Phil: Hey, this is Phil aka Corinne.
Alex: And I’m Alex Berg and you’re listening to the I’m From Driftwood Podcast.
Phil: A quick favor to ask our listeners before jumping into today’s episode, take a few seconds to leave a five star rating on the I’m From Driftwood Podcast. More ratings and reviews help our podcasts appear in recommendations, which means more people who need to hear all these and queer and trans stories will be able to find them more easily. It just takes a few seconds and will make a big difference. All right, now on today’s episode. In today’s show, we’re talking about coming out about HIV status.
Tarik: I’m Tarik and I’m from Detroit, Michigan around 12 years ago, maybe 11 back in Atlanta and I was in a long-term relationship. And we went on a business trip in Miami. He worked for a corporation and he was one of the top of his corporation. So they flew us to Miami, Opal Resort. One afternoon in Miami, I walked into the bathroom and he was in the bathroom and it was blood everywhere. He refused to go to the hospital. He was like, “I’m fine.” I’m like, “Clearly, you’re not fine.” But I made him make a promise to me that once we got back home in Atlanta, that he would go to the hospital.
And by the time we got back to Atlanta, I think that next morning, I had told his mom what had happened. He wasn’t necessarily out of the closet but his mother knew about us. That next morning, we went to the hospital and that’s when everything changed. I think I had to go back to work, I was the manager at Rite Aid, and so his mama volunteered to take him, meet them up there actually. And he was like, “Well, the doctor says that I have cancer, I have lymphoma cancer.” He was like, “I have more to tell you.” And I was like, “What?” And he was like I also tested positive for HIV. Well, I think he might’ve even said four upon eight at that time. I was real big on, using condoms and things like that but I still didn’t know. I got tested that day, I came back negative.
We go back to the house and he’s having to take chemo. I had ended up going to changing my work schedule where I can go and take him to chemo in the morning between me and his mom. Me and his mom didn’t really have the best relationship but then other families started coming to the house to check in on him and stuff like that. And I think during that time, he expressed to them who I was as his partner, but they never even knew he was gay. And I remember one Sunday afternoon, his aunts, his great aunts and his aunts coming over to the house and basically told me to my face, “You did this to my nephew. The way you guys would live is what happened to my nephew, this a punishment to him for what you all are doing in his house.”
So I was very pushed out in a lot of ways when his family came and visited. I remember the last time he was rushed to the hospital and he was like, I was laying by, we were sitting by the bedside of his mom, I think she had went outside, and he was like, “I want to come back home. I want to come back home with you tonight.” And literally, he was begging me. And I remember just telling him, “You’re going to come home, you’re eventually going to come home,” giving him some reassurance. And that was the last conversation I had with him. His mom called me and said that he had passed away. So the last words that I had with him was, “I want to come home.” And there was nothing I can do about that.
I did reach out to her like, “I want to be a part of it,” and I was told that it was family business. Get to the funeral and the first, all the pews are field, there was no space for me. So I had to find a space in the back of the church. And so, that feeling stuck with me and when I got back to Atlanta, of course I couldn’t afford the place that we stayed in together. His mother had taken claim of all the items. I literally one afternoon, went and got all my stuff and left everything and I started crashing on one of my good friend’s couch. And that lasted for months because during that time, I just fell into a deep depression, really deep depression. I was drinking, going out, having sex. One night, I was on the phone with my mom and I told her everything. And she told me to come home.
My sister was living in Austin and I had visited before all this happened and I was like, “Well, I don’t want to go back to Detroit but I want to go somewhere new.” So I packed my car and I drove that 12 hour, 13 hour ride to Austin and I moved in with my sister and my nephew. That helped me get back to some idea of who I was. And so I started writing, started doing theater and started doing art and stuff like that, and was living a really good life in Austin. I decided that hey, you haven’t been tested in a long time.
I remember coming in with like, when was the last time you were tested? Just after I took the test and they wanted to talk about my sexual, the fame stuff they talk about, the doctor came in there and I knew it. I knew I was HIV positive. And that was the information that I got. I didn’t really feel no way, I just got numb. I was like, it was my fate. But a lot of me inside of me took me back to Atlanta, it took me back to the day that my partner found out that he was HIV positive, it took me back to that bathroom when I saw the blood, it took me back to the funeral. And so I had all this past phobia in my own mind because of those experiences. So I went on by my life.
I would sit back home, like so-and-so passed away and I would just keep seeing all these RIPs, so people saying they probably died of HIV or I know that they were doing meth while 2019. Why is black 20 and 21 year old or I anybody dying from HIV? Because I was on my medicine. And I’ve started to do more self reflect and work in a community and I realized it was really stigma. So I decided that I wanted to be the visibility for our community, I wanted to be the voice for those who could live with HIV and thrive with HIV. I knew that was going to take work. I knew that I was not there yet. I remember the first session that I had with my therapist when I finally found one and I told him, “I want to come out about my status and I am terrified.”
And we worked together for months. All of 2019, we worked together. I started to do more spiritual practices. I started doing phage, I started calling all my ancestors. I started lighting up incense, I started doing Yoruba practices, different African practices. I called on my great-grandmother. So with therapy and my alter and my ancestors guiding me, I felt like I was ready. I remember being invited to this documentary called THRIVE that was given by a good friend of mine. He produced it but it was with the Kind clinic, a sexual health clinic here in Austin, Texas. The film was beautiful, it talked about different nationalities living with HIV and thriving with HIV. After the film, they had a question and answer session. I don’t know exactly what I said, but I do remember saying that as a person living with HIV in front of everybody in the audience.
And so that was my coming out. That was the first time I had ever said it in a public platform. And I was like hey, let me keep going. I decided to come out on my podcast and talk about it. And I remember titling the podcast, Living with HIV. And right now, it is the most listened episode I ever had. And my family didn’t know. My mother, my close family, but cousins and colleagues, so many people loved on me during that time. And they still do. That was just in 2020. So this was just a year ago that I’ve been trying to use my voice, this is the 10th year since my partner passed away.
So telling a story 10 years from now and see how far I’ve come from the day in that bloody bathroom to being able to lead a peer support group for those living with HIV every week is a beautiful thing. And I feel I’m grateful and I also feel free. And there’s no better feeling than that.
Phil: I was blown away by what this guy went through, to lose a partner in the way that he did, to be sidelined from being able to grieve his partner at the funeral. I was just like wow, how did he deal with all of this?
Alex: Yeah, there are so many layers and just even going back to each moment and just the difficulty of the moment from when he found his partner I think bleeding in the bathroom to learning that his partner was diagnosed with cancer to learning that his partner was HIV positive to then the rejection and isolation from his partner’s family, every single moment, I almost struggled to internalize what that must have meant for him. And for me, I think it really drew out the stigma around both being LGBTQ and then also living with HIV. There’s really something to be said with owning your story and that’s what I was thinking about at the end of this with Tarik, deciding that he wanted to become a voice to create more visibility around living with HIV, to combat that stigma.
And there’s just so much power in that, in taking back your autonomy, in taking back this thing that has been historically so stigmatized, and there’s just also so much power I think, in being visible and outspoken so that then other people don’t necessarily have to go through the same struggle. And I just thought it was a really beautiful way to take your power back from that family that was so rejecting of you to create your own story. And in that way, he has this whole other chapter of what his story is like now. And I could see when he was also talking about when he received his own diagnosis, it also just sounded like he had PTSD from what his partner had gone through. It really brought him back to the expectations around rejection, to just the health struggles his partner had gone through, to all of those really depressing feelings. And so it sounds like through this ownership of his own story and the work that he’s doing now, and it’s really helped him move forward and move on.
Phil: There’s the part in the story where his partner’s family said that they were basically receiving seeing a punishment for being gay, for their lifestyle as they called it. And it was just like wow, these folks have such an idea about HIV that they would make it seem like they were being punished for being gay. I was like wow, it was really… I really don’t know how he made it through that, to be honest with you. And of course he had some PTSD from that experience. And once he himself found out about his status, it makes perfect sense that it would take him right back to those moments and all the negative talk and all of what he experienced with his partner’s family.
Alex: And what you said just reminded me that this was what, 11 years ago, right? We’re not talking about the 1980s when people were first finding out about HIV and this was the attitude. The attitude was that gay people were bringing this upon themselves, that this was a punishment for being gay, et cetera, we’re talking about what, from 2005 to 2010 and I think that it also just goes to show how pervasive and long lasting a lot of the stigma has been when people internalize these ideas about LGBTQ people and HIV.
Phil: And one last thing I want to say about in terms of the stigma, I think the stigma can be such an issue, part of why, thinking about people who won’t get tested because of the stigma. Part of it miseducation because of stigma, all of these things that stigma tends to do that ripples out way beyond what you think it might.
Shareef: My name is Shareef, I’m from Lancaster, Pennsylvania. Growing up, I knew I was different, I knew that people whispered about me. My family would, my uncle would ask me how ballet was, how playing the violin was, but I didn’t play the violin, I played the trumpet, I didn’t do ballet, I did football when I was 13 in middle school. Some of the football team members would always call me gay or sissy but they’d always high-five me when we won a game. Like I was cool when we won a game but outside of football, they would always call me names. And I didn’t really understand. I knew I was different, I didn’t know what it was called but one day walking in the hallway, someone said, “Hey, Shareef, you’re gay.” It hit me and I was like, oh my goodness, I am gay.
I would wrestle with guys and I would be a little bit more into it than the other guys would be, and I realized that gay meant that I liked guys. My mom, when I came out to her said, “There’s Adam and Eve, not Adam and Steve.” And that was basically it. And we didn’t talk about it. I did hear her and my step-father arguing about the fact that I was gay once. She sent me to live with my dad to make me become a man. And when I came out to my father, he was livid, actually he went to a frat brother of his who was a psychologist and took me there and said, “Cure my son.” And the psychologist told him that I am gay and then he asked to accept it. So his version of acceptance was okay, we’re going to take you to the mosque every night, you’re going to learn how to be a man. You’re going to learn how to have will power so that you don’t act on being gay, so you don’t think about men and that’s the way it’s going to be.
And after a couple of months of that, I tried to kill myself. So I took a lot of pills and thank God, I didn’t die. I just woke up and my father was standing over me and he said, “Okay, if you’re going to be gay, I can’t do anything about it. You just can’t be gay in my house.” That’s when I was on the street without my parents. There was a place in Philadelphia called The Attic and they were in the addict of this place that helped run away kids and throw away kids. And I went there every week while I was living with my father and not telling him that I was going to the gay youth group.
And when I was out on my own, they helped me find a place. One of the people there was a college student who was a facilitator at The Attic and he took me in. He had an extra bedroom, it was a house full of college students and he said, “Where are your family now?” After maybe two or three years, my father called out of the blue one day and he said, “You’re my only son and you only have one father, so I can’t change who you are and who you are is who you have to deal with with your dad. But because you’re my son, if you ever need anything, if you’re ever starving, if you’re ever out in the cold, I will take you in. We will not talk about your homosexuality and we should just be in each other’s lives. Maybe on holidays, we would call each other. If we’d see each other, it would be for five minutes.”
I moved to New York and I felt like this is a place I needed to be. This is where I knew that all of the gays went. A couple years after that, I lived with my boyfriend. My appendix burst one night when we were out having dinner and my boyfriend just grabbed me and took me to the hospital and he ended up saving my life. My father came the next day with his wife, he took my boyfriend’s hand and he said, “Thank you for saving my son’s life.” And he sat down in the room. It was the first time in my life since coming out that he actively showed that he loved me, and that the gay thing wasn’t going to stand in the way of his love. His wife however, who loved me and would always call me during the years, wanted to see how far this would go.
I had pictures with me of me and my boyfriend, we just came back from a trip to London. She would show my dad and said, “Look at this, this is your son in love. This is love, this is what it looks like.” And he stood up and he said, “Thank you for saving my son. I love you, Shareef, this is as much as I can handle. I love you and that’s it.” After that, five minutes turned into 10 minutes. We would see each other, it was a little bit more time. He would call a little bit more often. So years went by, we didn’t really see each other a lot and maybe three years without seeing him, maybe talking three times a year for 10 minutes and I found out I was positive.
In the moment, I didn’t really think, I called my parents and I said… at first, I said I had cancer because I didn’t know how to tell them I was positive. They called me a lot more, my dad came up, he took me to dinner and then I told him I was HIV positive. And he cried, he told me that, “You’re my only son, I’m your only father, we only have one life. A week isn’t going to go by without me talking to you.” It was almost like him saying, all this homophobia that I was holding on to is not worth not having my son in my life, because he felt like, I’m about to lose you and I’m not going to take that.
And that kind of love coming from parents who threw me out was unexpected. It was what lifted me out of the depression of, oh my God, I have HIV. It gave me life. So today, I run a business, a non-binary fashion company. I make harnesses, underwear, jumpsuits. My father designs, scarves bags. Interesting, right? The guy who couldn’t accept his gay son does fashion, pretty amazing. We’re working together to start a line of underwear for African-American men. Kente cloth, underwear, boxers. And that’s coming a long way from being a child. My parents are like, “Get out,” to actually not only seeing my father for more than five minutes at a time, but working with him on a business, father and son business. And I see this makes him happy and it makes me feel joy. It’s one thing to go through life without your parents but right now is all that matters, and the fact that they’re in my life has made my life beyond, it’s living my life beyond my wildest dreams.
Phil: It’s nice to see a happy ending to this story. It’s also nice to see his father undergo… Throughout the story, you see his father going through stages, essentially stages where he becomes a little more and more accepting over time. And what really touched me about the story was watching his father decide that he wasn’t going to let his homophobia get in the way of being in his son’s life and having a relationship with his son. It’s nice to see that he got to the place where he could relax, remove off from this homophobia and realize this relationship with his son is way more important.
Alex: Yeah, there are so many aspects of this. I think ultimately, it’s very heartwarming to hear that his dad came around and was able to shut down all the homophobia, but it really took a long time and it took very urgent circumstances in order for his dad to come around and see through his own stigma and his relationship with his son. One of the other things that really struck me here was also just how intrinsically the homophobia, it was also I think tied in some ways to maybe the fear of HIV and that you can’t really divorce one thing from the other sometimes. In so far as Shareef for his entire life really experienced the sense of bullying at the hands of people who were really close to him over his sexual orientation.
And then I’m so glad that his dad came around but it was really only as the situation escalated to the point where he had to lie to his parents about potentially having cancer in order to feel like he could be accepted by them. And to me, I think that speaks to just the deep, deep fear of having to explain it to people of potentially losing your parents, that you would be… I can’t imagine having to do that kind of calculus. I have a great deal of compassion for having to do that kind of calculus to think like I can’t tell my parents that I have HIV, so instead, I’m going to tell them that I have cancer and that just must have been really difficult. And I think it speaks to the reaction he was anticipating.
Phil: Yeah. And also along those lines, it speaks to what some people experience when they find out about their status if they find out they’re positive, it speaks to the isolation that they experience, how it can be very isolating. I can’t imagine getting the status and then not knowing who you can tell and being afraid to tell people, that’s isolating. I can’t imagine what that must be like. That’s when you need support, that’s when you really need community and support right here.
Alex: One of the big things that I am struck by from both of these stories is that right now is the 40th anniversary of the first scientific report about HIV. One of the things that Shareef’s story made me also think about is that in the initial years when HIV emerged in the early 1980s, a lot of the first reports called it gay cancer. So one of the things is a lot of times I think with HIV, is that people talk about the pandemic as though it is over, especially I think from a U.S. perspective, especially in communities that have access to PrEP which can prevent the transmission of HIV, especially when medication allows people to have undetectable levels of the virus.
So I think that there is this inclination oftentimes to talk about the HIV pandemic as though it is over and I think both of these stories to me, they really show you just how pervasive these attitudes still are and that it is far from over, and that we really can’t talk about it like it is a relic of the past that has finished. And certainly, we know for the rest of the globe, it is very much still present and people don’t have access to the kind of medications and resources that we have here in the U.S.
Phil: I agree and along those lines, it’s awesome to know that the recent MTV Video Music Awards, Lil Nas X brought a little shine in a little focus on HIV. And I thought to myself, that’s really great to see somebody, an artist in this day and time still bringing attention to HIV because it’s still a problem and it’s not over. That’s still a thing that’s happening and we’re not having enough conversations about it at all. So I was really happy to hear that he used his platform because he’s pretty hot right now.
Alex: Just always love it, shout outs, Lil Nas X who is breaking down all the barriers at all times.
Phil: All of them.
Alex: All of them. I feel like this is a perfect note to bring our guests into this conversation. To expand on this topic with us, please welcome to I’m From Driftwood, award-winning editor HIV advocate, activist and social entrepreneur, Dimitri Moïse.
Phil: Hi, Dimitri, welcome to the show.
Dimitri: Hey there, it’s so great to be here.
Phil: We want to start off with one of the basic questions we all ask each other these days in the pandemic times, how are you doing?
Dimitri: I am well enough. We are here, who knows what day it is? Who knows what time it is? I feel like this entire, these 18 months, I’ve been such a blur. But no, I’m better now that we’re getting to have this conversation.
Phil: Oh, great. Well, we’re so happy to have you.
Alex: So happy and you know what, I’m lost in space right there with space and time.
Dimitri: I know it’s crazy. I recently got back into rehearsals for something that I was working on before the pandemic. I forgot that we had started working on this in 2020.
Phil: Yeah, that’s a real thing.
Dimitri: Someone in the room was like, “Oh yeah, so when we did this in 2020,” I was like… Anyway.
Alex: For our listeners who are new to you, Dimitri, can you tell us a little bit about who you are and what you do? You talked about going into rehearsals, but tell us a little bit more.
Dimitri: I am a first generation Haitian born American, so my parents immigrated from Haiti in the ’80s. And actually they met here, they didn’t know each other back in Haiti. I went to Catholic school for 13 years, got to love the Roman Catholics, so growing up queer and black and then ultimately, HIV positive was fantastic for the Roman Catholic community now. And in terms of rehearsals, I ended up going to school for musical theater. So I went to university for musical theater, I also went there on an activism scholarship. And so I have this dichotomous life where I’m singing, acting, dancing, pretending I’m a snake and a dog over here, but then I would have these weekly seminars and travel with the other folks who were also scholars in this program.
And so it was really cool because I felt like I got the best of both worlds, which is interesting because now, I’m in that space getting to be an artist as well as an advocate in many different ways. And so I left university and pretty soon after, on the day I graduated from college, I got to make my Broadway debut in a show called Book of Mormon. And so simultaneously with my career as an actor, I’ve always been someone who for lack of a better cliche, I’ve always been someone who’s given back to my communities. It’s part of the reason why I was in the program I was in in the university, is like from the time I was a kid, there was something in me that just always really wanted to serve and work for other communities and I didn’t realize it. And I think part of that was because of the fact that I knew I was different, I knew that there were ways I was being isolated but I couldn’t put my finger on that.
And so I feel like that was part of an outlet to I guess get me into that world of just helping other communities. And so I’m on my track as an actor, but then I was working with organizations like Broadway Services and helping connect Broadway actors to service projects and experiences not just in New York but all over the country. And then that expanded a little bit more into getting to start working more closely with different nonprofits. And so while I’m getting to do this awesome work onstage, my off stage life was really starting to grow and cultivate in the community organizing space.
And it was something that was really important to me and it’s something that I’m super, super passionate about. And that’s really led me here to today where I started a business a couple of five years ago in diversity, equity and inclusion. And it’s bittersweet that it took all of this for people to finally see the value of equity and inclusion in the workplace with your friends, with your… you know what I mean? It’s terrible that it took all this. But I’ve been able to really build my business and helping organizations, even some startups really think about how do you start to embed equity, inclusion, diversity belonging in the DNA of your company and not just something that we slap on and make a cosmetic change and say that we’ve done the work?
So I get to do that, which is a really exciting way to bring all the passions that I have as a community organizer into tangible, tactile weights. Similarly as an advocate, I shared my HIV status a few years ago and since then, I’ve been speaking a lot on behalf of the HIV/AIDS community and it’s been quite a journey because I too literally wrote this down, I was like, the PTSD is real. I went through my own journey and now getting to be in a place where I’m speaking with different organizations, I get to be a spokesperson on a national campaign right now and getting to do things that give me a platform that speak to people who have never seen someone like me, who I don’t look like, not just for folks who are HIV positive but for folks who are black, for folks who are Haitian, queer, and so getting to do the work as an HIV advocate as well has brought me a lot of meaning and has been really healing for me. So that’s I guess in a very big nutshell, what I can share about me.
Alex: You started to talk about your activism as an HIV advocate. So here’s a really big question which I feel like we don’t have enough time for, but we’ll try to get to some of it. What are the major issues affecting people living with HIV today?
Dimitri: I heard a lot of it being said. I think stigma especially in 2021 is so alive and well, and that’s a really huge problem for our community. I would also say that if we continue doing the work that we’re doing, which is not enough, one in two gay or bi-identifying black men will have HIV in their lifetime. That’s 50% of black men. We make up 13% of the total population and yet we are a quarter of the yearly cases and those numbers just don’t add up. So not only is there stigma but there’s even more oppression and intentional ignoring of the black community, peeling that back even more. I think of my friends and my siblings in the trans and non-binary community and I know that something that is really, really important is making sure that we have what we need to satisfy the social determinants of health. That’s another issue that I see in our community, people’s basic needs aren’t being met.
And if I don’t have a roof over my head, I don’t know where my next meal is coming from, I don’t know if I’m thinking about getting medication that I certainly can’t afford. These are things that are a privilege to have and yet are such basic needs that are not met in the black community, especially in the trans community. And I think that is a huge issue. Another issue I think is I think folks think that this is our battle to fight alone, for HIV positive people to fight on our own, and it’s not. It’s everyone’s battle, we need everyone in this fight to help end this epidemic. You can’t expect us to solve this problem alone, it really needs all of us coming together, breaking down the stigma, supporting this community in a way that we can all stand behind. So I think allyship is also something that is desperately needed in the community.
Phil: I could not agree more, and so well said. Post phobia still runs rampant in our culture. In your opinion, what are the most powerful ways to end these stigmas?
Dimitri: Well, I think it’s really amazing to start seeing more representation. So I think that is something that is incredibly important. The campaign that I’m in, people get to see me very often on their television screens and that’s a huge privilege. At the same time, it also shows someone, a person who is living with HIV who is open about their status, and yet they’re thriving in life. They have a supportive family, they have friends who love them. They’re not ostracized by their community, they’re just a person just like you. I think representation is something that is so, so, so important. As an actor, I think about the way HIV is portrayed in television and in film, it is never positive nor not intended. Those stories are meant to be traumatic and they’re meant to perpetuate the stigma that if you get HIV in 2021, your life is over. That’s not the case.
And so I think representation is super important. I also think that because of the HIV phobia, people don’t want to just talk about it. I’m someone who is open about their status, and so that leaves me open to have these conversations. And I’m really willing to do that. And there are folks who are in the community who are open about their status, who are willing to have conversations. I also think it’s important for people to have people who are HIV negative to do their research and have conversations on their own. How many times do you find yourself at a family party or around the water cooler? I can’t think of a better phrase, oh my God! Like who am I?
Phil: A water cooler.
Dimitri: Like what, I don’t-
Phil: [crosstalk] what’s going on?
Dimitri: I don’t know. I just imagined like the castle of the office, like around… So that’s why… I’m sorry.
Phil: I love it.
Dimitri: But really imagine you’re at a function with people who start dogging on people living with HIV for example. Something that I hear often is that people who are HIV positive are dirty and people who are HIV negative are clean. And so imagine hearing that at a party about someone who’s living with HIV and you’ve got a friend who’s HIV positive. And you hear your uncle, your whomever say oh, they’re just dirty people. What are you going to do in that moment? Are you going to let that slide or are you going to speak up and say something and have that conversation? So I think we also need to be willing to go to those difficult places and that doesn’t mean that we need to come in hot and unless you got to come in hot, then you got to come in hot.
Dimitri: But I think we are in a time that is so polarizing. And so I feel like it can be really easy nowadays to feel like you’re being attacked, and I think it can be really easy to also lean into attacking someone who doesn’t think the same as you. And I think how these difficult conversations are more successful is when both sides are willing to go to places that they may not agree on philosophically, but agree on going there together to come to some sort of solution. And that can be anything. It can be like no, I still think they’re dirty and after a few, and then it’s like fine, okay, got it, you are HIV phobic, not changing.
But another solution could be is what if you’re that person who gets through to your uncle and then the next day, they’re like, I thought about it and you’re right, next time, I’m going to be more mindful. That can also happen but we have to be willing to speak up and be willing to let ourselves allow both sides to get to a place together. But you have to be willing to go there if you are someone who says they’re committed to ending this epidemic. You can’t cherry pick how you fight for these communities. If you’re in it with us, if you’re an ally, if you are here to end this epidemic, then you got to be 100. You can’t let things like that slide. And it happens so often.
Alex: As you were talking, you brought up a few of the misconceptions that exist around people living with HIV and just how it seems like so much of the stigma is reliant on these misconceptions. So what are some of the biggest misconceptions out there?
Dimitri: One really big misconception which is wild, that this is a misconception in 2021. But there are still a lot of people who think that they can’t be in a room, even being in a room with someone living with HIV. There was a study that was done back in 2019 that showed that half of all Americans say they don’t know enough about HIV. And a big percentage of those folks lived in the millennial and Gen X range. And there were just about a quarter of millennials who are surveyed who said they would not be in the same room with someone living with HIV.
On the professional side, I even know of certain things that have happened to friends of mine living with HIV, where they were not informed that this thing was happening on set. Meanwhile, the rest of everyone else on set is getting a form asking for their consent of being around someone living with HIV. This is in 2020. You would think that we’re so past that, but there are still so many people who think that they can’t be around someone living with HIV, that there are even people in my family who will not share things or like if I touch something, they won’t touch that thing. And that’s a huge, huge, huge, huge misconception.
I think another big misconception is that anyone who is living with HIV will pass on the virus to another, and many people don’t know what the term undetectable means. And so they may see someone who is undetectable and still think that they are able to pass on HIV to another person. And when someone is undetectable, that means that the viral load of their HIV is so, so, so, so, so low, fewer than 25 copies, it can’t be detected on a lab test. And therefore someone who is undetectable cannot pass on HIV. I have certainly been in experiences where even though I was undetectable, it was still a problem. And I think that a past version of me who is not as secure in himself as they were back then, I would probably let that fly and sit in that trauma and just let that fly, not today. And so that’s another huge misconception.
Phil: Is there anything in regards to HIV and in your advocacy around it that you’re just tired of explaining to people? Like you’re just so sick of?
Dimitri: Oh, my God!
Phil: I bet you have a couple of those.
Dimitri: That’s hysterical. Honestly, one of the things that I… it’s just like, oh my God, is that people… and this is a misconception. People still think in a way that this is the gay disease. They think this only happens in one community of people. And so I constantly have to be like HIV doesn’t discriminate, anyone can get HIV. And that has to just be a constant thing that is said similarly to like, if you’re not HIV positive, just be an ally and do the work and stop asking me like, how do I do the work? It’s like, you know how to do the work. You can start by doing your research and then come to me with questions. You know what I mean?
Alex: Stop asking questions for which their answers on oh, I don’t know, Google?
Alex: How about that?
Dimitri: Literally in the dropdown, Google. Like when you Google it and then it gives you like the five possible things, you’ll definitely find it there, promise. They make it so easy for you. So the not doing research thing or something that I really don’t like that has happened to me, and this was when I was speaking to a class of medical students. One of the questions was, is there anything you think you could have done differently to not get HIV? A medical student, and I had to really check them, but in a very respectful way, but I was like, I just really have to check you because you’re actually a medical student. So that cannot fly, you can never ask that again, ever.
Phil: I get that. And I think I’m going to give you props for probably not losing your mind on them and keeping it…
Dimitri: I ended up doing this like very long social media posts. So I like [crosstalk] Instagram.
Phil: Instagram, okay. And I can’t blame you, Instagram’s looks was the place where it ran, there’s nothing wrong with that. I want to talk about PrEp with you. And for some of our listeners who are new to PrEp, it stands for pre-exposure prophylaxis. And I know it was approved by the FDA in 2012, but tell us about what it is. So for people who don’t know, can you just break down what it is and just explain how it works and what it is?
Dimitri: Sure. As you said, this is a prophylaxis. What that means in not scientist terms is that you take one pill a day and that pill reduces your risk of acquiring HIV by 99.99%. And as long as you take that prophylaxis, take your PrEp every single day, that risk will stay as low as 99.99%, effectively meaning you will not acquire the virus from someone who may, in fact you may be exposed to, who has a detectable viral load. So it’s a really, really important and groundbreaking drug that has finally been approved.
Alex: I know that there are women living with HIV now who are also really fighting for access to PrEp and I always just think about, I think there was this one ACT UP poster said, women don’t get HIV, they just die from it. And I constantly think about that.
Dimitri: Listen, there was a Cosmopolitan cover. Was it Cosmo? Yeah, yeah, yeah, it was Cosmo in the ’80s. And the cover was literally, women don’t get AIDS. It was wild. And obviously Cosmo was huge in the ’80s, and so that just to your point, catapulted that stigma into pop culture.
Alex: Also, how harmful, like how many people did that impact? Through that thinking, how many people decided not to get the care that maybe they needed because of such false information? But it brings me to how you’ve been working with Walgreens to help break down the barriers to accessing PrEp. Could you explain the barriers that a number of different individuals face trying to get PrEp and why it should be available to more people?
Dimitri: Ooh, this is a whole nother podcast episode, okay?
Alex: We’ll have you on for Take Two, but just give us a little teaser for now.
Dimitri: And this is like whiskey, your liquor of… no, we love America. The biggest overarching thing, there’s so many things. The biggest overarching thing is access to proper healthcare. And again, satisfying folks to social determinants of health. So without access to the proper healthcare, I can’t even get access to the medication that I need. So I believe in making healthcare available to everyone who needs it. And so I think that that is something that really needs to change and is a major barrier because I think of my medication and if I didn’t have the insurance I had, 4,000 a month, the price tag, who can afford that? And for PrEp, it’s 1,200 a month. Who can afford that? You know what I mean? And if I don’t have healthcare, if I don’t have a way of accessing this drug for not $1,200, I’m not even going to bother.
Dimitri: Additionally, these medications are even stigmatized within insurance companies. And so speaking from my own lived experience, now that it’s been years, I get my medication and there are no issues. But in the beginning, it was really, really difficult even with my insurance to get my hands on the life saving medication that I needed, because I had to go through all these barriers, my doctor had to do this, we had to call and do that and had to come to the Pharmac, there were all these things that needed to happen just for me to get life saving medication. And the response is, we need to ensure that this is going to save, this is life saving medication that you need. And so we’re going to go through all this red tape, make you sweat. And I’m speaking from a privileged place. I can’t even imagine what it’s like outside of New York with folks who don’t have the healthcare that will get them this medication. That’s a huge, huge, huge barrier.
Unfortunately, stigma is another barrier too, because people then won’t even want to access this medication that may be available to them if they need it. Not to plug Walgreens, but Walgreens is now starting to expand access to this medication and they’re offering PrEp for free in locations across the country. And so, that will really depend on the states that you’re in unfortunately. Like we’re seeing so many attacks on our communities, but Walgreens across the country will be offering free PrEp. And so I would recommend again not to plug, but if you’re listening and you need access and you do have a Walgreens near you, you can call your local Walgreens and find out.
Walgreens honestly also has a lot of mental health resources and they’ve got staff on site who are able to help folks who want to remain anonymous which is another barrier. So I think there are structural stigmas, there are social stigmas, there are personal stigmas and those are all huge, huge, huge barriers for the community.
Phil: Indeed, and thank you for all that information about Walgreens because now, I’ll definitely be thinking about subscription when I need to go.
Dimitri: Part of me is like, I don’t want to give a free plug but they pay, so it’s fine.
Phil: Well, good. They should be paying you for your time and your-
Dimitri: I can plug them.
Phil: … and your expertise, and that’s what they’re doing is pretty great. And I hope CVS and the other, Rite Aid and everyone else is listening because… yeah.
Dimitri: It’s a big part of why I agreed to go into this partnership honestly with them. I was very clear and being like, I want to see the work that you’re doing before I say yes to this thing.
Phil: Yes, hold on to the fire, exactly.
Dimitri: And that’s what you got to do. And they’re doing the work.
Phil: Well, good on you for using your platform to make something like that happen. That’s awesome, that’s a fantastic and excellent use of your platform which is incredible. I want to talk about your career a bit because you have a pretty impressive career. You’ve done a lot. You’re heading a DEI consulting organization, it’s called SPL, right?
Phil: You’ve been featured in Forbes Magazine, Teen Vogue, Them, you had a little stint of Good Morning America, I saw that. You’ve done a lot and you’ve done a ton of a podcast, but what are you most proud of to date?
Dimitri: Ooh, wow. One of the things that I worked on was a magazine, it was a national print digital magazine, it’s called Chill Magazine. It was just around for a year but it was a part of Pride Media which is the advocate magazine, HIV plus Out magazine and Chill was the first magazine that was specifically designed for millennial men of color and millennial men of color of all types. So it wasn’t gearing to the typically toxic masculine black man. It was for black men of all types. And it was so cool, I was founding editor and managing editor and we won a few awards after our first year. And it was really, really cool to see that I was a part of something that gave this company their first taste of what it means to really be diverse. You know what it really means to serve other communities and it was a really successful magazine, I hope they bring it back.
Alex: Dimitri, looking forward as we wind down, are there any projects or things our listeners should look forward to coming from you?
Dimitri: Well, I have some more Walgreens stuff coming, so follow me on Instagram @dimitrimoise official to that plug and you’ll be able to find all of the stuff that I’m doing and all the stuff that I’ve done and the future information that I’ll be giving out and sharing. On the actor front, I’m currently… So I’m back in rehearsals for a show that I was working on before the pandemic, it’s a new musical at the Public Theater called The Visitor and it’s based off of a film that was released a number of years ago. It’s an amazing story about two folks who are undocumented and have a really interesting experience with an older white person who forms a relationship with them. And so I think that it’s going to be a really timely show and come see us. So in New York City at the Public Theater, we’re playing from October to December. So if you go to the Publictheater.org/ Google the public theater, you’ll find out there.
Phil: That’s awesome, I’m going to have to check that out. Any other places we can find you online? I know you shared your Instagram, but are you in any other platforms that we should know about? Your website?
Dimitri: It’s weird. I’m a social media influencer, which is awful to… it’s weird to say, but also I’m a grandpa. So I’m not on TikTok, I am not on Twitter, I don’t use Facebook anymore. You can find me on LinkedIn, child, or you can go to Dimitrimoise.com, but really it’s just Instagram. It’s amazing but I think for me, I’m like one platform is great.
Phil: I cannot blame you for that, we totally get it. It was so and nice having you on today, Dimitri. It was such a great conversation.
Alex: Thank you so much for joining us.
Dimitri: Thank you so much for having me, this was awesome.
Phil: The I’m From Driftwood Podcast is hosted by Phil aka Corinne.
Alex: And Alex Berg, and is produced by Anddy Egan-Thorpe. It’s recorded as a program of I’m From Driftwood, the LBTQAI plus story archive.
Phil: Its mission is to send a lifesaving message to queer and trans people everywhere. You are not alone.
Alex: I’m From Driftwood’s founder and executive director is Nathan Manske. It’s program director is Damien Mittlefehldt.
Phil: Our score is provided by Elevate Audio.
Alex: The stories you heard today are available in their entirety plus thousands more at ImFromDriftwood.org.
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Phil: This program is supported in part by public funds from the New York City Department of Cultural Affairs.
Alex: In partnership with the City Council.
Phil: Additional funding is provided by the Humanities New York SHARP grant with support from the National Endowment for the Humanities and the federal American Rescue Plan Act.
Alex: For listening, you all.