and not judgment. This is the first time I was introduced to HIV from a sense of support, then diagnostic care. And I think it's really important to make that distinction because when we talk about HIV, the stigma, the judgment, the bad decisions, the laundry list of who, quote unquote, are actually obtaining HIV really sets the tone of how people are delivering care and how they are also participating in their care. Being at Callen-Lorde, it just opened my eyes so much to understanding how our healthcare system can actually emphasize the health by including compassion and understanding in that same regard. Once we started to talk about, we have patients who are living with HIV, my first thought was they're gonna look a certain way, they're gonna come from a certain background, they're gonna have all of these different pieces to them that justify what HIV is. And I am so grateful that not only did that whole thought process completely be dissipated through work ing there, but we took time to actually talk to patients, to hear who they were, to understand how their story is not a part of the circumstance of how they acquired the disease, but how it was actually leveraged for them to learn how to live with this disease instead of dying from it. Getting back to the actual definition of HIV, HIV actually stands for human immunodeficiency virus, not to be confused with AIDS, which is the acquired immune deficiency syndrome. So HIV is the virus itself, whereas AIDS is the syndrome resulting from advanced HIV. HIV is a virus that impacts the immune system and its ability to fight off disease. In the late 70s, early 80s, when we saw this rise in, at the time was called actually grid, we had no idea where it came from or what were causing these symptoms. So you saw a stigma start to form around the acquisition of the disease and who it came through, what they looked like, and these stereotypical identities that are still unfortunately showing up in the way that these stigmas are defining HIV today. It helps us to understand the historical context of HIV, but also the evolution of it. Back then, because there was little to no understanding of what the disease was, how it was being acquired, and who was susceptible to it, all of these theories around this disease led a lot of people to fear. Having a fear-based foundation will take a lot of time for us to not just change our own perception of it, but also change the way that we can learn about this disease and teach others. There's things that, you know, again, I had to learn in my own career as a nurse how to address asking these very sensitive questions. And, you know, how does this even relate to the topic that we're talking about, which is motherhood? So one thing that I think is very important to point out is when it comes to pregnancy and going through that entire process, the only times where you actually don't have the ability to opt out from an HIV test is when you are pregnant and when you are incarcerated. You know, I thought it was very important for us to, you know, bring this topic to the forefront, but also think about how our healthcare system really is set up. Like if there is an opportunity for us to emphasize the need for HIV testing awareness and prevention, why aren't we talking about it prior to pregnancy? Why are we making it an option before we bring a child into this world or even become pregnant? But we're not addressing it from that same lens when a person does become pregnant. It goes also back to thinking about prevention versus reactionary healthcare practices. When we're making decisions out of reaction, or it is usually rooted in fear. So we're going to be making decisions without all of the information that we may need in order to be informed and strong in that decision. This podcast and, you know, just understanding Lynette's story really helped us to dive into it from a different perspective of someone who's living with HIV, but also who's not allowing that to define who she is or what her motherhood looks like before or after her diagnosis. I thought it was so powerful for her to talk about that and to talk about how that actually played a big part in her relationship with her husband. You know, we love a good husband, and their decision to go to a provider who understood their family planning options and how much this was important to them. So, again, despite what her diagnosis was, she knew that her and her husband wanted to have a child, but they also understood the importance of that child being born HIV negative. And, you know, she was successful. And she showed us that there are more practitioners out here who understand childbearing and living with HIV do not have to be a death sentence, and it also doesn't have to be contraindicated. So working at Callen-Lorde, I was able to see what sexuality looked like and reproductive health choices look like through different levels of diagnoses. But I also had that question as a childbearing person at the time, you know, why aren't we seeing more patients who are interested in childbearing or who are living with HIV here in this practice? And no shade to them, because I absolutely love Callen-Lorde. They taught me so many things. Um, but at the time, I don't think they really had the language for how do we address this really, really sensitive and you know, essentially controversial space of perinatal health. And I think they wanted to make sure that they were a part of the, the pathway for a person, whether regardless of what their HIV status actually was, but they weren't as prepared for pioneering what that perinatal care could look like. And that's okay. I think we all like there's so many things that I mean, we can do a whole episode on Callen-Lorde, because Jesus. But there's so many things that they pioneered and they're going to continue to. You know, they're more than 50 years in the game. But, you know, just being there and understanding the connection between re, reproductive health, between compassion and care, um, between, you know, identity and the way that we decide to show up for ourselves and our healthcare choices, um, that also's, you know, created that foundation for the work that I do. So I think it goes together like peanut butter and jelly now, right? So since we've already defined the difference between HIV and AIDS, I think we need to talk a little bit more about how it can be contracted and also what prevention looks like. So the acquisition of HIV can happen in several ways. The most common that we know about is through sexual contact. That's vaginal, that's anal, and that's in the clearest forefront. There's also the acquisition through IV drug use or exchanging of needles or use, as well as cross-contamination through blood, blood products, plasma. Um, so in the early 80s, once we saw this new emergence of HIV, the guidelines for donating blood and accepting blood actually started to change. So patients who were hemophiliacs or patients who had issues with hemorrhaging or blood loss started to become more susceptible to potentially being at risk for acquiring HIV. So this actually changed the screening protocols and the guidelines for quote unquote who can donate. This again ties back to what we were talking about with stigma. We know blood products, if you're donating blood products, they're going to test it for HIV regardless. This is a standard practice guideline, this is a universal precaution. And, you know, when we talked about earlier, since HIV is still considered an optional test unless you are pregnant or incarcerated, there are a lot of people who may not know that they have this diagnosis. And not to my knowledge, if you were to donate blood and your blood came back positive, I'm not sure if they call people back to let them know. So we'll, we can actually do some research on that and find that answer. But again, with us thinking about that, that shifts a little bit of, you know, how can we be more preventative? What does prevention look like when we have so many gaps in care and in the way that we're telling people to care about prevention? If you go to your regular PCP or you're getting tested for STDs or STIs, HIV is still an optional test that you have to ask for separately. This can this can actually create limitations, um, but it also can make you wonder if you can opt out from recognizing how this disease can shift your responsibility and sexual activity as well as your relationships with other people. How can you prioritize being a preventative and responsible partner if our healthcare systems don't emphasize that, that as a priority? Now I want to kind of dive into something that is helpful, which is we have options for how we can be responsible and prioritize our relationship with disease acquisitions, specifically around HIV. We have the option of PrEP, which is pre-exposure prophylaxis. This is a medication that is assigned or that is written to you if you are HIV negative. And this helps you to prevent the possible acquisition or spread of HIV. In order to receive PrEP, you must be HIV negative. So every time you are refilling your script, one of the main components of that refill is to take an HIV test. This helps you to be responsible and on top of what your healthcare status is. And honestly, this is a really great talking point that you can use with your partner to be on the same page with what it looks like to be sexually responsible to one another. Now, on the other side, we have PEP, which is post-exposure prophylaxis. Now, PEP is a little bit different because this medication can be prescribed to you after you've had a potential exposure. So that potential exposure could be I had sex with someone and I'm not sure what their status is. I had sex with someone that may not have been of consent. I've had sex with someone and I just want to be safe. So this is a medication that is prescribed to you in those instances. It's a really great opportunity to use that again as a tool for education and learning, but also to pay attention to how this can be a preventative space as a birthing person or as a person who may be thinking about family planning, that is an opportunity for you to have this conversation around what does this look like to include this in my family planning options. We see a lot of hyper focus on HIV being a disease that is around homosexual relationships. And we know the statistics actually point to black women are some of the highest newly infected rates of HIV to date. All of these women are not in homosexual relationships. With that being said, using PrEP as a preventative measure is not about your sexuality. It's literally about your relationships and the partnerships that you have. And just as we've been talking about um preconception counseling and the necessities of that, PrEP should be a part of that same conversation. So we've actually been seeing some heterosexual identified women who are open about their use with PrEP. Some of them are that you all may uh recognize is Cardi B and even Tamar, and using this as leverage to talk about their sexual autonomy as well as their ability to be more responsible and adapt to the evolution and what it means to really be, you know, aware of your choices. So instead of just worrying about am I going to be pregnant or not, they're looking at the whole spectrum of health care and health and wellness for their reproductive choices. It's not about just a baby or not. It's about the holistic view of sexual activity and relationships. I love that the two of them are open about this because it shifts the narrative of this is promiscuity or this is anonymous sex to this is responsible. This is being able to be guided by the information and using their platform and who they are as a tool to connect to other people so that they can see themselves in what's going on and being a part of the change that we want to see. Their choices can also impact the way that reproductive health and our conversations with the next generation can be more normalized. So as both of them are also mothers, they're moving into that space of these are conversations I'm gonna have to have with my children soon. As a mom and as a person who understands leading by example, they are modeling the way that moms can now address what HIV looks like from a preventative space and from a safe space. Kids will always be like, well, you won't do that and you don't do that. And yeah, sure, it's a bunch of stuff that you're gonna do that your kids, you don't want them to do, but this is not one of them. We want to open up more conversations and more opportunities for our kids to feel seen and heard. And we also want to welcome them with an opportunity to share what they are experiencing because as much as we can reflect back to, you know, being teenagers and living wild and free and doing things that are a little silly. We also get the opportunity to use the wisdom that we've been able to acquire in our years after being a teen to say, here's what I may have done, but here's how I've also been able to own up and use this as an opportunity to learn. We can always learn and we can always evolve. So shout out to Cardi B and Tamar for shifting the narrative and not letting stigma stop them. So let's really dive into some of the meat and potatoes around HIV data and what it looks like within the black community. As I said before, black women are some of the highest newly infected rates that we see here in the United States. And it really hurts to know that there are more young women who are acquiring this disease, who are not being listened to, who are not being supported, and who also have no idea where to go. So one of the really great things that I've been able to learn in the time that I've been doing this work is how public health and public awareness really can help shape the way that we learn from one another. So one of the campaigns that we love that really understands how do we shift from that stigmatized version of these conversations to open community conversations of support is the Risk to Reason campaign. We were able to work with Black Ladies in Public Health and really see how they talk to women who are both living with HIV and women who are not, and learn from one another and shift the narrative and the language from the risks of acquiring HIV to the reasons we want to be preventative with HIV. It's beautiful for us to see that there's options for us to be, not just preventative, but just more aware. And as I was saying before, you know, black women aren't often given the space to share their experiences or lessons learned as an opportunity to educate other people. Since we know that essentially no one's coming here to save us, but we are here to not just save each other, but to hold each other's hands so we can be a community with each other and share our experiences. And that actually is you know a big part of why Risk to Reason was such a powerful campaign. So one of the things I think is really interesting in the research that we did is to really see how do we actually include the questions around if PrEP is right for me in that space of perinatal health care choices. So if you are a person who wants to prepare for your family, having that on your list of questions for your OBGYN should actually be in your top three. How can I be preventative with acquiring HIV since the risk of acquiring STDs and HIV actually increases during pregnancy? So is PrEP right for me? What kind of things should I look for? How do we introduce this conversation to my partner or partners? We're not going to move this to the wayside as if it's an optional conversation. Again, being tested for HIV is not an option when you become pregnant. So these conversations also should be in the forefront of that care. So why is this important? Why do we really need to keep emphasizing this? You might be a person that's thinking, I don't have any risks. I'm married, my husband's great, we love a good husband. And those things may be absolutely true. And we're not here to cast doubt or change the dynamics of your relationship. We are here to let you know that there are many women who are in those same type of dynamics who find out that that's not the case for them. So this is not a place of accusation, but it's literally how do we both become aware of what our status is, what our choices are, and how this also shapes the dynamics of our family and our relationships. I love how Lynette uses her platform and uses her story as a way to not just share with other people, but really educate her children as well. So her kids are her biggest advocates as well. And they talk to people all the time. When you want to make fun of this or you misinform others about what HIV is or AIDS or anything around that space actually looks like, these are normalized conversations in that household. I use that as an opportunity for us to remember advocacy, and you know, she's an amazing advocate. Advocacy doesn't start at age 18. It doesn't start just at diagnosis or conversion. It starts at awareness. It starts at the moment when we are able to say, I have more to offer besides just the lived experience of this disease. I have the ability to share knowledge firsthand, but I also have the ability to evolve from the knowledge that I've acquired and use that as an opportunity to tell another person, to create prevention from a different angle, to also see how our perspectives shift from judgment to understanding, to compassion, to awareness, even to curiosity. And is that better than saying a risk versus a reason? Maybe. But I think that's also the way that we, we shift what stigma really, really does. Stigma creates secrets. Stigma creates shame. And if as a mom we're able to look at our children and say, you're gonna be a better version of me. You're gonna change the world in ways that I haven't been able to do, we can, we can do that through these kind of open conversations. It may be uncomfortable in the moment, but baby, these kids are facing a world that we haven't even been prepared for. And when we think about even just using this podcast as an opportunity to share information that a lot of people may not be talking about from this lens, this is shifting the way that we are even opening up doors for more conversations with a different demographic of people. When we think about risk, we think about the information that we already have, who we are, what our activities look like, what our relationship status are, as well as the ways that we are intentionally being preventative. But what happens when the providers that you are leaning into for guidance, support, and essential education around these things are not providing you with that information to open up these kinds of conversations because their limited beliefs of who is at risk doesn't match the profile of who you are. So when we see that happen, this actually is discrediting the reason that PrEP is so essential in these conversations. We're not putting people in boxes by saying you look like a risky person, so you should have PrEP. We're all at risk. There are so many entry points for HIV, and we're also learning over these past 30 plus years that HIV has been an official diagnosis, there have been many entry points that a lot of people never thought would have put them at risk, including heterosexual relationships. This is the opportunity for us to shift that narrative and to change our own thought process. I remember being that young nurse 20 something years ago, where I walked in with these assumptions. And it was based on the educational background that I had and the actual documented things around clinical assessment and who were the people who had the highest risk factors. And working in that place gave me such a different insight on not just what questions to ask, but what things are actually underlying. What ways are we actually not humanizing people and the and the ways that they interact with the world and how that actually can create more risk? So instead of making this about what they think they know or what even you think you are exposed to, or how you justify maybe I should take this test or not. Think about this plainly. We are in a society where things are constantly changing, is shifting the way that we can make any autonomous choices. And we never want to be exposed and not be able to have the knowledge that we need to not just be preventative, but also be a part of our own care. So use this as that opportunity to even open a conversation up with your provider. So don't wait for them to say, hey, would you like an HIV test? You tell them, hey, let's do some testing. Include HIV in this panel. Do I have exposure risk? Maybe not traditionally, but I still need to know. I still should know. I still want to know what ways that I can be preventative. I cannot be afraid of what treatment looks like if the result is positive, and how I can use that as an opportunity to share with another mom who may be just as afraid to just take the test. So I hope that this was helpful. I hope that you can understand how all these things connect back to who we are. And we don't have to use just the stories of Cardi B and Tamar, who are courageous and celebrities, and using that as their platform to educate more people. We can learn from people like Lynette, who lived and who is thriving and who is really embracing the diagnosis that she has. And she doesn't look at it as a death sentence. She looks at it as a way of managing a chronic condition and using it as an opportunity to teach her children and others how to be a part of their care and how to have providers who also want to be an integrated part of the care that you have so that you can thrive in your life and not just count the days down. I think this episode was incredibly important because it helps us create the framework for what de-marginalization actually looks like through HIV education, prevention, treatment and care. We are so excited to continue these conversations about momming in the margins as we explore even more angles of exactly what that means. Which of these margins have you or do you still find yourself within as you navigate your motherhood and parenthood? We can't wait to explore that with you. Melinated Mommy Talks the podcast is your place for authentic and raw conversations about what it means to be a Melinated Mom. So make sure to subscribe on all of the platforms where you listen to your favorite podcasts. Make sure to like and share. And if you want to continue seeing our podcast grow, make sure to become a paid subscriber for exclusive bonus content, or become a donating listening supporter. If you're interested in becoming an individual or corporate sponsor of this podcast, go to melinatedmoms.com/ podcast for more information. We can't wait to have you with us in our next episode. So keep listening, stay connected, and stay tapped in.