Chapters Transcript Video Empower to Test Empower to TestOriginally Broadcast: Monday, June 283:00 PM - 4:00 PM ET okay. Mhm. Yeah. Mhm. Mhm. Mhm. Mhm. Yeah. Yeah. Mhm. Mhm. Yeah, mm. Yeah. Mhm. Mhm, mm hmm. Okay. Mhm, mm hmm. Yeah. Okay. Mhm. Yeah. Yeah. Yeah. Mhm. Yeah. Mhm. Mhm. Mhm. Yeah. Mhm. Mhm. Mhm. Okay. Yeah. Okay. Hi, I'd like to welcome everyone to today's program. Empowered to test awareness is strength in this program. There will be a series of conversations that touch on issues related to normalizing HIV status, awareness, educating individuals about the importance of HIV testing and de stigmatizing HIV testing. My name is Christopher Chance Watson and I am an associate director at HIV marketing at Gilead scientists and on behalf of our employees worldwide, we are proud to be sponsoring this program today. Gilead recognizes how important it is to support testing efforts to help people become more aware of their HIV status and to address stigma surrounding HIV. The first half of today's program will feature a panel conversation moderated by Karamo Karama is an Emmy nominated host and culture expert of netflix hit series, Queer eye and is known for making over the hearts and minds of the show's heroes, drawing from experience working in social services. He is lauded for the ease and natural comfort relating to and advising different types of people. He is the co founder of skincare brand, Mental empowering ball thing, people worldwide, best selling author of Children's books. I am perfectly designed and memoir, Karamo my story of embracing purpose, healing and hope. The father of two and recipient of HRC? S visibility award, assist congress in legislation, empowering L G B T Q individuals, youth and its allies and is a frequent collaborator with President Obama's nonprofit, My brother's keeper. The second half of our program will be moderated by Bishop Oc Island. To third Bishop Oc Allen the third is a senior pastor and founder at the Vision Cathedral in Atlanta Georgia, a religious Trailblazer, author, human rights advocate, international and community leader, as well as an entrepreneur. Bishop Allen has served on the presidential advisory council of HIV and AIDS under President Obama and is currently a national ambassador and consultant for the N A A C. P Black Church in HIV Initiative. We are very delighted and grateful for the participation of both out moderators for today and they will be joined by a panel of leaders within the HIV community. This panel discussion will conclude with participation from you and our audience by clicking below and submitting your questions throughout our programming to be a part of our Q and a session later. Now I'm excited to introduce our panelists, Darien Banisters, a regional manager for capacity building and community engagement at Emory University in Atlanta. Darien has developed his passion for HIV prevention and advocacy at Nashville cares, which is a local AIDS service organization located in Nashville Tennessee, where he supports programs and supported programs that we're addressing health disparities among communities of color variants, expertise includes health education of minorities, program development, health communication and strategic partnerships. Next we have on your coat. Ronnie is the president and Ceo of the Black AIDS Institute, located in Los Angeles. Rania, previously managed B. I programs including the Black treatment advocates Network and the African American HIV University and she was recently named one of the most influential african americans by the route 100. Next we have Orlando Harris, who is an assistant professor at the University of California at san Francisco Dr Harris. His research includes addressing the intersections of culture, race, class, sexual orientation, hegemonic masculinity and gender and sexuality based violence. He's also interested in how structural and environmental factors inhibit or promote engagement in HIV care as well as prevention programs. It last but never least is Maria roman taylor said, who is the vice president and chief operating officer at Trans Trans Latin Coalition in Los Angeles, a prominent transgender rights advocate and actress. Maria has been a leader in social services for the transgender community in Los Angeles for over 20 years. She has served four years as the Los Angeles County HIV Commissioner and is a member of the L. A. Transgender advisory board on the L. A. Human Relations Commission. As you can see, our experts today will really give us the conversation that we need to begin to really think about how do we position testing as the entry point to care. Now, I would like to begin this program really briefly highlighting the image that you see here on the screen, which is the status neutral approach to HIV care that will serve as the framework for our discussion. As you see here, testing is the entry point to the status neutral HIV care continuum and this continuum outlines the stages that people living with HIV. Are those vulnerable to HIV may go through to reduce the risk of HIV transmission or acquisition. It is status neutral because it shows that the steps along the care continuum are similar for both those living with HIV or vulnerable for HIV, but it helps us emphasize the importance that testing has and helping engage retain and keep people in the support services that they need to have their health regardless of their HIV status. Now, without further ado, let's have some great discussions. It is with pleasure that I will turn over our first panel which is shining a light on the importance of testing. And we welcome to the stage cuomo thank you so much fancy, I really appreciate that. So I want to get this started really quickly because I'm so excited to hear what you have to say Maria. I want to start with you if that's fine. I want to know what are the potential benefits of knowing one's HIV status I think um it's critical, right? Testing is like it's been mentioned as a first step in in making sure that you know your status. So that way you keep yourself safe, you keep the people that you're uh romantically well with safe and also keep the community safe. Um but I also think it's important that HIV testing is tied to support its services. That there is a link between the first um encounter of testing specifically when we talk about the trans population because many folks are are dealing with ongoing challenges. Um and it's not just about testing, testing has to be linked with other supportive services that that address all the social determinants of health. I think the trans community has been saturated with HIV messaging and we need to look beyond um what has been traditional HIV prevention methods for the last 20 years and have innovation that addresses all these social determinants have felt that many communities are facing um once they've been tested, um you better preach? Okay, I was like, over here now and I'm like, yes, yes, yeah, but I want to go back to the testing a little bit. I agree with what you're saying, I want to offer you what, why is it important to make sure that the community you serve is tested for HIV. You know, it's critical for people to be aware of their status so they can live healthier longer lives, I think. Um you know, it's the first step in, in this is the stigmatizing HIV that people have access to get a test um are connected to services, whether they test negative or they test positive. It's kind of the critical point and when we look at providing access to the community and if you think of the trans community, most of the social services that we have access to have been through this lens of HIV prevention. Um so again, I hope that through discussions like this, folks will get tested not only for themselves, but how that plays a role in the entire community. Well you just said something that is very important, dairy and I want to bring this over to you because I've heard people say, well I don't know why I should get tested, I don't really know what would you say to them of why it's important for them to get tested. You know, I'm I'm agreeing with my colleague Maria. It's it's the very first step. You need to know whether you whether if it's negative, okay? We know how to continue to prevent, say whether that's prep, whether that's kind of negotiation or it's a if the test is positive, then we have supportive services. There are communities, there are people that are here for you that it's not a death sentence. Knowing knowing your status just means that, you know, you're prepared. You know what you can do for precautions and it means that you're not only that you love others, but you love yourself. First, it's about yourself. First to know this is my status, whether or not it's positive. Whether or not it's negative. Whether or not, you know, you're you're just not ready to hear your results that day. It that you value yourself enough and you take care of you, Listen, you better preach on that. And my next question is sort of, kind of already addressed. But how can someone who gets tested? I feel empowered by knowing their status and also knowing that there's, you know, their whole sexual health is going to how can they feel empowered by that? You know, every time someone gets, um, gets their test, they should be empowered by knowing their status knowing knowing something more about me. You know, I don't know about you. But, you know, every time I take, like, a test, even if it's something like a disc test or even one of those, like, facebook personality says, always feeling power. Like, okay, I know something about me like this, this is me, you're right, this is so me. Like, every time I just learned more and more about myself, that includes my sexual health, that includes, you know, my status that includes um you know, say if it's it's your blood pressure saying that you went and got tested to find out, okay, your cholesterol, okay, it's back to normal. Like that should make you feel good because you know what's going on with you. You don't want to be just told by someone. Well this is what we think is going on. You should be able to know and feel, you know what I think there's something wrong and being in touch with your body like one of basic, you know, anatomy one on one of you will Yeah, I love it Maria. How will we, what would you say to someone who has that fear of getting tested? What would you say to the gym curves and like don't have this fear? I think you first have to acknowledge Why people have the fear, right? I think that there's still so much stigma attached to HIV, even though I've been in the HIV field for over 20 years, I think getting that diagnosis that you're positive for many folks comes with with a heavy weight and it's about having those discussions of how this could be the first step in making sure that you're healthy, that you have access to treatment. Um, and it's through those conversations that we start normalizing testing, normalizing, getting a HIV positive test because there is life after that diagnosis. There could be a full line at the diagnosis and we continue to see that through the example of the long survivors of HIV. Um so it's about that dialogue and having those conversations, but you have to first acknowledge that it is for many people are heavy thing to to get Yeah, Darren. I want to ask you the same question. What would you say? Somebody who has this year? You know, your fear is not natural, you know, first thing acknowledging that fear is natural. I get it. I've been there myself, my first HIV test, I was scared out of my mind and I've been there. You're not alone. There are so many people that are here. Look at the amount of people that are here on the stage that are in the room that we care. There is a whole another community out there saying that fear. It's one thing to be fear. But don't live in fear, don't stay there. You can get over your fear and we'll go with you. There's there's just so much out here, so many people that like Maria's that are living and thriving, full of normal lives, you can still get married, you can have Children, you can go to school, you can start a business like you can do anything that you want to just because you may be a person living with HIV does not stop anything. That just means you have the whole another family that's here to support you and want to hug you and we want to love on you that it doesn't stop here. Life legit begins again. If you will, you better work like begins again. Uh Maria, I want to know what is the appropriate role of self care and conversation by HIV awareness and knowing what that is. You know, it's a challenging conversation, right? Because the truth is that you know, I work on the ground if you will, you know with community that sometimes don't have access to just the basic things and self care probably is the last thing on their list, but I think HIV testing is the routine should be part of a routine uh medical screening where people that go to get, you know, diabetes test, get an HIV test where everybody and that's how you really um they can say that take the stigma away from from getting uh tested. Um Yes, so it's an ongoing conversations that has to continue to have agreed Darren. I want no for you. How do you define a status neutral approach to HIV care? Oh, that is a very good question. You know, when when I think about status neutral HIV care, I just think about kind of how I operate within this space. You know, we everything that I do is not determined whether whether my status is positive or negative. It's been loving people. It's based on supporting people, supporting my supporting my other same general level men of color out there. You know, it's literally taking taking a step back because there's some we hear so much about HIV this HIV, this, you know, this is happening. We see so many ads, we see so many billboards that it can be overload at times, which I get it. So, taking another approach by taking, you know, let's talk about you as a person. What are some concerns that you have about your about your health period? What if it is hypertension? Whether if it is, you know, you're worried about, you know, some mental health, depression, X, Y, and Z. What? What does that come? Where does this come from? And then also getting to the point we're going to get back to what about your sexual health? Have you been only tested for HIV? But the other stds that are circling back on the rise lately, you know, you take an approach from the person. It's not always about these numbers, we know that okay, we have to hit this go. We have to get this many numbers. We need to test this many people, but it's about the person and once you, once you really reach that person, that person that that's filter, love, that's culture, touch and belcher, um, sense of acknowledgement. They can then become an advocate for themselves in their community. And they're going to bring more of their people, more of their circle, to know, to learn more, to get more educated, to bring more awareness to their own communities. So you address and this is for both of you. So why is this an important step in ending the HIV epidemic Maria? You can go first and then there, I mean, I think we've touched that is the first step in both. Um, keeping oneself and the community around us say spreading the, lowering the spread of HIV is critical testing is the first step to knowing one status. I do think that programming around the, uh, around the country should be incentivized. People should also be given incentives to get tested. You know, we all like to get, you know, the 10% discount the coupon. People should be incentivized to go and get a test besides obviously, um, knowing um, where you're at personally. Yeah, area I would agree. And you know something else summary you touched on earlier talking about It should be routine. Like every time you go to the every time, if you're getting a check up, you got a code, you have a headache, whatever it is, you should be offered an STD and HIV test, you should be offered both if you're having sex, you should be, you should be given a test like you know, it shouldn't be one of those abnormal things like oh you're asking for an HIV test. That should be just one of those. Okay, we're going to give your HIV test, we're gonna check your blood pressure. We're gonna do we're gonna do away, we're gonna do your height. Like this should be normal. This is the beginning of this is the beginning. This is how we start to de stigmatize things by having conversations like this. But you know with our medical providers making sure that they know that this should be, this is normal. This is just next check. This is just an additional check on next check board on. Let's see. Your heart rate is good and keep it moving. Yes, I'm living. So my final question. Excuse me. My final question, Sorry something my throat here for both of you apologize is we all know faith and spirituality plays a role for many people, either good or bad. But how do you feel like that could impact the conversation of individuals feeling empowered about getting tested and knowing their HIV status. Very analytical, first name Maria? Well, you know, I'm glad you asked because you know, I, I am a devout christian, I was born and I was raised free will baptist if you would, you know anything about that were almost coaching. So you know, we, we believe the bible, but you know where I go to the faith based community because even in my own church, I was able to uh, bring HIV awareness back to our community where we host HIV testing at least once a month. Well that was Bc before a cover We did, but going back into the building, we're doing more of that and you know, you know, I do start with like a christian thing, right? You know, God, he will send you comforters, right? He was, he will send you there. He wouldn't make the actors, he wouldn't make treatment, he wouldn't create all these people that you see here that are that are providers in our, in our various roles. If he didn't want us to get help, if he didn't want something, if he didn't want to save us, if he didn't want to see us to the promised land, you know, so coming from my faith, being born and raised in the church, Godparents of pastors and all of that, just bring it back home. Well, you know what he wouldn't have done, he wouldn't have given us this if there wasn't a cure, if there wasn't something to it, if there wasn't something that we can do that we can get to. And we're working towards a cure, we already got prepped and now we're working towards a cure. We're working towards a vaccine. Like these are things in the making and God wouldn't have brought us here if we weren't supposed to get any further. Okay, Maria, what about you? Yeah, I do, I do agree. I think that, you know, we all believe in something, right? We have something bigger than us. And I think that as we continue to um, create programming to serve the communities that are most the fact that um by HIV aids, we need to start implementing some of these holistic practices, some of the spiritual practices and let people sort of come with because that's part of people, also their faith. Um, so I think it's a critical component that is missing in many of the practices that we see today. Um, whoever that higher power is for folks that should be part of the dialogue uh, and programming. Listen, I just want to say I'm inspired by you both. I'm thankful you both and I'm so glad that you all are doing this work and inspiring us, teaching us. Thank you so much. Uh, that's it for me. That's it for us. I want to send it over chauncey. Thank you Karamo and Maria area. Um, we're really looking forward to continuing this conversation. So next it is with a delight pleasure that I welcome to the stage Bishop o. C. Allen the third. And in this conversation we will really focus on the systemic challenges that people face as we are trying to enter into the care continuum Bishop is to HIV testing and communities most impacted by HIV. You know, there's first, I think the stigma of HIV that still is so pervasive within communities of color, because when we're talking about communities are most impacted, we're talking about people who are most marginalized, We're talking about people of color, were talking about trans communities, we're talking about same gender loving people. Um we're talking about people who are homeless people have been previously incarcerated. Um and there's a stigma that still persists around HIV around who gets it, how people get it, why they should or shouldn't have it. Um that is very much linked to many times whiteness, right? That anything that is outside of this kind of like, you know, what we think is uh you know, american, um what we think is um the right way. Um there's stigma stigma around that. And so I think the stigma of HIV is still a huge barrier because people don't want to have that burden, understand, they don't want to, you know, bear whatever the results of that HIV test are, we also know the prioritization of HIV for many people is a challenge, right? So HIV, you know, if you don't have a place to live, if you don't have money for food, if you are working, uh, if you're concerned around, you know, going back to jail or being in jail or you know, whatever it is, all these different priorities that we know for communities of color community that are most impacted by HIV that is usually about the day to day survival. Um, and that HIV doesn't come in the radar because they're fighting, we're fighting so many different battles. Um, and I think one of the last kind of thing that I would say is a huge barrier when it comes to HIV testing is going places that are supportive and culturally, you know, affirming, you know, if you go inside of an HIV testing center and um, they are mis gender in you, you know, that doesn't feel good and you are going to want to come back there, you don't want to get tested there. If you go someplace where they are going to tell your cousin down the block there. So, and so came in for HIV testing, you don't feel safe. Um, and so finding spaces that can do HIV testing that affirm us as individuals, as human beings. Um, it's still a barrier for too many communities of color that are most impacted by HIV. That is so excellent. Can you, can you unpack that a little bit more as it relates to this reluctance? And you talk about people? Uh, just as you know, the simple illustration of people and sitting in a clinic are going to the clinic or the things that just really create the nuanced reluctance that people have as it relates to getting testing. Can you impact that a little more? Yeah, I mean I think it starts for many people, you know, as soon as they walk in the door, right? And how is the front desk person? Um It may come when you get inside of the room and the nurses taking your assessment. Um It may happen when the doctor comes in um and says, oh you don't need an HIV test because you're not gay or you um you know, we should be doing X. Y. Z. And it's not talking to the client and the patient about why an HIV test might be important. One of the other things, how is this an entry point into HIV services overall and making sure that you're taking care of yourself? And so I think that there's too many times that entry point where people go into the clinic and the different experiences they have are really dehumanizing and aren't educating folks and empowering people to respond to uh taking a, taking HIV testing and then the pathway that comes after that. That's awesome. Yeah. Yeah. Yeah. So Orlando, can you, can you talk about how care providers can help address the fear that that Rayna is talking about the reluctance uh and the uncertainty that people may have about HIV that prevents them from getting tested. Thank you for that question. I think I want to back up for a bit and just kind of lay on layer what Iranian just mentioned and I think a big part of that in terms of even as a health care provider myself, I am sometimes also a patient and I too have to interface with uh with the health care system. And so you know I always um um some of professor of nursing and medicine and so I lecture on these topics of my students and I always tell them the story and I'll share this here too as well. Whenever I go see a new provider or if it's a referral, I put the basic minimum on the intake form. And so when I sit and have conversations with them and I just observe the interaction and oftentimes these folks are none folks of color and uh you felt a bit of condescending remarks um talking down to um and so I will respond and I'll respond in a way that shows my knowledge base and then the physician will look at me and say, oh, so what do you do for a living? Um And then my response is I'm a malpractice attorney and face change all sorts of red, all shades of color. And then I'll pause after their mortified and I'll say, you know, I did that for a specific reason because if there was another brother sitting here in this chair who didn't have the knowledge that I have and who um didn't know how to advocate for themselves the way I do. Um I would hate for them to come and see you and let me explain what I meant by that. And I'll explain it and I'll give them an opportunity. And oftentimes they apologized and said, you know, I appreciate the feedback and you know, I'll do better. And I think, you know, I tend to do that as sort of like a passive intervention, as a health care professional to another health care professional. But I wanted to go back to your to your point. I think oftentimes when we think about HIV testing and I want us to move away from and I think Ronnie and did a great job of setting that up in terms of it is to individually focused on the individual to seek testing to go in and and sit there wait 20 minutes or to have a conversation with a medical provider. But what we don't talk about the structural issues. Yeah. And as a researcher myself who have conversations with with a black gay man and with other men of color when I approached them because of the priorities of NIH in terms of um researchers, researchers who get funded to do HIV research, it has to be HIV focused. And so when I go and talk to brothers, they're like, dude, I wanna talk about HIV, can I talk about my housing issues? Can I talk about my lack of insurance issues? You know, can I, can we talk about a job or something else? So, you know, why is it that we're always talking about HIV? And I'll just say that the testing piece comes up there too as well. You know, there's, there's um, they call it sort of like a four pattern of HIV tested and that's regular testing. Testing depend on your relationship or their sexual behavior. The test and pattern. The other one is tests and avoidance and all of that is on the individual, but we're not talking about is a provider who once said to me, why do you, why do you need this? You don't strike me as the type that randomly goes to the bar and pick up someone on the weekends. That's not an individual issue. That's a systemic issue. That's that's that's powerful. That that's powerful is it's something that um in the last panel discussion that I want to raise, obviously I'm a faith leader, I am a man of faith. And while I am an inclusive faith leader, I know that when we talk about particularly uh faith for people of color, uh black faith, the black church or maybe even the mosque and temple, uh particularly uh faith spaces for brown people, uh latin X folk. Um it's complicated, you know, uh it's really complicated. I want to dive right into this because of course I am faster and I I wanna ask both of you and starting with the Orlando, um you know, how can we get leaders of faith communities to help support opportunities to promote awareness around HIV, when you talk about structural issues, I think religion could be on that list. Right. And I am a practitioner. Uh but I I would like to ask that you all unpack this idea of how can faith leaders, what are the opportunities for us and what are the challenges? I think, you know, we can't talk about opportunities and not talk about challenges. So I appreciate that question about, I will say that, I think sometimes, and you know, a lot of, a lot has been written in the literature around the black church and HIV and especially with sexuality, but I will say oftentimes the black chair sometimes gets a bad rap in terms of that perspective, and I'll give an example. I was recently a few months ago, I was asked to actually um uh come and do a talk to a church here in the bay via Zoom and it's predominantly black, hi educated, um, uh, the congregation. And so I wrestled with the idea of going to do this talk um, you know, this church because again, knowing and thinking about the resistance and often times I don't say this, we get so used to this narrative around the black church and its resistance and so and so forth that if you don't go and sit with folks and talk to people, you realize that it's a faulty narrative at times, that resistance is not always there. And so with this one I taught rested with the idea of going to give this gift this talk. And I had a conversation with the pastor and he said, brother, I want you to show up as you are and I want you to come and give us to talk to these people around black queer theology and health. And uh blew my mind. So I put this lecture together. I went there and I deliver this uh, top via zoom with well over 200 plus people who showed up in this conference for this conversation. And I remember saying, you know guys, I'm sorry, I have to go because I'm going to go look at a place that I'm buying. So can I leave now please? Because they wouldn't let me leave. They just wouldn't let me leave a lot of questions folks who are talking about so this, you know, this faulty narrative and how we can leverage the church and use the church to help communities, especially our black communities and so on. And I was actually surprised at that. And you know, I got the opportunity to be invited again to come and do another talk. And I appreciate that experience partly because it made me realize that within our community we have this massive source of strength and support and if we need to push to get folks tested and so and enter care, we need to partner with this massive power source and leverage their uh, their uh infrastructure. Be able to do that. Yes. Ron you, can you talk about how we do that and face particularly? Yeah, no, I think there's a lot of ways and you know, Bishop Alain, when I saw that you're moderating as I was like, oh yes, this is the example, right? This is the example of how, how we do that. And you know, I think that there's some great lessons that we've learned and I think Orlando is completely right that there is a will, there is a will amongst black faith institutions to move the needle because I think at the core of it, um, faith and the faith institutions, churches and mosques, they are here to support their people right? And to love their people and be a refuge for them. And I think at the core of it, that's what most folks want. And so there's a couple things that we've learned, right? And so having folks like bishop allen a mentor and work with other bishops and other faith leaders because really some of that kind of theology and conversation happens internally, right? Um, that's not something for me, Rania to do a, my role, my role I see is you know what, I have a list of amazing um, faith leaders who are doing work around HIV, who are, you know, really making sure spaces are inclusive. Can I connect you to this person over here who I think would be a great passer for you to mentor and have conversations around. So, I think there's space there. I also think that there's new opportunities with at home HIV test kits, honestly. Um, and so, you know, we are 40 years into this HIV pandemic and we have amazing technologies and HIV testing technologies have been amazing, right? So you can get an HIV test if you go to a clinic where you get the results in less than 60 seconds, you can wait 20 minutes. We also now have test kits where you can do them at home. Right? And I think many faith institutions can be a place where you know what I know on sunday, I can go get, you know, my HIV test kit that I can do at home, that I can do a zoom party with my friends or you know, with other people from the congregation, um, along with my HIV, you know, education material and I know that my church has partnered with X Y Z HIV organization and clinic to provide support whether it's prep or getting into treatment HIV treatment and care. Um, and so I think there's various levels to do it um, in trying to really bring, you know, faith institutions which are so critical, right, who can bring the testing technology to people, but also help with that stigma that impacts whether people even want to get an HIV test or not. And I think this multi layered approach where you're working with leadership, where you are working with programming, you know, within the church committees, um, is a great opportunity for us to really expand HIV testing at, you know, this place, um, you know, at faith institutions, where are folks go, you know, regularly for the support validation and love that we all need. That's excellent. That's excellent. So, you know, we, we've talked about stigma, we've talked about um, in some ways structural issues that we'll talk about a little more later on. But I really want to uh just dive into for a moment this notion of data and HIV incidence, I'm in Atlanta and I feel like you know, in a lot of places the numbers are going down uh, but the numbers are not going down here in Atlanta. If I might add this little personal caveat, you know, as a pastor, I, I've told people this last year and the year prior to that I was doing more eulogies than I had done in all of The 15 years of pastoring my particular local church. And if I were to combine all of our congregations, all the churches that I am pastors that are part of our network, it is absolutely uh unbelievable particularly here in the south and so, you know, the data on HIV incidence and prevalence point to elevated risk for HIV exposure in specific populations, particularly amongst young black gay men. You know the question is and I really want you both to answer this and and starting with you Ron how can HIV risk be communicated in ways that acknowledge the elevated risk in specific communities. Um uh but but always some sometimes don't always prioritize behavioral risk uh or uh structural factors that we've we've just talked about if if you could try to try to answer that. Mhm. Yeah. You know, I think that question it is a layer question. I mean it's so hard, right? Because you know, I think about the example that C. D. C. I think was in 2016 came out with data that said it's expected that one and two black gay men will acquire HIV within their lifetime. And that statistic stunned people. And you know even now when I say it like it just hits you right and it feels so heavy and it is heavy. Um And um you know I think that sometimes our numbers make it seem like and make it feel like there is no hope and that HIV for too many folks in our community is inevitable. Um And I think that that has to change if we want people to test and I think the messaging around it at least for us what we try and do is you know name it as a racial justice issue right? HIV is a racial justice issue. This is not about what we are doing as individuals. Um This is about the systems that we live in. This is you know, the validation that you, you know, you have every day struggling as a person of color, as a trans person, as a gay man in the south. This is this is that right? This is just an outcome of that kind of heaviness that folks feel every day and living the life and trying to survive. Um, and giving some folks hope around it, right? And I think that's one of the things that's beautiful about the status neutral approach is that, you know, HIV is not a death sentence. Um, and whether you are HIV negative or HIV positive, there are actions that have to come after that. Um, and there's no value based with whatever actions that you have to do, right. Whether you decide prep is a good option for you and you want to start taking a daily pill or you know, whether it's going to be treatment as prevention for you and you're taking medications daily and with new medication pipelines coming out right where we have injectables and other ways that we think that we can support people living with HIV and people who are using medications to say HIV negative, you know, without having to do it take a daily pill. And so I think that it's the messaging that has to change, right? So that folks um move away from this kind of individual shame. You know, that's a company too much with the statistics of, okay, this is gonna be half of my community and you know, this many black people are gonna be dying this year and this many new para natal infections. I mean the data is really hard to see, you know, when you look down at the county level and see, okay, there's this number of thousands of people who are HIV positive and don't know their status or not in care. But I think that if we can remove the shame, remove it feeling like it's an individual outcome and because of something that you did but rather looking at as a systems change that it helps change the narrative. And I think you can bring hope to folks um a different kind of way than if we just look at the individual numbers Ron you. That's that's excellent. This this notion of hope, right? Uh this notion of hope, we need to hear that word more often. Or Orlando, can you uh take a stab at that question? I know it's very layered, especially something you brought up which was structure, structural issues. But yeah and and I actually layer that and get and I'm glad you brought it back to the structural piece. And I think uh brian made some excellent points And I think you can't help but look at that data. And as a clinician I often hear that in practice where you have young brothers 18, who are looking at you and saying, listen, the data is already saying this. And so they have this fatalistic attitude, this is going to happen to me anyway. Right. So why bother? And you know? And I think for us, if you can't help but think about the data in the south, like you mentioned Bishop and looking at a CIA expansion, the affordable care Act expansion. Those are structural issues that are linked in places where the A. C A C. A. The affordable care Act, right. Obamacare wasn't expanded. You see vast disparities in HIV prevalence i. E. In the South. Right? And so you can't decouple the structural issue from the individual issue of testing per se because they're one and the same. I will also say that one way that I've actually leveraged uh those sort of like data that is depressing is to explain to folks. Listen, if you know your status you can get on this regimen that protects you from getting HIV and that's an important uh power that you can retain for yourself. And so Tehrani is point again, we as practitioners, community activists and leaders in our own different fields. We especially black folks and brown folks who are all in this uh this calling who are also listening. We need to take and look at take stock and look at the disparities that we're seeing currently with Covid vaccine uptake and the access issues that we saw in terms of communities of color and then they blamed hesitancy on it and say we were hesitant when we really weren't. It was access. And so I want us to take imagine that and thinking of a structural barrier and then ask yourself, how do we get ahead of any potential disparities in terms of injectable modalities, bio medical prevention modalities like what we saw with with Covid 19 vaccines and that will help us answer those structural issues. That's excellent. That that I mean you perfectly segued and transitioned us to the next part of what we want to talk about. You all have been so phenomenal. Um Excellent. Excellent. Now now is an opportunity to ask questions to the panel and uh we want everyone to know. You can submit your questions via the button on the bottom of the screen. I'd like to invite darien and Maria back on the screen with us for our questions. I just want to ask a question that I think is really critical. I many people we all know people who have been infected or impacted by COVID-19. We all have been packed it in some way by Covid 19 but I find it fascinating that a lot of the discussion we're having about Covid 19 is the same discussion we've been having for 40 years around HIV and AIDS. And so um it's a it's a basic question. But I think obviously you all are experts around this. And so the question is what has been the impact of Covid 19 and the Covid 19 pandemic on access to HIV testing and care anyone? Oh dear. I'll just I'll just quickly that you know, in terms of some of the evidence, I think initially when Covid uh stop the world last year, a lot of you saw a lot of interruptions in terms of uh access to treatment, access to prevention services and of course when you know, we immediately thought just the same way we we pivoted to you know go learn from home work from home etcetera for a few people right that wasn't equitable in terms of um I think of a lot of black and brown kids who are going to be left behind because they had parents who had to go out and work in the middle of the pandemic. And so I didn't have the parents at home to do home school and the same way that I've seen with when everything pivoted to telemedicine and who had access to the internet and can access their care provider via telemedicine etcetera. And then to couple that with I still have patients who are hiding to take their medication, whether it be prep or A. R. T. Treatment. Imagine taking a telemedicine call at home with the entire family and no privacy and I think those are the issues that we hadn't thought about That that resonate with you last year. Yeah Maria can I ask you a question? This is a question from somebody who's participating and that is how how does someone disclose their HIV status? Like what are some of the basic 101 basic steps around disclosure. Um And and and also to layer that question is you know how how does someone ask a person about status? Should a person ask someone about the HIV status particularly when staying safe and trying to be safe in a in the dating context. I know those are like three big questions in one but you can take you can take all three and to the rest of the panel also. But a lot of questions, right? I think, um, it's such a personal choice, right? I think that it's a personal decision that you have to account safety, um, many layers to somebody in choosing to disclose whether they're HIV positive or not. And I think, um, some of the tips that I would say is to make sure that, uh, if you feel safe about doing so that you feel comfortable about, um, sharing something so personal with somebody and and to have a way to to also share with somebody else what the outcome was. I think that because the truth is that I've had many folks in my life to have this close to their partners. And, um, it can be very challenging to, to feel that you're gonna be rejected, to feel that you're gonna be, there's gonna be replications if you've already had sex. So I think it's a really personal, personal issue. But I think the first probably we need to make sure that you're in a place that you feel safe, that you feel comfortable about sharing that. Um, and I think also if you're asking somebody their HIV status, what is the reason you need to know this information? I think a lot of times unless your medical provider or you are engaged in a sexual relationship with somebody, I think maybe some, many cases not on our business. Um, but however, you know, when it comes to programming and finding programs for people is really the first question we asked because it opens doors for programs for certain folks. Yeah. You know, which is a catch 22. But it's a very um challenging process for many people to to have to disclose. Yeah. And I think that's why that that was one of the first questions that we, that we got dairy. And I want to ask you another question that uh, someone sent us. And you know, I think Maria just kind of segue into this question and that's about programs and incentives. What are more useful and successful incentives, uh, to get people tested. Gift cards are great. This is the part of the question. Gift cards are great, especially for groceries. But what can we provide the community to motivate them? What incentives? What programs that Maria was just talking about can help too, motivate people to get tested. You know, gift cards have been working, you know, that that's been working across the board. You know, I've done some of those programs myself were actually, we even incentivized folks who referred people who did some recruiting called social network strategy where folks could bring people bring some of their co workers or colleagues or friends to be tested and they were also incentivized, but you know, um, when, when we think about programming other things besides gift cards, like finding out what are some resources that community needs and also getting outside of just having people coming into our offices. Because many of our offices, you know, we're here in Atlanta, you know, we got marta is great. However, transportation can still be an issue and you know, some of our, some of our offices here for some of our agencies aren't necessarily the most accessible and reachable. So it's about getting out and even partnering with organizations that already having some programs. So say if your organization does not provide housing, there are a million and one organizations here that provide housing that provide, um, that give vouchers two votes that are seeking housing. And those are people that you need to partner with to say, hey, if you get an HIV test, we can help you, we can get you a voucher to get to get to get to housing. Are we help you? If you get an HIV test with us, you can give you a voucher to, to sign up for for something else for another program for to be able to get groceries. We can get you, if you get an HIV test, we can get you hooked up with someone who's a resume writer so you can get a job and then you can start getting your own money where you don't have to worry about coming to other folks trying to get so much support. There are so many programs that we can do. It's just about being innovative and it's also about partnering, you know, you know, well everyone loves determined where all wasn't built in a day. That is true. Rome was not built in a day and it was not built by one person. Yeah, that's the innovation and partnership. Yes. Yeah. I think also, you know, people that are developing programs have the ability to two Right this into their programming, where it's not the 5, $10 where you're giving somebody $200 Towards your rent or your, you know, where there's more equity and the resources that you're giving folks, we can start writing these things into our program development to our grants. So I think I invite everybody that's watching the sitting outside of the box to propose that you're going to give somebody $1000 if they're connected through a year through your program. To think to really help folks um, get out of the current circumstances they're in uh by providing real resources. Yes, that's excellent. Ron you, I have a great question for you because I know of the great, amazing work uh that everyone is doing, but particularly you, I think this question is, is tailored for uh your answer and that is what are some successful HIV testing initiatives that you think can or have made an impact. And you know, I'm taking notes on this because I know that, you know, the collective of the panel here, you all are involved currently in an amazing initiatives and so uh this is probably going to be the last question so we can all add to this, but Ron you, I'm very curious, what do you think are some successful? You know, there's a lot of HIV testing initiatives. What do you think is a successful HIV testing initiative? I think that there's like you said, there's so many um, and I'll name a couple that I think are really innovative, but I'll say at the heart um like test for HIV testing initiatives, that I've seen that at the core of them being developed by community, you know, it's the people who are most impacted, who are from the city, who are the people that you're trying to get in the door to do the HIV test, they help drive what the program is and they helped design it and dream it up. And so I think that that is always a key kind of component and that's where this innovation comes from. Um, it comes from people's lived experiences um, and I, you know, I think we've seen some great ones, like I love the campaigns that have HIV testing campaigns that have been like test to get a concert ticket. Obviously this is before Corona, Um, but you know, the city of Houston used to do an amazing one, um, where they would have like hip hop concerts and people would test to be able to participate and I think that those are great initiatives. Um, I love the social networking strategies that people do where they become, Well, they where they start employing the people who are helping drive people into testing, right? So, you know, you bring five people in, you get X amount of dollars, but then they're gonna start training you so that you can become a peer navigator in the organization and do other programs. And so I think that those are always successful and they do a great job, usually not just like finding people who are HIV positive and don't know it, but also keeping them into care because it's being ran by people who are most impacted by, you know, your friends who actually brought you in, the people that you trust, uh that you know, that are in your network, your community to help kind of drive those programs. We've seen really great HIV testing initiatives at hBc US as well, um and you know, I think that you have to shout out those HBCU s have been doing this work, who, you know, I've seen people do things around um uh homecoming, um you know, we have homecoming um coming up, lots of things are going back to in person and so I think trying to find places where our community finds joy and bringing HIV testing there, whether it's, you know, here goes the number to call and we can come to do HIV testing to you or, you know, you can come to our clinic or we can do HIV testing right here or we can give you a home HIV test, but there's so many different options. Um But I think at the core of it, it's, you know, letting the folks in your community who you want to get HIV tested, asking them what do you want to do, where would you like to get tested at, what would incentivize you to get tested? What kind of program that would help that you would want to come to? Um that when programs are developed for us by us, um that you're going to have more impact and find more people who don't know their HIV status and use this as an entry point into responding to HIV, whether it's going on to prevention um for people who are HIV negative so prep or going into care um and finding your support system and your amazing doctor who's gonna, you know, be with you um as they help maintain your health. That's excellent. That's excellent. So I I want to ask every Panelist one last brief comment around what is the takeaway message from this conversation? Like what is the takeaway, what what is the sound bite? What is the thing that we want people to leave this conversation with? I guess I will say um don't be afraid of getting the test done. Um Having that knowledge is powerful because then you can then determine what sort of biomedical prevention modalities that you can use to either one prevent you from becoming HIV infected or to enter care immediately so you can live longer healthier lives. So don't be afraid of the test. Excellent. I think for me will be to get tested and also to support the leadership of trans community, to support them in the implementation of what works for them or worse for us. Um yeah, that would be my message. Excellent. You know, I would say stay encourage. Don't live in fear. Don't let fear hold you, you can be scared, it's natural but don't stay in that fear. Walk in faith, walking courage. And you have a support system. There are so many people out there that want to support you, even if you don't know anyone right there around you. Social media is your biggest friend and we are all on social media, find us all and we'll be here to encourage you just the same. Yeah, I mean I would uh end this off by saying that we have so many biomedical tools that we didn't have 10 years ago, 20 years ago, 30 years ago and surely not 40 years ago um when HIV first entered the world and we've lost generations of folks um to this pandemic, um and we don't have to anymore. And the first step in getting to the end of HIV, which we can do um is testing uh and that we should all be testing regularly um that uh hopefully this conversation inspires folks to find people in your text message groups, people in your church, people, you know, in your facebook chats and encouraging them to test as well. Um it's an important um it's really the first step, the most important step really, um in this pathway towards us getting to an end of HIV, that's excellent. You all give me such hope. I am leaving this moment with hope and I know everyone else's thank you for being our inspiration and for being our light. I would like to turn this over to the hands, the very capable hands of Mr chauncey Watson. Yeah, thank you Bishop, thank you to our amazing panelists today at this conversation leaves me not only inspired, reinvigorated but also revitalize at the work that is still ahead of us to continue to get people tested, but to really remove the institution that is associated with HIV testing that includes the stigma, the barriers, the obstacles and just put into the hands of ourselves. We will be the change we want to see in the world and we will be the change that will start and strike and end HIV on behalf of Gilead Sciences. It's been a pleasure to have you on today's program. Please continue uh for all of the support you've done and together let's work towards empowering people to know their status. Have a great afternoon. Thank you. Mhm. Mhm. Created by
